Tag Archives: mental illness

Art, Mental Health, Mental Illness

CRAZY OR NOT, HERE I COME

10 Comments

first published at https://www.blog88.org

by Phoebe Sparrow Wagner

       I used to be “crazy.” Labeled CMI, chronically mentally ill, prone to psychosis, i was a revolving door mental patient, one who spent almost as much time in her adult life in the hospital as out of it. Although I had various diagnoses, the main one was schizophrenia, or the variant of it, schizoaffective disorder that some claim combines features of bipolar disorder and schizophrenia. Over time, as I bounced from hospital to home and back to the hospital the doctors would tack on other labels as well, like PTSD and different personality disorders. 

     Although I occasionally was admitted “voluntarily,” most of these hospital stays started out involuntary, until nurses, brandishing paper and pen, advised me of my right to sign in as “voluntary.” I would sign, but this did not mean I could leave because not even voluntary patients could leave at will, not in the state where I lived at the time. If you wanted to leave before the doctor thought you should, you had to sign a  paper stating this. Then wait to see if the doctor challenged the paper. If she did so within three days, you could be taken to probate court for a judge to hear the case. This was never good. We patients knew the judge virtually always sided with the doctors, since we were by definition “crazy” and could not know what was good for us.

         But let me go back to the schizophrenia thing. I heard voices, most of the time. They were usually awful voices, voices that jeered and mocked and threatened me, voices that led me to burn myself dozens of times in an effort to rid myself of them. I heard and saw messages to me in everything, from the television and radio ads to newspaper headlines. I saw tiny scintillating red lights that swarmed about me like a cloud of gnats, and which I called the Red Strychnines. I saw Alan Arkin, the actor, and Senator Joe Lieberman dressed as Nazis supervising a conveyor belt sending bodies to the crematorium, and I heard music, people chanting in low voices, unintelligibly at first but later changing to threats. As is often the case, these voices and visions led me to distorted thinking, and to “paranoia,” based on what I heard and saw.

      There were other voices. Brother Luke was the name I gave to the one good guy in the lot. He talked to me about time and space and humanity and love, and I felt safe with him. And there were the voices I called the Little People, to distinguish them from the main voices, the bad ones. The Little People occupied objects I used, like my comb or paint brushes and they would talk to one another but would almost never speak directly to me. I could listen in on their lives and concerns, but mostly could not or did not want to interfere. They kept me company with their constant chatter, but they were never threatening or upsetting to me.

         The bad voices did bother me, however, and I would often end up in the hospital because of them. But living in a hospital is as bad as it sounds, with horrible food, and little to do, and really no help at all except the constant pressure to take medication, which could turn to threats if you didn’t comply. Worse, if you got out of line, that is, if you got too loud or angry at being kept there or treated by force,  they would do things like have a team of security guards strip you naked and lock you in a freezing seclusion cell alone, or shackle your wrists and ankles to a bed, leaving you like that for hours, even days at a time. Or both at the same time. I know this because everything I write about happened to me and on multiple occasions.

        Staff called seclusion and restraints measures of last resort, claimed they were only employed when necessary to maintain a patient in safety, but we patients knew they were used almost always as retribution and for punishment. Even SAMHSA (the Federal agency concerned with such things, the Substance Abuse Mental Health Services Administration) knew that restraints and seclusion were not helpful, and were not used as a last resort at all, as they stated in one of their pamphlets:

“… there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable (Haimowitz, Urff, & Huckshorn, 2006; NASMHPD, 2003; SAMHSA, 2003).”

In another publication SAMHSA writes:

“Seclusion and restraint were once perceived as therapeutic practices in the treatment of people with mental and/or substance use disorders. Today, these methods are viewed as traumatizing practices and are only to be used as a last resort when less-restrictive measures have failed and safety is at severe risk.”

And this:

“Restraints can be harmful and often re-traumatizing for people, especially those who have trauma histories. Beyond the physical risks of injury and death, it has been found that people who experience seclusion and restraint remain in care longer and are more likely to be readmitted for care.”

         But both seclusion and restraints are still used and increasingly so as staff to patient ratios are decreased in psych hospitals and units, with more patients per staff and many staff members poorly trained, if at all. 

         I don’t believe mental illness is a real entity any more, I don’t believe in schizophrenia or manic-depression or depression or the notion that anyone’s personality can have a disorder. I don’t believe that psychiatry is a valid science or even an art worthy of the name. And I do not believe that we are right on the verge of finally (for the umpteeth time?) discovering the truth about the origins of “mental illness”. We were told the same thing many times before. For instance when the “miracle of psychosurgery” maimed or killed thousands by “helping” them with ice pick surgery and pre-frontal lobotomies. We were told of the miracles of shock, when a variety of drugs as well as electrical current applied to the brain “helped” thousands more, even when bones were broken and people died. And we are still being fed the lie that neuroleptic drugs like Thorazine and Haldol  and the new generation of similar drugs like Zyprexa and Risperdal are in fact “antipsychotic” and are an effective treatment for, well, whatever ails you…*

     But it was not true that lobotomies helped anyone, shock treatments, which induce grand mal seizures, are by definition brain damaging, and the drugs rarely help more than they hurt, since it has been shown that long term they create more illness, chronic illness, than they ever alleviated. 

        We should have known this. Back in the 50s when Thorazine was seriously referred to as a chemical lobotomy (which was seen as desirable) doctors noted that the drug was not in fact a treatment that helped the person who took it, reducing symptoms or restoring health. What they saw was that those given the drug became subdued, even immobilized into the infamous Thorazine shuffle, and more “compliant.” This helped the nurses be nurses, as the formerly disruptive were now bludgeoned by Thorazine into mild, shuffling sufferers. They were no longer mad-men or mad-women, no, they had been disabled by the drug and  could now be nursed as  true patients, patients who were sick and needed nursing care.

       I have been given high doses of Thorazine and know from experience that it is a horrible, deadening drug. I have been forcibly treated with soul-killing Haldol and Mellaril and Stelazine and the others, and when Clozaril came out I was given that (thankfully, because the side effects were horrendous, I developed agranulocytosis, twice, so I was taken off it) and then Risperdal and Zyprexa and again, most of the others that later came onto the market. None of them helped me or reduced the voices or made me happier.

     Two things did help. Art, which became my life’s passion, and therapy, therapy not with a psychiatrist or an LCSW working under the auspices of a psychiatrist, clinicians who saw only so-called mental illness, but with a woman who does not even have a license to practice in this country. She never saw schizophrenia or bipolar or personality disorders in me when we talked, she saw me, the me beneath all the labels, and she saw me as good, she saw a good person, not the “Satan’s spawn” that the voices derided. She saw me healthy and thriving, even before I did. She did not want to control me, in fact human freedom was and is her main concern. But she accepted me as I was, and her unconditional acceptance and love (for what else was it?) gave me back a sense of self and the self-esteem to thrive and move forward into my life.

     I want to say a word about my falling in love with art. I became an artist very suddenly, overnight, in 2008, and this was a miracle in my life. I did not at the time understand how or why it happened, but I woke up one morning with a voice inside my head (all the others seemed to emanate from outside me) telling me, “You must build a human, you must build a human.” Well, I thought, this voice is not telling me to harm myself, so what’s the problem with obeying it? So I set out to build a human, and did in three months, create a life-size papier mâché woman, seated in  a paper mâché chair.

Decorated Betsy

Later this won a prize and was bought by an art collector/friend. But it seemed to unleash something in me that drove me to make art constantly from 2008 onward.

It was only in 2017 and later in 2020, when I managed to get off all my psych drugs, that I realized I had also stopped doing art. Was it possible that the drugs were responsible, then, for the miracle I could no longer live without? I went back on them, and within a week or two I was doing art again.

And a second trial of slowly stopping them, which also resulted in my stopping my practice of daily art, led me to the conclusion that without at least one of these drugs, I could not do art. And art was my raison d’être, something I could not live without.

After some lengthy experimentation, I finally determined that it was a drug called Abilify that had produced the miracle of allowing me to do art. Abilify, which I had started in 2008, and which is technically in the “anti-psychotic” class of drugs, is also used along with antidepressants purportedly to help in depression. Nowhere has anyone ever noted its use in stimulating creativity. But that’s what it does for me, and it does so reliably.

Off Abilify, I do no art. On it, on a “therapeutic dose,” I can access my creativity in a way that I can no longer live without. But it decidedly does not act as an anti-psychotic, or as an anti-depressant, because I’m fine these days, and all my “symptoms” — a term I never use except in quotes — all the voices and visions, the distorted thinking and “paranoia” I used to experience are gone, whether I take the drug or not. 

       I believe that the extreme mental states called “mental illness” all have their origin in trauma, childhood and otherwise, and often these traumas are re-enacted and reinforced by what is absurdly called “psychiatric care.”

      Forced medication and forcible treatment, restraints and seclusion and involuntary commitments, all these are liberally employed, as if shackling a person to a bed or chair for hours at a time, or holding someone down for forced injections, is an act of compassion. Note that these measures are undertaken most often against poor people or minorities, and buttressed by the same lies about “anti-psychotics” and “anti-depressants” that are also foisted on the general public. 

      If psychiatry was a profession entirely dedicated to the truth about each individual and the truth about trauma, and was not so tied to the mercenary interests of the pharmaceutical companies, maybe today it would be a healing profession and not the corrupt, pseudo-medical cabal it is.

       The profession could change, become what it purports to be, but this would necessitate psychiatrists looking honestly at history. Alas, I doubt that those who have arrogated so much power to themselves will ever relinquish it, much less acknowledge with remorse the immense harm psychiatry has inflicted on the world.

     ————————————————————-

* Dr. Heidi Fowler, a psychiatrist at HealthTap wrote this: “Abilify (aripiprazole): Abilify (aripiprazole) is used to treat Schizophrenia, Bipolar Disorder, as an adjunctive medication for recalcitrant major depression; autism spectrum disorders. Off label uses include: dementia; alcohol abuse/dependence and the following for which there are no trials or minimal efficacy: Generalized anxiety disorder, Social phobia, ADHD, agitation, Eating disorders, insomnia, borderline personality disorder.”

* If you subscribe to Quartz you can read this: https://qz.com/293932/how-this-antipsychotic-became-americas-best-selling-drug/ 

*Another article on Abilify: https://medtruth.com/drugs/abilify-side-effects/ 

*Abilify became America’s best-selling drug in 2013-2014, and it was used in myriad ways, not just to “treat” schizophrenia or depression.

anti-psychiatry, French, Health, Mental Illness

lES MALADIES MENTALES? MENTAL ILLNESS, DOES IT EXIST?

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Français then English, paragraph by paragraph.

Pourquoi Il ne faut pas accepter les diagnostics de la Psychiatrie, ou

La normalité n’existe pas!

Bien que les psys parlent des maladies mentales comme si elles vraiment existent, les termes qu’ils utilisent nous montrent que les maladies mentales sont imaginaires et mythiques. Comme tout le monde le sait, les constellations célestes ne sont qu’imaginaire et ce qui constitue Orion pour l’Ouest, c’est quelque chose de différent dans l’Est, qui utilise tout à fait différemment des éléments célestes. Les psys utilisent ce terme aussi, “les constellations”, et ils ont construit leurs constellations d’une manière complètement analogue.

Although shrinks speak of mental illnesses as if they really exist, the terms they use show us that in fact “mental illnesses” are imaginary, the stuff of myths. As everyone knows, the nighttime sky is made up of constellations that are imaginary and that what constitutes Orion for the western world would be meaningless to someone in the east. The Chinese have a zodiac but it is entirely different from ours. Shrinks use this term also, constellations and they have constructed their constellations of mental illness in an entirely analogous fashion.

Parmi des centaines de comportements humaines, la conférence du DSM, composé de  psys, a choisi ceux qui vont ensemble (mais pas toujours et pas tout le temps) pour constituer une maladie mentale comme la schizophrénie ou la bipolarité ou la dépression. Comme dans les menus des restaurants chinois on choisit quelque chose de chaque groupe de symptômes — on peut être trop agité ou trop léthargique, ou on peut entendre des voix ou avoir des pensées “différentes” qu’on étiquette les délires, ou on peut faire les choses trop vite ou trop lentement etc— mais en utilisant une formule de leur création, en trouvant ces constellations dans les personnes/ patientes les psys peuvent alors diagnostiquer n’importe qui.

Among the hundreds of human behaviors possible, the committee of the DSM, all shrinks, have chosen those behaviors, (called symptoms but they are really just behaviors ) that go together —but not always and not all the time—to make up a mental illness like schizophrenia or bipolar or depression. Just as we choose food at a Chinese restaurant, or used to, they choose something from certain groups of symptoms — one can be too agitated or too lethargic, one can hear voices or have delusions, or one can do things or speak too fast or too slow etc — but using a formula they created, finding these constellations in the people who visit them, their patients, these shrinks can then diagnose anyone at all.

La chose la plus importante à savoir c’est qu’exactement comme les motifs ou dessins imposés dans le ciel que nous appelons les constellations célestes, ces constellations psychiatriques sont basées dans l’imaginations (assez limitées) des médecins du DSM. Les constellations célestes n’existent que dans les histoires et les mythes grecs, c’est à dire dans l’imagination, et le fait que tout le monde les voit dans le ciel ne dit qu’une chose, c’est que nous avons appris à les voir. Mais nous voyons les constellations psychiatriques et les maladies mentales parce que nous avons appris les voir. Mais elles existent seulement parce que nous les avons accepté sur parole et leur réalité de plus. Nous nous sommes dit, « oui, ce que je vois, c’est une chose réelle cette constellation, cette maladie mentale, et je suis d’accord. » Mais les chinois ne voient pas Orion, n’est-ce pas? 

The most important thing to know is that exactly like the imaginary drawings superimposed on the starry sky, psychiatric constellations are also based in the imaginations (perhaps rather limited) of the DSM committee shrinks. The celestial constellations only exist in the stories and myths of the Greeks, which is to say, they are imaginary and the fact that everyone in the west “sees” them only suggests one thing, that we have been taught to see them, these artificial groupings. But we “see” psychiatric constellations, the so called mental illnesses, only because we have also learned to “see” them. Their reality depends on the fact that we have been taught to see them and accept their “reality”. We have said to ourselves, “yes, what I see, it’s something real, this constellation, this mental illness,  yes, I agree.”

But ask yourself, do the Chinese “see” Orion? And if not why not?

Et il ne faut pas voir ou accepter l’existence réelle des choses, des constellations ou des maladies mentales. Si on disait que faire les choses vite ou lentement, ce n’est pas un symptôme mais juste une différence humaine, qu’entendre des voix ou que voir les choses imaginaires, c’est un don pas un symptôme, et que ces deux tendances ne sont pas liées dans une constellation pathologique, les soi-disant maladies mentales se révèleraient ensuite n’être rien de plus que de l’imagination, une fantaisie peut être, mais une création imaginaire de psychiatrie, quelque chose qui n’a jamais existé vraiment.  

It is not necessary to either see or accept as real these celestial constellations or the psychiatric ones, called mental Illnesses. If we said, for example, that doing things fast or slow, that’s not a “symptom” just a human difference between people, if we said that hearing voices or thinking different thoughts is a gift rather than a symptom, and that these human differences are not somehow inextricably linked in a pathological “constellation”, the so called mental illnesses would reveal themselves to be nothing but imaginary, a fantasy perhaps, but fundamentally an imaginary creation of psychiatry, something that actually never existed.

La prochaine fois je vais discuter la réalité de la souffrance mentale, qui n’est pas la même chose qu’une maladie mentale.

Next time I will discuss the reality of mental suffering, which is not the same thing as a “mental illness.” 

Health, Mental Health

“Schizophrenia or Suggestibility ” by David

7 Comments

Sorry. Sorry! mea culpa!!! i meant to introduce this post with this: “David” wrote me with the following essay about his experience,which I promised to post for him on my blog. It follows: 

” I saw Lady Quixote’s story printed out at the Hearing Voices meeting in San Francisco.

 

“What struck me was how similar was the story she told to my story. When I was a small child I did self hypnosis as a hobby.  Later as a young teen I met a senior citizen from the Unity Church who provided me a lot of books about new-age psychic topics. She talked with me about automatic writing and spirits. I did many of these things in hopes of becoming psychic.

 

“Through my high-school years I continued to be interested in these things but only when the college experience overwhelmed me did I become preoccupied with the voices in my head.  I would look for guidance in things as simple as where to walk.  Since walking to class was a prerequisite to attending class, if I was guided instead to walk in the woods, I failed at college.

 

“In addition, throughout my psychic explorations there were instances where there were definite connections between my mind and the rest of the world.  Although the number of true experiences were far less frequent than the imagined ones, they reinforced my beliefs.

 

“After I returned to my parents’ home I had the typical delusional experience of believing that there was a direct connection between the universe and what I was thinking and hearing in my head.  Unfortunately what I was hearing was based on what I thought abut myself and as I spiraled downward, I was told that I had to kill myself.

“After getting out of the hospital and the halfway house with a diagnosis of schizophrenia, I returned to my parents’ home.  A few years went by with little change but I began to doubt the veracity of my voices and found that I could dismiss or ignore them.   They eventually faded away into the benign parade of inner thoughts.

“The thing that struck me after thinking about Lady Quixote and me is that there are some states of mind called schizophrenia that would better be described as suggestibility.  In the old days folks like us were seen as having been possessed by demons, and perhaps the exorcisms actually worked when the people believed strongly enough in prayer and calling on Jesus to drive the demons out.

“I think that it is a shame that this type of diagnosis has not been made by treaters because it would be helpful to folks to understand that they can be liberated from their troubles in a much more straightforward way, as  Lady Quixote was.

“Because, like her, I had some actual experiences that could be classified as psychic, having a diagnosis that labeled my inner thoughts as strictly delusional confounded matters.  The psychiatric community does not acknowledge that some of us have to deal with both real experiences and our overactive imaginations. They are trained in the practice of science, which is opposed to the various phenomena we call metaphysics.

 

“I am happy that my inexplicable experiences usually involve rather mild, not very intrusive thoughts, as opposed to noisy voices.  I try to practice good mental hygiene to keep the inner critic mostly at bay and avoid overstressing myself.  It has been about 40 years since I was troubled with my inner voices.

 

David”

Abuse, Health, Psychiatry

I Will Be a Gadfly or Die!

