I just was released from the Yale New Haven Psychiatric Hospital and i regret to say that it was far from the kind and gentle “soft place to land” in a crisis that i remembered. Partly this was my fault, for wanting to not take the meds that i already knew would be forced on me, quite despite Dr Milstein’s assurance to my outside psychiatrist that he would never force meds or Zyprexa on me as “it doesnt work.”
No, I did not know that meds would be FORCED on me…Not until Robert Ostroff MD took over my care and made it clear he did not give a damn how I felt. He decided to punish me with massive doses of Haldol when I refused Zyprexa, and I know he is of an age to understand what he was doing. One, he is a Yale Physician, so he knew of the hearings in Congress back in the 70s where the Russian dissidents were complaining of TORTURE by Haldol injection, and where Congress actually decreed that the drug was in fact an instrument of torture when use on Russian citizens…He KNEW what he was doing to me, PUNISHING me. He just had the power to do it and could. So he did. He NEVER saw me to talk to me, NOT once. No, he just oversaw torture, and while Robert Milstein, MD (basically a good guy, if deluded into believing that psych meds are good for people) was supposedly on vacation, he too was available and did nothing to stop this. For that I do not forgive him…Or, I forgive him, but will never trust him to treat me again. No, I will never go back there.
In fact, I’m here to say that no hospital psychiatrist can be trusted when they promise not to force you to take drugs…that is what they are paid to do and are largely paid to believe in. It did me little good to try NOT to sound like i was ranting and raving esp when attempting to persuade either doctor or social worker in hospital to read Robert Whitaker’s ANATOMY OF AN EPIDEMIC or even borrow my copy of his MAD IN AMERICA, both books i find life and mind changing in a major way, even a year after i started reading them for the first time.
I dunno what to do though, in terms of meds. I function fine in between times in hospital, mostly. And so are the Abilify and Geodon helping or simply not Not preventing a relapse when it comes? There is reason to think that Geodon may be damaging my heart, slowly but surely. My EKG said something Dr Milstein refused to explain about a “probable infarct” but was that me, my heart or some general info on the EKG sheet? I wasnt allowed to look at it long enough and NO ONE answered my questions about it. Probably fearing i would stop taking the offending medication, which was true and i did anyway so they ought to have talked to me honestly.
But honesty is not a general policy in brutal psychiatric units where they restrain you, holding you down and bruise you to give you injections of Stat meds that are really ordered only because someone with the power to order them got angry and resentful…
I cannot sugarcoat my own demeanor during this stay. I was not a pleasant patient to anyone most of the time. And at the worst times i was likely considered horrendous. I screamed daily at the top of my lungs, i resisted their treatments physically and violently, i defecated on the floor of my room and even put handsful of shit across the walls, and apparently i even threw a cup of coffee at someone…though i do not remember doing this and the report may have been distorted by second hand information about me, coming back to me. But i was a horrible patient and one aide even called me, every chance he got, a dog, a pig, a swine….in covert secret ways, audible and openly but when no one else was around to hear him except the other aide who would back up his story that it never happened.
On the other hand, there were a few kind and compassionate understanding people who did not throw my smearing shit in my face or even take my calling them horrible names (bestowed on my vocabulary by a former friend who called me them) personally.
I need to enlist just such people for private duty help for the next relapse, if it should happen…but how? Ads on hospital cafeteria walls? How to vet the sign-uppers, so i do not get attendants that will abuse me in my own home? How to trust, and when, what they or references tell me? So many references are positive and therefore lies that they are tantamount to useless unless secretly negative!
Decisions decisions….must be made well before anyone is needed to help me at home….one to one, constant observation-plus!
Well, i am still recuperating, and worried about deep hip pain though seemingly improving is scary, reminding me of the avascular necrosis bout i had about five years ago. Was it meds induced? possibly because it healed magically in a month post radiographic dx, with a stay in psych hospital and change in those meds. But if i dont withdraw abruptly from, say, topamax or geodon, but slowly, will the hip pain continue, or evolve into worse than just, say, pain, but real bone destruction ans disability? Can i take any risks at all at age 60 with drugs that have no proven track record research wise, and seem to help me but may only being doing harm?
