THE BITTEREST PILLS ARE ANTI-PSYCHOTIC DRUGs but if they work…

FOur Different Atypical Antipsychotic drugs
 FOur Different Atypical Antipsychotic drugs
and they really work for you, then don’t listen to me, keep taking them and the more power to you.

Do you work at a job and earn a living while you take anti-psychotic drugs? Do you support a family or take care of one while your wage-earner partner can keep her or his job without worrying about your sanity? Good, then the “anti-psychotic” pills you take (or I’ll add in for good measure, god help us all, the “anti-depressant” pills) are doing what we were always told they were supposed to do. Or if you don’t work or care for a family, if not, do you at least live a fulfilling single’s life, with good capable friends and family and a worthwhile occupying activity that keeps your mind free of craziness and despondency the preponderance of the time? Terrific!Then those pills, whether they be antipsychotic or anti-depressant pills actually function and you are one lucky dude or chick. I say to you, whoever you are, All Cheers and GO FOR IT! Please do not worry about anything further I say in this or any other blog post. Whatever I write from here on in, whatever I say that you do not agree with, IT IS NOT INTENDED FOR YOU. Why? Because by your report, YOUR PILLS WORK and they do a bloody good job of it. So who’s to tell you to change anything? You have no complaints and aside from the possibility that your brain might sustain a little shrinkage, if  research about such things proves correct, you have nothing to worry about. In truth, most aging brains shrink and sustain bits of damage along the way. Lots of things can happen…most of them not drug related at all. One simply cannot worry about a “what if” future, when the present is so bright.

So I repeat, IF you happen to be one of those lucky ones I have described and actually have no complaints, IF, better than that, if you find that your anti-psychotic drug or anti-depressant pills work terrifically well, you have had no relapses, suffer no terrible trade-offs in terms of side effects, then stop reading this blog post right this minute. Why? Because I have nothing to offer you and nothing to say to you. Okay? You don’t need me, and you won’t want to hear what I am going to say to the others of us out there whose experience has been somewhat to radically different.

But this is a SHOUT OUT to you, there, who don’t like your drugs and don’t want to take them. Or find them minimally helpful, or wonder frankly whether they really do any of what the docs tell you they do,  forewarned is forearmed…This post is going to be about the charade of anti-psychotic drugs, for the most part, about the fact that they do not in fact function in the anti-schizophrenia fashion that you have been told.  (I likely won’t have the time or energy at this point, being on AP drugs myself, to get into the appalling farce of what are called anti-depressants…You could turn to MAD IN AMERICA by Robert Whitaker for a take on those — just check out his chapter on Prozac for a taste…) It isn’t that AP drugs do nothing at all. They do attack the brain’s neurotransmitter levels, in some fashion or another. And not just the vaunted dopamine and or serotonin levels either. No, most atypical antipsychotic drugs have effects on histamine, glutamine, noradrenaline and acetylcholine and likely a whole host of other brain chemicals we haven’t even scratched the surface of, in the sense of knowing their function in the brain, or in any part of the brain for that matter.

Do you know, did you know, that the Dopamine Hypothesis, the fundmental reason why there are antipsychotic drugs out there now in so many burgeoning numbers was always bogus? It never held water, ever. There was NEVER any reason to believe that dopamine caused schizophrenia, or that a dyspfucntional level of dopamine lay behind the majority of schizophrenic symptoms. It was a bold-faced and bald-pated lie, that’s because it is as old as the hills and as tiring. You don’t have schizophrenia the way one has diabetes, because you have a chemical imbalance in your neurotrnamitters that these neat little AP drugs resolve and rebalance. Sorry, folks, but that has been baloney ever since we all started developing parkinsonism and KNEW, just KNEW that something was terribly wrong with these miracle drugs that made us feel so terrible.

Did you know that it used to be the criteria for a true neuroleptic, the only way they knew they had a functioning adequate drug, was because it successfully induced parkinsonism in patients. That is, if it induced adequate BRAIN DAMAGE, then they knew it would “work” against schizophrenia. Because the theory was, both in ECT and insulin coma,  as it was in early AP drugs like Thorazine and Haldol that you had to induce brain damage to get a therapeutic effect in the illness. Crazy no? No, not at all, not when you stood to make ZILLIONS and Gazilliions of dollars on these drugs. Not only could you treat a hospialized crazy person with these drugs, and make them “better” and push them out of the hospital, but you could set up a plan for future care, AFTER CARE, that specified that JUST like diabetes, a person had to keep taking these drugs. You never just recovered from an illness like schizophrenia, no. The drugs were miracles yes, but not like antibiotics, They never cured you. they just were a treatment that you had to keep taking. The Gift that keeps on giving…at least for the Pharmaceutical companies who dreamed up the protocol. If they could get a person onto the AP drugs, once, and mandate legally or via a persuasive mental health system that the patient stay on them for life, well then, what a system, and what a money maker!