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How very similiar Michael and Charlie look...and and no wonder, since they share the same sadism genes!
How very similiar Michael and Charlie look…and and no wonder, since they share the same sadism genes!

In the next few days I will be writing and having a guest post from someone but today I want to write about a frustration that has got my goat bigtime. It has to do with the letter that I wrote to Kathryn Power, “bigwig” at SAMHSA or, for those of you who wonder what the letters stand for, the Substance Abuse Mental Health Services Administration, for Region One, which covers the New England region.

 

Apparently she took my letter very seriously, which I did not know. This may have been because I never received her reply, if she sent one, having given her the wrong return address ( I did not know the proper one where I was to be living at MRR in Brattleboro.) Or it may be because she failed to copy me on any of the emails she sent to any of the parties she subsequently wrote to, both in the Federal government and at the state level. Whatever the case may be, apparently she wrote to several officials, including the Connecticut Department of Mental Health and Addiction Services and possibly the Department of Protection and Advocacy ( which dumped me completely after assuring Susan Stefan, Atty at law known for her work against seclusion and restraints, that they were working closely with me). I never knew this, nor have I learned the outcome of these contacts. I only just today received faxed records of these initial emails.

 

So I know that Ms Power contacted Mirian Dephin-Rittmon who is the new commissioner of mental health in Connecticut. I would like to think that Ms Dephin-Rittmon responded somehow, but I have no such evidence, and if the response from Patricia Rehmer, her predecessor, is any hint of what I could expect, then the answer will b: NOTHING, nada, zilch, a big fat zero. And why is that? Because in Connecticut the Commissioner of Mental Health and Addiction Services, while she may nominally be serving all citizens with mental health problems, actually has no such mandate. Not at all. She serves in fact ONLY those who are hospitalized in STATE facilities, which are extremely limited, and how lucky for her, and in fact for them, because they get protections that none of the rest of us ever got.

 

It was not that we were not indigent and also on Medicare and Medicaid, and also on SSDI and possibly on SSI. Most of the patients at general hospital psychiatric units in Connecticut, if they are repeat offenders of any sort, are usually on assistance of this kind. How could they not be? Most have been “disabilified” – that is, disabled and made into disabled-thinking persons — by medications if not by illness and by the systematic undermining of their personhood by the State. (I know, that is an argument that needs to be enlarged, but elsewhere, elsewhere…) But they are not in State facilities, decidedly not. Why is that? Because courtesy of the State Government, most state facilities, especially for adults, have been closed down or turned into prisons.

 

So if you need a hospital, you must go to a general hospital psychiatric unit where the Commissioner of Mental Health and the Department of Mental Health actually have no jurisdiction or sway. Literally the only way you can get into the safety zone of a State Hospital, that is to say, into the ONLY state hospital that now exists in Connecticut, Connecticut Valley Hospital, is by being thought such a bother to the nursing staff at a general hospital that they want to get rid of you, and they send you off to CVH for “longer term treatment.”

 

But this, mind you, is a punishment, it is not something that they do out of caring or attempts to render better treatment. Not at all, and I should know. After all, I have been threatened with such “treatment” several times, and the last time was when I was at New Britain Hospital in 2014. There, because I was labeled “a borderline” and therefore dismissed as manipulative and dramatic. Every word I said was disregarded…Nothing I could say was taken seriously. And every act was regarded as willful and deliberate. So they could justify punishment and torture as my just desserts, and they tortured me by dragging me to the seclusion cell for swearing under my breath, and four-pointed me for hitting my head lightly against a wall, after they stripped me naked in the cell and I begged for a blanket they pointblank refused me ….

 

You see the picture? I was “so impossible to deal with” that they were going to “send me away” as punishment and in revenge.

 

We all knew this, we all knew that CVH was the last stop, their last resort and final punishment for those of us so obstreperous as to object to their outrageous brutalities and keep objecting rather than bow our heads and submit. In the end, because I was so determined to get out, to escape to Vermont, I did, I gave in and gave up and submitted, and it worked. I played their game and got out of their abysmal unit. I submitted, for which I cannot forgive myself…

 

My point here though is that it is only when a patient has been deemed such a pain in the ass that she is sent away, sent down the river to CVH that Pat Rehmer or Miriam Delphin-Rittmon ever comes into the matter. Before then, they are not interested or concerned with what happens or happened for that matter. They do not give a damn. Not that they don’t care about torturous seclusion cells or four-point restraints in general, it just ain’t their juris-my-dicktion to care about what happens to patients in city hospitals. Sorry, but it ain’t. So they don’t pay attention. They just can’t and so they don’t. It is, as my friend Josephine says, always as if newly minting the expression, what it is!

 

That said, there is Capitol Region and the Connecticut Mental Health Center too, but they serve exclusively the uninsured, so that of course was not for me, who have been covered by Medicare and Medicaid for years. So lucky me, I could luckily go to New Britain General Hospital and be tortured by the likes of Michael E Balkunas, with utter impunity because DMHAS has no oversight or jurisdiction over these psychiatric units, NONE WHATSOEVER.

 

Did Kathryn Power not understand this when she wrote to Miss Miriam? Apparently not. She might have believed that the Commissioner of Mental Health in Connecticut could or would do something to help a mentally ill elderly citizen who had been tortured in a psychiatric unit in Connecticut. Foolish Kathryn! And then maybe she thought that Protection and Advocacy could be called upon to help me as well? Oh, what a sad, sad day for Ms Power when she learned, or did she, that P and A in Connecticut has no interest in helping anyone? Did she really think I had not applied myself to anyone for help before I went to her? Where does she think I have been for the last year? Doing nothing? I have tried and tried and tried and tried. But no one answers and no one does a thing!

 

Oh, I could laugh if I were not so broken and so sick at heart. But I will not let the fuckers win because then the torture will just continue unabated. No, I will continue to nip and snap and irritate Mikey B. and the nurses at W-1 at HOCC in New Britain until they themselves cry “uncle” and change their ways. I will not stop until they are stopped in their brutality and stop hurting people. I will never cease this campaign until I know that patients at W-1 are safe from harm or W-1 is closed down and I am certain that Dr. Balkunas has lost his license for good.

 

But the worst thing was that Ms Power finally sent the letter to the Office of Civil Rights (OCR) in Boston which was directed to open a Complaint! Yes! But just whne I had hope for this, bizarrely enough, they closed it on the basis, get this, that my complaint “alleges abuse at MANCHESTER MEMORIAL HOSPITAL IN APRIL OF 2008″ — Say what?????? Huh? !!!!! My letter does no such thing. It never mentions Manchester Hospital at all.  Why would it? I had never even been there in 2008 or before 2009. And the first time I was EVER at MMH was in October of 2009, so WTF??? THis is so bizarre and so outrageous and so disgraceful a reason to deny my complaint a basis to go forward that I have had it…To say in the first paragraph that I allege torture at New Britain Hospital in 2014 and then in the fourth or fifth paragraph to somehow segue in this extreme non-sequitor to alleging something in Manchester Hospital in 2008, when I was NEVER THERE…just gets me down completely, because  you know, no one in the chain of information who saw this and they did, NO ONE CALLED THE OCR  on this or told them to get their act together and fix their mistake,.no they essentially let it go and made me suck it up…

FUCK THE THE ASSHOLES I cannot take this shit any longer.  FUCK THE WORLD I WANT TO GET OFF! I have had it. I’ve had it, No one gives a damn about anything…I give up.

Art, Health

Radio Show about Schizophrenia

3 Comments

Leonard Lopate Show on Divided Minds (2005)

https://www.wnyc.org/radio/#/ondemand/51446

Hi everyone, i hope you will enjoy hearing this show, despite the fact that it was recorded several years ago. I plan to update you all on my progress since then and about M–V— in Brattleboro, where i live now. But it may take some time to get that organized and myself in gear. So in the meantime,  i found this older radio broadcast that most of you likely have never heard, being out of the NYC area at that time.

For myself, it has been nice to hear my twin sister’s voice and her sounding so very kind and sweet to me. I have not felt that from her or about her in such a long time…and i dunno whether it is me and just a perception, or a real thing. But i wish i had her back in my life in some way that could work for both of us without either jealousy or anything that threatened either of us. (I mean jealousy on her part, not on mine…)

Anyhow, i hope to write a longer and more uptodate post soon, but thank you all for sticking out my long absence and waiting for my return.

Love

Pam

Ps this table below was made from cardboard and fabric and paper and glue….largely because we have only beds in our rooms and i needed somewhere to store some of my things. So the table hides a small storage compartment under its removable top.

Cloth mache table made by pamela spiro wagner
Cloth mache table made by pamela spiro wagner

Art, Health

Hospital Art #2 – Rebus : pictures instead of words

7 Comments

This was done with bendable safety ball point pen, all that the first hospital unit would permit me to use.... You read it from the left bottom upwards following the arrows. Hint: the upper left is a knot, not just wood.
This was done with bendable safety ball point pen, all that the first hospital unit would permit me to use…. You read it from the left bottom upwards following the arrows. Hint: the upper left is a knot, not just wood.

Health, Health Care Reform, Psychiatry, Seclusion and Restraints

Open Letter to Kathryn Power of SAMHSA

9 Comments

Dear Kathryn Power,

In May 2014, mute and psychotic, I was taken to Hospital of Central Connecticut in New Britain’s Emergency Department by ambulance. My visiting nurse, in concurrence with my outside psychiatrist, had called 911, concerned about my safety and my ability to function because I had not spoken for weeks and was not taking adequate care of myself. I was not agitated, instead, I was unable to speak and slowed down rather than anything else.

More than a year has passed since then, so instead of relying on memory, I will paste here what I wrote shortly after my subsequent hospital stay, with edits for clarity and concision. Some has been taken from the secret journal I kept in that hospital, a journal which I was forced to scribble on pieces of torn-up brown paper waste basket liners, surreptitiously mailing them to a friend immediately the moment I finished writing. I  had to do it this way because a housekeeping staff member had told me that nurses instructed her to throw out everything in my room, including first class mail, each time they found a reason to seclude me, which was frequently (nearly every day in fact, and sometimes more than once a day.)

More on this follows.

But first let me tell you what happened in the Emergency Department. I came in by ambulance. I did not want to but was given “either the easy way or the hard way” choice by the police who came with the 911 call. I did not resist or fight, nor was I restrained in any way in the ambulance. As I said, I was mute, which had deeply concerned my Visiting Nurse, and mostly passive. I merely handed the EMTs my medication sheet and my detailed but clear Psychiatric Advanced Directive. This is critical as on page one and two are clearly typed vitally important information about my trauma history and how to deal with me in a crisis, including provisions for when I might be mute.

 

The first page of the ED chart states that availability of my Advance Directive is “unknown.” Nevertheless, the ED triage note states, with apparent disapproval and resentment, that “pt presents with detailed instructions on how to provide her care..” i.e. the psychiatric advance directive. This seems to have been immediately disregarded, as insulting to their knowledge…

 

ED Nurses note: “Seneilya… RN Assumed care of patient. Patient arrived via EMS after VNA called for increased anxiety. EMS reports patient refused to speak but wrote down, “Sunglasses block hate. I don’t want to hurt anybody.” [*sun-glasses are “hater-blockers” yes, but they block other people’s hatred. The RN never got my point and I was mute with no way to communicate the distinction…] “On admissions patient refused to speak to this RN. Patient pointed at her head when asked why she was here. Patient nodded “yes” when asked if she was hearing voices but refused to answer other questions. …(next sentence indecipherable)

 

Report given to Beth RN who assumed care of patient…”

 

At 15:19 Beth RN wrote the following:

 

“Pt not responding verbally to this nurse, this nurse looked through her art book and placed it back on her stretcher then pt picked it up and slammed it down on the stretcher and pointed her finger at the book. Unable to get pt to communicate. Pt pulled sheets over her head. Pt still in street clothes, will pt [sic] as is until examined by MD.”

 

What is not said here is that this nurse, “Beth” never asked me whether she might look at my art book. She just took it. She refused to allow me any other means of communication, except  speech. When I was unable to do this, she did not inquire as to why I did not speak nor apparently did she attempt to make inquiries from anyone else why this was so. If she had provided me with means to write I might have been able to tell her what had happened in the previous two weeks at home. Instead, she appeared to become angry and from then on refused to permit me any mode of communication other than the one she preferred.

 

I was later given a hospital gown and told to dress myself or I would be forcibly assisted in doing so.

 

Beth RN records what happened after a meal was given to me that I did not eat (it was not vegetarian).

 

 

“Pt ate nothing,” Beth RN reports, “[but she] wrote messages with ketchup and French fries, [saying] ‘I need a crayon.” [***] This nurse told pt she needs to speak because she can, pt threw everything on her table on the floor, food juice, etc. Pt then picked up fries from the floor and started eating them and gathered more and putting them in the bed with her and kicked the other food away in the OBS area.”

 

“Pt went to the BR, seen coming from the BR with paper towels then pt observed writing with her finger on a paper towel with something, first thinking it must be ketchup, then maybe jelly, then this nurse got up to check and pt found to be writing with her own feces, some paper was able to be removed, other paper with large piece of BM pt threw at this nurse. Pt moved to room 42 [seclusion] then pt got OOB and snuck around corner and tried to attack this nurse [?***] from behind, [public safety was able to get to pt first,***] pt to be medicated and restrained. Pt licking feces off fingers, would not let nurse wash her hands…”

 

In point of fact, fact I never attacked or even  tried to attack the nurse as you will see.

 

And the nurse knows this, because she backtracks in the chart and says so, here” the Public Security was “able to get to pt first” so she knows full well that I never  ‘”tried to attack her” and they knew they had no right to restrain me. The chart alone makes it clear that I never did a thing. She would not have phrased it that way if I had attacked her, or even attempted to. No, if I had attacked her, she would said so. In those terms. Not in uncertain, vague terms. She never would  have said what amounts to, “Oops, patient attacked me, but the guards got to her first before she, um, tried to attack me, so really she just wanted to attack me, I think, but never really did, so…um, she never did even really try to attack me, I just assume she wanted to, but like, you know, I can’t really be sure, like, that she wanted to attack me she just looked really, really mean and she wasn’t saying a word, so I betcha she did, and I am really, really glad those guards stopped her from trying to attack me just in case she, like, might have wanted to try to attack me, you know?”

 

Now I want to tell my side of this story because they invented this story out of whole cloth. Yes, parts of it are true, but the chart puts them out of order and not the way Beth related it. This is important because the way she wrote it makes me seem like I spontaneously leapt off the gurney and attacked her out of the blue, which never happened. However, I was also privy to a conversation by the so called Public Safety officers, AKA Guards, who in front of me, in fact while they were holding me down (I was mute, mind you, so remember that they thought I was also deaf, or forgot I was not) decided to create this story in order to justify 4-pointing me, because they simply wanted an excuse to do so.

 

What really happened was that due to my need to communicate, I wrote my needs with ketchup on the paper box the meal came in. Then that too was taken away from me, and Beth came up to me, and instead of speaking to me, handed me a NOTE she had written (the irony of this is beyond belief!) saying, “I will not speak to you or give you anything to write with until you start speaking to me.” At this point, I was livid and also so desperate to write I had no choice but to use whatever I had at hand.

 

So, yes, I did do as she wrote in the chart: I went to the bathroom and had a bowel movement and took some feces back to my cubicle and I tried to write journal entries about what was happening to me on paper towels with my own fecal material. And no, this did not go over very well with Beth or anyone else. But I never attacked Beth or even tried to assault her. Instead, she snuck up on me and snatched my art book out from under me and raced away with it, holding it up in triumph as she did.

 

I was so furious that without even a thought as to possible consequences, I raced behind her intending only to grab my book back. That was all. I never assaulted her, I never so much as touched her. I wanted only to only grab the book back that she had not asked to take from me. Period. As she suggests when she says, “public safety was able to get to patient first.” Well, in fact I had never any intentions of “attacking Beth or anyone else and the guards knew it. But the fact is, I never touched or attacked anyone, they grabbed me and attacked me!

 

That was the point when they dragged me to “Room 42″. The two guards, holding me down, decided they wanted an excuse to four-point me, and though one of them cautioned that they really had no reason to do so, the other one told him not to worry, “we’ll find a reason.” And as I learned shortly thereafter from accusations of my having assaulted a nurse made by Dr. Michael E. Balkunas, they did so.

 

But just because an accusation is made doesn’t make it factual or true, as we all know, and just because Michael E Balkunas accused me of lying about it, and again when I later informed him about them stripping me and leaving me naked in the hospital seclusion room doesn’t mean he was correct either. He never asked me what did happen. He never tried to find out the real events of that evening, he simply designated me as manipulative and “volitional”  — a “borderline” — essentially a prime-time liar. He had already conceived an intense antipathy towards me, so by the time he finally came by to see me on the W-1 Psych Unit the next day, he had made the decision not to let me communicate by writing. Therefore, his intent right from the start was not to let me tell him what was going on. He decided, from the very first moments, not only not to recognize the desperation and extreme frustration this induced, but to see only violence and willfulness in me. His solution? Punishment and torture. Period.
But I am getting ahead of myself. Michael E.  Balkunas, MD, the director of New Britain Hospital’s W-1, claimed to have been there when the ED incident I describe happened, when the guards said that I just shot up off the gurney and spontaneously attacked Beth, the RN, from behind. But the record does not bear this out. In fact, he never saw me at all on the evening of May 12: all the orders were written by other physicians. Dr Balkunas’s name is not even mentioned until the afternoon of May 13 when it states only that he was at my bedside to evaluate me. Even then, from what I recall, I was so sedated after multiple forced medications, use of four-point restraints and seclusions, that I was unable to answer a single question. Since I could not speak, given the fact that Balkunas too refused me any writing implement the interview was as unproductive as could be imagined possible.

 

I was to be admitted to W-1 on the basis of his judgments from that single brief evaluation, from which he drew the diagnosis that in addition to schizophrenia, I had a probable “borderline personality disorder.”  (He spoke to no one in my family nor my longtime nurse or doctor nor my friends…and he did not even hear from me, yet he drew this snap conclusion on what basis???? And yet it hideously affected my treatment at the hospital)

 

How could he possibly diagnose a personality disorder, seeing me in such traumatic circumstances and for a few minutes only? In point of fact, what likely happened was that he took a disliking to me, and diagnosed me with something that in his mind justified his later egregious treatment of me, and in particular   justified his disallowing me to write instead of speak. I cannot otherwise explain his behavior. Nor can I understand his astonishment at my response when I did not react well to these punitive ministrations. Why did he think I would respond positively? Why did he think that coercion would be beneficial? Did he truly think his “treatment” would be restorative? What I think happened is that he decided he did not like me, right from the moment he laid eyes on me — I may even have been naked in restraints, who knows?– and so he opted, as many men do, for  savage abuse and punishment.

