Tag Archives: seizure

Vision Therapy, Art and Wonder

The following may repeat some of what I have written before, though expressed rather differently. I “purloined” it from a letter I wrote to someone I once knew, who I hope will forgive me if he ever visits this blog and recognizes it here.

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Life continues to present many challenges, which both the poetry book and Mary’s introduction to WE MAD CLIMB SHAKY LADDERS illuminate , I suppose, in some detail. But among the thrills and wonders of these last few years of recovery are two that are related to one another but which I would never have dreamed of in relation to me.

I speak of vision, one — of depth perception —  and two, of art. I don’t know if you have heard of the recent science memoir by Sue Barry called, Fixing My Gaze, in which she describes her strabismus  and her work in vision therapy. Apparently the book has become quite popular, at least around here, after a review in the Hartford Courant (Barry lives not far from Northampton, MA). Strangely enough, I have been writing for the past year about, among other things, my own experience in vision therapy trying to achieve stereopsis .  I believe I must have had “3-D vision” at some point, since I did not have strabismus as a child. At least not to the same extent as Barry, and I think I did when very young “see” what others said they saw through those Viewmaster toys (you must remember those binocular viewers with the “3-D” slides?). My later lack of 3-D vision never bothered me, apparently, and I never knew that I was missing anything, until I developed frank double vision about four or five years ago. My optometrist told me I probably had had unrecognized intermittent exotropia since childhood, but that my eye muscles had been somewhat stronger then and so my vision had stayed single. She could not say however if it had indeed been binocular, that is to say that I had used both eyes in seeing.. In any event, it was only when I was given prism glasses in 2008 and in February suddenly experienced brief, brief flashes of stereopsis that I understood what most people see, what I had in  fact  gone for so long without seeing. The world was suddenly, achingly more beautiful than — well, than anyone else seemed to recognize:

The first time on the Broad Street Green I passed the huge tree with its bark “sticking out” I was stunned, stopping dead in my tracks to stare at the reddish burnt sienna ridges that had suddenly leapt out at me. Stark, knifelike and jagged, the crusty surface was backlit by an early setting sun in such a way that  it all seemed limned with light. A gentle roughness edged the troughs and depressions. Spawned from the cortex wood, the bark strained and stretched. I could scarcely believe how the air gently touched and tasted each indentation and projection of bark — as if saying, “I love you, I love every inch of you and my kisses, my airy bearhug proves it.” Just as surely as I knew the air loved that bark, I knew that space, the “emptiness” that cups and holds everything in its place safely,  adores matter. This struck me as neither bizarre nor even uncommon, only obvious. What was strange and unfortunate to me was the fact that no one I spoke to about this experience seemed to know what I was talking about…

I cannot tell you (or anyone else for that matter, except perhaps Sue Barry, or Oliver Sacks) how much “space loves us” and everything it touches. Space is what gives us as a gift to ourselves..And when I saw it, saw space for the first time I fell in love with matter, and with the hollows and shapeliness of everything. I wanted to do nothing but gaze upon the world without touching it or or talking for at least a week…I wanted to walk around in silent solitude, experiencing space without interruption, to see without the interposing of frivolous conversation how incredible it was that you write words with pens held above the paper; that when you see a sign or a billboard, there is — and you are as certain of this as of any delusion —the knowledge that there is  flatness to it, and that “more space” lies beyond it…Someone’s nose which reaches out in space is far more interesting than their voice, and the way a hand extends outward can be the most lovely thing seen…Indeed, I would tell people quite spontaneously how beautiful they looked, the way their noses projected from their faces, or their hands suddenly coming out at me…

