Category Archives: Mental Health

Mental Health, Recovery, Schizophrenia

Schizophrenia: Dr Manny Show on FOXNEWS.com (new link)

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This is a link to the Foxnews.com Dr Manny show episode that was filmed in January. I think it is self-explanatory. Credit goes to Jessica Mulvihill, who did the interview, which was one of the best I have ever been “subjected” to (I have not yet found a word that adequately describes the process of being an interviewee…What do you call it when you have been interviewed, besides subjected to it? Any suggestions?) Anyhow, it was, despite the word, a very interesting and enjoyable interview experience.

http://video.foxnews.com/v/4056071/the-many-faces-of-mental-illness/?playlist_id=86899

Mental Health, Narcolepsy, Recovery, Schizophrenia, Uncategorized, Vision, Zyprex

Disorderly Vision Produces Disorderly But Productive Thinking? (Or am I just Imagining Things?)

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Glasses, glasses, glasses, but none to help me see through the confusion of dancing and doubling of sites, scenes and texts!You would think that one of the many different pairs of glasses, with some specialized  lenses or prisms or bi-focal, or tri-focal or something would help me see through the confusion as I state it in the title above of “dancing and doubling” of images and scenes and texts, oh, especially text, both on-line and hard copy…Or perhaps it simply matters more to me that I cannot read, especially because in two weeks or so I have three or four readings coming up in the space of one week and I fear that I will not be able to simply see my poems on the page. If that should occur, and I do not manage to have each and every poem by heart, what will I do?  It so happens that Dr O, or Mary will be at two of the readings, so I can alert her to the problem and ask her to be prepared to (hmmm?) take over for me, at least until it seems that I might be able to resume — though why I could resume I don’t know, since the problem simply recurs immediately and it is only my ability to cope that matters, and by coping I mean my ability to navigate a page of text that has literally gone wild on me, with one line rising up upon another, obliterating it or merging with it, or most commonly simply interspersing with it so I cannot quite make out either one separately and can only try to peer at the paper sidewise as if that could help me parse them out. It of course does nothing, and the words do not separate themselves into readable lines. No, more likely, the words themselves interact and disperse into bits of words or letters, which themselves dance and double and shimmer.

Oh, it feels hopeless to discuss the matter of vision and what to do about it should I have trouble two weeks from now. So much could happen in those 14 days that nothing is predictable. For instance, I am managing to write this now, without a great deal of tortuous movement and agonizing, though not without trouble — so at this very moment, I could see myself getting through a poetry reading without surrendering to virtual blindness — at this hour of, hmm, at 1AM is it morning or nighttime? Well, I slept from 7:30PM until 11:30PM...Half the night, enough to “take the edge off” my sleepiness. At 11:30 then, for the first time all day,  I took a Ritalin, though I had gotten through from 6:30AM -7:30PM of the previous day without any (why? just to prove I could, but without accomplishing anything too). So why now, at 11:30PM? Why in the middle of the night, which to most people would seem the least logical time?

Why? Because I wanted these hours, my time, to be productive, and for that I had to be truly awake and alert, not merely marginally so. (My touchstone of true alertness for years has been how interested I feel…I now know that in my natural state I am never bored, so when I feel a sudden lack of interest in my usual pursuits, that’s when I know I’m getting sleepy. There is no earthly reason why I should have suddenly lost my ordinary passion or fascination, no reason, except that I have become sleepy and sleepiness persents itself as a lack of focus and interest, i.e. as boredom. I am not really bored, I mean only that as a younger person I associated boredom with sleepiness and so whenever I fell asleep doing something I thought I liked, I took that an as indication that I “didn’t really enjoy it after all,” that obviously it bored me. Otherwise, why else would it make me fall sleep? Despite my initial feelings of interest, I evaluated each choice against the proof positive of my falling asleep (which happened whenever I did anything sedentary, including studying), “proof” that I was — the greater truth — bored by it, “proof” that as John Berryman’s poem about “liking valliant fine art” suggests, I had few “internal resources.” Each time I went in for something I thought might spark an interest or fascinate me, as indeed the initial consideration of it did (I cannot give only a few examples, because even just starting in college the choices overwhelmed me, like a penny candy display before a child who has only five pennies to spend. Likewise, there were too many courses and directions I wanted (passionately) to explore, rather than too few. And I could see myself enjoying every one of them, from philosophy to geology!