 

But there are policies at W-1 that hurt everyone, not just me.

“I want to explain what “deserving” seclusion or restraints and being “violent” at New Britain General Hospital (Hospital of Central Connecticut on Grand Street in New Britain) means in 2014. I also want to tell you something else even more important: In Connecticut, the staff at almost every psychiatric unit or hospital will insist that “we only use seclusion or four-point restraints when absolutely essential, when a patient is out of control and extremely violent, and cannot be controlled in any other way.” Trust me, I know. They have said this sort of thing to me in each and every single Connecticut Hospital I have ever stayed in, except for the “old” Hartford Hospital’s CB-2 psychiatric unit in the 1980s-early 1990s, when Sharon Hinton APRN was the head nurse. I do not recall ever hearing about any seclusion and four-point restraint policy. I know for a fact they had NO seclusion cell, and while I spent many admissions starting out in their “secure unit” what we got there was simply more attention, and more care, not more abusive control.

But what you need to know is that they are NOT talking about some 400-pound man hopped up on PCP, waving a machete. For one thing, that person, I believe is largely mythical, or if real now largely confined to correctional and law enforcement settings. The person they are talking about, the rule, not the exception to the rule of the “extremely violent” person whom they claim must be restrained due to lack of any other method of control, is, to put it grammatically correctly, I. I am the rule…The person they secluded or restrained almost without exception at hospitals like New Britain and Manchester and Middlesex and the Institute of Living was none other than me.

So let me tell you about me. I will turn 63 years of age in November. I am 5 feet, 3 inches tall, and until I moved to Vermont, I weighed, maybe 108 pounds on a good day, Furthermore, I have been consistently described as “poorly muscled.” Not only has my right shoulder been recently injured by staff encounters at New Britain’s hospital, but I before I was hospitalized at HOCC I was unable to use my left arm for much of anything, due to injuries sustained at the Institute of Living in 2013, including a small tear in my rotator cuff and possibly more than that– a fact the NBGH/HOCC nurses/security guards knew (they stated it out loud) and used to their advantage when subduing me.

I also want you to know that I am a decades-long vegetarian on the principle of non-violence — and have always believed in non-violence to people as well as to animals. I have opposed the death penalty since I was a nine-year old child (when I first learned of it) and do not even believe in the principle of prisons, or in treating our convicted criminals as we do. Yet in many Connecticut  hospitals since 2000, and of course for years before then (“before they knew better”) I have been brutally secluded and restrained multiple times as “OOC” — out of control — and “violent.” In addition to either holding me down by brute force, 2 people to each limb and one to my torso (this was at the only 2 hospitals  that did not actually resort to mechanical four-point restraints– compared to the half dozen others that did), they routinely injected me with two to three drugs as chemical restraints (really punishment drugs, as I frequently called them, without anyone correcting my perception) whether they were required or not.

I am the rule, not the exception, I am this supposedly “extremely violent mental patient” who is so O.O.C that Connecticut hospitals refuse to eliminate the use of restraints and seclusion, because they “might need them.” I am the typical person they claim they absolutely must have the right to resort to the use of violence, for their own safety and mine.

Okay, so am I truly violent? What did I do to deserve their brutality? Or should we say, their “protective measures?” Well, at HOCC, on W-1 this is what happened.

 

Michael E Balkunas MD, head of W-1, wrote that “while in patient would often scream.” Yet he states with apparent resentment that I had brought items with me “such as a large advanced directive.” The nursing notes repeat this as if this is a bad thing, and then they proceed to disregard every item on it. Not only that but after Balkunas accuses me of behaving with “volition” (whatever this is meant to prove) he never actually adduce any further facts or observations to back up what he means, except that I brought with me the large psychiatric advance directive and a published book of art work I had done.

 

This book of my art, by the way, was deliberately kept from me the entire time I was on the unit, because, I was told it would be extremely harmful for the other patients to see it. The nurses repeatedly reinforced this message: any glimpse of my art would hurt them. This was emphasized to me: I should feel guilty not only for having brought the book with me, but for having drawn the pictures at all. The RNs seemed to enjoy my feeling bad about this….

 

Balkunas further claims in the chart that he repeatedly “asked if patient would like to speak to him, please,” but what he fails to note is that he refused to permit me any possible mode of communication. He also peremptorily walked out on me when I could not utter a word. He notes that, yes, I threw my bed-clothes at him, but fails to mention that he would not acknowledge my gestures or try to figure out what I wanted to say. Instead, he stood up in disgust and turned on his heels and left.

 

I admit that having already been secluded, 4-point-restrained and forcibly sedated in the ED, and then called a liar by the doctor who was supposed to care for me, I was very upset at being unable to make him stay, to make him listen or attend to me. So I did the only thing I could do to make noise of any sort. I got up off the bed, which was the only furniture in the room, and slammed the door after him. I meant only to make a noise to express my frustration, but unfortunately it caught him in the shoulder.

 

This was not intentional. I scarcely recall doing it, though I confess I was so enraged by his dismissal of me, especially after the violence inflicted on me not once but twice the night before in the ED, that it is possible I wanted the door to make contact with him. What I know is that I most certainly did not intend to injure him. I only wanted him to know, before he walked away from me, that I was angry and “speaking” to him the only way I could. Dr. Balkunas’s reaction was itself swift and violent in the extreme, and extremely personal.

 

Enraged, his face beet-red, he bellowed at the nurses to order guards to take me immediately to the seclusion cell.

 

“Seclusion! Seclusion! Restraints! Restraints!” he screamed. Before I could do anything or even consent to walk there, I was bodily dragged down the hall by my injured shoulder to one of the most horrifying seclusion cells I have ever seen. There were two cells, actually, each lockable from the outside, completely barren and cold except for a concrete slab of a bench set into the wall, with a plastic mattress on it. Nothing else. No commode, no bedpan, nothing but two cameras in the ceiling, but no obvious way for me to communicate with anyone. They locked me in, locked the second door across the other room, so I was thoroughly alone and soundproofed from the rest of the unit, and then turned their backs and walked away.

 

I panicked immediately. I urinated on the floor in my panic. I took off my clothes. I screamed — wanting someone to talk to me, I wanted warm dry clothing to wear, but there was no response. I screamed and screamed. Nothing. Nada. Zilch. Not a word. I did not even understand at that time that there was an intercom somewhere that they could hear me through. I thought I was completely alone and abandoned, but for the eye of the camera. So I did what I had to. I knew, yes, I knew, what would happen, I knew this because it was SOP. It was what always happened to me in Connecticut’s torture-chamber hospitals. But I was freezing in there with the A/C on full bore and at 108 pounds and a history of frostbite I could not tolerate being cold. Furthermore, with neither a watch nor any clock on the wall, I had no inkling as to how long they would keep me there. It might be two hours or twenty, or it might be three days. All I knew was that I could not tolerate the isolation, one, and two, I could not survive the freezing temperature.

 

So I took the flimsy johnnie I had taken off and I rolled it into a rope and tied it around my neck. I pulled on it, as if to strangle myself. This was a futile endeavor of course, because I couldn’t keep pulling on it without eventually letting go and then I’d breathe again. I didn’t want to die. I just wanted it to look outwardly as if I were strangling myself so someone would come in to check on me. Then finally I thought I would be able to explain that I was freezing cold and just please please please would someone give me a blanket?

Well, would that anyone were so reasonable! But no such luck…

Oh, yes, the intercom did crackle to life eventually and someone interrupted. “Pamela, take that away from your neck. Now.” I gestured to indicate I was freezing. The voice spoke again, “If you don’t remove that from your neck, we will restrain you.” I answered silently but clearly, “I need something for warmth!”   No doubt you can guess that this was a battle I was destined to lose…as it was designed to be.

 

Eventually, but not so quickly as to show that they had any truly serious concerns about my safety, guards and nurses entered the room, along with a gurney. Grabbing me, injuring my right shoulder as well as my left in the process, they hoisted me onto the gurney. Without even covering my nude body, they locked me into leather restraint cuffs, wresting me into a painful and illegal spread-eagle position, despite my groans of pain and protest. Then to cap it off, they refused me a blanket. Someone tossed a small towel over my private parts and that was all. I was summarily injected with three punishment drugs and an aide was positioned at the door. Then the goon squad trooped out.

 

I screamed in rage for at least ten minutes. The aide just looked away, pointedly ignoring me. When I finally quieted, I tried to signal my desperate need for water and for warmth, but the aide pretended she did not understand me. But she did understand me and when she finally acknowledged my requests, which I mimed with difficulty from the restraints, she refused, stating that a blanket was unsafe, a pillow unnecessary and that it was my own screaming that had made me thirsty.

 

The experience of mechanical four-point restraints – leather cuffs that are tightened around the wrists and ankles to shackle a patient to a bed – or being isolated by force in a freezing seclusion cell has to be universally terrifying and traumatizing. Nevertheless, both cell and/or four-point restraints are quickly employed to curb loudness and “undesirable behaviors” at the Hospital of Central Connecticut on Grand Street in New Britain. I know this because I was subjected to both seclusion and 4-point restraints multiple times in May and June of 2014, despite being admitted with a previous diagnosis of chronic paranoid schizophrenia, and documented PTSD, triggered by precisely these methods of “behavioral control.”

 

Bizarrely, Dr. Michael E. Balkunas wrote on my chart, “Patient mis-perceives her treatment as traumatic.” Well, maybe so, but I think it is nearly by definition traumatic to be forced to defecate in one’s own clothing while shackled to a bed for 19 hours nearly daily, which is what they did at Hartford Hospital’s Institute of Living in the winter of 2013. This was after I was told to lie down and place my own limbs in the leather cuffs (“as a consequence but not a punishment”) for walking away from the very same “Side Room” that I had just been assured was “not a seclusion room unless you call it a seclusion room.”

 

Again, maybe I mis-perceived being grabbed and held face-down and nearly suffocated numerous times by staff at Yale New Haven Psychiatric Hospital in August 2013, where they would twice or three times a day forcibly inject into my buttocks 10 milligrams of Haldol, a known drug of torture. Maybe this was just kindliness that I misunderstood as traumatic, maybe it was merely a “psychotic mis-perception” on my part? Maybe—and then again, maybe not.

 

Nevertheless, the fact remains that in the ED of New Britain’s HOCC, a security guard in May 2014, grabbed me by my left shoulder immediately after he was warned by the nurse that it was my left shoulder that had a rotator cuff tear.

My New Britain chart records that I was admitted to that hospital, (and to the IOL and others) with a detailed Psychiatric Advance Directive, the first page of which states that seclusion, 4-point restraints and forced medication invariably result in regression to “primitive states and severe worsening of symptoms.” My PAD also makes several concrete suggestions how better to deal with me when I am upset and in crisis. Even though I spent many hours on this document, Psychiatric Advance Directives are virtually worthless in Connecticut and doctors can and do ignore them freely.

 

Perhaps because of this, HOCC staff literally forced me (“escorted me”) to seclusion and/or restrained me multiple times. They even had male guards strip me naked “for safety’s sake,” and even though I put up no resistance, they had the same male guards four- point me, separating my limbs into a spread-eagle position – a visual rape they clearly enjoyed — while still naked and shackled me into leather restraint cuffs without even covering me first.

 

Is it any wonder that what resulted was someone who would wash her hair with her own urine, defecate on the floor of her 24-hour-videotaped bedroom and smear feces on the wall? Yet the esteemed Dr. Balkunas, the director of W-1, the general psychiatry unit at HOCC claimed that my trauma was imaginary. Why? Because treatment cannot be traumatic, so he contends. He simply never got the connection between my later horrendous decompensation and this so-called “therapy.” Maybe he never appreciated that he was torturing me, like a person who ripped the wings off butterflies as a child. Someone like that would not have understood how those creatures suffer either.

 

I moved to Vermont shortly after being released from New Britain Hospital. No hospital in Vermont has felt the need to seclude or restrain me in any such fashion. In fact they do not diagnose me as having any personality disorder either. I have now moved from the Central Vermont Medical Center to Meadowview Recovery Residence in Brattleboro, where they offer residential and unmistakably kind, non-coercive treatment for both schizophrenia, and for the PTSD that resulted from this horrific treatment.

 

My grave concern however is that there are people still being tortured in HOCC’s W-1 unit for General Psychiatry, on Grand Street in New Britain. I did not leave Connecticut just to forget about this. Justice must be served in order for change to happen.

 

I tried to file a complaint through the ADA with the Department of Justice about HOCC’s ED and their refusal to provide me a means to communicate but I never heard back from them, although it is just possible they called my cell phone which has ceased to function…

 

I beg of you to respond to this email. Please help, and please do something to change New Britain’s HOCC use of torture, and the situation at W-1 in particular. Although I am somewhat constrained in Vermont at present, I would assist in any fashion I possibly can.

Thank you,

 

Pamela Spiro Wagner

God, Prayer, Religion

Praying For Foolishness: A Poem

9 Comments

THE OLD STORY

My father spoke of atheism as if it were a religion,

pounding the points of his argument into the dinner table,

spilling the salt with the seed of his own bad temper.

He raised me to be an atheist, too,

and I learned well the commandments of godlessness.

But at night in bed I suffered for it and was penitent

memorizing prayers buy the pages

glossing the psalms with a litany of pleas

that somehow God would find me, small as I was,

and make me a believer,

and, though a prodigal daughter, much loved, much loved.

How I longed for the sweet blow of grace

coming upon me like a hammer on a nail,

or a beggar on a penny

or raindrops on the parched red clay

turned to rust in the arid fields of my soul.

 

One night – I was under the covers saying the Lord’s Prayer

with a lengthy meditation for each line –

my father, making the rounds, heard me.

What are you doing? he asked, more awful than the God I longed for.

I told him, expecting punishment,

expecting a lecture on the purity of the godless intellect.

He stood a while in silence

while I waited for the one blow I didn’t want.

Then he said, laughing,

you’ll grow out of such foolishness, I hope.

 

I didn’t grow out of it.

Though I never found God and stopped looking for Him

I remember my father’s laughter,

the hard, cold sneer of it,

laughter at his daughter longing for God

and hoping for love

that would come like a thief in the night.

 

Now that I am older I know that belief’

doesn’t fall like a hammer

that the beggar is always penniless

and that rainfall soon evaporates returning to the cloud.

Atheism is a creed I have lived by, learned by,

and have at times been comforted by.

but if God should ever find me

I pray for foolishness.

 

1988

Acceptance, Art, Health, Wisdom

Toltec Wisdom (and a Little of My Own!)

6 Comments

Despair on Park Bench
Despair on Park Bench

Sometimes you never know who it is that has a disabling mental “illness,” not even when they are right in front of you. Not every person who has been diagnosed with schizophrenia, for instance, looks like it or pushes a shopping cart laden with household “extranea” down the street, homeless, filthy, and laughing wildly to themselves…Not that this is so terrible either, frankly. We should all not be so quick to judge. And no, we should not judge even this notion of the homeless-shopping-cart-person as “bad” or “wrong” — not until we know the person and understand what he or she wants from life and his or her history. I am not saying that anyone should freeze to death from exposure, or suffer from hunger or from any unwanted basic deprivation, only that no one understands the life conditions of another until you talk with them and come to know that person…

Too many people make assumptions that are wrong and/or erroneous based only on what they want and are comfortable with, not on what the other person needs and wants. Believe me, I know, having been there way more often than I wish and experienced it from that “other side.” Far too many times have people claimed to be “helping me” and have only hurt me! It is not that I think they were badly intentioned, so much as that they were only thinking about how they felt or would feel. They were not being truly empathic, not giving an inch or a nanosecond to trying to think about how I, personally, did feel nor for that matter asking me what I might want or need at that moment.

I want to remind people to remember that “ASSUME makes an ASS out of U and Me..” so instead of assuming anything about another person, especially someone who has an apparent mental “illness” or someone who at any rate seems somehow “different” from the people who are familiar to you, ask them questions…Find out what they want and what makes them comfortable!

As Toltec spiritual advisor Don Miguel Ruiz tells us in THE FOUR AGREEMENTS, which is the best book of its sort I have ever read, you can and should ask any question you want to, so long as you are honestly prepared to accept the answer.

By the way, the Second Agreement, in his book, an Agreement I find so fundamentally important, is Do Not Take Anything Personally. By taking things personally — that way danger and disappointment and all distress lies. Truly this is so. People are all in their own little bubbles, taking their own lives personally and frankly, think about that! We are only on the periphery of everyone else’s thinking and living, and in a very real way they cannot ever know us as we know ourselves, they can only know us through the lens of their own lives, their own bubbles. This revelation can be freeing if you let it…

That is why we should not take anything personally — because other people are too busy doing the same thing and not seeing us as we are, but only as adjuncts to their lives and thinking. If we truly knew and accepted this, we would be free from a great deal of angst and upset. But of course this is a very difficult thing to do…to free ourselves of the notion that we are as important in others lives as we are in our own. No, they are the important actors on their own stage, we are not. We really need to get over thinking that we are prima donnas in everyone’s drama as well as our own…Is not our own life enough? I should think so. Who would want to star in more than one drama at a time?

Abuse, Michael E Balkunas MD, Seclusion and Restraints

Hartford COurant Article (that won’t be) about Michael E Balkunas, MD, Chief of psychiatry at HOCC

3 Comments

Patients placed in Seclusion or Restraints are to be debriefed afterwards. To see standards of care, see below this reprint article.

I moved to Brattleboro Vermont on February 4, 2015, leaving my home state of Connecticut where I’ve lived for nearly 60 years. l had to move because of the horrific psychiatric abuses I experienced in Connecticut hospitals and my fear that if ever I were hospitalized again I would be killed.

I feel guilty, however, just getting out without accomplishing something to stop what continues to happen in Connecticut psychiatric units and hospitals.

