Category Archives: Zyprex

Symptoms, Zyprexa and Recovery Again

 

Zyprexa: "The miracle and the monster"

 

Yes, I am kinda sick of this rollercoaster, myself. But there you have it. If I will not or cannot take the medication, and I have no other choice, what is a person to do? I know it is a miracle drug, yet I fight taking Zyprexa at every possible turn. Why? Because, frankly, I cannot tolerate the enormous weight gain it caused the first time I took it – and for many years, off and on. I simply cannot stand being that visible, eating up so much of others’ air, intruding, in truth obtruding into their space as I do  even now…People will ask me questions about some “trade-off” as if it were so easy as that, as if THEY could easily decide, would have no trouble opting to take the drug, and die early from diabetes, which almost a foregone conclusion after becoming obese on Zyprexa. Hell, even without the obesity factor, people develop diabetes on the drug…And that’s only for starters, what about the cholesterol and triglyceride levels  that go up and up? Or is that part of the trade off too? That a person with schizophrenia should not care about elevated levels the way anyone else does…

I have mentioned here, I believe, the recent studies that have shown that people with SZ  become overweight and obese SOLELY on account of the medications. Without these medications, as a group we would tend to be thinner than the average adult. I have suspected this for many years. It would seem to me that every time I read a memoir by someone with sz, they would tell a tale of being a very slim person, until they were plied with some typical or atypical anti-psychotic, at which point they started gaining weight. Now, it was never clear to me whether or not the old drugs really helped much of anything, except to alleviate a few positive symptoms in some people.

Oh, those who disturbed the peace could be quieted, calmed yes,but no one was cured. I met very few people who wanted to take meds because the drugs actually made them feel better. Oh, perhaps they did, since if one got rid of the hallucinations and delusions of course one would feel better. But for myself the old neuroleptics  didn’t work particularly well on either positive or negative symptoms, and the side effects were awful, esp the deadening  lethargy the drugs produced. I would never choose to take any of those drugs and I agreed to take prolixin because it was the lesser evil because otherwise, they would threaten me with consequences far worse…But had I had the choice no way would I have chosen to take any of those drugs.

I’m terribly sorry, but I must stop here. I just wanted to get start on someting, but it is 4 am and I need to go to sleep, plus my eyes are so wonky all over again that I can barely see what I am doing, and at times I cannot at all. My eyes are going nuts again, crossing over or going outwards whatever! All I know is the text dances around and I cannot see through the jumble of letters frlying around. It is hard even to figure out which hand is doing what!

Well, enough for now. I hope to be back here tomorrow, but time has a way of getting away from me…

Certainly, the side effects of drugs like Thorazine were problematic enough to begin with. And count weight gain among them. How is it that any doc in state institutions could not see this correlation? But as you know, “there are
none so blind as those who will not see…”

Narcolepsy and Sleepiness: I wake and sleep and sleep and sleep

I am always sleepy. I am always sleepy.  I am always sleepy.

That said, my best time, if I have had enough sleep the day/night before, is after midnight. Dr O — whom if you recall I now refer to as Mary in most other contexts, since she is no longer my doctor and has temporarily retired from the “business” or is “on sabbatical” as she calls it — told me once that the notion of some people being “night owls” and some being “early birds” is a real phenomenon and not just a myth, that in fact there are reasons why certain people like me prefer the hours post-midnight and feel most alert and alive then, and why I claim that it is then that I get my best work done. As I understand it, there are actual “chemicals” — I hate that generic term for more specific biological substances! — which impel a person towards sleep and that these are at their lowest in the morning and constantly building up during the day until for most people, or at least for those whose drive to sleep peaks at around 10 or 11pm or so, the sleep pressure is such that they feel the urge to sleep and usually do so easily around that time. (I think this is modified somewhat by the fact of artificial light and that in fact were we bound by (some would say limited to) the natural cycle of daylight, our “sleep chemicals” might take on another pattern, pushing us to sleep whenever it got dark enough that sleep was our only recourse. Of course, we still don’t really know why we sleep at all, but the fact that there is nighttime, that it is too dark to see in and do anything in, or was before we acquired artificial means to light up the darkness, and that there is nothing to do then except sleep seems to me to be reason enough. Better sleep than fidget! And better sleep than try to venture outside of your warm cave and get yourself killed in the dark…