That was true for me the unexperienced but so far as I knew or thought about it, alert freshman. I still believed that my falling asleep at the movies and during classical music concerts and even simply listening to music I couldn’t sing along with, or in classes where I was not allowed to knit while I listened to the teacher…

For me the senior, there was no longer any penny candy in the display, only a few largely indigestible rounds of “hard tack” that were the very few requirements my “major” required for graduation. I’d actually chosen my major (“Ancient and Medieval Culture” because of its very few requirements and because I’d already fulfilled most of them without meaning to. But the fact that I graduated at all in 1975, that remains a mystery. I had only 27 Brown credits, with a 28th I was fighting for for Spanish taken at the Yale Summer Language Institute, which Brown had warned me in advance it would not grant credit…no matter how well I did. This was their policy, and since Brown only required 28 credits, one credit per full course, rather than most schools bare minimum of 32 or 36,  they felt they had a right to insist upon all 28 credits all coming from Brown. I don’t want to go into this here, but I did graduate, and I do not know how or what happened, only that a friend called me after my advisor told her to, and while I had no cap or gown and did not attend, I recieved a diploma, Phi Beta Kappa and my advisor’s encouragment (so much for how well he knew me) in my new life as a pre-med student…More sedentary than ever, more proof I was bored, and more ambivalence about what I had chosen for my lifetime career…

But for the most poignant example, because for me the most painful, take that for years, in fact for as long as I remained an active, if amateur, field botanist  (from age 19 until age 39 or even 49 or so, when Lyme disease laid me low), I assumed that while I was devoted, enthusiastic and extremely, even uncannily talented, someone who could recognize and spot a plant I’d never seen before and know everything there was to know about it that one could possibly learn from a glimpse at a guide book, then later a taxonomy chart, and any brief, say 2-page, description as to its medicinal or gustatory uses. Yet I also “knew” that I could never learn plant physiology, or anything technical o biological within plants, such as  genetics (important if I want to explore taxonomy) or biochemisrry (important for just about everything else). I knew this was true largely because they “so bored me, they put me right to sleep.” And so, despite an IQ of around 165, so I’d been told, I felt I could not study botany more deeply than the literal surface of plants, because  it would put me to sleep…i.e. I was so inadequate in my internal resources that a deeper pursuit of understanding bored me to sleep…

Can you can imagine how I felt, coming to self-understanding of such a dismal sort? And believe me, I was devoted to honesty, at least about myself, to myself.

But I have strayed widely, and perhaps have so diverged from my inital topic, which I vaguely recall started with an image of glasses, as to have rendered it irelevant… Hah! But let me see if I can wend my way back. My discussion of glasses no doubt was in reference to whether or not I could successfully accomplish the poetry readings coming up in 2 or 3 weeks. Which somehow lead to a discussion of my being up at — well, it is now nearly 3AM, so I am awake and alert, having taken Ritalin 2+ hours ago, and I do not feel I have mis-used it, writing this. A discussion of being up and taking the Ritalin, no doubt. Taking the Ritalin… and  (althought what follows seems relevant, it was in fact written earlier than all that precedes it) –>

feeling for the first time all day (meaning the entire 24 hour cycle), during the hours when I usually am the most alert and productive, I could not bear wasting time, not even in service of proving to Li that I could in fact forgo Ritalin. (Sure, I am able to do without it, I am not addicted to it I can prove that, if necessary (though to combine doing without it, along with taking Zyprexa is  singularly cruel and unusal punishment. The Zyprexa is incredibly sedating for me, so I could never use the intellectual powers it endows me with, simply because I am too sleepy taking it (this has ALWAYS been the problem, and was one reason why Dr O always increased the Ritalin when I took Zyprexa, rather than attempted to decrease it. Another thing that Li does not understand was that Dr O never decreased my Ritalin or made any effort pro forma to do so. For me it was simply one medicine in her armamentarium, and if it worked the best, so be it. She was not even averse to giving me Adderal when and if I told her I wanted to try it. She was completely agreeable to anything I needed in the battle for alertness, and never once accused me to abusing drugs or worse absusing her willingness to prescribe for me. In point of fact, she was right. Why should she accuse me of anything, when all I wanted was what she wanted? As much alertness and “on” time as possible, within the limits imposed by my narcolepsy coupled with the super-sedating effects of Zyprexa. It was because of her absolute trust in me that I felt I could trust her, i.e. trust that if we lowered the Ritalin dose when I did not need it that would not preclude raising it again, if I needed it again.  Because of that trust, I could tell her when I no longer needed the dose she was giving me and it was in that fashion that we cut it down from a high of some Adderal plus both ER and regular Ritalin five times a day — this was when I was taking some 35mg of Zyprexa — to only 20 mg of regular Ritalin PRN, of which I rarely take all 5 pills. And she was right, I never got addicted…In point of fact, I was not even habituated, as we discovered as I went on cutting back and back.