The experience of mechanical four-point restraints – leather cuffs that are tightened around the wrists and ankles to immobilize a patient to a bed – or being isolated by force in an often freezing seclusion cell is almost universally terrifying. Nevertheless, both cell and/or restraints are routinely employed to curb loudness and undesirable behaviors at the Hospital of Central Connecticut on Grand Street in New Britain. I know this because I was subjected to both seclusion and restraints multiple times in the spring of 2014, despite a diagnosis of chronic paranoid schizophrenia, as well as PTSD that was triggered by precisely this sort of thing.

Bizarrely, the hospital psychiatrist, Dr Michael E Balkunas, treating me at HOCC challenged my PTSD diagnosis. “Patient misperceives her treatment as traumatic,” he wrote in my chart. Well, maybe so, but I don’t know how I can be accused of misperceiving three entire days callously abandoned alone, tied to the four posts of a metal bedstead at U-Conn’s Dempsey Hospital (for trying to escape the locked unit) as anything but brutality, even if it was in the 1990s. I also think it is nearly by definition traumatic to be forced to defecate in one’s own clothing while tied to a bed which is what they did at Hartford Hospital’s Institute of Living in the winter of 2013. This was after I was told to lie down and place my own limbs in the leather cuffs (“as a consequence but not a punishment”) for walking away from the very same “Side Room” that I had just been assured was “not a seclusion room unless you call it a seclusion room.”

Again, maybe I misperceived being grabbed and held face-down and nearly suffocated numerous times by staff at Yale Psychiatric Hospital in August 2013, who injected 10-20 milligrams of Haldol, a known drug of torture. Maybe this was just kindliness that I misunderstood as traumatic, maybe it was merely a “psychotic misperception” on my part? Maybe, and maybe not.

Nevertheless, the fact remains that in the ED of New Britain’s HOCC, a security guard in May 2014, grabbed me by my left shoulder immediately after he was warned by the nurse that it was my left shoulder that had a rotator cuff tear.

My New Britain chart records that I was admitted to that hospital, and to the IOL and others with a detailed Psychiatric Advance Directive, the first page of which states that seclusion, four-point restraints and forced medication invariably result in regression to “primitive states and severe worsening of symptoms.” It also makes several concrete suggestions how better to deal with me when I am upset. Even though I spent many hours on this document, Psychiatric Advance Directives have no legal clout in Connecticut and doctors can and do ignore them freely.

Perhaps because of this, HOCC staff literally forced me (“escorted me”) to seclusion and/or restrained me again and again. They took to stripping me “for safety’s sake,” and even though I put up no resistance, they had the male guards spread-eagle my limbs while still naked and put restraint cuffs on without even covering me.

Is it any wonder that what resulted was someone who would wash her hair in her own urine, defecate on the floor of her room and smear feces on the wall? Yet Dr Balkunas, the director of W-1, the general psychiatry unit at HOCC claimed that my trauma was imaginary. Why? Because treatment cannot be traumatic. He simply never got the connection between my horrendous decompensation and his so-called “therapy.” Maybe he never appreciated that he was torturing me, like a person who ripped the wings off butterflies as a child. Someone like that would not have understood how those creatures suffer either.

——————–

These are the NURSING De-Briefing standards for after restraints and/or seclusion:

APNA STANDARDS

DEBRIEFING AFTER RESTRAINTS/SECLUSION

Standard: As soon as possible, following the release from seclusion or restraint, the nurse, the person and others as appropriate should participate in a debriefing.

– See more at: http://www.apna.org/i4a/pages/index.cfm?pageid=3730#Release

Intent: A debriefing is done with persons who have been secluded or placed in restraints to:

  • Discuss and clarify any possible misperceptions the person may have concerning the incident.
  • Ascertain the person’s willingness to involve family or other caregivers in a debriefing to discuss and clarify their perceptions as well as identify additional alternatives or treatment plan modifications.
  • Support the person’s re-entry into the milieu.
  • Identify alternative interventions to reduce the potential for additional episodes.
  • Hear and record the person’s perspective on the episode.
  • Ascertain that the person’s rights and physical well-being were addressed during the episode and advise the person of processes to address perceived rights grievances.
  • Address any trauma that may have occurred as a result of the incident.
  • Modify the treatment plan as needed.

NONE of this was EVER done, ANYWHERE, in any hospital I have ever been in. Why? Because they all knew perfectly well what they had done to me and WHY…Not because I was dangerous to anyone, but as punishment…Naturally they did not want me to have a chance to tell anyone.

– See more at: http://www.apna.org/i4a/pages/index.cfm?pageid=3730#Release

Health, Schizophrenia, Temporal Lobe Epilepsy

SCHIZOPHRENIA and TEMPORAL LOBE EPILEPSY: MORE INFORMATION From MEDSCAPE

5 Comments

Psychiatric Disorders Associated With Epilepsy

Author: Fahad Salih Algreeshah, MD; Chief Editor: Jose E Cavazos, MD, PhD, FAAN, FANA, FACNS more…

Updated: Oct 28, 2013

Overview

The International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) define epilepsy as a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures and by the biologic, cognitive, psychological, and social consequences of this condition. This association may reflect the anatomical and neurobiological source of both epileptic seizures and the behavioral manifestations.

Antiepileptic drugs (AEDs) can play a role in the genesis of psychiatric symptoms; on the other hand, some psychotropic medications can lower the seizure threshold and provoke epileptic seizures.

Indeed, there is a general agreement that the incidence of neurobehavioral disorders is higher in patients with epilepsy than in the general population, although some authors argue that this apparent overrepresentation is due to sampling errors or inadequate control groups. Many, but not all, authors also accept the proposition that the link between neurobehavioral disorders and temporal lobe or complex partial epilepsy is particularly strong.

Go to Epilepsy and Seizures for an overview of this topic. Additionally, go to Psychogenic Nonepileptic Seizures for complete information on this topic.

Factors in the relationship between epilepsy and behavioral disorders

Mechanisms for a relationship between epilepsy and behavioral disorders include the following:

Common neuropathology
Genetic predisposition
Developmental disturbance
Ictal neurophysiologic effects
Inhibition or hypometabolism surrounding the epileptic focus Secondary epileptogenesis

Alteration of receptor sensitivity
Secondary endocrinologic alterations
Primary, independent psychiatric illness Consequence of medical or surgical treatment Consequence of psychosocial burden of epilepsy

Multiple interacting biologic and psychosocial factors determine the risk for the development of either schizophreniform psychoses or major depression in patients with epilepsy, and

behavioral disorders in epilepsy have multiple risk factors and multifactorial etiologies.[1] Role of the neurologist in the psychiatric management of patients with

epilepsy

As neurologists, we tend to focus on seizure control, and psychiatric comorbidities are often underestimated. Recognizing psychiatric manifestations is an area that needs improvement.

Once symptoms are identified, the following questions arise[2] :

Are the symptoms related to the occurrence of seizures (preictal, ictal, postictal)?
Are the symptoms related to AEDs?
Is the onset of symptoms associated with the remission of seizures in patients who had previously failed to respond to AEDs?

Because of the phenomenology of epilepsy, the close association between epilepsy and psychiatry has a long history. The traditional approach to epilepsy care has been to focus on

the seizures and their treatment. Concentrating only on the treatment of the seizures, which occupy only a small proportion of the patient’s life, does not seem to address many of the issues that have an adverse impact on the quality of life of the patient with epilepsy.

Sackellares and Berent stated that comprehensive care of the epileptic patient requires “attention to the psychological and social consequences of epilepsy as well as to the control

of seizures.”[3]

Although undoubtedly important in the care of the patient with epilepsy, advances in neurologic diagnosis and treatment tended to obscure the behavioral manifestations of epilepsy until Gibbs drew attention to the high incidence of behavioral disorders in patients

with temporal lobe epilepsy.[4]
Frequency of psychiatric disorders in patients with epilepsy

It is estimated that 20­30% of patients with epilepsy have psychiatric disturbances.[5]

Of patients with intractable complex partial seizures, 70% may have 1 or more diagnoses consistent with the Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition (DSM­III­R); 58% of these patients have a history of depressive episodes, 32% have

agoraphobia without panic or other anxiety disorder, and 13% have psychoses.[6] The risk of psychosis in patients with epilepsy may be 6­12 times that of the general

population, with a prevalence of about 7­8%; in patients with treatment­refractory temporal lobe epilepsy, the prevalence has been reported to range from 0­16%.[7]

Differences in the rates may result from differences in the populations studied, time periods investigated, and diagnostic criteria.

The most common psychiatric conditions in epilepsy are depression, anxiety, and psychoses. [8, 9, 10, 11, 12, 13] (See the Table below.)

Table. Prevalence Rates of Psychiatric Disorders in Patients With Epilepsy and the General Population (2007 data)[8] (Open Table in a new window)

The psychiatric symptoms characteristic of the neurobehavioral syndrome of epilepsy (ie, Morel syndrome) tend to be distinguished in the following ways:

Atypical for the psychiatric disorder Episodic
Pleomorphic

Psychotic Disorders

Psychotic disorders are severe mental disorders that cause abnormal thinking and perception. Psychotic individuals lose relation with reality. Symptoms generally described as either positive, such as hallucinations, delusions, and disorganized behaviors, or negative, such as diminished range of emotion, reduced speech, and inability to initiate and sustain goal­directed activities.

Vuilleumier and Jallon found that 2­9% of patients with epilepsy have psychotic disorders.[14] Perez and Trimble reported that about half of epileptic patients with psychosis could be

diagnosed with schizophrenia.[15]

The etiology and pathogenesis of psychosis in epilepsy are poorly understood; however, neuroanatomical changes have been observed in patients with psychosis and include the following:

Asymmetry of amygdala and anterior segment of the hippocampus [16]
Rule of hippocampal­amygdala complex in pathogenesis of schizophrenia [17]

Smaller gray matter volume in the left and middle temporal gyri and left posterior superior temporal gyrus [18]

Psychiatric Disorder

Controls

Patients With Epilepsy

Major depressive disorder

10.7%

17.4%

Anxiety disorder

11.2%

22.8%

Mood/anxiety disorder

19.6%

34.2%

Suicidal Ideation

13.3%

25.0%

Others

20.7%

35.5%

Rule of bilateral middle frontal gyrus (prefrontal cortex) in overt psychosis occurring with schizophrenia [19]

Superior temporal cortex and dysfunction of corollary discharges in auditory hallucination [20]

Patients with temporal lobe epilepsy and psychosis of epilepsy have significantly smaller brain volume than people with temporal lobe epilepsy alone, and psychosis of epilepsy is a

distinct nosologic entity differing from schizophrenia.[21]

Kanner states that various classifications have been proposed for the psychoses associated with epilepsy. He asserts that for the neurologist, the most useful might be that which distinguishes among psychoses closely linked to seizures (ictal or postictal psychosis), those linked to seizure remission (alternative psychosis), psychoses with a more stable and chronic course (eg, interictal psychosis), and iatrogenic psychotic processes related to antiepileptic

drugs.[22]

Ictal events

Status epilepticus (ie, complex partial status epilepticus and absence status epilepticus) can mimic psychiatric disorders, including psychosis.

Postictal events

So and colleagues distinguished between postictal psychosis, which is characterized by well­ systematized delusions and hallucinations in a setting of preserved orientation and alertness, as well as postictal confusion. They also distinguished between self­limited postictal

psychosis and the unremitting chronic interictal psychosis seen in long­standing epilepsy.[23] Criteria proposed by Stagno for postictal psychosis include the following[24] :

Psychotic or other psychiatric symptoms occur after a seizure or, more frequently, a series of seizures, after a lucid interval, or within 7 days of the seizure(s)
The event may be psychosis, depression, or elation or may be an anxiety­related symptom

The event is time­limited, lasting days or, rarely, weeks; no significant clouding of consciousness occurs

Logsdail and Toone believe that clouding of consciousness, disorientation, or delirium may be noted, and, if consciousness is unimpaired, delusions and hallucinations are present; a

mixture of both also may be noted.[25]
Clouding should not be attributed to other medical or psychiatric causes (eg, drug

intoxication, complex partial status epilepticus, metabolic disturbance).

Interictal events

Interictal psychotic phenomena, particularly hallucinations and delusions, are common in patients with epilepsy.[26, 27, 28]

Although many etiologies of psychosis in epilepsy have been proposed, the significance of such factors as the type of seizure, epilepsy classification, lateralization of foci, and age at

onset of epilepsy remains uncertain.[29, 30, 31, 32]
Tarulli et al documented cases of patients who had multiple episodes of postictal psychosis

before developing interictal psychosis.[33] They concluded that a progression from postictal to interictal psychosis may be at play and that increased awareness and prompt treatment of postictal psychosis may inhibit or prevent the development of some instances of interictal psychosis.

Factors in the development of psychosis

The following variables are believed to have particularly strong links to the development of psychotic phenomena in patients with epilepsy:

Family history of psychosis ­ Patients who had a positive family history of psychosis were extremely susceptible to psychosis, so a genetic factor appears to be involved Age at onset of epilepsy ­ Patients with interictal psychosis showed a significantly

earlier onset of epilepsy [34, 35, 36, 37, 38]
Type of seizure ­ The existence of complex partial seizure (mostly temporal lobe

epilepsy) may be strongly associated with interictal psychoses [39, 40]

Intelligence ­ Patients with borderline intellectual functioning tend to develop psychotic symptoms relatively frequently [34, 35]

The risk factors for developing psychosis in epilepsy found in some studies also include the following[41] :

Partial complex seizures, especially with temporal lobe foci The presence of “alien tissue” (eg, small tumors, hamartomas) Mesial temporal lobe gangliogliomas
Left­handedness, especially in women

With regard to the first item above, some authors have noted a predominance of left­sided foci. Frontal lobe epilepsy is also common.

Schmitz et al studied risk factors and classified them by the following system:

Biologic factors
Earlier onset of epilepsy
More severe epilepsy
Psychosocial factors
Disturbed family background
Lack of interpersonal relationships
Social dependency
Professional failure
More frequent temporal lobe and unclassifiable epilepsies and less frequent generalized epilepsies

With regard to the last item above, no significant differences in types of epilepsies between patients with epilepsy and psychosis and patients with epilepsy without psychiatric disease have been found.

Trimble and Schmitz believe that the conclusions presented in the literature on risk factors are highly controversial.[41]

Schizophrenia

In a review study of patients with epilepsy who developed psychosis, Tandon and DeQuardo found that the patients’ psychoses were usually a form of schizophrenia, most commonly

paranoid schizophrenia.[42]
Stagno reported that persistent interictal psychoses of epilepsy and the schizophrenialike

psychoses of epilepsy are distinguishable from schizophrenia in the traditional psychiatric sense by the following[43] :

Lack of negative symptoms of schizophrenia, particularly flattening of affect and personality deterioration
Better premorbid personality
Paranoid delusions

Delusions of reference
More benign and variable course

Treatment

Status epilepticus and ictal abnormalities are treated in the same way as nonpsychiatric epileptic events. Postictal events are treated by improving seizure control.

So et al believe that postictal psychosis remits spontaneously even without treatment but that

the use of effective neuroleptics may shorten the duration.[44] Interictal psychosis is treated with antipsychotic drugs. Medications that lower the seizure threshold should be avoided. Some studies indicate that risperidone, molindone, and fluphenazine may have better profiles than older antipsychotic medications; clozapine has been reported to confer a particularly high risk of seizures.

Forced normalization

Treatment of any of the psychoses of epilepsy should take into consideration the phenomenon termed forced normalization, which is a concept described by Landolt in the 1950s. When the electroencephalogram (EEG) in psychotic patients is normalized, often with anticonvulsant medicines, the psychiatric problem worsens.

Alternative psychosis, or antagonism between seizures and behavioral abnormalities (ie, worsening of behavior with improvement in seizure control), is a similar phenomenon that has been known for a longer time. Forced normalization frequently is described in patients treated

with ethosuximide; anecdotally, however, forced normalization effects have been produced by treatment with most antiepileptic agents, including the newer agents. The mechanism underlying these interesting phenomena is not yet understood. Many authors consider the idea of forced normalization to be somewhat controversial.

Bipolar Affective Disorders

Bipolar affective disorder is chronic psychiatric disease with severe changes in mood with a wide spectrum of clinical manifestations. A number of studies have demonstrated that affective disorders in epilepsy represent a common psychiatric comorbidity; however, most of

the neuropsychiatric literature focuses on depression, which is actually prominent.[45] The incidence of developing bipolar affective disorder in epilepsy is 1.69 cases per 1000

persons­year, compared with 0.07 in the general population.[46]

Bipolar symptoms were 1.6­2.2 times more common in subjects with epilepsy than with migraine, asthma, or diabetes mellitus and are 6.6 times more likely to occur than in healthy subjects. A total of 49.7% of patients with epilepsy who screened positive for bipolar symptoms were diagnosed with bipolar disorder by a physician, nearly twice the rate seen in

other disorders.[47]

Depression

Depression is a mental state or chronic mental disorder characterized by feelings of sadness, loneliness, despair, low self­esteem, and self­reproach. Accompanying signs include psychomotor retardation (or, less frequently, agitation), withdrawal from social contact, and vegetative states, such as loss of appetite and insomnia.

Depression is the most frequent psychiatric comorbidity seen in patients with epilepsy. It is more likely to occur in patients with partial seizure disorders of temporal and frontal lobe

origin. It is also more frequent in patients with poorly controlled seizures.[48]
Two possibilities exist: (1) depression is a reaction to the epilepsy or (2) depression is a part

of the epilepsy.

Mendez et al compared patients with epilepsy to matched controls without epilepsy but with a similar degree of disability from other chronic medical diseases and found that while 55% of the patients with epilepsy reported depression, only 30% of the matched controls reported

depression.[49]
Mendez et al concluded that depression is related to a specific epileptic psychosyndrome.

On the other hand, Robertson concluded that with few exceptions, the phenomenology of the depression to a large degree is not attributed to neuroepilepsy variables; however, not all

studies have found this difference.[50]

In patients with refractory epilepsy, the presence of depression is one of the most important variables to have an impact on their quality of life, even more than the frequency and severity of the seizures.

