Schizophrenia Medication: Should I or Shouldn’t I?

This is from a 2011 entry on my About Schizophrenia blog. However I have changed it and updated and added to it, so I thought I would post it here. Dunno how many of my wordpress readers might not have seen the first version at all. I have also added a discussion of Xyrem, my sleep medication to the “mix” as I consider it a “minor miracle” that has been underreported and never before used.

Okay, I admit it, I have had my conflicts surrounding schizophrenia and the issue of medication — whether to take it, when to take it and what, if anything, I will take. In fact, I admit that this remains an issue, though less of one so long as there is a medication that I find inoffensive. But more on that later. First let me address the problem of that conflict itself.

In the “old days,” which is to say, during the 1980’s and early 90’s, I was treated with the so-called “typical” neuroleptics like low-potency Thorazine and Mellaril (in doses as high as 1500mg which left me with an eye problem known as chorioretinopathy, which activated once and could reactivate at any time and potentially lead to blindness…). I was later treated with high potency, lower dose drugs like Haldol, Trilafon, and Prolixin, either orally or by long-lasting depot injection. Although I was compliant with these meds for a while, I eventually found them so troublesome that while hospital doctors insisted they “helped” me, more often than not I would take them in order to be released from the hospital, only to stop them again.

This became a pattern that led, familiarly, to what was called the revolving door in and out of psychiatric units. While I understood this only vaguely, I found the dulling side effects, not to mention the physical discomfort of these medications so terrible that even if not taking them meant yet another hospital stay, nevertheless I often refused — in fact I could not bear to take them despite the psychosis that resulted. Had anyone bothered to ask me why, I would have told them that the drugs’ side effects were simply worse than the illness; they were hell and there were no two ways about it.

All the hospital staff and outpatient doctors and nurses believed that no one could possibly wish to choose “madness” over mere drug side effects, but I was someone who frankly preferred the former to the agony of the latter.

Now, while I speak as if I knew I was psychotic, that is not altogether true. All I knew was that I was being hospitalized a great many times, that I had been told that if I took the pills I was given, I would be able to stay out. I did not at the time believe that I had any illness at all, and did not for a very long time believe it. However, what I did want was to avoid the often brutal treatment of various hospitals, and their use of four-point restraints, sometimes for days at a time, spread-eagled tied to the corners of the bed, in the 90’s , and that was what sometimes persuaded me to take them, not the understanding or agreement that I was ill.

But surely I was not alone in feeling that the side effects of the meds were worse than the consequences of not taking them. There would not be so many people with schizophrenia who like me refused them, if so. Whether I believed I was ill and needed to take medication or not, it hardly matters when the pills I was given caused unbearable pain, or so deadened me, I felt, that my life was scarcely worth living…

I know those meds in particular– the older drugs both lower potency and higher potency, at almost any dose, caused me physical side effects and physical suffering. That alone was enough to make me ambivalent about taking them. What I never knew, and still do not really know for certain, was whether the drugs themselves emotionally deadened me, or whether what I came eventually to appreciate might in fact have been illness after all was the cause of my feeling deadened. Did I lack enthusiasm and passion because of the illness or because of the medication side effects?

Through the early 90s, I was on Prolixin as the least distasteful anti-psychotic, and having been more or less forced to take the long-lasting depot medication, I could not “stop” taking it, not once my weekly injection had been given. Then finally, Connecticut’s Medicaid program started paying for Clozaril, and I was among the first people in the state to try it. All went well at first, and I seemed to be off to a good start. But unfortunately, once discharged to home, “all hell broke loose” with devastating side effects that were if anything worse than anything I had experienced on Prolixin or any other older neuroleptic. This may have been unusual, I do not know, but I had horrendous and immediate side effects: sensations of impending doom that made me afraid of falling asleep; then an inability to swallow even my own saliva; a kind of uncontrollable jerking, seizure-like, while I was conscious; and when I was awakened — nearly forcibly — in the morning, I experienced an unbearable sedation that took hours to wear off…

I gave the drug several trials, but I was not disappointed when I developed a very low white cell count and was no longer permitted to take it. After that, it was back to Prolixin, and back to what had never really lifted, not even with the so-called awakening miracle drug of Clozaril: the deadened feeling. I felt hopeless, as if nothing would ever really work better for me, but then again, why should it when I didn’t really suffer from an illness like schizophrenia to begin with?

