Schizophrenia Medications - My Experience with the Atypical Antipsychotics

Although the first time I ever took a neuroleptic antipsychotic was in 1971 at age 18, I was prescribed them regularly starting in 1978 until 1993. I have taken almost every one available and they were almost universally awful, mostly because of devastating side effects. If they were effective, it was difficult to know because of these side effects, which made me refuse to take any one of them for long.

When Clozaril came along, the first atypical antipsychotic drug, I was one of the first Medicaid patients in CT to be put on it. Alas, I have to admit that I am unable to evaluate its efficacy in my case, because I experienced once again such side effects that despite 3 or 4 serious trials on it, I was relieved when my white cell count dropped so low that I was forced to stop taking it. I know that other people said I "did better" on clozapine, but they'd said that about Haldol and Thorazine and Prolixin yada yada yada when I'd suffered the agonies of hell on those. So whatever they thought, that it was worth it for me to suffer such side effects, meant little to me in the end. They were not in my body, and it never seemed to matter to them ("them" being largely the psychiatrist and various mental health "officials" supervising me) that I was in exquisite pain on any of the drugs so long as I took them.

As a result, when they told me that it was worth the side effects to continue taking the clozapine, I finally told the doctor I was seeing to "go soak your head." At which point, she summarily dumped me! Fine, fine. That wasn't exactly copacetic, as they used to say, but I got another and finally I was able to stop taking the drug when agranulocytosis seemed imminent. Then it was back to Prolixin for a few years, which was bad, but frankly not as agonizing as the Clozaril had been.

But what side effects did I have? Well, it turns out that I would have those same side effects some years later on Seroquel: after taking the drug at night I would within a half hour have  unbearable feelings of impending doom, the sense that if I closed my eyes to sleep I would without a doubt die that very night. It sounds trivial but it was one of the most horrifying feelings I have ever had to deal with. Then I found I could not swallow my own saliva, which was copious and spilled out onto my pillow by the "pailful" -- when I did fall into that deathly sleep I was so terrorized by, I would wake with slimy sheets and pillowcase. Did I mention sedation all day long, and weight gain? No? Well, there were those as well. It isn't just Zyprexa that is guilty of causing obesity and diabetes. Long before I took Zyprexa I had already started to gain weight, and I believe that was because of taking Clozaril for so many trial runs for so many months.

But then, after waiting until 1996, Zyprexa, that miracle drug for me, that drug from hell as it turned out to be as well, came out and changed my life for good, and for ill. I loved it, and I still do. But I would never take it again. If you have not read about my journey with this medication scroll down to earlier posts and look for "Schizophrenia and My Conflict about Taking Medication" which tells the tale.

After Zyprexa came Seroquel, and then Risperdal which had all those side effects and then some, including sedation so extreme that a friend considered me nearly comatose. In fact, every time I agreed to another trial on it and I took it for longer than two weeks at any dose, even as little as a half milligram, I ended up catatonic. The last time led to a hospitalization so traumatic that was it for risperidone.

Have you guessed by now that I have tried most of the atypicals available in the U.S. if not all of them? I am now on Abilify and Geodon which I will tell you about at the end of this post, but first I need to give you the lowdown about how I did on 1) Saphris, 2) Fanapt and 3) Latuda.

Saphris was from the start one of the most deadening drugs I have ever taken. Yes, the voices were drugged up and deadened. But it seemed to exacerbate all possible negative symptoms I ever had. I simply had no drive to do a thing but watch television all day long, smoke and look out the window. I did nothing else, barely even bothered to eat. In fact, I am going to do something I rarely do here, which is to post a poem that I have not yet published, despite the fact that it might mean I cannot do so elsewhere in the future, because I wrote it about the experience of taking Saphris, and the dullness and negative symptoms it induced.

DISTEMPER

A new pill for distempered minds leaves me myself,

untempered. Not that being less prone to tantrums

is a bad thing. For instance, I no longer snap and seize

at the fluorescent shatterings of daily living.

But this placidity borders on clinical torpor

so that even daytime television

seems like a worthwhile invention,

as good a way to spend sixteen hours as any other.

I’m awake all day and all night, too conscious --

thinking, thinking, not bored, but not quite interested enough

to put my hands or mind to any enjoyable task

while a K2 of necessities goes undone:

dishes, laundry, cat litter—all insurmountable molehills.

The ancient cathode ray flickers and the talkies chatter on.

Deep in my chair, smoking away five years of sobriety,

my drugged eyes fix six hours on “America’s Top Model”

and then on a woman heavy with twins who smiles

on her "Nineteen Kids and Counting."

A dozen should-dos fog me into lumbering up.

and I aim myself towards too many goals to count on,

but quickly all recede into a cave of twilight.

Time for “Junkyard Wars” on channel 101.

I sit back down, light another cigarette

and press on the remote.