Several studies have documented that the quality of life improves significantly in patients with epilepsy who are made seizure free. If those patients are excluded, Boylan et al have found

that the quality of life is related to depression but not to degree of seizure control.[51] Despite its high prevalence in patients with epilepsy, depression very often remains

unrecognized and untreated. The reasons for clinicians’ failure to recognize depressive disorders in patients with epilepsy include the following[52] :

Patients tend to minimize their psychiatric symptoms for fear of being further stigmatized
The clinical manifestations of certain types of depressive disorders in epilepsy differ from depressive disorders in patients without epilepsy and therefore are not recognized by physicians
Clinicians usually fail to inquire about psychiatric symptoms
Patients and clinicians tend to minimize the significance of symptoms of depression because they consider them to be a reflection of a normal adaptation process to this

chronic disease [53]
The concern that antidepressant drugs may lower the seizure threshold has generated among clinicians a certain reluctance to use psychotropic drugs in patients with epilepsy

Risk factors for the development of depression in patients with epilepsy include the following:

Temporal lobe (but not frontal lobe) partial complex seizures Vegetative auras
Family history of psychiatric illness, particularly depression Laterality effects, which are controversial

Physiologic factors associated with epilepsy and depression

Decreased serotonergic, noradrenergic, and GABAergic functions have been identified as pivotal etiologic mechanisms in depression and have been the basis for antidepressant

pharmacologic treatments.[54] Decreased activity of these same neurotransmitters has been shown to facilitate the kindling process of seizure foci, to exacerbate seizure severity, and to intensify seizure predisposition in some animal models of epilepsy.

Therefore, parallel changes of serotonin, norepinephrine, dopamine, and GABA may be operant in the pathophysiology of depressive disorders and epilepsy. Jobe et al have presented evidence that some types of depression and some types of epilepsy may be

associated with decreased noradrenergic and serotonergic transmission in the brain.[55] Flor­Henry speculated that depression might be related to right (nondominant) foci, a finding

confirmed by a few other investigators.[56]

Some authors have suggested that elation is associated with right­sided lesions and depression or sadness with left­sided lesions. Most studies that find a relationship between laterality and depression have found depression to be more common with left­sided foci.

Lopez­Rodriguez et al found that major depressive episodes were statistically more frequent in patients with left temporal lobe seizures than in patients with right temporal lobe seizures. [57]

Other authors report no laterality differences in depression rates.

Other factors associated with depression in epilepsy

One of the variables linking depression and epilepsy is a family history of depression.

A greater frequency of depression has been found in patients with seizures originating in limbic structures; also, a frontal lobe dysfunction has been associated with depression.

The quality of life is often suboptimal for patients with epilepsy, and this may adversely affect mood.[58, 59, 60, 61, 62]

Increased financial stress, life stressors, and poor adjustment to seizures are predictive of increased depression.[63]

The lack of control over the illness may be an additional risk factor for depression.[64, 65]

Depression in epilepsy may also result from iatrogenic causes (pharmacologic and surgical).

The AEDs most frequently associated with iatrogenic depressive symptoms include the following[66] :

Phenobarbital Primidone Vigabatrin Levetiracetam Felbamate Topiramate

Depressive disorder can also occur following the discontinuation of AEDs with positive psychotropic properties, such as carbamazepine, oxcarbazepine, valproic acid, and lamotrigine.

Frequency of depression in epilepsy

In patients with epilepsy, the reported rates of depression range from 8­48% (mean 29%, median 32%); the prevalence of depression in the general population ranges in different

epidemiologic studies from 6­17%.[67]
In a study of patients with epilepsy who were admitted to a psychiatric hospital, Betts found

that depression was the most common psychiatric diagnosis.

Williams studied 2000 patients with epilepsy and found that depressed mood was part of the attack in 21. According to Williams, depressed mood was the second most common emotion

constituting part of the attack, with fear being the most common.[68] Others have found similar results.

Characteristics of depression in patients with epilepsy

Characteristics of patients with epilepsy who also have depression include the following:

Fewer neurotic traits
More psychotic traits
Higher trait and state anxiety scores
More abnormal affect and chronic dysthymic disorder High hostility scores, especially for self­criticism and guilt Sudden onset and brief duration of symptoms

Perhaps 10­20% of persons with epilepsy have a peri­ictal prodrome consisting of depressed­irritable mood, sometimes with anxiety or tension and headaches. Although Williams noted in his patients that the mood disturbance would persist for 1 hour to 3 days

after the ictus, postictal affective syndromes have received little attention in the literature.[68] Blumer has defined an interictal dysphoric disorder in patients with epilepsy in which

symptoms tend to be intermittent.[69]
On average, the patients tend to have 5 of the following symptoms (range 3­8):

Depressed mood Anergia
Pain
Insomnia

Fear
Anxiety
Paroxysmal irritability Euphoric moods

Kanner has noted that the symptoms of depression in patients with epilepsy are different from those in patients without epilepsy. He believes that patients with epilepsy who are felt to warrant antidepressant therapy often do not meet formal DSM criteria for a mood disorder and concludes that the problem of depression in epilepsy may be underestimated by using

screening instruments designed for use in psychiatric patients.[70]

Kanner continued with this research using the DSM­IV criteria. Most symptoms presented with a waxing and waning course, with symptom­free periods. He referred to this form of depression as “dysthymic­like disorder of epilepsy.”

Caplan et al believe that depression in children and adolescents with epilepsy tends to have a different presentation from that seen in adults with epilepsy, although some adolescents with depression may present with a syndrome similar to that seen in adults. They reported that children with depression often do not appear sad and that the depression may be

manifested by the following[71] :

Irritability Oppositionality Aggression Anger

For this reason, special instruments are used to assess depression in children.

Thome­Souza et al reported that depression in children with epilepsy may be underdiagnosed and untreated for longer periods than in adults. They found that 70.5% of children and adolescents in the study had psychiatric disorders and that the most frequent psychiatric disorder in children was attention­deficit/hyperactivity disorder (ADHD) and the most frequent psychiatric disorder in adolescents was depression. They found that family

history was also an important determinant in mood disorders in children and adolescents.[72]

Preictal symptoms of depression

Categorizing depression in patients with epilepsy as depression occurring peri­ictally (preictally, ictally, or postictally) and interictally may be useful.

Preictal symptoms of depression are believed to present as symptoms of irritability, poor frustration tolerance, motor hyperactivity, and aggressive behavior in children with epilepsy.

However, very few studies have been performed in the literature.[73]

Ictal symptoms of depression

Ictal symptoms are the clinical expression of a simple partial seizure. Psychiatric symptoms occur in approximately 25% of auras. The most frequent symptoms include feelings of

anhedonia, guilt, and suicidal ideation.[74]

Postictal symptoms of depression

Postictal symptoms of depression have been recognized for a long time, but they have been poorly studied in a systematic manner.[75]

Interictal symptoms of depression

For patients with epilepsy to experience depressive episodes that fail to meet any of the DSM­IV­TR criteria is not unusual. Kraepelin and Bleuler were the first to describe affective symptoms of prominent irritability, intermixed with euphoric mood, fear, and symptoms of

anxiety, as well as anergia, pain, and insomnia.[76, 77, 78]
In 1986, Mendez et al used the term atypical depression in epilepsy patients using the DSM­

III­R criteria.

Treatment

The treatment of mood disorders in patients with epilepsy includes reevaluation of the anticonvulsant regimen, cautious but aggressive use of antidepressants, and psychotherapy.

First and foremost, treatment involves seizure control with appropriate anticonvulsant therapies. A phenomenon analogous to alternative psychosis, worsening of behavior with better seizure control, has been reported in epilepsy­associated mood disorders.

There is evidence that some anticonvulsant therapies, including vagus nerve stimulation, valproate, gabapentin, carbamazepine, and lamotrigine, also have antidepressant effects and may prove effective in treating depression in patients with epilepsy. Phenobarbital is known to produce depression.

According to Schmitz, vigabatrin has been linked to psychoses and to major depression, and phenytoin has been associated with toxic encephalopathies.[79]

McConnell and Duncan cite some patients in whom phenytoin had been linked to depression and mania. A case has been made that the GABAergic drugs may be associated with an

increased incidence of psychiatric problems.[80]

However, antidepressants may be necessary to effectively treat depression in these patients. When an antidepressant is prescribed, the epileptogenic potential, adverse effects, and drug interactions must be evaluated. Selective serotonin reuptake inhibitors (SSRIs) such as citalopram (owing to its lack of drug interactions) and multireceptor­active compounds such as nefazodone or venlafaxine are suggested as first­line treatments. Bupropion, maprotiline, and clomipramine should be avoided.

Virtually all non–monoamine oxidase inhibitor (MAOI) antidepressants have been reported to lower the seizure threshold. In the treatment of epilepsy­related depression, priority should be given to optimizing seizure control, since improved psychosocial functioning tends to accompany seizure remission. Antidepressants may manifest convulsant and anticonvulsant effects. Maprotiline and amoxapine have the greatest seizure risk; doxepin, trazodone, and fluvoxamine appear to have the lowest risk.

Electroconvulsive therapy is not contraindicated and may prove effective for epilepsy patients with severe, treatment­resistant, or psychotic depression.

It is imperative that depression be recognized and treated in patients with epilepsy. Further prospective studies of new treatment options for depression in this patient population are

needed.[81]

Mania

In a carefully selected series of patients with epilepsy, Williams found that only 165 of 2000 patients had complex, including emotional, ictal experiences.[82]

Of those 165 patients, only 3 described elation. Mania and hypomania are rare in association with epilepsy.

Manic­depressive illness is also rare; of 66 patients with epilepsy and major depression, only 2 had bipolar disorder. This rarity is probably, to some degree, secondary to the antimanic effect of drugs such as carbamazepine and valproate. However, mania was uncommonly associated with epilepsy even before the use of modern antiepileptic drugs.

Suicidal Behaviors

Suicidality (completed suicide, suicide attempt, and suicidal ideation) is significantly more frequent among people with epilepsy than in the general population.[81, 83, 84, 85, 86, 87]

The risk of suicide in the general population averages about 1.4%. Depression is one of the psychiatric disorders that increases the risk of suicide. The risk of suicide in depressed patients is believed to be around 15%.

On average, the risk of suicide in patients with epilepsy is about 13% (prevalence rate ranges from 5­10 times that of the general population). Although some authors question its methodological and patient selection techniques, most authors cite Barraclough’s meta­ analysis, which revealed that the risk of suicide in patients with temporal lobe epilepsy is

increased to as much as 25­fold that of the general population.[88]
Even so, depression remains underrecognized and untreated. The relationship between

epilepsy and suicidality is complex and multifactorial.

Psychiatric adverse events, including symptoms of depression and anxiety, have been reported with the use of several AEDs, particularly barbiturates (phenobarbital and

primidone), topiramate, tiagabine, zonisamide, vigabatrin, and levetiracetam.[89, 90, 91, 92]

The incidence of suicidal phenomena linked to specific AEDs has not been systematically well studied. These data may either reflect the natural course of an underlying, recurrent psychiatric illness with no real effect from AEDs or could suggest that AEDs lower the threshold for manifesting psychiatric symptoms in individuals who are vulnerable because of a genetic or historical predisposition to psychiatric disorders.

Frequent risks associated with suicidality include the following[81] :

Current or past history of mood and anxiety disorders
Family psychiatric history of mood disorders, particularly of suicidal behavior Past suicidal attempts

In January 2008, the US Food and Drug Administration (FDA) issued an alert regarding the association between suicidality and AEDs, having concluded that there was a statistically significant, 1.8­fold increased risk of suicidality with exposure to AEDs. This conclusion was based on the results of a meta­analysis that included data from 199 randomized clinical trials of 11 AEDs: carbamazepine, felbamate, gabapentin, lamotrigine, levetiracetam, oxcarbazepine, pregabalin, tiagabine, topiramate, valproate, and zonisamide. The meta­ analysis encompassed 43,892 patients treated for epilepsy, psychiatric disorders, and other disorders, predominantly pain.

In the study, suicidality occurred in 4.3 of 1,000 patients treated with AEDs in the active arm, compared with 2.2 of 1,000 patients in the comparison arm. The results of this meta­analysis

must be considered with great caution, and more research is necessary.[81, 93, 94]
The FDA has decided to insert suicide warnings in the package inserts of all AEDs; thus,

physicians need to identify patients with increased risk of suicide.[95] Anxiety Disorders

Anxiety is an experience of fear or apprehension in response to anticipated internal or external danger, accompanied by muscle tension, restlessness, sympathetic hyperactivity, and/or cognitive signs and symptoms (hypervigilance, confusion, decreased concentration, or fear of losing control).

Anxiety is common in patients with epilepsy; of 49 patients with epilepsy attending a tertiary epilepsy care center, 57% had high­level anxiety.

Anxiety in patients with epilepsy can be ictal, postictal, or interictal.

GABA is the most important inhibitory transmitter in the central nervous system. Evidence suggests that the abnormal functioning of GABA receptors could be of great importance in

the pathophysiology of epilepsy and anxiety disorders.[82, 81]

Differentiating between spontaneous fear and reactive fear (ie, reaction to the knowledge that a seizure may occur) can be difficult. Panic disorder can produce paroxysmal symptoms, which can be confused with epileptic events and may go unrecognized in patients with epilepsy. Anxiety also may be related to nonepileptic attack disorder.

Symptoms of anxiety in epilepsy

Symptoms of anxiety in epilepsy may result or be exacerbated by psychological reactions, including responses to the unpredictability of seizures and restrictions of normal activities.

This results in low self­esteem, stigmatization, and social rejection.[1, 83, 84] According to Goldstein and Harden, epileptic events can produce symptoms indistinguishable from those

of primary anxiety disorder.[85]

Fear and anxiety are often associated with simple partial seizures. Torta and Keller estimated that fear occurs as an aura in as many as 15% of patients,[11] and Goldstein and Harden concluded from several studies that fear is one of the most common ictal emotions.[85]

Ictal anxiety symptoms manifest as fear or panic, sometimes with other characteristics of temporal discharges, such as depersonalization and déjà vu, as well as other psychological

and autonomous phenomena.[1, 86]

Anxiety in association with type of epilepsy and frequency of seizures

The highest rates of psychiatric comorbidities, including anxiety, are reported in patients with chronic, refractory seizure disorders.[1, 83, 86, 87]

Interestingly, however, Goldstein et al found that patients with epilepsy with high seizure frequency had lower anxiety scores than did patients with lower seizure frequency.[88]

The risk of anxiety is higher in focal (more frequent in temporal lobe) epilepsy than in generalized epilepsy. In patients with temporal lobe epilepsy, Trimble et al reported that 19% of the patients were diagnosed with anxiety and 11% were diagnosed with depression.

Edeh and Toone found that patients with temporal lobe epilepsy scored higher for anxiety than did those with focal, nontemporal lobe epilepsy.[4]

Anxiety can also be seen in frontal lobe epilepsy.

Ictal and interictal anxiety

Anxiety in epileptic patients may occur as an ictal phenomenon, as normal interictal emotion or as part of an accompanying anxiety disorder, as part of an accompanying depressive disorder, or in association with nonepileptic, seizurelike events as part of an underlying primary anxiety disorder.

Interictal anxiety has a great influence on the quality of life of patients, since most of them have a permanent fear of new discharges. Torta and Keller have estimated that as many as 66% of patients with epilepsy report interictal anxiety. Goldstein and Harden proposed 2 major psychological mechanisms for this, as follows:

Fear of seizure recurrence (seizure phobia) Issues surrounding locus of control

They concluded that documented cases of actual seizure phobia are rare but that a sense of dispersed locus of control can cause profound problems in patients with epilepsy.

Treatment

Several studies have shown that pregabalin, used as an adjunct for partial seizures, has been an effective, rapidly active, and safe treatment for generalized anxiety disorder.

Research

Although, as shown above, studies looking into the association between anxiety and epilepsy have been performed, because of the difficulty in separating the anxiety that accompanies a chronic disease from pathologic anxiety, studies investigating anxiety in epilepsy have nonetheless been relatively few.

Personality Disorders

Personality disorders in epileptic patients can cause abnormal behavior that can have a direct impact on seizure control and quality of life. The question of the relationship has a long history and remains controversial. In 1975, Woxman and Geschwind described a syndrome consisting of circumstantiality (excessive verbal output, stickiness, and hypergraphia), altered sexuality, and intensified mental life in a patient with temporal lobe epilepsy. It was called

Geschwind syndrome.[89]

Bensan and Herman reported that data are insufficient to state with certainty that a consistent pattern of behavioral changes occur in patient with temporal lobe epilepsy. The complex partial epilepsy should not be diagnosed on the basis of the presence of Geschwind

syndrome without any paroxysmal episodes that can be proven to be epileptic.[90]

The link of personality disorders to epilepsy was not only seen in temporal lobe epilepsy. Trinka et al found that personality disorders were present in 23% of patients with juvenile

myoclonic epilepsy.[91]

Trimble has summarized the data and concluded that the personality profile of a patient with epilepsy can be explained by a complex combination of the effect of (1) dealing with a chronic illnesses, (2) AED effects, (3) and temporal lobe pathology. He supported that certain personality disturbances in epilepsies should be viewed as associated with cerebral

abnormalities that also lead to seizures.[92] Attention­Deficit/Hyperactivity Disorder

Attention­deficit/hyperactivity disorder (ADHD) is another psychiatric comorbidity in patients with epilepsy and is more common in children. The co­occurrence may result from altered neurobiological mechanisms involved in early brain development.

The incidence of ADHD is about 7.76 cases per 1000 person­years in patients with epilepsy and 3.22 in patients without epilepsy. The incidence of epilepsy is 3.24 cases per 1000

person­year in patient with ADHD and 0.78 in those without ADHD.[93]
A neuropsychiatrist may find difficulty in differentiating impaired attention secondary to

absence of seizure and attention deficit as a phenotypical representation of ADHD.

Many AEDs can cause symptoms mimic ADHD, and the most common implicated are the GABAergic drugs such as barbiturates, benzodiazepines, and vigabatrin.

Methylphenidate can cause aggravate seizures in patients with ADHD, although generally it is considered safe in those who are seizure free.[94]

Psychotropic Effects of Antiepileptic Drugs

Knowledge about the psychotropic effects of AEDs is crucial and yet very limited in the epilepsy population. Evidence suggests that lamotrigine and the vagal nerve stimulator may have antidepressant properties that could be of use in light of common comorbid depression.

Carbamazepine, valproate, lamotrigine, and possibly oxcarbazepine may have mood stabilizing properties. Gabapentin, pregabalin, and tiagabine may have anxiolytic benefits.

