Thursday, October 20, 2011

Jill Bolte Taylor's stroke of insight | Video on - a must see for everyone!

This is an amazing video that I may have posted here before or else at Wagblog at some point. However I think it has so many terrific things to say about the brain and what a person can do despite adversity, that I wanted to post it again. Also it simply astounds me each time I watch it how clearly Ms Taylor makes the case for letting the left brain rest and the right brain take over for a while. But it is difficult for me to make the case better than she does in the brief 17 minutes or so that this TED Talks video lasts. Do watch it. It could change your life. I mean it.

Jill Bolte Taylor's stroke of insight | Video on

Tuesday, October 4, 2011

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.


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)

Monday, June 20, 2011

Meaning and Madness: Is Schizophrenia Real?

 Rossa F (not real name) asks in the comment on my previous post some fantastic questions, which just happen to be of particular interest to me at the moment. The link to the fascinating interview with Gail Hornstein below is an introduction to other ways of thinking about the subject of madness-not-as-a-mental-illness or at least not-as-a-chemical-imbalance. That last has always puzzled me: how on earth could anyone tell me that I suffered from a "chemical imbalance" when 1) they do not even know what chemicals are actually out of balance, if they are, in "schizophrenia," and 2) they do not really know what a truly normal level is in the first place. 

I have long argued that "schizophrenia" from all my observations, close and rather not so, can hardly be called an illness. I believe it can only be termed a syndrome, as in a collection of similar, by far not, identical symptoms, but not a single, or singular illness with specific core signs and symptoms. The very fact that out of dozens of medications it remains a set of symptoms that is treated largely hit or miss, and by trial and error, a med that is a miracle for one person, being useless for another. Moreover, I have known dozens of people, many of them friends, who have been dx'd with this "illness" and every single of one of them was singular, "uniquely unique" and shared almost no symptom or trait or characteristic of the illness with anyone else. 

Oh, sure, we may have been dx'd paranoid, some of us, but none was paranoid in the same way. One guy who believed he wrote a certain famous rock groups' music (a delusion) was certain that people were out to steal his music manuscripts, even though these looked to us like nonsense written on scraps of scratch paper. Not to him, to him they were pure gold and he was terrified...The "paranoid" delusion of another person with this same illness schizophrenia had to do with something entirely different and took an entirely different form:  Witches were out to get him and he had to confuse them so they could not get into his mouth...The fact that he could not speak without confusing everyone, that he scarcely said a sentence that made sense, makes all too much sense now.

But the fact that all of us were stuck with the same diagnosis struck me as rather bizarre even then, since logically we ought to have had more in common than the fact that we took the same class of medications: anti-psychotic drugs which we more or less hated in common, and which many to most of us either cheeked or refused outright. But I could discern very little that bound us together, beyond the label and the unpleasant, and undesirable class of meds they -- the medical establishment -- plied us with.

I want to continue this later, but I need to finish a speech that I am giving tomorrow evening at a meeting at the State Hospital in this state. So I need to leave this unfinished for now. I hope you get a chance to listen to the interview, and will return here to read and maybe contribute a comment to the discussion.

Gail Hornstein Interview on Madness and Meaning

Saturday, June 18, 2011

Interview with Dr Manny

My twin sister and I did this interview for last year. While I generally consider Fox network as the "enemy," in this case I must tell you that the interviewer, Jessica Mulvihill, was one of the most prepared, and the interview itself one of the most interesting for me and thoughtful that I have undergone since the books came out. Also, while the interview is a little over a year old, the information is not really that dated, though some of the facts are inaccurate. For instance, DIVIDED MINDS is a memoir, not an "autobiographical novel," and I was not asked to leave medical school, as Dr Manny relates. Instead, I was hospitalized. When discharged  6 weeks later, I was given a leave of absence, but promised that I could return after a year off, if I had medical, which is to say, psychiatric "clearance," so to speak.

Interview on the Dr Manny Show

I want to add something to this post, which came to me after watching the interview another time. Although the incident alluded to again , the one about Kennedy's assassination being the start of my schizophrenia, is mentioned in my poetry book as well as in Divided Minds, my new psychiatrist has a take on it that I found immensely -- I dunno -- reassuring, and somehow right on the money. Dr C suggested, and it feels right to me, that although I heard voices and deeply felt responsible for JFK's death, highly sensitive pre-adolescent children can be impressionable and emotional, and often they may get so involved in a tragic event such the assassination that rocked the entire country, that they may indeed begin to blame themselves. She feels that instead of the incident indicating that I was in the prodrome of schizophrenia, that it was instead an extreme emotional state, but more or less "normal" for a sensitive kid going through a terrible time.