Oh, it is so impossible to convey the sheer — well, even now there are no words for this, no words beyond that single inadequate word, beauty, for which there seems to be no useful synonym. All I can say is that while I felt no better about myself, I certainly fell in love with the substance of the world! Who can say, What is the matter with the world? Seriously? All is the world is the matter, and that matter is more exquisitely lovely and worthy of being preserved than even many principles — Free trade, capitalism, rugged individualism above socialism in any and all forms etc —  Americans feel they have  a right to hold so dear…
As for Art? In my cooler moments I reduce it to “medicine”, to symptomatology…thinking perhaps this amazing talent, so unexpected and newfound, has merely to do with the Temporal Lobe Epilepsy or seizure disorder with which I was diagnosed after having ECT about 3-5 years ago. I don’t know. (I read in SEIZED by Eve La Plante that not only are there personality changes but one can acquire sudden artistic abilities and interests, almost full-blown after developing TLE..so who knows?) Perhaps not. In any event, (I should mention that this is my theory little mentioned to anyone at all…Not sure to whom I should talk…) starting in 2007 I took up lifesize papier mache sculpture in a serious way, and just a week ago suddenly, VERY suddenly, discovered that I could paint portraits, just like that…I had never done a portrait before, rarely even tried to draw, had always said I couldn’t draw or paint for beans. Then one instant I felt drawn to paint (with which I had always decorated my papier mache, with swirls and colors but not true representational painting) and to doing “real art”. I “decided” I would paint a young man, and then went ahead and fearlessly did so (see first attachment)…Since then I have done one portrait a day. Some imaginary, some from photos…And I have no idea, had no idea I could do so at all! Frankly, ditto the sculpture, though I am getting used to that ability now that I have several to my name…(see two other attachments for examples of earliest pieces).
I hope you won’t mind all this “Wow is me” stuff…I’m not usually so impressed with myself, I assure you. However, while I am at it, I want to send you three newer poems. I actually dislike most of the illness poems in the book, and want you to see what I have been doing more recently,  since the DIVIDED MINDS book was finished in 2003. I hope these poems speak for themselves. The “Epithalamion” one got a lot of chuckles, and ought to, when read properly (best out loud). I read it at my twin’s wedding. “To the Reader” will be the first poem in my second book, the opener, though perhaps not as “welcoming” as “How to read a Poem”.  And the vision therapy one is about what I have been doing in order to regain stereopsis. Which by the way really works, vision therapy that is, despite the skepticism of most ophthalmologists, who never bother to try it out, just condemn and contemn it out of hand, because it is done by ODs not MDs….VT has to be continually practiced though or like me you can lose the ground you gained after a while. Now I struggle to gain it back. I vow to  keep practicing. I do not think I can go without the exercises not after having gotten my eyes to do what they should do. It is so discouraging now to be back at nearly square one, I must admit…

Schizophrenia and Temporal Lobe Epilepsy (cont.)

In my further reading on TLE I have learned that while “TLE hallucinations” can be ecstatic visions or the sight of threatening people or actually hearing voices, usually they are of brightly colored lights or visual distortions, like objects appearing larger or smaller than usual, hearing music, feeling insects running under one’s skin etc. In addition, there is the awareness that these are hallucinations, though not always. A personality seems to be associated with TLE, some people think, though it is not clear to me how established this is as fact. And some with TLE and without it claim that creativity is directly related to it. Hypergraphia, the compulsion to write, write, write is definitely associated with TLE, along with a compulsion to draw or do art or think/talk about religious subjects. Heightened emotional state but reduced sex drive. Something called “stickiness” is described, which I construe as a kind of tendency to glom onto a person or to exhibit an extreme loyalty. Also, there is seen irritability and gross personality change, rages, a tendency to fly off the handle or perform outrageous acts like stripping in public etc. 

 

In TLE you can have feelings of euphoria and floating as much as feelings of impending doom. A feeling of “rising into something” or of something rising through one’s body is a common concomitant of a TLE seizure or aura. An indescribable feeling according to many.  And you can have psychosis, chronic or acute.

interestingly, while EEG is notoriously poor at picking up TLE, there are often  punctate  signal hyperintensities (precisely the abnormalities I have had at least since Y2K) seen on MRI in those with TLE in the book I am reading — SEIZED, by Eva LaPlante.

Now I do not want to jump the gun, because too many of my symptoms have been chronic and disparate, not following a single pattern of seizure, whereas at least one authority claims that once you have one seizure, all others look similar. Indeed, while you might say that Grey Crinkled Paper arose from a seizure, and the jacksonian seizure with Novocaine were definite, and too the feelings of impending doom were also seizure activity  while I was taking Clozaril and other antipsychotic medications, the others, with different patterns yet, could not have been,since they were more varied even than those. The olfactory hallucinations had to have been seizure  associated too, but then where does it all stop, and where does the notion that one seizure sets the pattern for all others go?

 

And yet even conservatively I myself would count all those instances as seizures even if I were not going to count anything else as seizure-related right now…So  what to make of them, and the fact that ALL were so distinct and different from one another:?

 

Does it make the whole thing, the whole illness over all TLE or schizophrenia? Can you in fact have both, or does having TLE  suggest that the schizophrenia was a misdiagnosis all along?  And how does one know? Certainly, I have one trait that points towards the TLE diagnosis: I do well inbetween “attacks” of either illness, and seem to have not suffered any deterioration in brain function cognitively. Not massively. Though my memory and such is faulty, that is often the case in TLE itself!

I don’t have the slightest idea, but I suppose I will find out as the weeks go on and I continue to discuss it with Dr C, as I anticipate I will. I do plan to  see him once Dr O leaves… I liked him enough to do so at any rate, and I liked this idea enough too, to want to pursue it too. I    t will be very interesting to find out what happens, where it leads…If it redefines me entirely, I wonder how I will feel or deal with it?