There is a risk of depression related to barbiturates and topiramate, and possibly to phenytoin. Underlying depression and anxiety symptoms may be exacerbated by levetiracetam, while psychotic symptoms, albeit rare, have been reported with topiramate,

levetiracetam, and zonisamide.[95]
Psychiatric Disorders and Epilepsy Surgery

Generally, psychiatric outcomes improve or no changes are noted with epilepsy surgery. A history of psychiatric disorders before epilepsy surgery is associated with poorer chance of postsurgical seizure remission. After resective surgery, only patients with good or excellent seizure control had sustained long­term improvement in mood.

Postsurgical patients had higher suicidal mortality rate compared with the general population, and people who continue to have seizures after surgery had a higher suicidal mortality rate,

in contrast to those who were seizure free after surgery (4­5 times).[96] In a series of 26 patients, gamma knife radiosurgery for mesial temporal lobe epilepsy showed no significant

psychiatric changes from preoperative baseline for up to 24 months.[97]
The risk factors for depression after epilepsy surgery include preoperative history of mood

disorders and mesial temporal lobe surgery.

Disturbed behavior may interfere with the preoperative evaluation, and the patient may not be able to provide informed consent for investigation and surgery.

Vagus nerve stimulation showed better responses in patients with chronic major depressive

disorders over 12 months of study.[98, 99] In small studies, Elger et al and Harden et al showed that treatment with vagal nerve stimulation improves depression in epileptics independent of effects on seizure frequency. Vagal nerve stimulation is a useful therapeutic

tool in treatment­resistant depression.[100] Patient and Family Education

For patient education information, see Epilepsy, Depression, Schizophrenia, Bipolar Disorder, and Anxiety.

The following Web sites are useful patient and family education tools:

American Epilepsy Society
Centers for Disease Control and Prevention, Epilepsy
Epilepsy.com
Epilepsy Foundation
Epilepsy Foundation, Communities
MayoClinic.com, Epilepsy
Medline Plus, Epilepsy
National Institute of Neurological Disorders and Stroke, NINDS Epilepsy Information Page

Conclusion

Psychiatric comorbidities in patients with epilepsy are relatively frequent. Despite the high prevalence rates, few data are available. Because of this, the data used are from primary psychiatric disorders, assuming it can be applicable to patients with epilepsy.

Early recognition and management of psychiatric disorders in patients with epilepsy is extremely important, because it improves the quality of life, decreases suicidality, and aids in better seizure control.

Contributor Information and Disclosures

Author
Fahad Salih Algreeshah, MD Head of Neurology Unit, Department of Medicine, King Saud Medical City

Disclosure: Nothing to disclose.

Coauthor(s)
Selim R Benbadis, MD Professor, Director of Comprehensive Epilepsy Program, Departments of Neurology and Neurosurgery, Tampa General Hospital, University of South Florida College of Medicine

Selim R Benbadis, MD is a member of the following medical societies: American Academy of Neurology, American Academy of Sleep Medicine, American Clinical Neurophysiology Society, American Epilepsy Society, and American Medical Association

Disclosure: UCB Pharma Honoraria Speaking, consulting; Lundbeck Honoraria Speaking, consulting; Cyberonics Honoraria Speaking, consulting; Glaxo Smith Kline Honoraria Speaking, consulting; Sleepmed/DigiTrace Honoraria Consulting; Sunovion Consulting fee None; Supernus Speaking, consulting; Upsher­Smith Grant/research funds None

Specialty Editor Board
Andrew S Blum, MD, PhD Director, Adult Epilepsy and EEG Laboratory, Comprehensive Epilepsy Program, Rhode Island Hospital; Associate Professor of Neurology, The Warren Alpert Medical School of Brown University

Andrew S Blum, MD, PhD is a member of the following medical societies: American Academy of Neurology, American Epilepsy Society, and Massachusetts Medical Society

Disclosure: Nothing to disclose.

Francisco Talavera, PharmD, PhD Adjunct Assistant Professor, University of Nebraska Medical Center College of Pharmacy; Editor­in­Chief, Medscape Drug Reference

Disclosure: Medscape Salary Employment

Chief Editor
Jose E Cavazos, MD, PhD, FAAN, FANA, FACNS Professor with Tenure, Departments of Neurology, Pharmacology, and Physiology, Assistant Dean for the MD/PhD Program, Program Director of the Clinical Neurophysiology Fellowship, University of Texas School of Medicine at San Antonio; Co­Director, South Texas Comprehensive Epilepsy Center, University Hospital System; Director, San Antonio Veterans Affairs Epilepsy Center of Excellence and Neurodiagnostic Centers, Audie L Murphy Veterans Affairs Medical Center

Jose E Cavazos, MD, PhD, FAAN, FANA, FACNS is a member of the following medical societies: American Academy of Neurology, American Clinical Neurophysiology Society, American Epilepsy Society, American Neurological Association, and Society for Neuroscience

Disclosure: LGCH, Inc Ownership interest Consulting

Additional Contributors
Pedro E Hernandez­Frau, MD Clinical Neurophysiology Fellow, Department of Neurology, Tampa General Hospital, University of South Florida College of Medicine

Pedro E Hernandez­Frau, MD is a member of the following medical societies: American Academy of Neurology

Disclosure: Nothing to disclose.

References

  1. Schmitz EB, Robertson MM, Trimble MR. Depression and schizophrenia in epilepsy: social and biological risk factors. Epilepsy Res. May 1999;35(1):59­68. [Medline].
  2. Kanner AM, Barry JJ, Gilliam F, et al. Psychiatric Comorbidities in epilepsy: Streamlining Recognition and Diagnosis to Improve Quality of Life. Counselling Points. 2009;1:1­15.
  3. Sackellares JC, Berent S. Psychological Disturbances in Epilepsy. Neurology. Jan 11 2000;54(1):8­14. [Medline].
  4. Gibbs FA. Ictal and non­ictal psychiatric disorders in temporal lobe epilepsy. 1951. J Neuropsychiatry Clin Neurosci. Spring 1997;9(2):293­6. [Medline].
  5. Vuilleumier P, Jallon P. [Epilepsy and psychiatric disorders: epidemiological data]. Rev Neurol (Paris). May 1998;154(4):305­17. [Medline].
  6. Tucker GJ. Seizure disorders presenting with psychiatric symptomatology. Psychiatr Clin North Am. sep 1998;21(3):625­35. [Medline].
  7. Torta R, Keller R. Behavioral, psychotic, and anxiety disorders in epilepsy: etiology, clinical features, and therapeutic implications. Epilepsia. 1999;40 Suppl 10:S2­20. [Medline].
  8. Tellez­Zenteno JF, Patten SB, Jetté N, Williams J, Wiebe S. Psychiatric comorbidity in epilepsy: a population­based analysis. Epilepsia. Dec 2007;48(12):2336­44. [Medline].
  9. Ettinger A, Reed M, Cramer J. Depression and comorbidity in community­based patients with epilepsy or asthma. Neurology. Sep 28 2004;63(6):1008­14. [Medline].
  10. Kobau R, Gilliam F, Thurman DJ. Prevalence of self­reported epilepsy or seizure disorder and its associations with self­reported depression and anxiety: results from the 2004 HealthStyles Survey. Epilepsia. Nov 2006;47(11):1915­21. [Medline].
  11. Barry J, Lembke A, Gisbert PA, et al. Affective disorders in epilepsy. In: Ettinger AB, Kanner AM. Psychiatric issues in Epilepsy: A Practical Guide to Diagnosis and Treatment. Philadelohia PA: Lippincott Williams & Williams; 2007:203­247.
  12. Jobe PC, Dailey JW, Wernicke JF. A noradrenergic and serotonergic hypothesis of the linkage between epilepsy and affective disorders. Crit Rev Neurobiol. 1999;13(4):317­56. [Medline].
  13. Jobe PC. Common pathogenic mechanisms between depression and epilepsy: an experimental perspective. Epilepsy Behav. Oct 2003;4 Suppl 3:S14­24. [Medline].
  14. Gibbs FA. Ictal and non­ictal psychiatric disorders in temporal lobe epilepsy. J Nerv Ment Dis. Jun 1951;113(6):522­8. [Medline].
  15. Perez MM, Trimble MR. Epileptic psychosis­­diagnostic comparison with process schizophrenia. Br J Psychiatry. 137:245­9. [Medline].
  16. Qiu A, Wang L, Younes L, Harms MP, Ratnanather JT, Miller MI, et al. Neuroanatomical asymmetry patterns in individuals with schizophrenia and their non­ psychotic siblings. Neuroimage. Oct 1 2009;47(4):1221­9. [Medline]. [Full Text].
  17. Witthaus H, Mendes U, Brüne M, Ozgürdal S, Bohner G, Gudlowski Y, et al. Hippocampal subdivision and amygdalar volumes in patients in an at­risk mental state for schizophrenia. J Psychiatry Neurosci. Jan 2010;35(1):33­40. [Medline]. [Full Text].
  18. Kuroki N, Shenton ME, Salisbury DF, Hirayasu Y, Onitsuka T, Ersner­Hershfield H, et al. Middle and inferior temporal gyrus gray matter volume abnormalities in first­ episode schizophrenia: an MRI study. Am J Psychiatry. Dec 2006;163(12):2103­10. [Medline]. [Full Text].
  19. Suzuki M, Zhou SY, Takahashi T, Hagino H, Kawasaki Y, Niu L, et al. Differential contributions of prefrontal and temporolimbic pathology to mechanisms of psychosis. Brain. Sep 2005;128:2109­22. [Medline].
  1. van Lutterveld R, Sommer IE, Ford JM. The neurophysiology of auditory hallucinations ­ a historical and contemporary review. Front Psychiatry. May 16 2011;2:28. [Medline]. [Full Text].
  2. Tebartz Van Elst L, Baeumer D, Lemieux L, Woermann FG, Koepp M, Krishnamoorthy S, et al. Amygdala pathology in psychosis of epilepsy: A magnetic resonance imaging study in patients with temporal lobe epilepsy. Brain. Jan 2002;125:140­9. [Medline].
  3. Kanner AM. Psychosis of Epilepsy: A Neurologist’s Perspective. Epilepsy Behav. Aug 2000;1(4):219­227. [Medline].
  4. So NK, Savard G, Andermann F, Olivier A, Quesney LF. Acute postictal psychosis: a stereo EEG study. Epilepsia. Mar­Apr 1990;31(2):188­93. [Medline].
  5. Stagno SJ. Psychiatric aspects of epilepsy. In: Wyllie E. The Treatment of Epilepsy. Baltimore MD: Williams & Wilkins; 1997:1131­1144.
  6. Logsdail SJ, Toone BK. Post­ictal psychoses. A clinical and phenomenological description. Br J Psychiatry. Feb 1988;152:246­52. [Medline].
  7. Dongier S. Statistical study of clinical and electroencephalographic manifestations of 536 psychotic episodes occurring in 516 epileptics between clinical seizures. Epilepsia. Dec 1959;1:117­42. [Medline].
  8. Slater E, Beard AW, Glithero E. The schizophrenialike psychoses of epilepsy. Br J Psychiatry. Jan 1963;109:95­150. [Medline].
  9. Onuma T, Adachi N, Ishida S, Katou M, Uesugi S. Prevalence and annual incidence of psychosis in patients with epilepsy. Psychiatry Clin Neurosci. Jun 1995;49(3):S267­ 8. [Medline].
  10. Adachi N, Matsuura M, Okubo Y, Oana Y, Takei N, Kato M, et al. Predictive variables of interictal psychosis in epilepsy. Neurology. Nov 14 2000;55(9):1310­4. [Medline].
  11. Fenwick P. Psychiatric disorder and epilepsy. In: Hopkins A, Shorvon S, Cascino G. Epilepsy. London: 1995:453–502.
  12. Schmitz B, Wolf P. Psychoses in epilepsy. In: Epilepsy and behavior. New York: Wiley­Liss; 1991:97­128.
  13. Trimble M. Psychoses in epilepsy. New York: 1991.
  14. Tarulli A, Devinsky O, Alper K. Progression of postictal to interictal psychosis.

    Epilepsia. Nov 2001;42(11):1468­71. [Medline].

  15. Kristensen O, Sindrup EH. Psychomotor epilepsy and psychosis. I. Physical aspects.

    Acta Neurol Scand. May 1978;57(5):361­9. [Medline].

  16. Jensen I, Larsen JK. Mental aspects of temporal lobe epilepsy. Follow­up of 74 patients after resection of a temporal lobe. J Neurol Neurosurg Psychiatry. Mar 1979;42(3):256­65. [Medline]. [Full Text].
  17. Reid AH. Psychoses in adult mental defectives. II. Schizophrenic and paranoid psychoses. Br J Psychiatry. Feb 1972;120(555):213­8. [Medline].
  18. Gillberg C, Persson E, Grufman M, Themner U. Psychiatric disorders in mildly and severely mentally retarded urban children and adolescents: epidemiological aspects. Br J Psychiatry. Jul 1986;149:68­74. [Medline].
  19. Harris JC. Assessment. diagnosis, and treatment of developmental disorders. In: McConnell HW, Snyder PJ, eds. Developmental neuropsychiatry. 2. New York NY: Oxford University Press; 1998:169­186.
  20. Mellers JD, Adachi N, Takei N, Cluckie A, Toone BK, Lishman WA. SPET study of verbal fluency in schizophrenia and epilepsy. Br J Psychiatry. Jul 1998;173:69­74. [Medline].
  21. Onuma T. Limbic lobe epilepsy with paranoid symptoms: analysis of clinical features and psychological tests. Folia Psychiatr Neurol Jpn. 1983;37(3):253­7. [Medline].
  22. Trimble MR, Schmitz B. The psychoses of epilepsy: a neurobiological perspective. In: McConnell HW, Snyder PJ. Psychiatric Comorbidity in Epilepsy. 43(8). Washington DC and London: American Psychiatric Press; 1998:169­186.
  23. Tandon R, DeQuardo JR. Psychoses and epilepsy. In: Sackellares JC Berent S. Psychological Disturbances in Epilepsy. Boston: Butterworth­Heinemann; 1996:171­ 189.
  1. Kanner AM. Psychosis of Epilepsy: A Neurologist’s Perspective. Epilepsy Behav. Aug 2000;1(4):219­227. [Medline].
  2. Mazza M, Di Nicola M, Della Marca G, Janiri L, Bria P, Mazza S. Bipolar disorder and epilepsy: a bidirectional relation? Neurobiological underpinnings, current hypotheses, and future research directions. Neuroscientist. Aug 2007;13(4):392­404. [Medline].
  3. Chang HJ, Liao CC, Hu CJ, Shen WW, Chen TL. Psychiatric disorders after epilepsy diagnosis: a population­based retrospective cohort study. PLoS One. 2013;8(4):e59999. [Medline]. [Full Text].
  4. Ettinger AB, Reed ML, Goldberg JF, Hirschfeld RM. Prevalence of bipolar symptoms in epilepsy vs other chronic health disorders. Neurology. Aug 23 2005;65(4):535­40. [Medline].
  5. Kanner AM, Balabanov A. Depression and epilepsy: how closely related are they?. Neurology. Apr 23 2002;58(8 Suppl 5):S27­39. [Medline].
  6. Mendez MF, Cummings JL, Benson DF. Depression in epilepsy. Significance and phenomenology. Arch Neurol. Aug 1986;43(8):766­70. [Medline].
  7. Perrine K, Hermann BP, Meador KJ, Vickrey BG, Cramer JA, Hays RD, et al. The relationship of neuropsychological functioning to quality of life in epilepsy. Arch Neurol. Oct 1995;52(10):997­1003. [Medline].
  8. Robertson MM, Trimble MR, Townsend HR. Phenomenology of depression in epilepsy. Epilepsia. Jul­Aug 1987;28(4):364­72. [Medline].
  9. Boylan LS, Flint LA, Labovitz DL, Jackson SC, Starner K, Devinsky O. Depression but not seizure frequency predicts quality of life in treatment­resistant epilepsy. Neurology. Jan 27 2004;62(2):258­61. [Medline].
  10. Kanner AM, Balabanov A. Depression and epilepsy: how closely related are they?. Neurology. Apr 23 2002;58(8 Suppl 5):S27­39. [Medline].
  11. Baker GA. Depression and suicide in adolescents with epilepsy. Neurology. Mar 28 2006;66(6 Suppl 3):S5­12. [Medline].
  12. Schildkraut JJ. The catecholamine hypothesis of affective disorders: a review of supporting evidence. Am J Psychiatry. Nov 1965;122(5):509­22. [Medline].
  13. Jobe PC, Dailey JW, Wernicke JF. A noradrenergic and serotonergic hypothesis of the linkage between epilepsy and affective disorders. Crit Rev Neurobiol. 1999;13(4):317­56. [Medline].
  14. Flor­Henry P. Psychosis and temporal lobe epilepsy. A controlled investigation. Epilepsia. Sep 1969;10(3):363­95. [Medline].
  15. Lopez­Rodriguez F, Altshuler L, Kay J. Depression and laterality of epileptogenic region in patients with medically refractory temporal lobe seizures. Epilepsia. 1999;40(suppl7):60.
  16. Kanner AM, Balabanov A. Depression and epilepsy: how closely related are they?. Neurology. Apr 23 2002;58(8 Suppl 5):S27­39. [Medline].
  17. Harden CL, Goldstein MA. Mood disorders in patients with epilepsy: epidemiology and management. CNS Drugs. 2002;16(5):291­302. [Medline].
  18. Baker GA, Smith DF, Dewey M, Jacoby A, Chadwick DW. The initial development of a health­related quality of life model as an outcome measure in epilepsy. Epilepsy Res. Sep 1993;16(1):65­81. [Medline].
  19. Hermann BP. Quality of life in epilepsy. J Epilepsy. 1992;5:153­165.
  20. Perrine K, Hermann BP, Meador KJ, Vickrey BG, Cramer JA, Hays RD, et al. The relationship of neuropsychological functioning to quality of life in epilepsy. Arch Neurol. Oct 1995;52(10):997­1003. [Medline].
  21. Dodrill CB. Behavioral effects of antiepileptic drugs. Adv Neurol. 1991;55:213­24. [Medline].
  22. Harden CL, Goldstein MA. Mood disorders in patients with epilepsy: epidemiology and management. CNS Drugs. 2002;16(5):291­302. [Medline].
  23. Hermann BP. Psychopathology in epilepsy and learned helplessness. Med Hypotheses. Jun 1979;5(6):723­9. [Medline].
  24. McConnell H, Duncan, D. . Treatment of psychiatric comorbidity in epilepsy. In: McConnell H, Snyder P. Psychiatric Comorbidity in Epilepsy. 245. Washington, DC:

American Psychiatric Press; 1998.