But as I was saying, I am always sleepy. Or almost always. Sometimes, when my medication is actually helping me, and when I have added to it a strong cup of coffee (often it seems that the coffee is a more effective alerting agent than the methylphenidate, oddly enough, since I can easily sleep through 40mg of the latter but not through the 150mg of caffeine in a cup of coffee …) I feel somewhat able to get things done. No, I can’t read, or not very often. Reading more than a few pages is usually beyond my concentrating abilities. This is partly because my eyes, with their strange tendency to conflate inability with lack of desire, reject it and partly because reading simply overwhelms all the powers of any alerting agent to keep me awake: To sit down and read and stay awake seems literally impossible. However, years back, in the 1990s and early 2000s, when I took Zyprexa 35mg, reading was massively important to me, more important to me than any other activity I could imagine (due to the Zyprexa having wakened me to the world…). Dr O, who became my sleep specialist as well as my psychiatrist in 2000 and so was able to monitor both my schizophrenia as well as my narcolepsy, was aware of this and treated it with both methyphenidate SR and ER and Provigil and sometimes Adderall as well. These in varying combinations plus the Zyprexa were at least helpful. I remained sleepy, and continued to suffer from hypnogogic/hypnopompic hallucinations — that is, REM intrusions into waking states, or dreaming while awake, and not just when getting up or falling asleep but in the middle of the day — but I was alert enough to read as much as I wanted to, at least during part of the day.

Now, however, my eyes refuse to let me read, even when it might be possible. And when I do  at least try to read, that is, when other activities such as writing are possible and so reading ought to be as well, I find myself falling asleep because of eye strain and fatigue. Talk about a vicious circle. Yet I will work around both of those in order to write! Weird…Even now I can barely see what I am writing, have to contort myself to “get around” the confusion of dancing and shimmering letters, but I continue to write nonetheless, as my eyes do not refuse to do that. Yet they do and would refuse to read someone else’s blog, especially anything longer than a short paragraph, if that.

Sleep sleep sleep and that well known “ravell’d sleeve of care” as in Shakespeare’s MACBETH:

“…Sleep that knits up the ravell’d sleeve of care, The death of each day’s life, sore labour’s bath, Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast….”

Balm of hurt minds…Indeed, yet I did not sleep well last night. I was both too upset and riled, and too raveled or would we say, unraveled by the things that I felt I had to do to please too many people. I didn’t, I thought, have the right, or the wherewithal to say No to anyone,  I didn’t know how, I didn’t feel, after I had said “Yes, I will, I would, I can, I should,” to then say, essentially, “F—K off,” and “No, I won’t after all.” Well, of course, to say, “No, I can’t,” is not necessarily to say, “F—k off!” to any one, but I was feeling that way. I felt so angry but also so terribly tired and so overwhelmed and crazed by people demanding of me more than I could cope with and then just that one inch more that I thought I would die…and then, and then…it was basically “F—k you, everyone! I cannot take it anymore. I quit!”

Luckily I didn’t tell anyone that, not exactly, and not in the middle of the night.  I didn’t even call Lee and tell him that I felt overwhelmed and unable to take it any longer.  I cried, yes,. And I wrote emails to people I could scream to, in  despair without jeopardizing our friendships or my freedom…I always have to worry about that! (*Nor did I admit to anyone  — except one pen-friend — that I also feel, frankly, obese, so obese that I want to —but I won’t say it, won’t say it, won’t say it…All I will say is that I hate myself and that I will never again take either the Zyprexa or 30mg of Abilify. If I had known that the additional 15mg of Abilify would make me gain 20 pounds in 6 months I never would have agreed to stay on it after the hospital stay last spring. If I hadn’t taken it after I got out, I would not be in this horrible situation now. No one, least of all the visiting nurse who presses both drugs on me in the name of keeping me sane (hah), seems to understand  how insane it makes me) But I have digressed yet again…

I was speaking of how tired and over-committed I was,  and how I felt that I could not say, “No, I cannot do this, that or the other” to anyone, most especially after I had made a commitment, however unwilling– or even unwittingly. That is not to say that I did not want to do all of what I had to do, only that  I had signed up for too much and now had to draw back and decide what my priorities were. Even those I wanted to do, I had to choose among as well. But I wasn’t calm enough to think this last night, let alone to do such choosing.