 

 

 

Schizophrenia and Temporal Lobe Epilepsy

I want to begin by quoting two websites on the symptoms of each. First the Mayo Clinic on the symptoms of schizophrenia and then Richard Restak’s excellent article on TLE.

 

Schizophrenia Symptoms

By Mayo Clinic staff

In general, schizophrenia symptoms include:

* Beliefs not based on reality (delusions), such as the belief that there’s a conspiracy against you

* Seeing or hearing things that don’t exist (hallucinations), especially voices

* Incoherent speech

* Neglect of personal hygiene

* Lack of emotions

* Emotions inappropriate to the situation

* Angry outbursts

* Catatonic behavior

* A persistent feeling of being watched

* Trouble functioning at school and work

* Social isolation

* Clumsy, uncoordinated movements

In addition to the general schizophrenia symptoms, symptoms are often categorized in three ways to help with diagnosis and treatment:

Negative signs and symptoms

Negative signs and symptoms represent a loss or decrease in emotions or behavioral abilities. They may include:

* Loss of interest in everyday activities

* Appearing to lack emotion

* Reduced ability to plan or carry out activities

* Neglecting hygiene

* Social withdrawal

* Loss of motivation

Positive signs and symptoms

Positive signs and symptoms are unusual thoughts and perceptions that often involve a loss of contact with reality. These symptoms may come and go. They may include:

* Hallucinations, or sensing things that aren’t real. In schizophrenia, hearing voices is a common hallucination. These voices may seem to give you instructions on how to act, and they sometimes may include harming others.

* Delusions, or beliefs that have no basis in reality. For example, you may believe that the television is directing your behavior or that outside forces are controlling your thoughts.

* Thought disorders, or difficulty speaking and organizing thoughts, such as stopping in midsentence or jumbling together meaningless words, sometimes known as “word salad.”

* Movement disorders, such as repeating movements, clumsiness or involuntary movements.

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Cognitive symptoms involve problems with memory and attention. These symptoms may be the most disabling in schizophrenia because they interfere with the ability to perform routine daily tasks. They include:

* Problems making sense of information

* Difficulty paying attention

* Memory problems

Complex Partial Seizures Present Diagnostic Challenge

Quotes from Richard Restak’s article in Psychiatric Times (Sept 1,1995)

Since the condition [Temporal Lobe Epilepsy] may involve gross disorders of thought and emotion, patients… frequently come to the attention of psychiatrists. But since symptoms may occur in the absence of generalized grand mal seizures, physicians may often fail to recognize the epileptic origin of the disorder.

In most instances, the emotion experienced as part of the seizure is a disturbing one variously described as dread or a feeling of impending doom; in others, the emotion may be experienced as pleasant or euphoric…Descriptions such as “a wave,” “something flowing upward” are often employed.

Controversy continues as to the validity of a so-called temporal lobe personality… Outbursts of irritability, rather than frank violence, are hallmarks of TLE.

[R]are presentations include anorexia nervosa (Signer and Benson 1990), multiple personality (Schenk and Bear.

Most common is a global hyposexuality (deficit of desire and feeling]…

TLE also may be responsible for chronic rather than just acute psychoses. While any of the symptoms of schizophrenia may be encountered, paranoid traits are the most common. TLE patients can be distinguished from schizophrenic patients by the maintenance, when not acutely ill, of warm affect and good rapport…

The treatment of TLE is complicated by the fact that many times improved seizure control via anticonvulsants leads to deterioration of the neuropsychiatric status. Schizophrenia-like epileptic psychoses often emerge when anticonvulsants are normalizing or improving the seizure activity…

While the illness is an epileptic one and treated by neurologists, many neurologists remain unfamiliar with and even uninterested in its neuropsychiatric components. But by ignoring the experiential symptoms, the neurologist deprives the patient of the opportunity to coherently integrate all aspects of the epilepsy. It may also cement the patient’s misconception that in addition to the epilepsy, he or she suffers from a “mental illness.”

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I was going to go into a deeper discussion of this, but cannot at this hour (11:15pm as I must go to bed now. But I plan if I can to do so tomorrow. And if not then, well, then ASAP. Meanwhile, I would have told my schizophrenia.com readers to think back on all that I’d written over the years, and tell ME what is going on…but you cannot do that, not knowing me as well as all that. Needless to say, however, I do think there is reason to suspect that the second diagnosis might have some possible validity, though it is hard to see how all of my symptoms can have been only TLE…But wow, would I be relieved to have a name for it if they were!

TTFN

There is an interesting discussion about schizophrenia and TLE etc here: Schizophrenia and spiritual experiences: Is there a link? http://livewithwonder.wordpress.com/2011/10/19/schizophrenia-and-spiritual-experiences-is-there-a-link/

New Psychiatrist

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.