One thing Dr O always understood was my need to feel secure in terms of this medication, not to feel that I was ever in danger of its being taken away from me because a new doctor had decided I was either addicted or for the umpteenth time and without proof decided I didn’t have narcolepsy. I do not know how to convince anyone but Li at a minimum ought to listen to the taped Voice of Narcolepsy at the New York Times Health section…These patients speak well on behalf of those ordinary people with my condition, Narcolepsy without Cataplexy. So many docs are unwilling to grasp the notion that many many people suffer — and suffering it truly is — from TRUE narcolepsy, even though we do not have cataplexy. Despite the numbers cited, I myself believe that the reverse is true, that N without C is far more prevalent than N with C…And that better tests, shorter and more discriminating diagnostic tests than long stays at a sleep center will find that Narcolepsy is more comon than people ever thought. (Every time I tell someone I have narcolepsy, they tell me of a ceertain person in their family who falls asleep “just like that”…but was never taken to a sleep specialist etc). Few people and fewer doctors are aware that the falling asleep with one’s face falling into a plate of spaghetti is just a myth, and that narcolepsy has many different faces, just as anxiety, or ADHD or schizphrenia does…Why so many seem satisfied with that myth, and do not question it is beyond me, but they don’t, or it is the rare internist or primary care doc who bothers to question the received wisdom that questions the patient’s motives in asking for Ritalin, rather than the doctor’s compassion in failing to  so much as take a sleep history or approach the patient with an open mind…

Dr O knew that I had for way too long been treated as a drug addict when in fact I needed the precise medication other docs considered merely placative. She refused to go that route, and never made it an issue. Even in the hospital, every hospital I went to, she was able to persuade them to give it to me…It was only Li who was not committed to my taking it, disbelieving perhaps that I have narcolepsy (again, again! Why must I put up with this? Is it worth it, or should I go elsewhere, perhaps to a sleep medicine clinic to handle my Ritalin instead of trusting Li to do so…because clearly he cannot be trusted to believe me, to believe Dr O, to believe anything, or even to want to find out!). Why now, when I could have/should have (except that I have spent all the day in a kind of avoidant daze) gone back to sleep, if necessary by taking a dose of Xyrem, as prescribed, why did I take Ritalin at 1AM and stay up writing especially since Li is trying to “wean” me off the Ritalin?

WHY indeed? Why the f–king hell is he trying to “wean me off the Ritalin in the first place, when it was helping me function so well that most people had no idea I had a disability at all? Why question my meds when they are working so well? I’d say to anyone who wants to then interfere, merely for the sake of not using a “potentially addictive drug,” for Chtist’s sake, don’t break what is nicely repaired already. It doesn’t seem necessary, given how well things were going in general. And when they fell apart, I told everyone and him what was wrong: the ABs needed to be changed. I have said that again and again, ever since the hospitalization in February, but nobody is listening to me. I told Dr L then and there that the Bicillin and the Minocycline was not a good combination, that for some reason the two ABs were inadequately treating the three toughstone symptoms, cardinal symptoms in my case, in the sense that if they are taken care of, I seem to be safe from a relapse, but if they are still present, I am not. In point of fact, every single time one of these three symptoms appears or fails to disappear, I eventually wind up in the hospital, either in the spring or in the fall, without fail! (Did I make it through this past spring, or was that when I was in St F/Mt S and trying to tell them that the Minocycline/Bicillin was not aduquate even then? I’d have to look back to see…)

Anyhow, stopping the Ritalin may seem to be fixing something that wasn’t broken, but instead is rather to be breaking something that was functioning extraordinarily well…I mean, if I was writing and doing art and relatively happy and content, why ruin that by stopping one of my essential medications as an outpatient, just because the in-patient docs thought I ought not to take it there? I think Li is in fact trying to stop it for just that reason, because it seemed to be unnecessary inside the hospital, just because there, under those hothouse conditions, having no requirements but sleep, I “did okay.” But doing okay “inside” which is to say, within the protective walls and given the constraints (to say “constraints” is barely a euphemism) of that  sort of an institution is scarcely the same as to do okay or even well outside those walls. I didn’t need to stay awake there, or do anything there, and in fact could sleep at will. And so I did, much of the day in fact, every day! If I then needed to sleep at night, well, I could ask for “something for anxiety” anytime, though in point of fact, I mostly could sleep then too. Much of the three week stay was spent sleeping, and when I did not, I was so paranoid that sheer fear and that adrenalin rush kept me going. Near the end of my stay, I became somewhat manic, hypomanic clinically as Li diagnosed it when he saw me. I couldn’t shut up and my speech was — and I felt this as well — pressured. That is a very good word for it, indeed. There was an internal feeling of pressure to get words out in a rush, an unpleasant need to say things, as if they had especial importance and absolutely had to be expressed, even though if I thought about their content, which of course I could not really do in such a state, there was in fact nothing particularly urgent to them.