WAGblog: Dum Spiro Spero 
Want to come live in the small town of wethersfieldoutside of hartford? Thats where i live… I keep thinking if we all got together and made a critical mass somewhere we might make a difference. Or simply feel better being amongst people like ourselves…i know no one like me anymore except via the internet. And we are all so scattered,. If only we all lived in wethersfield we could held each other get through, and maybe better than that too.
Where are you now? Are you in a big city? I apologize if i shd know but like you i have had memory obliterating ECT and also topiramate does another number on me presently…
Have you real interest in moving? Where would you like to live? I have so many good friends in this area of ct it is hard to see moving, but then again, north hampton mass offers a lot of alternatives…
Just musing…
I am scared of my geodon…heart toxicity on it, but getting off it i might not be as creative and artistic…since i credit abilify and geodon with my artistic awakening, frankly…
Yours,
Pam
Pamela Spiro Wagner: Artist, poet, author of Divided Minds: Twin Sisters and their Journey through Schizophrenia (St Martins Press, 2005) and We Mad Climb Shaky Ladders (CavanKerry Press, 2009). Available for readings, speaking on mental health issues, and sales/donations of her art. Please contact for details by email or skype phone: 860-263-0280 Check out http://pamelaspirowagner.com for links to Wagner’s art and poetry. Her art site for now is https://pamwagg.see.me
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When I started taking Zyprexa, I was willing to do anything in order to get well. For me, getting well meant ending the depression and the voices. What happened on Zyprexa (without stimulants) was that same “awakening” you are talking about. Suddenly I found myself in a technicolor world whereas before it had been gray. I could read again after the Zyprexa took effect. Like you. For a while, I thought it was great. Then I couldn’t stand the obesity anymore. I had had anorexia and bulimia for years up to that point, so I understand what you are saying.
And I honestly think if Zyprexa perfected everything in my whole life, yet sustained my obesity, I would have trouble taking it. So for years, I have limped along taking it just enough to stay sane, but maintaining a weight of 180. Which I hate. If I took Zyprexa regularly, every day, I don’t doubt that I’d be well over 300 lbs by now. Maybe more. Why can’t they fix that part of it?
Gradually, over the years, Zyprexa has become my go-to drug when others like Abilify, Seroquel, Geodon, Saphris, and Latuda made me feel even worse. The akithesia (sp?) gets to me on these other meds. And now, that “awakening” is old hat, I guess. I want more and better. I have color in my world, I can read, I can think fairly well. But I can’t work. I can’t remember how to do work tasks even after they show me a half dozen times. Or I learn how and then suddenly forget. My therapist says it is traumatic brain injury from ETC. Which I wouldn’t doubt. Most of my current problems date from when I had that.
I feel so depressed. If I take Zyprexa regularly, I think it helps the depression because I get good quality sleep every night. And I’m not freaking out over the feeling my brain is disintegrating. Everyone says, “Take the Zyprexa, dammit.” But if I do, I am left flat and dull. Able to read, yes. Able to see movies again, yes. But the world isn’t nearly as interesting. And I don’t feel I am as interesting, either. But I’m afraid I’m going to end it all some day out of sheer frustration with my family. Are they worth it? no. I would give anything to get away from them and go live in a small town somewhere. So why don’t I? Good question.