Instead, though I had taken my Xyrem, the sleep medicine for narcolepsy that usually zonks me right out, and had taken it early, I tossed and struggled with the green microfiber cushions of my recliner for about an hour, trying to find  a tunnel into sleep, so that I could forget my woes for a while. But it was, as you can imagine, useless, even with the Xyrem. So instead of fighting the green any longer, and tearing holes in it, I turned the lights back on and pulled the lever and sat up again. To my small satisfaction, I discovered that I had in fact slept a  little in my tossing, and that it was 3 a.m. and not just midnight. Good, so I was not going to be up the entire night. At least I could say that I’d slept a few hours…But I was wide awake now. So instead of brooding the more, I decided to…well, there were some poetry contests with December 31 deadlines, so I started the long process of finding poems and making duplicate copies and such to enter those…and it was in doing that, and cleaning the apartment, that the night finally came to an end…

Today, of course, I suffered from extreme sleepiness, until now, when it is nearly midnight, and I am awake again. Go figger.

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

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.

Compulsive Eating and Zyprexa (updated)

ALL EYES ARE UPON US
ALL EYES ARE UPON US

This is my ALL EYES ARE UPON US papier mache sculpture head — It should easily be finished by the time I am having a poetry reading and exhibit in Mystic on November 15th. I would like to exhibit it with the others if possible. It is the newest of my work and therefore the one I am most proud of. I am not completely clear just where I am going with it, but I do know not to worry, that inspiration will come to me eventually. Indeed, some already has; I am starting to place a tri-folded American flag underneath her ( yes it is a woman…) arms, as if she is hugging it for dear life…Why? not sure, but I believe my subconscious has a message for me there…I will decipher it and rest of it later, when I am through. However, my thoghts on the “meaning” is never the last word on it. I expect my viewers to do the same, that is, interpret the sculpture according to their own lights, according to the vicissitudes, or the longstanding truths of their own lives, not mine. It should mean whatever they want it to mean, according to their own life experiences. All of which is to say, There is no right answer, no real meaning here, only the sculpture’s evocative power to suggest this to one person and that to another.

Now regarding this post’s title, Compulsive Eating and Zyprexa: I had a rough week two weeks ago, during which I did something self-destructive though along too familiar lines with a “fagot” of cigarettes tied together with thread and simultaneously lighted. There was talk of the hospital to “keep me safe” if nothing else, but I saw no point, and indeed there was none. No hospital had ever proven they coud truly keep me safe: I have attempted and successfully hurt myself sometimes seriously almost everywhere I’ve been sent to, including breaking a carefully supervised mirror in a make-up compact and slicing my wrist open. My visitng nurse knew and agreed but made me agree to take a PRN of Zyprexa for a while. I didn’t really fight this. As  you, Readers, know, Zyprexa is a drug abut which I am extraordinarily ambivalent. It is both the single most helpful and effective drug I have ever taken, nearly a miracle medication, if not precisely that, but also the absolute pits in terms of a side effect I hate more than any.  I have not yet figured out how to tolerate this love/hate relationship I have with the drug. For instance, despite hating the single worst side effect, I very much appreciate being able to read, read, read, to concentrate and pay attention and remember..

Oh, perhaps it feels subtle the effect that Zyprexa produces, the therapeutic one, the helpful effect . In actuality, though, the change in my behavior is immense, not to mention on some very fundamental thought patterns. I don’t actually recognize at first that all of it is drug-induced: I just sit down and decide to pick up a book — that all by itself is unusual for all that it feels natural. But so too is the astonishing fact that I feel interested instead of listless and fearful that I won’t “get” it, that I wont be able to attend,  and upon opening the book, the fact that every word seems to flow,  my mind fluid and absorbent and the words just pour, the words and the sense and the meaning, well, if I weren’t so absorbed in it, I would be amazed… But I think, Why haven’t I read before now? Why,  when it is so easy, have I not been doing this all along? ( I have forgotten that it was NOT this easy until I took the Zyprexa…). But the difference between then — not reading, and now — being able to attend and absorb and read — is not subtle at all. It is marked and significant. I finish books and articles, instead of merely dabbling in them. And I remember what I read, instead of most of the content flying in one ear and out the other.