I cannot tell you what relief this take on the event gives me. Why, I do not know, but I feel better being able to see my childhood through this other lens. To be able to say that indeed the illness maybe did start later, rather than to have to try to figure out why there was such a long break between 6th grade's psychotic episode and 10th and 11th grade and certainly the breakdown in college. To see the Kennedy episode as something altogether different, and not prodromal at all, puts another spin on things. It is not that I think that childhood mental illness is something to be ashamed of, only that I did well in those days in other ways, though not in all ways, so to date schizophrenia from age 11 always felt a bit shaky, compared to later years when my ability to cope was so diminished.

Thursday, June 9, 2011

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

Thursday, May 26, 2011

Recovery, recovery, recovery

Recovery, recovery, recovery, what a whale of a word. And by whale I mean a big whale, a white whale, a veritable Moby Dick of an obsession, only it is one that it seems no one is able to define in any quantifiable way. Not at least so that makes sense to me. "Recovery is a process." You have heard that one, no doubt. I have used it in talks any number of times myself. Well and good, but so is digestion and so is having a heart attack, and in the first case you let it go on about its business in the background, whereas in the second, you definitely want to interrupt the process as soon as possible. So, okay, recovery is a process, as I blithely voice to my audiences, but what do I in fact mean by that?

Well, the first thing I want to say is that I would date my "recovery" process from, um, 1996 when I first started taking Zyprexa and experienced an awakening of the nearly proverbial kind (in a manner of speaking). "Awakening" of the kind first described by those taking Clozaril/clozapine. "Awakening" tantamount to those seen in the movie starring Robin Williams, though of course nothing really like those, since that illness was encephalitis lethargica and the drug was L-dopa. I felt that life had somehow suddenly "come to life" that the lights had come on in my brain. I had never felt anything like it before. One day I was dull and listless and unable to do more than read a poem on one page. Then next day, there I was, reading the entire New York Times, and wanting more. I could not believe how hungry I was to read and learn. And how much I could suddenly do so.

But would I really date my recovery from then? Hmm, no actually not really. After a few years of marginal, but real stability in the sense that I remained "hospital-free" I experienced a major psychotic break at the cusp of the new millennium, was hospitalized for three months in almost constant psychosis and for the next four and a half years spent nearly half of every year in the hospital.

And it was not only that I was hospitalized, but that in every hospital I was sent to I was so out of control that I was placed in 4-point restraints time and again, injected, secluded, and subject to any manner of brutality by hospital staff who did not understand or want to take the time to treat me. What they saw as willful "misbehavior" was always, always, always paranoia so profound that I dared not even state what I believed, lest it end worse for me. The fact is, I was controlled by a delusion that said, if a person is in your house, planning to kill you but acts as if he is a friend, then the last thing you should do is let him know that YOU know of his intentions: once he knows you know, the gig is up and there will be no escape...I do not know if you can follow my reasoning here, but in my paranoia I could not even speak to the staff at those hospitals of my fear because if I did, they would drop all their pretenses of being merely hospital staff...

Be that as it may (I have written many times of my brutal treatment in hospitals and will post them here in the days to come, for those who have not seen them at Wagblog), no, I would not date my recovery until about 2005, coinciding with the publication of the book I co-authored with my twin sister, DIVIDED MINDS: Twin Sisters and their Journey Through Schizophrenia.

Somehow, around that time -- I had been off the Zyprexa for about a year and a half, and on Abilify and Geodon, miracle drugs in their own rights, but not the same as Zyprexa, just without the same devastating weight gain and sedation -- I managed a self-transformation, physically at least, to such an extent that in this building where I had lived for 10 years at the time, and where many people know one another by sight at least, I began getting asked such things as, "When did you move in?" Or, "Are you a newcomer?"

So I looked different, and I was on a book tour and learning new things by the minute -- how to travel and do public speaking and eat in hotels and so forth...And it was heady rather than frightening for the most part, thought of course it was exhausting and that brought its own dangers. But for 6 months or more of the book engagements I did wonderfully.

Nevertheless, even after the "acute" book tour was over, the hospitalizations never ended. Neither did the "out of control" episodes, or I regret to say, the brutality, not until the last stay in Dec/January at a hospital in eastern Connecticut, where they have decided to eschew violence as a policy.

Even so, I would never not say I was in recovery. Of course I am, despite the hospitalizations and repeated bouts of psychosis! So what is this "thing" recovery anyway? And if it is a process, what is the end result?