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Oh lordy lordy, donna, you raise some mighty questions, because i have not had the bad responses to so-called antipsychotic meds that you have. Physically yes, they have done a terrible number on me, but mentally, i dunno. On zyprexa, i felt aliver than i ever had been, though the extreme sedating qualities of the drug and my narcolepsy had to at the same time be attentuated by the use of Ritalin (something i heard was rather common on high doses of zyprexa, as contradictory a drug as that would seem to be). In any event, i have taken ritalin nearly all my adult life, so you could consider it a constant not a variable, due to the painfully unpredictable drowsiness of narcolepsy. But with prolixin and ritalin i just felt dull and strait jacketed, then i was switched to zyprexa and the wonderful technicolor of life in all its glory seemed to be given me, in full dosage. I could read and learn as never before, as i could not even do in high school. I felt like a “child prodigy come back to life” and suddenly worthy of the more than ” genius IQ ” i tOo had been tested at, but never before felt able to access. On zyprexa, learning and thinking were greased lightning! I never read or learned so much as in the 4 years i took it steadily! But physically and hence psychologically i was miserable being obese, my worst nightmare! Nothing worse could have happened to someone with a long history of anorexia, after all….
So i started fighting taking it, and switching around from drug to drug and cocktail to cocktail, with hosptal after hospital stay resulting, each one more brutal than the last….i so wanted to be as alive and well as i thought i felt on Zyprexa, but without the weight gain and all its consequences. I remember each time i went back on the the zyprexa i would start calming down and ease back into lesrning snd resding by zooming in on PBS movies and shows and i would suddenly and deliciously demonstrate and renewed appetite for. All pf a sudden i would find myself fascinated by subjects that i had no idea interested me…,and the entire show would absorb me through an entire series. I dunno. I just found that i was able for instance to read the New York Times on Zyorexa, whereas lways before then i had struggled to maintain concentration…
Now, here is the huge question: as i said, ritalin was a constant accompaniment to my meds, due to Narcolepsy, which was a disorder variously believed in and acknowledged as real and variously dismissed as nonsense or worse. I wont go into the damage all the doubt and dismissiveness caused me ever since my first diagnosis in 1979, but i will say that psychologically, the damage all the doubters did was enormous. They concluded, almost invariably, that i 1) did not have narcolepsy 2) was faking the symptoms in order to acquire the drug primarily used to treat it, Ritalin. Ritalin was, in this view, a “feel good” drug that i had to be addicted to and wanted illegally or illicitly to acquire. It could never simply be that i suffered from uncontrollable sleepiness and had in fact discovered just as i said discovered serendipitously the appropriate drug for my condition purely by chance.
Whatever is the case, i did in fact discover both that my sleepiness was abnormal and that there was a drug that treated it in 1978, and since then have only in rare instances been off it for long. And only reluctantly and suffering when i did so both withdrawal side effects, PERHAPS, or simply the effects of being taken off a drug that gave me a normal amount of alertness and hence the ability to reasonably judge whether or not i was interested in something, rather than assessing my state to be one od chronic boredom because everything led me to fall asleep. That, indeed, had been my depressing self -assessment, prior to starting Ritalin: I was simply an empty shell of a human being with no inner resources because everything i did so bored me, apparently, that i could not stay awake.
Donna, are you still with me? This is where it gets sticky and tricky… Because for years i did not trust even my Ritalin “self” and thought my bored self was and had to be fhe real one, because unmedicated…but why? I was not “bored” really, only too sleepy to attend to anything, due to what presumably was narcolepsy….i was not taking any other drugs at the time, no major tranquilizers or anti anxiety agents etc, so why was i so under-alert??? Anyhow, did i have to accept that my real self was the bored self and judge myself as unacceptable and having, as John Berryman’s poem says, “no inner resources because i am heavy bored…” Or was it actually just as correct, and fairer and kinder (and should i have not been a bit kinder?) to tell myself that No, Pam, actually, the Real You is the avid, intperested you who woke up from her years if boredom and semi-slumber to realize that studying is fun and interesting (in med school on Ritalin) and that sleepinesns had interfered with a great deal of self discovery prior to that. In addition, you were never a narcolepsy faker or a ritalin addict, not even when they made you doubt reality and the truth to the point where you could not tell whether you were or not…
Donna, i cannot tell you nor would i have any idea how to figure it out, what to do. All i can do is place my own dilemma alongside yours. Mine is this: was Zyprexa the miracle drug it seemed, or only the additional dose of ritalin’s feel good “dopamine” that provided the jolt i needed? As i said. I was only ritalin and prolixin, and ritalin and thorazine etc and never felt the intellectual awakening i felt as on Zyprexa. But Dr O was a sleep specialist and was very “brave” around stimulants and schizophrenia: when i took 40mg zyprexa, she likewise made sure that i was not hampered by sedation overly….yes, i had trouble waking in the morning, and slept and long time at night. But she did make certain that my “on hours” were quality times of alertness and not halfway hazy. If she has not been dually specialized in sleep and psychiatry, i doubt i would have been as well treated in that sense.