Oh my eye! What a load of hog wash. All they ever did was dream up neuroleptic (“brain seizing”) drugs that physically subdued people and made them more amenable to nursing. So the hospital nurses could be more nursey nursey and kinder, and more kindly disposed to patients who were now drooling and dulled and seemed much genuinely sick, and the patients could be seen as more ill and less hostile and unpleasant to be around, less difficult to treat qua patients..

But it was a strange transformation, because the more sick the patients were made by taking these neuroleptic drugs, the less they were treated like the troubled and suffering PEOPLE they were to begin with. Once a patient, they assumed that role, and the whole cycle began and has never stopped to this day. “Schizophrenia is an illness just like diabetes.” That was the canard I was told in 1980 — we are still being handed the same disgusting lie! — when I was first officially diagnosed with the condition, or told the name to my face at any rate. “You’ll never recover, and you will likely have relapses, but you won’t be a back wards patient if you take these pills like a good girl, and do as I tell you. No schizophrenia isn’t a death sentence these days but it IS a life sentence…” So what did I do? I swallowed my 500mg of Melleril, yes i did, and I told the doctor I was feeling much better, yes I did. Because frankly I didn’t know how I felt and I felt OBLIGED to tell the doctor what he wanted to hear. How else was I going to get out of the hospital and get off those horrible pills that made me put on 20 pounds in three weeks and made me feel so dull and sluggish and tired all the time? Besides, how could I possibly, in those conditions, KNOW how I felt, when the nurses themsevlves colluded to tell me how much better I looked and was doing? I knew I couldn’t read or think for myself any longer. But they told me that that was my negative symptoms and had nothing to do with the drugs. It was a problem I would have to come to terms with by talking with a therapist…which was a good thing, that they suggested I see a therapist. Back in those days, it was often frowned upon that ANYONE with schizophrenia actually do any talking to anyone at all. After all, if you talked about yourself or your illness, you might upset yourself or the whole applecart…You might actually go crazy again, you were that UNSTABLE! No talk therapy was usually frowned upon for “schizophrenics.” It was seen as not good for them, and destabilizing. What we needed was daily meds and mouth checks and maybe day treatment with a hours job to do each day, like capping test tubes for the lab to keep us busy. Lucky was he or she who could function as a bus boy or table setter. Most of us barely made it to day treatment on time, before sacking out on a couch somewhere for a long snooze to let the morning’s dose of thorazine 1000mg or Melleril 800mg wear off a little before coffee hour or lunch time.

Some of us actually turned blue on high doses of Chlorpromazine, and she eventually died, at the age of 28. There was a lot of relapses and some suicides, but NO ONE actually went out and got a job and quit the hospital and got better. No, because the whole damned system was set up in such a way that once you were set up on anti-psychotic drugs, with a diagnosis of schizophrenia, you were put on social security disability payments for life,..and drugs for life followed, and the trap ensued that meant your whole life was a rolling down hill of poverty and more drug taking and relapses…until maybe something amazing happened to get you out of the systematic rut the psychiatric system had placed you in.

MAYBE you found someone you fell in love with, someone who not only would take care of you, but who hated to see you dull and passionless and sexless on the drugs and encouraged you to SLOWLY wean yourself off of them. And maybe it happened to a few of us that it was a success, because love can really conquer all, even the notion that schizophrenia is a life-long hopeless illness. If you got off the drugs in the right way, slowly, and stopped seeing the doctor who told you you would definitely relapse, maybe just maybe you didn’t. Maybe your sex life came back and you found out it was better than Haldol and thorazine, and better than being dulled by the system’s poverty and being sick. And once in a while that person’s husband was so loving and encouraging that they got married and moved away and she stayed well enough to take up a hobby that turned out to make a little money by itself. So she turned it into a business, and miracle of miracles, she didn’t fall into the trap of SSDI  after all but stayed well without the AP drugs and became a businesswoman without enough time to think about being schizophrenic again…

But alas, that didn’t happen very often. Not nearly often enough. There were far too many tragedies compared to the rare success story. Too many people getting diagnosed with schizopohrenia, and then when the fads for multiple personality disorder came, with that, and all the other fads that had to happen because the drug companies had drugs that they needed to sell use on people and they had to have diagnosese to fit the pharmaceutical picture so they could sell the drugs they had on hand. ADHD, autism are only the latest two…

But I digress, I digress, so let me tell me my own story, if I have the time and energy.