My therapist, the one who had tried me on Clozaril so many times, left her practice, and I was shunted to a nurse-therapist at the Clinic, one who took an immediate disliking to me. I felt a similar antipathy for her and so with no love lost between us, it was a huge surprise to me when, after she gruffly suggested I try this new drug, called Zyprexa, that I woke up only a few days later feeling, well, not only awake and better, but awakened. Awakened, alive, even reborn. I could read, I could remember what I read, I could study and I felt enthusiastic about it all in a way that before then I could only dream of.

Oh, I knew that I wanted to feel that way, but it had literally only been a dream or a wish before then. I had been vaguely hungry for this, but until I took Zyprexa, it seemed that I had been completely unable to grasp or fulfill my wish to do any of it. On the drug, I could pay attention and concentrate for longer than I had in decades, and learn things and retain what I learned. I felt that I had a whole lifetime to make up for, and started to make up for lost time. What is more, I was so confident in my ability to read and study now that I had found a drug that helped me, it seemed entirely possible to do so.

Why do I tell you this? Because while Zyprexa was the real miracle drug, a medication that did not so much give me back my life as give me a life I truly never had, it was, as I may have said before, also the side effect drug from hell. As I would soon discover, my weight started to increase almost from the first week, and it kept going up and up, despite my longstanding history of strict weight control and a vegetarian diet. Also, it is a very sedating drug, so that I had to fight off sleepiness that added exponentially to the sleepiness that my narcolepsy had caused for years.

Luckily my psychiatrist soon thereafter was also a sleep specialist; she had no problem treating this with the appropriate drug, Ritalin, and so it was not the problem it might have been, but the weight issue was, and is in fact, one of the reasons I have on-going conflicts over taking that particular medication.

Side effects of any sort remain 1) the major reason I will not take a given medication, and 2) the major reason I do take the medications that I take. If this surprises you, let me explain. First the latter: Of my present medication regimen, the salient ones for this discussion are Abilify and Geodon, and I take them not for the reasons my psychiatrist may have prescribed them, but for their “side effects,” at least as I perceive them. For instance, it was only once I started taking Abilify combined with Geodon — I could never tolerate Abilify by itself — that I found myself able to do art, and to write so fluently and so abundantly as to be unable to stop once I start. In fact, I call these two my output combo, medications that make my creative productivity enormous, whereas Zyprexa is just as literally my input drug, my intake drug, insofar as I can read and absorb information, and also eat, eat, eat.

For the same reason, though, I will not take Zyprexa because of its intensely dispiriting side effect of causing obesity and with it diabetes and and the concomitant conditions that go along with that. I wish I could take it: I miss reading terribly, miss the heady feeling of intellectual confidence and the ability to learn and remember and such.

Unfortunately, despite my early paean of praise for Latuda, I have to admit I have reconsidered it, as I found that though I cleaned my apartment regularly, I slowed down on my drawing and writing, and at the same time had not found myself interested in reading, nor even in watching my usual documentaries…It felt like a kind of straitjacket. I had weathered the psychotic crisis, but after that its usefulness seemed to be limited, and limiting. I agreed to take it, if necessary, in a crisis, but aside from then, I did not find that it helped beyond attenuating the worst symptoms.

Actually, in the two years since i took Latuda that one time, i have come to believe that the drug did little or nothing for me. I think that i simply managed to pull myself out of a bad time by myself… It can be done, and most especially when i am not facing that critical six month vulnerability time. And this was in fact in between the six months – during a period of relative strength. So my sense is that the latuda functioned mostly as a placebo, and that i myself pulled myself out of trouble.

In truth, given my druthers, in a crisis and forced to choose between one hell versus another, I might prefer Zyprexa over Latuda, since the benefit of the first outweighs the complete lack of any positive benefit from the latter. Which is to say, even if both happened to treat psychosis, only the Zyprexa has any positive side effect in addition to that. Latuda only has the negative side effect of strait jacketing me in the process.