But it leads me to inquire again: was it truly the zyprexa that was the awakening, or the stimulants?
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Pam, can you give me your thoughts on this — I struggle with taking medication, too. Zyprexa has made my life liveable at times and made it hell at other times. If I take it, I am able to sleep more restfully, I don’t have the violent suicidal and homicidal ideation, and and I don’t feel as jittery and anxious. If I take it at a low enough dose, it isn’t the chemical straight jacket that it becomes at higher doses (I used to take 40mg, so I know about that.) But it dulls my mind. Like my IQ has suddenly dropped 20 points. I can’t remember what I’ve read or watched. It leaves me foggy-headed almost in a dissociative way. I won’t even go into the weight problem, which is severe.
For some time now, I have only taken an extremely small dose when I absolutely had to have it to keep from returning to the hospital. I knew they would medicate me there, anyway, so what’s the use? I feel like my “old self” (the good parts) has returned. My mind is clear and sharp. My sense of humor is back and that thrills me. But here’s the problem: I feel the bad stuff, i.e., symptoms, leaking in around the edges again. That panicky flying apart mental disintegration awareness that wakes me up in the middle of the night. I’m starting to have nightmares again about being chased by tornadoes, being hit by lightning, being electrocuted…that sort of thing. I’m afraid the voices and demonic presence will return, too.
Most people — those who have not experienced schizophrenia and Zyprexa and psychiatric hospitalization — would be astonished at the hubris of not taking an antipsychotic when someone has a “demonstrated need” for it. “Why wouldn’t you WANT to take it?” I’ve heard that question dozens of times. I don’t think there is any way they can understand without having been there.
For me, it was and is still a question of who I am. The fundamental me. I don’t necessarily want to be a different me or a better me. My goals are to be able to live independently and have the presence of mind to enjoy reading, writing, watching TV, and have the freedom to choose whether or not I will medicate. I do all of those things now, even with my erratic med compliance. Sometimes I want more, yes. And it is tempting to think that if I take the medications, the whole world will light up and the array of choices and opportunities will be limitless. After all, this is what I have been led to believe by mental health professionals. But doesn’t everyone in this world want more out of life? Don’t most people say they feel unfulfilled, no matter what they are doing? My brother is always trying to “find” himself. He travels all over the world and still can’t find himself. He reads voraciously and can’t find himself there, either. He says he has a fulfilling marriage and just retired from a successful career. He has immersed himself in volunteer work to try to find meaning. He has returned to the church. But he is still drowning in anxiety, bulimia, depression, and thoughts of suicide. If he took an antipsychotic would things change for the better? No. Of course not. He would simply be medicated into submission and a false sense that it is better to basically not care what happens.
Zyprexa does that to me. Makes me submissive. Makes me feel brow-beaten. Slightly submerged. Is that what my medical team would prefer for themselves? Of course not. Would I rather be screaming and smearing shit on the walls? Of course not. Isn’t there some way to be the Real Me? Would a medicated Me be the Real Me? I don’t think so. Is an unmedicated Me the Real Me? I don’t think so, but it does feel closer to the truth of who I really am.
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I won’t take Abilify. It was poison for me.
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