Well, I am getting tire finally of writing here, and yet I have not finished. I quickly then let me summarize. Because of this recent pressure of speech, coupled with some manic energy put into actually cleaning up this place, and getting more painting and such done, though still hypo manic not truly manic, Li felt something ought to be done to “bring me down” — I am not quoting him so much as quoting the idea…Anyhow, first he suggested stopping the Ritalin, which was okay temporarily, since I already felt enough adrenalin and did not want to add more to my own felt pressure of speech and heart beat. But I had and have no intention of this being anything but temporary…Then he wanted to increase the Topomax, which he said would also decrease the pressure and help hypomania, at the same time that it might help any appetite increase that came with our adding back some Zyprexa, which in his opinion, and of course Elissa the RN’s insistence, was the best drug for me…So far they have only gotten to 2.5mg but even Li has suggested 5mg if I will agree.  Now that I have summarized the pharmacological plans for me (including with this, the ultimate decreasing to 0 of my Ritalin) Let me say right here and now, that I will not stand for a rigid “fixing” of the Ritalin problem…

Below I have summarized a few absolute requirements for a psychiatrist, if I am to trust him or her, or continue to see him or her:

One requirement of any psychiatrist I see is that he agree the Ritalin is a necessary medication for an illness, which is narcolepsy, with which I was diagnosed by a sleep specialist at the Sleep Disorders Center at Norwalk Hospital (records available) and it needs to be understood between us that he will not in the middle of therapy decide suddenly to meddle with it (unless I agree and do so not under duress, or decide myself not to take it); it needs to be understood absolutely and without any fishiness or unspoken mistrust, that I am NOT a drug seeker, and that I have narcolepsy, a genuine neurological disease, which needs to be treated, independently of any other illness I might suffer from, so that my being given Ritalin is not dependent on whether or not I agree to take any other drug like Zyprexa etc. though taking Zyprexa might in fact influence the dosage of Ritalin needed.The Rx needs to be permanent as well as flexible according to my needs, which may increase as well as decrease as the ilness waxes, wanes and responds to other drugs and illnesses. Ritalin, however, is never to be used as some sort of bargaining chip…

Argh, Icannot write another word, and in fact, I feel as if I am giving up on a personal letter I was writing to a specific someone. If you are that he or she, you know who you are…I do not!

Rest assured, or at least rest. If I made too many typos and other errors of eloquence or diction, I shall clean them up tomorrow, so reread this then, if you read this today…Be forewarned, it will change between the two times.

 

Added on Oct 31.

 

I have decided not to redact the above, but to leave it as is, with all its typos and lacunae and infelicities of grammar and thought. I was writing spontaneously, as I believe was evident enough and I don’t see why that is not adequate for a post once in a while. I would just like to add a clarifying detail or two. What I think I forgot to explain was that between the post on Zyprexa/cancer treatment I experienced a three week hospitalization, which happened very suddenly, though of course, as I mentioned, my visiting nurse had been alert to the possibility of it, even perhaps the inevitability, for at least two weeks…If you understand that, some of this discussion and the one to come above, will seem a little more undersandable.

 

I will now go to a new post and continue there.

Mental Health, Psychiatry, Schizophrenia, Uncategorized

Mary Neal Tells Her Story

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I am going to try to embed the youtube videos of Mary Neal telling the story of what happened to her severely mentally ill (but non-violent) brother Larry M Neal in Shelby County Jail, TN, but I am not sure if it will embed or not. Here goes nothing! Ah! It did work, So the top one is first and the second one is last. PLEASE WATCH. and then go to the website mentioned in the post below this one and see more details of what is going on. This never ought to happen in the United States, it is evil, but it does, and it happens far too often. I think Johnnie Cochran would turn over in his grave if he knew what had happened to and within his firm after his death…

Thanks, everyone!

Book, Mental Health, Psychiatry

New Psychiatrist – 2nd Appointment

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Dear Dr C:

 

Today when I left your office, I had to get natural bug spray as I walk at the State Park at least once a week and I usually forget to use it for the mosquitoes and ticks…Well, I went in, made a beeline for where I thought the display would be (having really no idea, I had to traverse the whole store before I found it, unfortunately, given that people there — as I told you — were talking and thinking about me and looking at me and wanting me not to buy or to buy certain things as usual…). ButI found it finally. Luckily there were not too many choices and the choice was made for me when I saw the word “local” and “made in Connecticut” as I knew that would please the “locavores” who were monitoring my purchase — a locavore being someone who eats only from local sources.