 
Fanapt? I scarcely recall why I did not like the drug, but I do know that I barely took it a week before i nixed it. I think I could tell it was making me eat too much, which was the kiss of death almost before I could see if it helped me . One of my biggest phobias now, after becoming obese on Zyprexa, is that I will never let that happen to me again. It was simply too hard to get the weight off again, and I will not repeat that struggle or go through what it took to do so. Not if I have any say in it, which I damn well intend to.


Then we have Latuda, of which I once sang praises. You should know that I have had second thoughts and changed my mind about this drug. Oh, it did stop the voices and such very quickly, but it too induced a kind of grayness to life, an indifference and colorlessness that was painful. I could do nothing, even if I wanted to. I felt like nothing interested me. The only difference between Latuda and Saphris was that on Latuda I understood what I was missing, I knew that I wanted to want more, whereas on Saphris I simply didn't feel like doing anything, and forgot that life could hold much more. The latter state was much worse, but luckily someone picked up on it, and the dangers it held, and I got off it before it became a pattern.


When I was in the hospital this past summer for 6 weeks I might have been ready for discharge earlier, had I been willing to take either Zyprexa or Latuda, but I refused, because I knew perfectly well that once discharged I would adamantly refuse to continue either drug,As I pointed out, what was the point of getting started on a drug only to cease taking it the minute I got out of the hospital? It made no sense, especially were I to leave below my baseline, with the assumption that thte drug, being administered on the outside, was what was going to help me recover from the on-going psychosis. It simply made no sense to get me started on a drug I would refuse to take. 


Luckily the attending doctor, a very nice older woman from Rumania, got the point and even agreed with it, so though the stay was rough, largely because we had to deal with a lot of my reaction to the trauma I had experienced at two other hospitals the previous year, I was able to stay on Geodon and Abiify without adding another drug I wouldn't continue taking.


Now, as to those drugs, the combination of A and G: I consider them to be my "output" drugs, compared to Zyprexa, which was an "intake" drug. On Zyprexa I take in and attend to everything: reading, learning, and also food. I gobble everything down and retain it. I learn a great deal and I also become obese. On Abilify and Geodon, I do a lot, get a lot of work done, for they are my "output" drugs. I can control my appetite and do not feel as driven to eat. On this combination I write and write like mad, and I do art like there is no tomorrow. In fact, sometimes I cannot let go of my pen, but must write until my hand hurts...But taking in is of less importance. In fact, though, I have to force myself to read or eat and to read a book becomes a chore of the first order. This not good, but I have had to make the choice and it has been acceptable to me. 


All my life I have not been productive, due to schizophrenia. I have been an unproductive, non-functioning citizen. Finally, I can produce art and writing, and I revel in it, even though due to the horrible financial strictures of Medicare,  Social Security and Medicaid, and my own needs for housing, medical coverage, I am unable to get off any of them. This forces me and most disabled people to remain poor, essentially non-productive. Maybe I produce, but uselessly as I cannot earn a living. So I produce ina vacuum. I produce,  but I give everything away. I donate my sculptures to good causes, not a bad thing, and I save my "flat" pieces until such a time as I may be able to sell them, or trade them for useful items I need for my art or apartment. What else can I do, since I cannot earn income? It is a terrible bind, once which President Obama wanted to repair, but will not be permitted to do,  due to the politics of our time.


So, here is where I am now. I take Abilify with Geodon to temper the over-activating effects, the temper and irritability Abilify alone tends to induce, plus Lamictal, a mood stabilizer that I frankly use only to control what I've been told are temporal lobe seizures in the form of olfactory hallucinations; Topomax to reduce the frequency of migraines; Ritalin and Xyrem to treat narcolepsy, the second to increase delta sleep in order to reduce the need for the first. And Zoloft, to which I suspect I am addicted and need less for major depression than because I cannot get off it without rebound depression and suicidality..


All in all, these seem to work fairly well, however. If I have relapses, mostly I have to live with them, and wait for them to burn themselves out, because I won't take any other meds to stop them, and because increasing any of these drugs only adds side effects without actually helping the psychosis.


If my readers have any further questions, feel free to comment and ask them in your comment. I will reply personally or in another post.




TTFN (tata or good bye for now)

Schizophrenia and My Conflict about Taking Medication

Okay, I admit it, I have had my conflicts surrounding 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) and 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, esp 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 were worse than the consequences of not taking the prescribed pills. 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 3 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 my narcoleptic tendency to drowse off whenever I sat down. 

Luckily my psychiatrist soon thereafter was also a sleep specialist; she had no problem treating this with the appropriate meds, 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, Geodon, and Lamictal, and I take all three 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. (Abilify, if anything, tends to cut my appetite.)

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 while I was cleaning my apartment regularly, I had 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. I wish I could say otherwise, but...

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, both treat the psychosis, but only the Zyprexa has any positive side effect in addition to that, whereas the Latuda only has the negative side effect of strait jacketing me in the process.

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!

I fear that I may have ended this discussion before I have really finished the thought, so to speak. I have to go to sleep now, and will be leaving for DC tomorrow, without my computer. But I will be back in five days and hope to catch up with this then. TTFN