  1. Hermann BP, Jones JE. Depression in Epilepsy: What is the Extent of the Current Problem?. In: Mood Disorders in Epilepsy: Bridging the Gap Between Psychiatry and Neurology. American Epilepsy Society and IntraMed Scientific Solutions. 2005;3­11.
  2. Williams D. The structure of emotions reflected in epileptic experiences. Brain. Mar 1956;79(1):29­67. [Medline].
  3. Blumer D. Epilepsy and disorders of mood. In: Smith D, Treiman D, Trimble D. Advances in Neurology. 55. New York: Raven Press; 185­195.
  4. Kanner AM. How to recognize depression in epilepsy. In: Mood Disorders in Epilepsy: Bridging the Gap Between Psychiatry and Neurology. American Epilepsy Society and IntraMed Scientific Solutions. 2005;13­21.
  5. Jones JE, Hermann BP, Barry JJ, Gilliam FG, Kanner AM, Meador KJ. Rates and risk factors for suicide, suicidal ideation, and suicide attempts in chronic epilepsy. Epilepsy Behav. Oct 2003;4 Suppl 3:S31­8. [Medline].
  6. Thome­Souza S, Kuczynski E, Assumpção F Jr, Rzezak P, Fuentes D, Fiore L, et al. Which factors may play a pivotal role on determining the type of psychiatric disorder in children and adolescents with epilepsy?. Epilepsy Behav. Dec 2004;5(6):988­94. [Medline].
  7. Rafnsson V, Olafsson E, Hauser WA, Gudmundsson G. Cause­specific mortality in adults with unprovoked seizures. A population­based incidence cohort study. Neuroepidemiology. Oct 2001;20(4):232­6. [Medline].
  8. Kanner AM. Depression in epilepsy: prevalence, clinical semiology, pathogenic mechanisms, and treatment. Biol Psychiatry. Aug 1 2003;54(3):388­98. [Medline].
  9. Kanner AM, Soto A, Gross­Kanner H. Prevalence and clinical characteristics of postictal psychiatric symptoms in partial epilepsy. Neurology. Mar 9 2004;62(5):708­ 13. [Medline].
  10. Kanner AM, Barry JJ, Gilliam F. Psychiatric Comorbidities in epilepsy: Streamlining Recognition and Diagnosis to Improve Quality of Life. Counseling Points. 2009;1:1­15.
  11. Kraepelin E. Leipzig. Psychiatrie. 3. Germany: Johann Ambrosius Barth; 1923.
  12. Bleuler E. Lehrbuch der. Psychiatrie. 8. Berlin Germany: Springer; 1949:704­6.
  13. Schmitz B. Psychiatric syndromes related to antiepileptic drugs. Epilepsia. 1999;40 Suppl 10:S65­70. [Medline].
  14. McConnell H, Duncan D. Behavioral effects of antiepileptic drugs. In: McConnell H, Duncan D. Psychiatric Comorbidity in Epilepsy. Washington DC and London: American Psychiatric Press; 1998b:205­244.
  15. Harden CL. The co­morbidity of depression and epilepsy: epidemiology, etiology, and treatment. Neurology. Sep 24 2002;59(6 Suppl 4):S48­55. [Medline].
  16. Harden CL, Pulver MC, Ravdin LD, Nikolov B, Halper JP, Labar DR. A Pilot Study of Mood in Epilepsy Patients Treated with Vagus Nerve Stimulation. Epilepsy Behav. Apr 2000;1(2):93­99. [Medline].
  17. Williams D. The structure of emotions reflected in epileptic experiences. Brain. Mar 1956;79(1):29­67.
  18. Vazquez B, Devinsky O. Epilepsy and anxiety. Epilepsy Behav. 2003;4 (Suppl 4):520­ 525.
  19. Goldstein MA, Harden CL. Epilepsy and Anxiety. Epilepsy Behav. Aug 2000;1(4):228­ 234. [Medline].
  20. Beyenburg S, Mitchell AJ, Schmidt D, Elger CE, Reuber M. Anxiety in patients with epilepsy: systematic review and suggestions for clinical management. Epilepsy Behav. Sep 2005;7(2):161­71. [Medline].
  21. Marsh L, Rao V. Psychiatric complications in patients with epilepsy: a review. Epilepsy Res. Mar 2002;49(1):11­33. [Medline].
  22. Goldstein MA, Harden CL, Radvin LD. Does anxiety in epilepsy patients decrease with increasing seizure frequency?. Epilepsia. 1999;40(Suppl8):60­61.
  23. Waxman SG, Geschwind N. The interictal behavior syndrome of temporal lobe epilepsy. Arch Gen Psychiatry. Dec 1975;32(12):1580­6. [Medline].
  24. Benson DF, Hermann B. Personality disorders. In: Engel J, Pedley TA, eds. Epilepsy:

A Comprehensive Textbook. Philadelphia: Lippincott­Raven; 2065­2070.

  1. Trinka E, Kienpointner G, Unterberger I, Luef G, Bauer G, Doering LB, et al. Psychiatric comorbidity in juvenile myoclonic epilepsy. Epilepsia. Dec 2006;47(12):2086­91. [Medline].
  2. Trimble M. Treatment issues for personality disorders in epilepsy. Epilepsia. Mar 2013;54 Suppl 1:41­5. [Medline].
  3. Chou IC, Chang YT, Chin ZN, Muo CH, Sung FC, Kuo HT, et al. Correlation between epilepsy and attention deficit hyperactivity disorder: a population­based cohort study. PLoS One. 2013;8(3):e57926. [Medline]. [Full Text].
  4. Kaufmann R, Goldberg­Stern H, Shuper A. Attention­deficit disorders and epilepsy in childhood: incidence, causative relations and treatment possibilities. J Child Neurol. Jun 2009;24(6):727­33. [Medline].
  5. Ettinger AB. Psychotropic effects of antiepileptic drugs. Neurology. Dec 12 2006;67(11):1916­25. [Medline].
  6. Hamid H, Devinsky O, Vickrey BG, Berg AT, Bazil CW, Langfitt JT. Suicide outcomes after resective epilepsy surgery. Epilepsy Behav. Mar 2011;20(3):462­4. [Medline].
  7. Quigg M, Broshek DK, Barbaro NM, Ward MM, Laxer KD, Yan G, et al. Neuropsychological outcomes after Gamma Knife radiosurgery for mesial temporal lobe epilepsy: a prospective multicenter study. Epilepsia. May 2011;52(5):909­16. [Medline]. [Full Text].
  8. Christmas D, Steele JD, Tolomeo S, Eljamel MS, Matthews K. Vagus nerve stimulation for chronic major depressive disorder: 12­month outcomes in highly treatment­refractory patients. J Affect Disord. Jun 28 2013;[Medline].
  9. Rong PJ, Fang JL, Wang LP, Meng H, Liu J, Ma YG, et al. Transcutaneous vagus nerve stimulation for the treatment of depression: a study protocol for a double blinded randomized clinical trial. BMC Complement Altern Med. Dec 14 2012;12:255. [Medline]. [Full Text].
  10. Elger G, Hoppe C, Falkai P, Rush AJ, Elger CE. Vagus nerve stimulation is associated with mood improvements in epilepsy patients. Epilepsy Res. Dec 2000;42(2­3):203­10. [Medline].

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This Post is Dedicated to TakingTheMaskOff.Com and Cortland Pfeffer, With Love

3 Comments

Read the English  Lyrics below first if you need to as this song is in Italian.

HUMAN BEINGS/ESSERI UMANI  or go to this link: https://youtu.be/U-4OrzSBfm8

Thank you, TTMO’s Cortland Pfeffer, you are a man of true courage. I thank you for your blog and for everything you have done and are doing in the world and for people who are or were where I have been.

http://www.takingthemaskoff.com

pam w.

Here are the Lyrics to HUMAN BEINGS, in English followed by the Italian (just in case anyone wants to sing along –as I did!)

HUMAN BEINGS/Esseri Humani

Nowadays, people judge you

Because of your appearance

They see only masks

They don’t even know who you are

You must show yourself invincible

Collecting trophies

But when silently you cry

You find out who you really are

I believe in human beings

I believe in human beings

I believe in human beings

The courageous ones

The courage of being human

I believe in human beings

I believe in human beings

I believe in human beings

The courageous ones

The courage of being human

Take my hand and stand up

You can trust me

I am an ordinary man

One out of many just like you

But what a splendor there is in you

In your fragility

And I remind you that we are not alone

Fighting this reality

I believe in human beings

I believe in human beings

I believe in human beings

The courageous ones

The courage of being human

I believe in human beings

I believe in human beings

I believe in human beings

The courageous ones

The courage of being human

Love, love, love

Won, wins and will always win

Love, love, love

Won, wins and will always win

Love, love, love

Won, wins and will always win

Love, love, love

Won, wins and will always win

I believe in human beings

I believe in human beings

I believe in human beings

The courageous ones

The 
courage of being human

I believe in human beings

I believe in human beings

I believe in human beings

The courageous ones

The courage of being human

Human beings

Human beings

Esseri umani

Oggi la gente ti giudica,
per quale immagine hai.
Vede soltanto le maschere,
non sa nemmeno chi sei.

Devi mostrarti invincibile,
collezionare trofei.
Ma quando piangi in silenzio,
scopri davvero chi sei.

Credo negli esseri umani.
Credo negli esseri umani.
Credo negli esseri umani
che hanno coraggio,
coraggio di essere umani

Credo negli esseri umani.
Credo negli esseri umani.
credo negli esseri umani
che hanno coraggio,
coraggio di essere umani.

Prendi la mano e rialzati,
tu puoi fidarti di me.
Io sono uno qualunque,
uno dei tanti, uguale a te.

Ma che splendore che sei,
nella tua fragilità.
E ti ricordo che non siamo soli
a combattere questa realtà.

Credo negli esseri umani.
Credo negli esseri umani.
Credo negli esseri umani che hanno coraggio,
coraggio di essere umani.

Credo negli esseri umani.
Credo negli esseri umani.
Credo negli esseri umani che hanno coraggio,
coraggio di essere umani.

Essere umani.

L’amore, amore, amore
ha vinto, vince, vincerà.
L’amore, amore, amore
ha vinto, vince, vincerà.

L’amore, amore, amore
ha vinto, vince, vincerà.
L’amore, amore, amore,
ha vinto, vince, vincerà.

Credo negli esseri umani.
Credo negli esseri umani.
Credo negli esseri umani che
hanno coraggio,
coraggio di essere umani.

Credo negli esseri umani.
Credo negli esseri umani.
Cedo negli esseri umani che hanno coraggio,
coraggio di essere umani.

Essere umani.
Essere umani.

Health, Mental Illness, Torture

Tortured and Thrown into the Hole. A nd Why I tell you: DO NOT APPLY FOR SOCIAL SECURITY DISABILITY PAYMENT

6 Comments

Ankle swollen and discolored from hours in 4-point punitive restraints the night before discharge/escape
Ankle swollen and discolored from hours in 4-point punitive restraints the night before discharge/escape

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The above is are just some bruises of many I received during my month-long course of “psychiatric treatment” at the Hartford Hospital’s Institute of Living, on the unit called Donnelly 2 South in January through Feb 2013. In  Connecticut, the Institute of Living, first known as the Retreat, and once quite famous as a posh sanatarium for the rich and famous though this is no longer true, was first made famous by  Clifford Beers, I believe, who wrote about similiar torture he underwent there just a hundred years ago in the book, A Mind That Found itself.
 (I WANT TO MAKE IT CLEAR THAT THIS WAS FROM 2013)

After burning my face with cigars and cigarettes, in response to command hallucinations, I spent the last month in Connecticut’s well-known Institute of Living (yeah the dangerous 6th month was JANUARY not February but nobody thought to check my math) being beaten up and trussed like a pig in four-point restraints almost daily for many many hours. Why did they deal me this sort of treatment? Why? Because “You do not follow directions”.

I DID NOT FOLLOW DIRECTIONS so they beat me up (despite my policy of non-resistance) and tied me, shackled me with leather and metal cuffs  to a bed for dozens upon dozens of hours.! Time after time I had to defecate in my own clothing, because they would not even give me bathroom breaks.  Get that? I was disobedient, so they shackled me to a bed as an excuse for treatment!

After this experience, I LOST ALL FAITH in the ability of any institution to do anyone any good who has a mental illness or sickness of the mind, or any emotional disorder or whatever you wish to call it. I GIVE UP! I will kill myself if anyone ever tries to send me back to such a cesspit of a place. I do not care if it is appointed like the Taj Mahal. NO ONE who works there is uncontaminated by the evil infecting such places. I may be the devil but I never wanted to be evil while they are ALL EVIL EVERY SINGLE ONE. I have NEVER been to a hospital where the people are kind and well meaning and where the treatment is actually kind and decent. Once in a while a single person, such as the Middlesex Hospital occupational therapist  Christobelle Payne, may stand out in memory as being a rare human being of warmth and dignity and  caring, but otherwise, they all to a one fail the test of being decent human specimens and all fail royally to be even normally humanly responsive to suffering persons. They are in it for the money and a cushy job, and don’t you forget it if you go into a psycho hospital, DO not expect to get well there. Expect deadening dulling drugs that never worked and the research tells so, and directions (ie ORDERS) that you HAVE To follow or ELSE.

Get out of there as quickly as possible, because your life depends on it. I am serious. DO NOT LINGER expecting care and treatment or to feel better no matter how helpful you might want it to be.

Furthermore. if you are a young person, do not listen to the sweet seductive advice that some may give you that you woul do well to go for “disability” and social security payments. THAT Is a load of total crapola and the worst thing anyone could tell anyone under the age of 40. Too many young people are being 1) told as children that they have Oppositional Defiant Disorder or ADHD, both of which are adults’ and psychiatrists’ ways of saying, “You don’t as we tell you to huh? Okay, then, we will label you mentally ill in retaliation!” But that is not the worst because they then “medicate” you young children or adolescents with Ritalin or SSRIs and if those cause the anticipated problems of irritability and anger management problems, and outburts and moodswings (!!!), then “add on” atypical antipsychotic drugs (and who would not think to themselves, in momentary awe and self-pity, “OOOh, I must really be Mentally Ill if I take an ANTI-PSYCHOTIC drug, right???”)

The thing is, they will justify these drugs with another label, a label imposed because you now have an IATROGENIC or doctor-induced, medication-caused illness,  like some version of “bipolar”, or if they really dislike you, the untreatable Borderline Personality Disorder, which only means largely that you are youngish, female and emotional and angry and don’t shut up when they want you do. (Test: Do they want you in DBT classes? Then you have the BPD diagnosis, trust me. Dialectical behavioral therapy is FOR “borderlines” no matter how hard they argue that it is open all…)

NEITHER of these labels reflect your or anyone else’s REALITY, mind you, they are ONLY labels, and neither Bipolar nor borderline have ever ever been shown to be real bona fide physiological illnesses or even (for all the talk) genetic diseases. What is a “real mental illness” anyway? No one agrees on the diagnosis, in any one person, and no one can find any chemical test or neurotransmitter than it out of balance or even an anatomic difference between the ill and the well. They only have the person’s words and the doctors opinions… If you disagree, prove what you what to argue. Do not tell me, well Manic depression “runs in the family” because that is horseshit. Messiness and not making beds can seem to run in a family, you know why? Because NO ONE breaks the cycle and teaches the kids the value of neatness and making beds every morning. It matter where and how and WITH whom you grow up, and the myths you grow up with matter just as much. The notion that  Manic-depression runs in your family is only that. A MYTH. but that doesn’t mean you cannot induce it or see it and make it real in your kids or yourself if you try hard enough.Lord knows teenaged angst these days is frequently dx’d as bipolar so jump on that bandwagon by bringing your child to a psychiatrist and they will be happy to oblige!

But do not think that your label of “Borderline” is something elevated and “nearly psychotic” as if that itself is anything superior to other MIs. Trust me, when someone else calls you Borderline it is shorthand for MANIPULATIVE, DRAMATIC, attention-seeking, devious, lying…if you like those words, go ahead and claim the diagnosis for yourself, but i doubt you will. So why do you vaunt it, and flaunt it? Do you not understand that the hospital and therapists actually hate your guts? Get a hold of your chart and READ IT. it is YOUR right and it might open your eyes to what those people REALLY think of you…It won’t be pretty or nice at all, but it will be instructive, and maybe you won’t want to be Mentally Ill with Borderline Personality Disorder any longer, hey?

Another few words as to young people going for social Security Diabilty: Someone asked me about this and my response is unequivocal. It is the very same trap that Welfare was for young mothers with too many children years ago…It had positives to it, but it ended up trapping many and many generations in poverty of the most extreme sport for, well, generations. Speaking just for myself, IF anyone had had the time to find out where my talents lay, in art and writing, and had been able to provide the community and home supports for me that I truly needed, rather than funding my rent and hospital stays largely, plus a visiting nurses visit to bring me medications. I might have blossomed and never ended up recurrently in the hospital for decades. I mean this from the depths of my broken heart. I was always an extraordinarily talented and intelligent person, and everyone knew it. At the same time, I had very real problems. But no one ever said, LET’S NOT FOCUS ON YOUR PROBLEMS. LET’S SEE HOW FAR YOUR STRENGTHS CAN TAKE YOU!