 

Despite the fact that it was the most expensive bug spray on the shelf I took the bottle and found the shortest line…No, actually, the line I stood in was the one where the woman before me actually looked at me without a frown, and in so doing gave me permission to stand behind her. I paid with my last ten dollars, though the cashier made everyone wait, impatiently I am sure, because he didn’t believe it cost $9.99 and he “didn’t want to overcharge me.” Hah!

 

Finally, I emerged from the store safely, shouldered my bag, and headed for the car. But as I stepped near the curb, a red Mini- Cooper drove past me and I understood immediately that this was your car, Dr C, and that you recognized me coming from Whole Foods. This seems entirely reasonable to me, since there was not another patient waiting in the waiting room when I left, so it seems likely that you were heading elsewhere after I departed…And suddenly a red Mini-Cooper seemed only rightly and properly “your car.” But somehow this conjunction boded very ill to me and I immediately became apprehensive, or what my sister, Dr O and my friend Josephine all called paranoid.

 

On one level I see what they were saying. But on the most profound level, I KNOW that what I know is truer than their objective observations. I was/am certain beyond the faintest doubtful smudge that you are in with Them, capital T. Who are They? They are the osteopaths of H_____, who have had a conspiracy against me for years.

Lynnie – Carolyn — told me I should talk about this with you, so here you are: this is only one of the big problems I have with you at the moment. Another one, which may be insurmountable in the end, is that I want to know why you sit where you do, I mean, way across the room from me. I do not want you to change. Do not suddenly get up and sit elsewhere. I just wonder why your natural choice is to sit, what is it, 10 feet away? Do I, as I fear, repell you? (If yes, is that because of the Osteopaths and what they have shared with you?) Do you fear me? Fear something? I can barely see you. I feel like you cannot see me, which is more to the point.

I need…I need…Oh, Lynnie tells me to do something different from what I “usually do” – be brave enough to ask questions when I should then sit still and listen to the answers, and ask for clarification if I still haven’t understood. To discuss what I feel rather than letting my paranoia get the best of me, not simply accept it and go with it full speed ahead. But I do not know HOW to fight the absolute certainty that things are going on, nor the special knowledge that I have. Zyprexa helped more than anything, but that is utterly unacceptable. Nothing else has made a dent. Except possibly the 35mg of Abilify, which I went back on tonight, just in case…We’ll see.

Enough is enough. I hope you don’t mind that I wrote this. I didn’t want to leave a message on your phone nor ask to have you call me. In fact, though, I may keep this until the 13th and give it to you then, as I am afraid you might consider it a burden to read a letter “off duty.” 

 

Sincerely,

PW

 

Now, that is what I wrote him, after the incident recounted in the letter, but in fact, I have found and called an APRN therapist, a female, who sounds and “feels” more to my liking, though I have not yet met her. Maybe I simply get on better with women than men? But that is not true, as I have had male docs in the hospital I preferred over the female therapists by far. I think, as I discussed it with Dr O, I found Dr C not so warm nor “safe” in the end, nor responsive to what I said. I had trouble talking with him, because he did not actually talk with me, only listened, which is not what I want in a  psychiatrist. I do not want that sort of “therapy” — I don’t want to delve into my past or my inner feelings. I have a hard enough time dealing each week with what is happening in my life, let alone the deepest darkest secrets that my mind hides from me and in which I have no interest…My goals in therapy are mainly two: to gain some self-esteem and self-confidence, which despite how I may sound here, I have almost none of, and two, to somehow, somehow, if possible, learn how to cope with and not be so chronically paranoid. Of course, those were Dr O’s aims with me all along, I imagine. But perhaps if I myself commit to them and learn how to work at them, more headway can be made. I sort of think, now that I know what paranoia is and how to recognize it, finally, that I need concrete exercises to practice how not to succumb to my tendency toward it. Ditto self-esteem, which tendency is just as strong, if not stronger, since it produces as much paranoia as grandiosity does. I cannot imagine what form such exercises might take, but I can imagine that they exist. I cannot be the first person to need them, after all.

 

WE MAD is at the printers but apparently it takes a month to come out from there, so it won’t be finished until May 28th! Geeze, and I thought it would take a week at most…This is going so slow. I cannot see how they could possibly have gotten the book out in February, even had I not been ill and taken a “month off”. At best they would have gotten the book out in April! I should have known that anything a publisher says with a deadline has to be taken with a grain of salt. But I cannot seem to get that through my thick skull and so I still keep on expecting things to be done on time, and keep meeting deadlines that no one else ever does.

Mental Health, Psychiatry

New Psychiatrist

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Well, I said I would get back here and tell you about my first session with the new psychiatrist, but life got away with me and I haven’t had a chance to until now.