I got sucked in. I did. I was hospitalized in 1980, and even before them. But in 1980, as far as I can now recall, I was up late at night, for the third night, in the hospital kitchenette in an absolute sweating panic about my hands. Why? Because I had this strong delusional belief that they were not my own, but that my twin sister had taken them over and controlled them. I could feel them, and in a sense I could see this process happening. And I heard voices telling me that I was in danger. A nurse came in, and asked me why I was up, and in a panic, i told her. I said, somethings wrong with my hands! They aren’t mind, my sister has control of them! And I can’t sleep, I can’t sleep!

Now, the nurse was a kind woman and I think she meant to help, but she couldnt do anything for me but tell me she would call the doctor, who came, in his fashion, running. I was sweating bullets by then, sitting at the empty lunch table, mumbling about my sister and my stolen hands. What could he do, given his own pharma-company training, but offer me some drug assistance and promise me that it would help, that it was what I “needed” in the throes of my illness?

I believed him, I did. And when he came back the next morning, after I had been dosed three times that night with increasing amounts of Melleril until I finally slept, he pronounced that I suffered from the mental version of diabetes. schizophrenia…The rest, well, if it isn’t everyone’s history, it is a version of it. And  it involves SSDI and even SSI because I had never been able to work a full time job even before then. And none of the many drugs I took after that ever did anything for me but disable me more than before. And I would stop them and be hospitalized again with what they now suspect is withdrawal psychosis, or could have been. And I would be started back on the drugs, or a long-acting injection that was supposed to prevent hospitalization. It never did much good…I was a basket case, a basket case. I never washed or changed my clothing, or even took off my shoes, not even to go to bed. NO I wore those hiking boots for a good year and a half before they even saw me take off the socks I wore underneath them…

So how much did the AP drugs help me? And when they started to restrain me for paranoid fears and trying to escape a locked unit, did I then say Enough is enough,  you cannot torture me, I have schizophrenia? No, I accepted mechanical restraints for three days at a ttime as a form of treatment. One doctor actually told me that schizophrenics don’t respond badly to being tied to a bed for a long time, it helps them, he said, by reducing stimulation…So they did that, and they kept me in seclusion for weeks at a time…until finally I would cry Uncle and take the drug they wanted me on, and go home again, prepared for the next certain relapse, because what else was there….I had a life, yes, but it wasn’t much. It was just hospitals and restraints and drugs that never helped me and cruelty from nurses that didn’t know they were hurting me. And doctors who were damaging me without thinking twice about it. And I didn’t even have the mental wherewithal to know that the drugs were the prime offenders. The PRIME offenders.

It is now 5:30am and I have been up all night. My shoulder hurts, from where i have a slightly torn rotator cuff and frozen shoulder tendonitis… I don’t have a bed, only a recliner I should not sleep in…I am a mess, and  I am also NOT going to continue to take my Abilify and Geodon much longer…I cannot. I cannot. I do not know what will  happen, but I am too afraid of what will happen if I take it, to take them, though I have never felt they did me more harm than good. I just don;t know what real GOOD they do me.

More later, or on another day. Sorry this was so impassioned.

14 thoughts on “THE BITTEREST PILLS ARE ANTI-PSYCHOTIC DRUGs but if they work…”

  1. I’m a social worker in community mental health, and I have to say that the longer I spend in this field and the more I see, the less I trust AP drugs. I know a few people who have been helped enormously by them, and that’s great, but for the majority, they are torture to take and don’t actually help that much. It’s all about the dollar bills and the pharmaceutical company luncheons.

  2. Jeeze, I appreciate your explaining this. I am so glad you spent time commenting here. You have really made a contribution to Wagblog tonight and I thank you. My best wishes to you, and I want to say to you that my heart goes out to you. Get some sleep tonight and be well, as well as you can. Pam

  3. It’s not fatal without treatment, although I assume the cancers associated with it could kill you. I’ll have to keep an eye out for that–my ulcerative colitis increases my risk if colon cancer, and one of the meds I take to control it can cause leukemia. They’ll pay to treat the illnesses that result from untreated MTHFR polymorphism, but they won’t pay to treat the disorder itself. It’s insane.

  4. Ah, thank you for explaining. What a B–ch…I am sorry that you are in such a sorry state of affairs. Folate is so essential to the body. I cannot imagine how you function without this enzyme replacement. I really cannot. It is incredible that Medicare part D won’t pay for something so absolutely necessary, yet they will pay for some cancer chemotherapies etc. I don’t get it. Truly. Seriously, how do you even stay alive?