Usually when anyone else but someone with a psychiatric diagnosis speaks of recovery they mean, full-out cure. Let's not kid ourselves. When you recover from pneumonia, you get better, you do not have pneumonia any longer. When you recover from the flu, you are cured. When you recover from a broken leg, ditto. Yes, there may be residual damage, if you have a heart attack say, or pneumonia, but you do not still have the process itself going on, or you would not call yourself recovered. Rarely do people say that they are chronically IN recovery from anything but either a psychiatric illness or poorly controlled substance usage. But man, do we! The problem with this whale is that like Moby Dick it can lead you out to sea, capsize your boat and abandon you, floundering. What use it is to say, you are in recovery, if you remain miserable, despite all the medications stabilizing you so you are not "in the hospital" or "utilizing resources"?

One of the saddest things about schizophrenia is how little we are satisfied with, how small our lives can become without our even noticing it. Back in the 1980s and early 90s, when I was on Prolixin, I simply had no idea that my life would or even could expand so, that it could take in so much more than the four walls of my smoky room, and the coffee and cigarettes that I occupied my day with. Still, even then, I wrote an "first person article for the Schizophrenia Bulletin relating how much happier I was being on Prolixin than "before" and how much fuller my life was, how much more fulfilling etc. I had no idea how little I was living, because i had nothing to compare it to. Literally.

So what is recovery? Oh, gag me with a spoon! I hate that word. It is meaningless, since clearly I have not recovered from any illness, not in the sense that I 1) do not need medication 2) do not need the hospital from time to time 3) do not need a doctor's care frequently. So I am going to throw it away with the bathwater and say that I do not give a ssastar (read it backwards) about recovery, in or out, only that on Abilify and Geodon, and Latuda during crises, as well as several other medications for stability as well, I can do art, write and feel reasonably well much of the time.

But the important thing is that I am productive and do not feel strait-jacketed either by illness or by medication or by others interfering and telling me that I should or should not do or take or be this or that. If nothing else, the best thing these days, aside from having discovered that I can do art (which I took up for the very first time in December 2007) is finding that I have a little more confidence in myself to say to people, I am okay, and I will do these things my way because it is my life not yours and I know how I feel better than you do.

Friday, May 20, 2011

Latuda: Brief Personal Review

Note: Please check out my other later medication posts as my feelings about Latuda have changed...

I have linked to the official Latuda site above. I cannot vouch for more information than what was provided me there and in the original package insert.

Two weeks ago I had a psychotic break, despite taking both Abilify and Geodon for schizophrenia and Lamictal for mood symptoms.

To avoid a hospitalization, my doctor and I usually add Zyprexa, but I refused it this time, hating the rapid weight gain and overwhelming sedation, though it is otherwise a wonderful drug for me. This time, though somewhat dubious about being a "guinea pig," I agreed to try Latuda. Previously I had tried both Fanapt and Saphris with disastrous results. The latter in particular reduced me to complete anhedonia and apathy. I did nothing at all but sit in a chair and smoke, which was even worse than before, when at least I recognized that things were not right, that I did love to do art and writing, even though I could not do them at the time.

So on Friday, after an emergency appointment, I went home with a prescription for 40mg Latuda, which was upped to 80mg the next day.

Well, within about 4-5 days the voices screaming at me were gone, my thoughts were much clearer, my energy higher, my mood brighter. It seems impossible, but Latuda might be the medication I have long been looking for: Zyprexa-without-adverse-side-effects, which is to say, no weight gain and no extreme sedation.

Moreover, I wake in the morning eager to rise and meet whatever the day brings. To me, as an artist, poet and author this is so important. I haven't felt so much better or as hopeful in a very long while.

I will say that the one huge benefit of Zyprexa, my first real miracle drug, my "awakening drug" so to speak, was that I was able to read, to concentrate and think in a way that nothing has ever matched, no, not even Latuda. And though I miss this even now, I will have to wait for the day when the perfect drug comes out to permit all my cognitive capacities to function, not just some at a time under the influence of one drug or another. Until then, I prefer doing writing and art, under the influence of what I call the "output drugs" of Abilify and Geodon, (and Latuda) to the input drug of Zyprexa (on which I feed both on books and on food).

Both Abilify and Latuda although they do not help me read, do keep my mind alert and alive, allowing me to be creative, not drugged up. They are as well more than weight neutral, and in fact help me lose the Zyprexa-induced poundage. The one problem with Abilify is that at first it made me extremely irritable, even angry, until we combined it with Geodon. Now I never take the one without the other. Latuda when added to the mix, seems not to cause any additional problem, it just quickly alleviated the psychosis, which the other 2 meds did not cover.

I wanted to report these things here because it is so important for people taking anti-psychotic drugs, many with terrible side effects, to know that there may be another drug out there that might work for them. There is never a guarantee as we all know. Those that work for a certain person, might wreak havoc for another. Some swear for instance by Risperdal, and it only and consistently puts me into complete catatonia. Others hate Zyprexa and would never call anything about it miracle-working...

If anyone reading this has had experience with any of the drugs mentioned in this post and wishes to comment, I would be interested to hear from you.