The first thing I noticed, walking into the waiting room, which was both good and a little off-putting, was that the radio was playing WNPR, national public radio. Now the good part of this is that it was indeed NPR, the news and liberal-leaning talk radio that I myself listen to. This boded well, I thought. But the fact that it was talk radio at all, rather than soft music I found by itself rather strange. I mean, what if someone didn’t like or agree with those points of view? It seemed a rather unfair thing to be throwing politics and other controversial subjects into the air right before someone was to see a psychiatrist. Now, right here I am tempted to play shrink to the shrink, and analyze why he might have done this, but in point of fact I have no idea and should not presume to know or even guess. After all I only met the man once.

So I noted this, and felt, well, those two ways about it, then filled out the forms waiting for me, and sat back to wait. It wasn’t long. He was only about 5 minutes late, if that. Then he ushered me into his office, which I noted at once was set out in a big square of large immovable chairs and a sofa. He told me to sit wherever I wanted. Uh, oh, I thought. How can I choose a chair? I had no idea, so I sat immediately in the one touching my leg, which happened to be the one farthest from his desk. He sat down in the chair directly opposite me, about ten feet away, or so it seemed. Maybe it was six feet? Hard to say now, but it felt very far away. I think I will try a different chair every time, maybe until I find one that feels right, or a different one according to my mood, I dunno. All I know is that that one felt wrong for me that day…

I didn’t notice much more about the office after that, not even the colors. I didn’t look around, not with my eyes. I mean, I did seem to look around, in that my head may have turned a couple of times, swinging from side to side, but my eyes didn’t actually take in anything. I was just “gazing into the distance” because I find it hard to make eye contact.

I was going to say, He asked a lot of the usual questions, but did he? Honestly I cannot say now what he did ask. Except that he started out by saying, What brings you here? Pretty standard question, but for the fact that I knew Dr O had spoken with him and that I thought he knew why I was there…So I just said, I needed to find someone to “take her place.” I didn’t mean in any sense but the literal: I needed another psychiatrist. No one could take her place in any other sense. At one point he mentioned that he knew about my book, or perhaps said that he did in response to my asking him if he knew about it. I asked him not to read it, yet, and he agreed, though now I am not sure why. Why not have him read it? It would get a lot of things out of the way. And maybe he would not have read it anyway, was just curious as to why I did not want him to read it myself.

At some point, I cannot recall how, we got onto the subject of my olfactory hallucinations, either gone now or controlled well by lamictal (it is hard to say, as I still reguarly get “whiffs” of burning smells that are unexplained). When I explained the genesis of these hallucinations — a week after ending ECT, starting first as soapy smells and then progressing to burning rubber, to the point where I could not eat anything but tomoatoes and apples, and under what conditions they abated, ie with my taking tegretol (I believe), he said it was absolutely classic for temporal lobe epilepsy.

But, I said, I’d had an EEG at the time, and they said they’d found no signs of seizure activity.

TLE is often missed on regular EEG, he said. Then he told me the kind that usually picks it up, but I failed to follow him…it got too complicated and I was still stuck on the TLE thing. No one had actually said to me Temporal Lobe Epilepsy before. Oh, people had said “seizure activity” many times, in many different circumstances. Like when I took Clozaril and Seroquel. Always, my side effects were Dx’d as “seizure activity” — and then ignored. Ignored! The doctors would simply have me continue to take the drug and ignore what they themselves called “seizure activity”. Is it any wonder that nightly episodes of terrible feelings of impending doom, and what I described every week I saw my therapist as the feeling of my brain building to a terrible electrical threshold that only sleep staved off — or did it? I wonder… Is it any wonder that I wanted to quit both drugs and did so as soon as I could?

But more than that, I’d had a seizure when my wisdom teeth were taken out. I was about 23 and I lways thought it was because of too much novocaine, though that was only my impression. Anyhow, in the middle of the procedure, one arm and one leg started moving up and down mechanically while I sat in the dentist’s chair. I remember the dentist saying, “She’s seizing” then “__ mg of Seconal,” and that is all I recall until they resumed the procedure, which I believe they did do, unless they were all finished…I cannot remember now. In any event, I did go to a recovery room to sleep afterwards, but I do not remember my parents, with whom I was still living, being told anything, or reacting in any way when I told them. Which I find strange to this day, seing as my father is a doctor and I had just graduated from college and was home to study pre-med courses myself.

Anyhow, I have been reading up on this and have even read a little about some mental illness being related to TLE, esp bipolar and even schizophrenia. Went looking for material on the internet, but have not found a great deal on these subjects, at least not that is available to me. It may be that there are specialized journals that would deal with them at greater depth etc but usually the cost of a subscription is prohibitive, as are most texts (over $100). The public library is useless in this regard as well, having so far as I could see, almost nothing on the subject except a few books written for parents and/or children. Finally, I found a couple on Amazon, and sent for used copies. We’ll see if I get any answers.