The next two paragraphs were in my original post…i keep them as is here only so that i can follow up with a “but now” discussion of how things have changed:

One other “benefit” from taking Zyprexa, discovered within just the first week or so, was the realization that a medication made a difference, a huge difference. The conclusion I began to draw from this was not so sudden, and it was reluctant, but eventually I had to decide that perhaps, if a medication made such a radical difference, and a medication, Zyprexa, supposedly “treated an illness called schizophrenia” perhaps, whether it was schizophrenia or not, I did have some illness. Surely, if this medication, which did not help most people, made such an enormous difference for me, it must mean something…

I was reluctant for a long time to answer that further, and still cannot say a lot more without cringing. But if indeed there is a real entity, a real singular illness of schizophrenia, as opposed to a syndrome, and if Zyprexa really is a treatment for it, an effective and appropriate one, then god bless it, I will accept the diagnosis. I might still refuse to take the drug, but I would accept that I have the illness and continue to say that Zyprexa was the best miracle drug from hell I ever took!

But now i still cringe and cannot use the word schizophrenia without wanting to say, Psychiatry is an art of making an opinion…and even more often of making judgments. Two worse things to base a field of so-called medicine on i cannot conceive. Yes, Yale diagnosed schizophrenia, and did NOT decide to diagnose a personality disorder on top of it, which was, truth to tell, a huge relief*, because I KNOW that it is only the abusive hospitals that do that, and they diagnose an Axis II disorder largely to blame the victim, blame me for PTSD behavior that they induced! You simply cannot seclude or 4-point a vulnerable patient, viciously and brutally, and expect that person not to respond with traumatized behavior, which is predictably unpredictable…But can be described and has been.

In any event #1 how interesting that Hartford Hospital, in the 90s, when it was independent of the IOL, and often kept me for months, never saw any personality disorder in me when Sharon Hinton was head nurse…ONLY “schizophrenia, chronic” as I would read upside down on my admission papers. Personality disorders are lifelong and chronic. You do not suddenly develop them midstream in your life. It makes NO sense that Hartford Hospital as the IOL would now suddenly “detect” an axis II borderline disorder that they never did before. No, in fact, what happened was they traumatized me, and then blamed the victim for TRAUMA behavior…Or actually, for no behavior at all, since I never even resisted the restraints except once. And then the last night when I screamed bloody murder. And I did not even know that I would be released the next day. That was purely chance…and good luck.

In any event #2, I also took Zyprexa at Yale Psychiatric Hospital in February and March, and this disturbs me, because while I did some reading, my art output was tremendous as well. And Zyprexa was supposed to be only an INput drug. Of course, I gained ten pounds in two weeks…Worse, ever since I left, and got back on the Abilify and Geodon, and am taking NO Zyprexa, I haven’t done a thing, no poetry, no artwork of any sort. Not even a single trading card.

I do NOT believe in schizophrenia, not for me at any rate. I do not think I even need Zyprexa. But on the other hand, I wish I could take it, because I feel so much better when I take it and I do not know why. I mean, even when I am not fighting voices, I feel better on it. WHy is that? That doesn’t make sense…You should only take Zyprexa for symptoms that’s what I have always felt. Once the voices go away, forget it. Yet, yet, yet…I know my brain works better on it, and always has. It doesn’t seem fair. (Not that life is or should be fair…But I mean, really, my single most hated drug in the arsenal, and it is the one that works best and not only that it works really well…???) CRAP! My biggest fear is gaining weight. I understand how petty that is, and I should be bigger than that spiritually, but I am not. I simply cannot do it.

So there I am, and that’s the picture. Now you know how two-faced and hypocritical I am about medication. I tell people to take theirs. Or not. And I wont even take the one medicine that I know helps me, because it will make me fat. That is really the only reason I do not take it. The only reason. It is that petty, and that simple. But that impossible.

One additional drug that I take now, in addition to Abilify and Geodon and Ritalin is Xyrem, sodium oxybate, an anti-narcolepsy sleep drug, that helps me get delta sleep at night, slow wave deep sleep and to need less Ritalin during the day. As far as I am concerned the less Ritalin I take the better. I have never liked needing it or taking it, but I have always needed it just to stay awake during the course of a normal day. I haven’t gotten through a single day without several periods of sleepiness since college, when I would fall asleep at any time of the day, very unexpectedly.