But the same effect that brings about the therapeutic effect, unfortunately and seemingly by the same mechanism, induces the unwanted and horrid side effect of an insatiable appetite. Just as subtle and my being able to read, I scarcely notice at first that i want to eat more than usual. I simply feel increased desire for food, and think nothing of it, since wanting food is normal, right? It is only when I recognize, when I realize that it is constant, and occurs immediately after I have just finished a full dinner plate that I  begin to associate it to the new medication. My weight quicky increases, but because the food desire feels like me, as if it is simply native to me, I cannot justify it as purely drug induced, but am ashamed of my new lack of self-discipline and my also new tendency to compulsive overeating. Even when I know for certain it is all “chemistry” –and begin to tie ALL obesity therefore to chemistry to the effect of body chemistry that is out of whack, either congenitally or induced by the environment, perhaps by  igesting the wrong foods themselves. What if eating high fructose corn syrup, already associated (the reasons are still unclear) with obesity, changes one’s chemistry to produce a malignant positive feedback that only induces more obesity ad infinitum as long as one continues ingesting it? Even when I know for certain that my increased and uncontrollable appetite is pure “chemistry” it doesn’t fully relieve either my shame or my latent anger at what ‘I have done to myself.”

I have been off Zyprexa for many months now, and have rarely needed or taken a PRN, but thought it makes a noticeable and positive difference, it is the already evident weight gain I cannot/WILL not tolerate  (Truth is, it showed no sign of ending even at 160 pounds the last time I took it). My friend Joe who has taken it for years developed another very common “side effect” of this drug, diabetes, on top of ALS… So I am between the Scylla of “negative” and/or cognitive symptoms — poor concentration and inability to pay attention, the lack of a certain spark in my life AND Charybdis  — the whirlpool of an uncontrollable urge to eat up everything in my refrigerator right after I have already had a full meal, the wild animal panic if I cannot, and the lack of concentration induced in its place because all my mind can focus on is “What can I eat now???” It is a panic I feel in my hands, especially along the backs of them, more than anywhere. I certainly do not eat out of even imagined hunger. I know that. I feel FULL, in most cases because when I am hungry I usually will eat sensibly… But when smitten by the drug-induced food-seeking behavior after a  full meal, I can even tell myself out loud, “You aren’t hungry, you don’t need to eat”…this piece of bread, or cheese, or fruit, whatever is in my hand. I listen too, I put the food back at once, and wash my hands, and go back to the living room to read or do my art or whatever I was occupied in doing before I was seized by this compulsion. But literally no more than 10 or 20 seconds later, another food impulse will propel me from my seat to the refrigerator, and if not consciously thwarted I will eat. And eat, and eat. Not like a bulimic, mind you. No, I take one piece of fruit or bread or cheese (I did not last as a vegan, alas, because I felt sick and dizzy living on fruit and green and colored veggies) and a knife and a plate, and sit in a chair, and cut it up and eat it reasonably slowly while I read. But soon I am finished and ready to read again “solo.” That is when the tension starts building to another threshold over which I feel it is impossible to climb in safety.

What I do instead, is follow this ritual, with another just like it a couple of minutes later, and then a couple of minutes after finishing the second and ditto the third and fourth and… Before you know it I have eaten so many calories up to a certain point, a set point if you will, where finally the switch flips off and my “hunger” goes off, and so does the food-seeking…I can now settle down and get something done. but until the threshold is reached and surpassed, I cam think of nothing but eating. The cure for it, the only remedy, is that I must be sure to short circuit the cycle by taking Xyrem and forcing myself to go to bed after supper. And I must NOT eat all day and evening except for coffee and diet soda (luckily the Zyprexa induces food-seeking behavior and not real hunger, so I am not tortured as long as I do not break my fast), until right before bed I allow myself to take a few bites. If I do not eat at all, I do not feel like eating and the cravings do not even begin. It is when I do take the first bite, just like an alcoholic, that all bets are off and all the control gates to hold back the flood open.

I still think that Zyprexa induced eating and 15 mg of Abilify-induced lack of appetite would be a great way to study the science of appetite, what causes compulsive eating and what breaks that cycle and stops appetite and interest or uncontrollable interest altogether. I would agree to be that guinea pig but I’d aso say that plenty of people could do so…I don’t see why others would not react as I do, especially a plenty of people have had the same weight gain reaction as I.

I will try to continue my discussion of this topic soon, as I want to research it a bit and I have some further thoughts on the subject. However, at the moment I needs must get other work done…

TTFN

Oh yeah, by the way, Li and I had a decent discussion abut TLE during one of my recent visits and it made me feel better about him, for the time being. At least he is going to consider it, though he told me it never rules out schizophrenia as there are always a percentage of those with TLE that concomitantly have schizophrenia as well.