But I was talking about the new psychiatrist, Dr C. He is tall, his hair seems gray but could be white blonde, and I cannot for the life of me tell how old he is. Not too young at any rate, I do not think. He seems okay, will probably grow on me, so to speak. I had no immediate reason not to like him and I did like his telling me about his opinion of TLE so openly, even if we really have no proof in terms of an EEG.

I will see him again at the end of April, and then we will see. It will be the first time I have seen a male psychiatrist in a very long while, and I don’t know how that will be. but what the hey, I’m willing to try.

Lyme Disease, Mental Health, Vision therapy

Vision Therapy and Schizoaffective Disorder

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I combined two subjects in my heading –and they are related — in order to “recapture” as many readers who might come back looking for an entry after three weeks of nothing…

 

I’ve been in the hospital. Yes, a relapse of schizoaffective disorder, due, I think, to stress, poor sleep, worse eating and terrible time management,  in tandem with a flare-up of the underlying infection  of Lyme disease (for which I’d had a positive Western Blot test as late as 2006, five years into treatment).

 

I was in fact overwhelmed, sad, depressed, tired and sick of it all. I wanted to write and do my sculpture and it seemed as if everyone wanted many and more pieces of me and my time. Despite all the successes of the past year, I felt hopeless to change things On Effexor, after a long two and a half weeks, my spirits rose and my hopelessness diminished. I was able to unblinder myself, removing the brimmed hat I wore day and night, and enter the world again (in terms of mood, the affective part of the disorder).

 

In terms of the schizophrenia aspects of the disorder,  this hospitalization was brutal. I heard my name, my full name, being called 100 times an hour, on any given day. When people spoke to one another within my view, I could see (and heard it) that every word  spoken between them was my name, and nothing more. The entire ward had nothing better to do than to persecute me by saying, yelling, whispering my name.

 

Then one day something that really scared me, they whispered, “I’m choking myself. I’m choking myself. Pam, start choking yourself. Start choking yourself.” Always, almost always before this time, when faced with such “command hullucinations” I blindly obeyed the directives of the “dictator-voice,” too afraid to do otherwise. This time, rather than obey and do as he or they insisted, I ran out of my room. I looked up and down the hallway for anyone — anyone! — a mental health worker, a nurse, even the ward secretary would do.  No one .

 

What to do? What to do? I raced back to my room, stood  just inside the doorway. No, I could not stay, not with this voice assaulting my brain. I had to find help. Somehow. Then I heard someone coming down the hall, briefly stopping at every room to check on its occupant: the mental health worker “on the floor” which is the say, the one who was assigned to do fifteen minute checks that evening. Stacy, with the long dreads, was  just the person I needed.

 

 

“Stacy,” I whispered urgently when she came nearer. “Stacy, I need to tell you something.”

 

“What is it, Pam?” she smiled.

 

“They’re telling me to start choking myself.”

 

“Who is?”

 

“They are, the people who talk to me, the voices if you need to call them that.”

 

She frowned. “You aren’t going to act on that, are you. Now, come. Let’s find your nurse and see what he can do for you.” Then she took my hand and led me up the hallway to the medication room where Paul was doling out nighttime pills too early for my taste. “Paul, I think tonight, Pam needs her antipsychotics early. What does she have?”

 

He told her what I was taking, and they murmured together a little. I assumed they were discussing what I’d just told Stacy. After I’d taken the pills, Stacy again took me by the hand and walked me down the hallway to my room.

 

“You gonna be all right now?” she asked.

 

I nodded, dubious that the meds would do the trick, but hopeful in any event. I knew now that I could in fact ask for help and be given it, that I did not have to obey the voices not even when they demanded action.

 

But that was only one of many, many incidents. I won’t bother to recount them all, or even just one other, not right now. All I want to say is that the voices never did let up until the final weekend, due to stress caused by a very disruptive patient. It was only the weekend before the day I was discharged, when she’d been booted out, that the ward was tranquil enough for the voices to diminish, and then by Monday begin to cease. Yet even at the very same time, another problem reared its head…

 

This is chronic neuro-Lyme: plots abounding, exaggerated startle, acute dyslexia, increased paranoia and rampaging ideas of reference…I had them and worse in 2000 during the massive psychotic break at Y2K and I had all or most during this hospitalization in a diminished form, when the antibiotics were changed and failed to protect me from a recrudescing infection.

