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.
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)