Now that I take Xyrem at night, twice a night, though, I need fewer pills for alertness during the day, which is great. I also find that my appetite is vastly reduced, which might help with the Zyprexa, except that I could not take the two drugs together, as they are both very sedating and cannot be combined…What it does do is prevent any confusion of dreams with reality. I simply do not remember any dreams, and do not confuse the two any longer, I do not know why. I am not sure if this effect would hold true for all or if it is just for me. It is possible that dreams would increase for others. I only know that I used to have a huge problem, before the Xyrem and the other meds, with nightmares every night and being unable to tell dreams from reality…but now that I no longer dream I simply have neither problem at all.
——————————————————————–

*A huge relief: When I write that I am glad and relieved they did not Dx a borderline personality disorder, I must tell you that I am aware that in the hospitals where I have been abused, they dx such Axis II disorders as a way of communicating to all the staff that a patient is “manipulative and devious” and basically you cannot trust anything they say. I KNOW this to be the case because I have two psychiatrist siblings so I have gotten the lowdown, ie the truth about such terms in hospital REALLY mean. And to be called “A Borderline” in a hospital, is not a good thing. It is shorthand for being called a Royal Pain in the Ass.

Now, having Borderline Personality Disorder is something different from being called A Borderline…And having the disorder means you are suffering a great deal ALL the time. But in the hospital, when they claim to “suddenly detect” borderline personality, it is something wrong with the hospital, not the personality. And my point is that when they have brutally secluded or restrained a patient, that is NOT the time to suddenly be detecting anything except iatrogenic PTSD…

3 thoughts on “Schizophrenia Medication: Should I or Shouldn’t I?”

  1. Donna — you, like Pam, are a brilliant, coherent writer. I am amazed by what you have written here, and how well you have explained the terrible roller coaster ride of psychotropic pharmaceuticals.

    From my personal experiences, along with the literally dozens of reputable books I’ve read on the subject of mental health and mental illnesses, I believe your instincts are exactly right. The psychotropic drugs that are supposed to help us, in actuality cause far more damage than help. Furthermore, these powerful chemicals cross the blood-brain barrier and change the essence of who we are, leaving us worse off of them than we were before we were given these drugs.

    Of course, the docs who have been brain-washed by $Big $Pharma tell us that having a mental collapse after going off their brain-changing drugs, is proof that we “needed” the drugs in the first place. But that’s like telling a person who is having a bad headache due to caffeine withdrawal, that his headache proves he has a chemical imbalance and therefore “needs” a daily dose of caffeine in order to be “normal.”

    I think it’s brilliant, Donna, the way you have figured out how to do your medication so that you can function to the best of your current capability. You are being compliant — with yourself!

  2. I have many personal arguments against taking antipsychotics. First of all, I endured schizophrenia since I was about 10 yrs old without anyone knowing anything about it. Without being diagnosed, that is. Yes, I had been thought of as weird and even retarded by my peers, mostly because of social anxiety and being an extreme introvert that were a result of or in addition to the schizophrenia. But my sanity hung on the fact that I was creative and could physically exercise to the point of exhaustion. I think that exercise (running) was the most potent antipsychotic I have ever experienced, probably due to the release of endorphins and the subjugation of ongoing anxiety for a few hours. The hallucinations never really bothered me because I couldn’t remember being without them. Nevertheless, once doctors knew of the hallucinations, that became their excuse for medicating the hell out of me. And subsequently robbing me of my creativity and the ability to exercise. You can see where this is going.

    For one thing there was exercise equipment in the hospitals I began to frequent (after starting on antipsychotics, of course.) but I could not use it without a doctor’s prescription, which was never forthcoming. I guess they didn’t put much stock in exercise. It can’t be patented and marketed and sold as a pharmaceutical. Once I began taking Zyprexa, the option was moot anyway, because I gained so much weight there was no possible way to run anymore.

    Although I had schizophrenia, as I said, for many years before diagnosis and treatment, I was always able to read voraciously, retain what I had read, and use that as grist for the mill of creativity. Once I started taking mood stabilizers (which, btw, never stabilized my mood) like Lithium, Depakote, and Tegretol, I began to REALLY suffer mentally. Yes, I could tolerate hallucinations, but what I found intolerable was the side effect of being unable to be intellectually stimulated. I was laid low. I could no longer read and understand the combination of words. I couldn’t sit through a movie because I could no longer process the sensory input — what I saw and heard became separate entities rather than combining seamlessly into a meaningful whole. It was a frightening, assaultive experience. Even music ceased to be soothing. All I wanted to do, and practically all I DID do was to lie in bed just trying to think one clear thought. It couldn’t be done.