 

Now, why or how does Vision Therapy tie into this? It is related because while in the hospital, that closed-in space with blinds on the windows so the view is largely obscured, I lost my ability to see 3-D, to perceive depth and space. I even lost my ability to read or untangle letters on the page or properly read the words on a computer screen. I noticed this one day when I looked to see if the pen was clearly above the paper, and found that I could not easily say that it was, that I was deducing it from the overlap and the shadows. Occasionally, depth perception would flicker on then off, and it was delightful, but most often I found it was off, and decided to let it be. I knew how to restore it, that it could be restored, and that Dr D would help me if I needed help. So I figured, the worst would be I’d have to re-train my eyes, but the best part of that would be the thrill of re-entering the beauty of the borderline between 2D and 3D.

 

In the follwoing posts I plan to describe the Vision Therapy sessions that help me regain my depth perception, and also in others discuss aspects of schizoaffective disorder, the schizophrenia aspects as well as what I know about depression.

 

Stay tuned…

Brain, Mental Health, Psychiatry, Schizophrenia

Delusions and Paranoia: past experiences

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During the second part of what I call my Y2K Meltdown, when I was hospitalized for 3 months, first in central and then in southern Connecticut, I was extremely — but what I call serially– paranoid. What I mean by this is that plots occurred to me one after another seemingly without end. A new conspiracy would “appear” out of nowhere, as of course paranoid plots tend to, generated as they are by that two step process, described in the “Paranoia and Hallucination” entry. It would “do its thing” as they say, run its course, wreak its own havoc, then having done so, pop or be defused, and disappear. But almost immediately and, without my having any sense that this was happening or had any pattern, in its place another conspiracy would arise to take its place.

 

An example: at one point during that same hospital stay, having smelled what I was certain was marijuana coming from the art supplies room, I became convinced that the staff had been infiltrated by drug dealers selling weed and stronger drugs to patients. I’d mentioned the smell — no doubt some innocuous meaningless odor, if it existed at all — to a male nurse, and the look he gave me convinced me that he was involved. As a result, I realized that my knowledge of the presence of drugs on the unit made me dangerous to him and the other dealers. I felt frightened that he might retaliate, threaten me, or worse, hurt me when no one was around or could help me or know he was responsible.

Terrified enough to start talking, I told the doctor, and I called my sister and begged her to come in and sign me out. Please take me anywhere else, I begged. I would agree to any other hospital only get me out of there where I was in mortal danger. It was, I knew, after visiting hours, indeed it was after bedtime, but she had to come in and get me, now, or I might not survive the night.

 

Incredibly, she actually came in, if only to make sure that the staff was aware of my extreme distress. I knew only that she came to check out the drug situation and was devastated when she left without taking me home with her, though by then she had managed to “talk me down” some, convince me that I was in less danger than I believed, and that at least some of the staff were on my side and would be watching out for me all night.

 

Somehow, her words got through to me, and by the next day, the matter of the drug  conspiracy was resolved, though I cannot recall exactly how.

 

All I know is that as the urgency of that situation ebbed, I became aware that a new patient had arrived on the unit. Cally wore a raglan-sleeved sweater made of what I immediately apprehended was a washable wool yarn called “Candide.” Now, I knew only one other person aside from myself who knitted sweaters like that made of Candide yarn and she was the woman who had taught me to do so. “Lisa” not only knitted many such a sweater but did so for her long lost daughter, “Cally,” who had been given away for adoption many years before. The fact that “Cally” lived in North Dakota, last I knew, was of no importance to me. What seemed of paramount, vital and decisive importance was 1) the Candide wool and raglan sleeves, and 2) the fact that Cally appeared to have Lisa’s ballet-slender body type. These two coincidences in fact absolutely clinched the matter. Cally was “Cally,” wasn’t she?

 

These equivalences might not have been so critical to me, except that, it suddenly seemed that Lisa had died. She had committed suicide, so the message was communicated to me, and I had now to inform Cally of the fact that I’d known her mother way back when. I felt it was incumbent upon me to tell her what she had been like, that was the mission I’d been given. But  first I needed to ascertain beyond a shadow of a doubt that this Cally was indeed Lisa-my-former-friend’s daughter “Cally”…

 

If this was not a true paranoia that instantly arose following the death of the drug dealing plot, it was a delusion coupled with the felt urgency to act on what I was certain I knew (not so different from the marijuana delusion after all). And it was only one of a long string of plots and serial delusions that followed one upon another almost without a break that winter and spring. Just as I described in my entry of the other day, not once in the midst of any of these conspiracies or delusions was I cognizant of what was going on or able to step back and analyze the situation with any objectivity. At that time, I did not even have the tools I have now to dissect an incident after the fact: I was at the utter mercy of my brain illness, without any insight whatsoever. Now, at least, I can step back after the experience and say, Wow, I must have been really paranoid to think such a thing, or That was a hallucination after all…My goal, and a real triumph would be to recognize these things in medias res, that is, right while they are happening, but so far that does not seem to be possible.