You know, I still cannot socialize  or be away from home for long, and I cannot tolerate any 4- hour work day, far less an 8-hour work day…I do not have ordinary or “normal” stamina in any fashion. Narcolepsy is partly to blame and probably the mental issues and whatever else is at fault, I cannot say. But an extreme lack of stamina that eating well and exercise daily does nothing to help is a FACT of my existence. Nevertheless, I do not believe that I had to stay on Disability and “relief” all my life and be a leech on society…No, i just had no one from the ADA or any social services (god forbid a family member or friend) looking at my individual needs and assessing what I could do to earn a living and helping me, in deep and truly helpful way.,..I believe that my life might have been very different and more productive had the AMERICAN system not dumped me onto antipsychotic drugs and social security and essentially thrown me away…

But it will do it to you too, and you are assenting to it, if you go for disability at at young age. DO NOT DO IT. You will NEVER get free from those checks. NO ONE EVER DOES, unless they marry or get rich some other way…It is the worse decision you will ever make. I know that some living situations demand a check for rent, but don’t assent to their demands, make a radical decision to take charge of your own life, CHALLENGE the psychiatrist’s diagnosis. How long have they known you for anyhow???? Challenge the pills, or at least the dosage. DO YOU FUNCTION BETTER NOW???? that is the only question that matters. If not, the pills do not help. PERIOD.  NEVER take any pill on  a “For the rest of my life basis!”

Oh, I am so angry and broken at the moment that I cannot speak more. But if I can later on, I will say more to explain. At the moment, I have to attend to too many PHYSICAL bruises and to find a way back to sanity on my own, having  been driven to the brink of near extinction by one of the best known hospitals in this state. At the moment I am both rigid with rage and so confused and broken that I scarcely know how to continue, or whether I even want to. Why bother? Why bother? How can people be such  monsters, and in such monstrously powerful places and ways. I hurt so deeply and feel I will never trust an single person ever again when they say, “Come let us help you. You need our help.”  YOUR help? Like being raped, I need your F—ing help!

GO jump in a lake of snot is what I should say to all of you so called helpers. I’d rather die. Go F— yourself.

Abuse, Michael E Balkunas MD, Seclusion and Restraints, Truth

Google Review of Michael E Balkunas, Unit Chief of W-1, Adult Psychiatry, Hospital of Central Connecticut

6 Comments

NOTE: THIS may be Dr Michael E Balkunas’s forgotten relative, also apparently an MD or he plays one on TV, I dunno! All I know is that the men look amazingly alike!  They could be cousins like the twins on that Patty Duke show many many eons ago…What is important to remember is that they DO share a certain number of aberrant genes, and I believe that one of theirs leads to sadism…

(Note that My GOOGLE Review (edited)  follows)

How very similiar Michael and Charlie look...and and no wonder, since they share the same sadism genes!
How very similar Michael and Charlie look…and and no wonder, since they share the same sadism genes!

In May 2014, Michael E. Balkunas, MD, chief psychiatrist of the W-1 unit of the Hospital of Central Connecticut in New Britain, angered by my rejection of him because I could not speak (he refused me the use of any writing materials) decided to diagnose me with Borderline Personality Disorder despite having asked for in-put from my family and my outside psychiatrists who all stated that no such BPD or any PD symptoms ever existed. He did this despite my having been admitted with a decades-long Axis 1 diagnosis of paranoid schizophrenia (and with PTSD since 2009 due to hospital brutality and abuses).

I believe he added the PD diagnosis in order to justify the implementation of an inhumane Behavioral Treatment Plan which resulted in four-point mechanical restraints and the use of a horrific  and freezing seclusion cell. As my Advance Directive stated clearly, even at the time, none of these modes of “treatment” in the past  ever led to anything but disaster.

At HOCC I was repeatedly secluded and even restrained, naked in a spread-eagle position, in 4-point leather cuffs for many hours, yet never was this because of any behavior indicating “imminent danger of causing serious bodily harm to self or others” as the Centers for Medicare and Medicaid require. They did this to me always and only because I was too loud, or because I disrupted the unit “milieu.”

Before I was double-locked into one of W-1’s soundproof isolation cells, the nurses might have the male security guards strip me naked “for safety’s sake.” No matter how compliant I was, they always injected me with three “punishment drugs.” Even when I said I would take them orally or offered my arm, they could choose to push me onto my face on a bare mattress, forcibly hold me down until I couldn’t breathe, and administered them in my buttocks.

I informed the guards about CMS rules regarding appropriate uses of seclusion. To their credit they seemed taken aback, but in the end they were always willing to follow orders and to inflict pain in order to ensure my rapid compliance.

Dr. Balkunas insisted again and again on the diagnosis of BPD yet he never treated me with any modality but antipsychotic drugs and never wrote about my exhibiting any BPD symptoms in his notes. In fact his whole stated rationale for starting commitment procedures to the Connecticut Valley State Hospital was that “antipsychotic drugs take time to work.”

The staff of Nurses and Mental Health Technicians at New Britain General Hospital W-1 and most certainly Dr. Michael Edward Balkunas, Adult Psychiatry Unit Chief, must to be re-educated about the evils of employing punishment or torture in mental health care. They should be given, in addition, many hours of intensive in-service training on trauma-informed treatment. But frankly, as a penalty for the extraordinary and sadistic abuses they long inflicted (knowingly with impunity) upon the mentally ill taken into their care, they deserve nothing less than to summarily lose their jobs and their licenses to practice — for good.

Listen Up Collage -- A message more than art.
Listen Up Collage — A message more than art.

Health, Mental Health, Music

Don’t Worry, Be Happy, and Dance, Cry, Hum along!

Video 8 Comments

 

If this doesn’t make you happy, I am very sorry…I myself despite a massive migraine and fears of vascular bleeds found mysefl directing a virtual orchestra in the midst of my pain and by the end, PooF! magically it was GONE! Miracle of miracles!

8D

Animals, Art, Health

Papier Mache Art and Recovery: An Update on Thanksgiving 2014

21 Comments

I wrote some or most of this in 2009 but I want to rewrite and update it..

Art, capital A, saved my life. It did more than that. Art gave me a new life, new hope, and something to get up for in the morning. It’s not that I’ve stopped writing. But I had been writing in a vacuum for a long time and needed an outlet for my creative urges that involved more than just my brain. Oh sure, writing involves the hands, too. But not in the way I mean. What I needed was, well, what do I mean? In some sense I needed more activity, if only because my poor brain shuts down and goes to sleep whenever I read, and it simply capitulates to narcolepsy whenever I am sedentary. I have indeed tried standing up while reading and writing, but this doesn’t work for someone whose feet swell very easily. And I find that standing up is just more distracting than anything.

But also  I felt an intense to make things, create objects or works of art that could be seen and touched and even smelled and if scratched or thrown to the ground, heard. I had no idea in 2009 that in 2014 I might even write a couple of rap songs before I succumbed to the impulse to retreat into self-imposed total mutism. If I were VIncent Van Gogh, I might even want to taste my art, but I will try to stick to real culinary arts when that urge overtakes me as I do not at the present time wish to be poisoned by cadmium red etc. Nevertheless, despite my lifelong love for words, I still wanted to create something physical, not just an imagined  or recalled world in words, however long-lasting.

I have always needed to work with my hands. I once wrote a poem called Hand Hunger which some silly psychoanalytic candidate insisted was sexual rather than seeing the references for what they clearly were, to making and creating and building with the hands, to MANUAL LABOR and not to — (sheesh!) masturbation! I mean, how stupid and dim can you get?

Anyhow, I needed to make something or do some sort of craft or artwork. Fearing/Knowing that I could not do “real art,” (YASS,that was ME only a few years ago, telling myself that I could never paint a face! Listen up all ye who think YOU can not  do art!) that I was not the stuff of which true artists are made, I always gravitated towards the crafty side of things. (But pray tell, what stuff is that, Pamela?)

So even when I – on a manic whim – dove into sculpture, creating that llama-in-a-day, Dolly the Llama,

Dolly the Llama at show

 

 

 

 

 

 

 

the result was mostly folk art, which is to say, unsophisticated, rustic, and at best a craft-like work. Sure, I was pretty proud that I’d made a lifesize animal that actually stood up firmly on its own four legs. But with a deli-container-head (underneath the papier mache) and huge mailing tube body, scarcely concealed, big enough to have once held a large amateur telescope, it didn’t look much like a llama. In fact, the result was not much more than that tube covered with a few layers of paper and glue, and all of it painted red. Nevertheless, I was happy enough with “Dolly the llama.” I have to confess though that it took me a entire year after the psychosis and mania were treated to finish her. Her saddle blanket have fooled many into tugging at the finge to see if it is real or not. a trompe-l’oeil — eye fooling — success that pleased me no end.

But a year-in-the-making was too much time to complete a craft or artwork, even a life-size llama. I came to dread the work by the time I got to applying the last few strokes of paint. You really need more drive than that to do art, but I didn’t seem to be able to sustain the energy or enthusiasm for much of anything. in fact, I’m not at all sure how I managed to write even my part of the book DIVIDED MINDS given those obstacles.

Then, during my hospitalization in 2007 it seems one obstacle was overcome: on Abilify plus the Abilify-tempering Geodon I suddenly had both energy and stamina* (see bottom of post for a later 2014 discussion of this). Or perhaps it is simply that the medications enabled a “well me” to come out, someone who could sustain an artistic effort, even if it was for the very first time. Given a different life I would have been doing this sort of thing all along had I known it was possible, had I had that kind of stamina… But I didn’t think about this, no, for me there was no looking back.

What I did not know at the time I wrote those words back in 2009, or at least  the connection I was unable to make, was that I had actually been on that same antipsychotic drug combination for a several years before this sudden transformation. But in late 2007, however, a small vascular malformation in my frontal lobe hemorrhaged. This was a small bleed, to be sure, but I later felt and some doctors have also agreed this was not impossible, that the timing was such that the bleed itself might in some sense have been responsible for the sudden production of Decorated Betsy

Decorated Betsy: Lifesize Papier Mache

 

 

 

 

 

 

 

 

 

and as my new-found compulsion to do art as well as the felt inability to stop…

 

Since that time I have jokingly said, “Well, a little brain damage (in the right place) never hurt anyone.” Of course, that is indeed only a joke. because brain damage almost always DOES hurt people. But in this case it seems to have wrought a miracle in my life.

 

 

Over the years since Dec 2007,  I have created many pieces, large and small, from bowls to two large tortoises and two geese, even a  “crazy fruit” bowl. Also a large seated man, a child detachable from her hassock (not quite finished) and several small birds. My female sculpture, the Decorated Betsy, even won a NAMI national contest on creativity and mental illness. But why tell you about them. I will upload a few photos instead.

I am going to try to show you them chronologically, but without the  many bowls I have made along with way, except for a few that are particularly special to me. Note that all the sculptures incuding a few that are not shown here, have been donated to someone or some organization, However if anyone is interested in purchasing a new sculpture, I  do accept commissions.

This is the Dream Tortoise, otherwise known as Yurtle the Turtle, which is about 3 feet in diameter. It was my second animal, but my first turtle.

 

DreamTlooking up

The prescription that this brightly clad psychiatrist holds in his hand reads: Dr John Jumoke, Rx: Art, Poetry, Music.  I thought, well, that  is one shrink even I wouldn’t mind seeing!

Psychiatrist Dr John Jumoke with Rx for Art, Poetry and Music
Psychiatrist Dr John Jumoke with Rx for Art, Poetry and Music

 

Trudy, papier mache child seated on paper mache hassock
Trudy, papier mache child seated on paper mache hassock, donated along with Dr Jumoke to Otis Library in Norwich CT.

 

Crazy Fruit Bowl with Mini-Melon
Crazy Papier Mache Fruit Bowl with Mini-Melon

 

Papier Mache Goose for Ruth
Papier Mache “Herr Goose” commissioned by Ruth S, one of my favorite artists and mentors.

 

Herr Goose after revisitation for repairs...Click on the photo to make a close up and you will notice neck "feathers and the difference it makes with old fully decorated version.
Herr Goose after revisitation for repairs…Click on the photo to make a close up and you will notice neck “feathers and the difference between this and the no-gold fully decorated version.

 

African Queen of Paranoia, without the large gold cascading earrings that I made for her but which catch the light too much to photographed.
African Queen of Paranoia, finally photographed with the large gold cascading earrings that I also made for her. Reminiscent, so i have been told, of the bust of Nefertiti…

 

African Queen of Paranoia (reminiscent of Nefertiti)
African Queen of Paranoia (reminiscent of Nefertiti) You can see that this resemblance was purely accidental, The bust was mostly an exercise in balance!

 

 

 

Papier Mache Bowl, painted with slimemold motif and papier mache apple
Papier Mache Bowl, painted with “slimemold fruiting bodies and plasmodium” motif, also papier mache apple

 

Bird in Cage - Papier mach by Pamela Spiro Wagner
“Standish” Bird in Cage for Tim – Papier mache by Pamela Spiro Wagner

Wading BIrd
Wading BIrd-given to Joyce Kamenitz, MD. Paper bird painted with nail polish, made by Pamela Spiro Wagner, placed on cellophane covered mirror with stones and soil mixed with polyurethane and glued to mirror.

 

papie-mache bird in tree banches made for sister by pamela spiro wagner,
Papier mache hummingbird bird in tree branches made for sister, Martha, by pamela spiro wagner,

 

Dr Geuss: large Papier Mache Goose made for the Northeast Kingdom of Vermont's Human Services
Dr Geuss: large papier mache goose made for the Northeast Kingdom of Vermont’s Human Services Approximately 3 feet tall

 

Tim with Papier Mache Turtle I made for him
Finaly, my dear friend and art collector, Tim with papier mache Turtle I made for him (so you can get an  idea of the size) Turtle’s head is large but the photo was also taken at angle so it looks larger…Notice copper sneakers, two of them with laces!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

*As for Abiilify and Geodon “causing” my stamina and better endurance? I dunno what to say? I have little social stamina even now. But I stopped the Geodon almost as soon as I restarted it. I just feared taking any drug that prolongs the QT interval, one, and isn[t  even approved in Europe for heaven’s sake! Why is that? I can think of two reasons. One is that it is NOT effective at all, not even enough for them to fake-believe it, or two, it is too dangerous for the Europeans even to subject their mentally ill to it.  There may be other reasons why the European Union declined to approve Ziprasidone, but I cannot think of any other obvious reasons.

 

As for the Abilify, well, I have taken it, more or less, since I was in Care Bed, largely because they got me onto it and I am scared, frankly to stop it…And yet, I do have to “get myself” to take it each and every day, stop myself from simply removing it from the slot in the pill tray that it is in…I should. slowly, but I am afraid, I confess. My therapist at the Northeast Kingdom Human Services told me yesterday that I came extremely close to having been forced into the hospital this month…and she is worried about me if I do not take the fricking drug. But I do not believe it does a danged thing for me, nothing bad either, nothing bad that tis obvious at any rate…But what will it do down the road, and what was that stuff going on with my mouth when I was OFF it??? I want to know but I know no one will tell me or even test me for TD, because they do not want to KNOW…They do not want toi know if the  drug is causing brain damage because of the consequences of their KNOWLEDGE both from me and for them.

FUCK THEM and FUCK ME. I don’t know what to do. Everyone has an opinion and everyone has a different opinion and because I do NOT TRUST MYSELF to know myself or my needs, I listen to everyone at least temporarily. I listen to everyone! But I cannot trust what anyone, any one single person tells me, because I do not actually trust any single person to know a goddam thing about it OR to tell me the fucking truth. That  is the problem. Even Nancy, the APRN, who admitted that the drugs were imperfect and very broad targeting, etc seemed to be too enthusiastic for them, rather than trying to find a way NOT to use them. But that may have been because I myself raised a stink about their having taken a WHOLE bottle of expensive pills (GEODON) from my bags at CARE BED and not returned them to me,…I did not like that one bit.

i mean, I am not going to overdose or sell the meds, but I want what I came in with, and they are MY pills, goddam it! Wh=at right does ANY one have to take them from me! So i partly agreed to the Geodon just to get my bottle of pills back, only then it turned out that they wanted to give me a weekly tray so I would try to be compliant …so I did not get the entire bottle only a week’s worth which I frankly am not even taking.

 

I do not want to take any pills except for what I FEEL in my soul I need! I NEED 1) methylphenidate, or I cannot stay awake to do anything, esp not to drive any farther than 10 minutes  away, if even that. I start yawning about 15 minutes after I wake up…You may think this is a bad drug for someone with a propensity for psychosis but having narcolelpsy is NOT my fault…I cannot stay awake for the life of me. And that was true well before I ever took any other drug. 2) I need topiramate because I really fear seizures, and because if it just reduces my headaches by one a week, it is worth it. I take severall vitamins in larger than usual  but not mega-doses. I take a very small dose of a thyroid medication also, which I would not want to stop…Do I NEED Abilify or Geodon? Some people who have known me for  years and in and out of hospitals say “Yes, absolutely!” some others say, No, not if you reduce the dose very very slowly..”

 

I do not have ANY inkling myself, none at all, but I want to believe NOT…I do not feel that these drugs do a thing at all frankly. Except bad things, especially in the case of Geodon. I do not usually like it when people tell me what to do, but I wish wish wish in this case that SOMEONE with influence would indeed tell me what to do. Precisely..and convince me. But no one is in that position, not any more. I am just alone and fucked…My therapist practically said, no she DID say: f you end up in the hospital it will be no one’s fault but your own, because you won[ take the Abilify….What sort of thing is that to tell me??? Should I just accept that and be quiet or what? Is she right? I didn’t like it one bit. I felt utterly abandoned and scolded and also basically told, well, you heard! It WILL BE YOUR FAULT! YOU TAKE THOSE PILLS OR WE BLAME YOU!!!!

 

Enough of this shit…I should, I suppose, have written something about my gratitude for this lovely holiday, the original one that presaged a wholesale slaughter of our good “Indian” buds we had over for the first T-day…ha ha ha.  And how grateful I am for this wonderful country that treats everyone “equally” and with compassion and kindness (justice? Oh well, we need not mention JUSTICE, need we?Justice goes without saying, don’t it???) Ha ha ha, of course if you are melanin-challenged you might not agree that justice nor social compassion…But some folks in MO, and a certain MO town these past few days and nights have come to a different understanding about such things.

 

Okay enough for the “holy-day” chatter from me for now.

 

Gotta go pace the driveway.

 

 

Abuse, Health, Michael E Balkunas MD

PRESIDENT OBAMA LECTURES DR MICHAEL E. BALKUNAS ON THE MISTREATMENT OF PSYCHIATRIC PATIENTS

Audio 2 Comments

angry obama

I think everyone who can play this file will find it both instructive and illuminating and actually very very …”interesting”…So go ahead, Mikey. LlSTEN TO YOUR PRESIDENT!!!!! Tee hee.