    After the antidepressant and mood stabilizer failure, ECT was tried. Again, that only made things worse. Then came antipsychotics. The first one I took, Trilafon, was a nightmare. Kind of like what you said, Pam — I then had an inability to tell dreams from reality. The scary kind of hallucinations started, like seeing a gargoyle when I looked in the mirror. And the parade of multiple antipsychotics drifted ineffectually past the window of my consciousness. Finally, when I was given Zyprexa, I “awakened.” Would I have needed awakening if I had never started taking these medications in the first place? I had my doubts. But on Zyprexa, I could read again. I could tolerate movies. I could write creatively. But the weight gain that started with Lithium began to really pile on with Zyrpexa. My weight doubled within a few months. I had always been extremely weight and diet-conscious. With Zyprexa came mind-numbing sedation and a tremendous 24×7 appetite. So I was eating and sleeping, but I was also reading and writing.

    Talk about the horns of a dilemma — I could take the medication and regain my ability to think and create but be a slave to the fork, spoon and pillow, or I could stop taking medication and keep my appetite and weight within normal limits and be insane. What I’m wondering now is whether any of this would have been a problem if I had never taken the medications to begin with. I became much more insane after being medicated and stopping the medication. To my way of thinking, medication had stopped the positive symptoms but had made me especially prone to relapse every time I tried to ease back on it. And the hallucinations had never been much of a problem — not nearly the problem of weight gain and intellectual poverty. Zyprexa did at least give me back a portion of my mind. Medication giveth and medication taketh away; blessed be thy name pharmaceuticals.

    SInce then, I have tried just about ever atypical on the market, with the exception of Invega, hoping to find the “right” medicaiton. They were all promising at first, but each with an array of intolerable side effects. Anxiety. Hypoglygcemia. Hypothyroidism. Akathisia. Pruritis. Mania. Severe insomnia. And for a long time, I could return (somewhat relieved) to Zyprexa and what had become my standard of recovery — stabilization and the ability to think and sleep again.

    Now, however, I refuse to take the previous 40mg of Zyprexa. My psychiatrist seems to believe the higher the dose, the more effective the medication. I have weaned myself down to 2.5mg which is enough to keep me out of the hospital but apparently not enough to keep my appetite so revved up. It does not allow me to lose all this weight, no, but at least I am no longer gaining. I am writing again. And reading. The problem is, this dose of Zyprexa does not solve the problems of anxiety and insomnia, which are pure torture. So I take the minimum dose for several days, then double that for a couple of nights in order to sleep, then back again. I used to just stop taking the Zyprexa completely because the weight gain frustrated me so much. The stigma of mental illness is bad enough without the stigma of obesity. Schizophrenia is bad enough without metabolic syndrome or diabetes.

    The real kicker, to me, is that yes I was having problems before I ever started on the psychiatric medication rollercoaster. I had some psychosis, depression, hypomania. I heard voices once in a while. I had a roster of impossible people renting space in my head. But I lived a close-to-normal existence from all outward appearances. I could hold down a stressful job. I managed to keep a marriage together. I was winning regional poetry contests in my spare time. I had my own home. But it was not until I began taking all of these medications that it all went to hell. And now, from what I’ve read and what I have experienced, my body can no longer tolerate being without the medications. Life is worse off of them now than on them. I have to take Zyprexa or go back to the hospital. I have to take it or I may end up living on the streets. I have to take it or risk killing myself. My doctor says oh, but the medication has SAVED you from these horrors. But am I where I am today — on SSDI, unable to work, a slave to my fat-bound body — because of antipsychotics and antidepressants? Or am I able to be independent, sane, and creative again because of them. Or both? Somehow, something doesn’t seem right.

  3. I, too, have stopped taking prescribed medications many times, because the misery I experienced from the side effects was far worse than any slight benefit I may have gotten from the drug.

    As for all these psychiatric “labels” — they only seem to do more harm than good, don’t they? That has been my experience, too. Especially the dreaded “borderline.”

    There are no easy answers, at least none that I have found. But I’m still hoping and searching. Meanwhile, I just do the best I can one day at a time. Many days my best is pretty lousy, compared to what I wish I were doing.

    I once heard someone say that life isn’t fair because a fair is a place with cotton candy, clowns, a Ferris Wheel, and a Merry-Go-Round….

    Hugs & Kisses,
    Lynda

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