  5. What I have is called MTHFR polymorphism. There are several genes that can be involved, but two primary mutations, C677T and A1298C. I have both mutations. The effect is that my body cannot metabolize folic acid because I cannot produce methylenetetrahydrofolate reductase, the enzyme responsible for breaking it down. It can cause a wide variety of medical issues–certain kinds of heart disease, colon cancer, leukemia, certain birth defects, and psychiatric illness.

    It’s a relatively unknown disorder; I frequently have to explain it to doctors. It’s only in the past few years that much research has been done into it, and it’s not something doctors routinely test for. If they just run basic lab work, people with MTHFR will show normal folate levels in their blood, assuming they get enough from dietary sources. The body just can’t metabolize it.

    It can be treated with L-methylfolate (also known as 5-MTHF). This is manufactured by Xubex under the brand name Deplin. Unfortunately, there are currently no Medicare Part D plans that will cover it because it’s classified as a “medical food,” even though I have genetic testing that demonstrates my medical need for it. (Interestingly, my Part D plan has no trouble paying for my prescription Vitamin D or iron gluconate supplements, which you’d think would also be classified as medical foods. But they’re cheap, and Deplin isn’t.)

  6. This is interesting. Trauma certainly can produce a reactive depression, absolutely. I don’t know anything about genetic defects leading to depression, because I don’t know that anyone has shown what genetic defects can cause depression. Or what depression really is. But I mean this sincerely, I DO NOT KNOW. This may be true in your case. For instance, MS is associated — associated with, it doesn’t necessarily cause it — depression, and they don’t know why, but there is an association of the two. So perhaps there is some genetic defect in your case…But it would be interesting to know which one precisely and why, because if they really understood it wouldn’t that point the way for other people with depression? I dunno, just thinking aloud. I have not heard about this before not in an individual case, only in the generalized case where they make the point that ALL depression is “a chemical imbalance,” which simply has never been shown to be true at all. NO serotonin imbalance has ever been shown to be proven in depressed people, their serotonin levels are no different from mine…What levels are normal anyway? That is the important question to ask. And what genes are normal and what are defective? We are all different, and there are so many variations of “normal” that defective seems impossible in many cases to specify, unless it is so obvious that it really and truly stands out, as in Tay Sacks (sp?) disease or Huntington’s Disease…Again, I am just thinking aloud. Feel free to respond and explain further.

  7. I too took sertraline for years, and thought I needed it and was told I needed it, and was put on it and reput on it numerous times. Just last year they threatened me with ECT because I was “depressed” and refused to take either Sertraline or the “mood stabilizer” lamotrigine…But they failed to note that they were keeping me secluded forcibly in a “quiet room” from which I could not leave without drastic consequences, like four point restraints, and that maybe just maybe that was “depressing…” and that the very nature of their forcibly medicating me, and then having the GALL to threaten me with FORCED ECT, shock treatments was unmitigated — well, something, just appalls me even now.

    Anyhow, the fact is, it was hard to get off the sertraline/Zoloft. I thought I might not be able to do so. But finally I managed it, and I am off it now at least a year without feeling any need to go back on it. Yes, I cry easily, but I do not feel actually depressed. I really never did say I was depressed, even when they put me on it. I was grieving the loss of several loved ones even at the time, I knew that I did not need an AD drug for grief and told the hospital personnel not to medicate grief…but THEY are the stupid ones, and their stupidity had terrible consequences. But if you dare to question them, or dare to do anything at all that questions their judgment, whoa are you in for trouble.

    Good luck with your continued resistance to taking AD meds. I hope you can do it, if you continue to want to. I believe that feeling your feelings is absolutely worth it, and not feeling stupid too! Go for it. Knowing that there never was any basis in fact for the SSRIs and SNRIs to “work” also helped me get off sertraline, because i realized that in fact much of my “response” had been placebo driven or at least the sort of thing I wrote about: My brain liked the change it felt, and so it reacted by feeling less sad. But that only lasts a while then it needs another change, which sertraline cannot do by itself, only with an increased dose or a med change…and I had been through those a dozen times or more. NOTHING works really, I realized, it was all bogus and it was time to admit it. Placebo is powerful, but i wasn’t going to take a drug when sugar pills would do as well.

  8. No, I’m not taking any antidepressants at this point. I’ve been through pretty much all of them anyway, and none of them helped with my depression. Some of my depression is due to a lifetime of trauma, and some of it is due to a genetic defect that can cause (among many other things) intractable depression. When I’m treated for that, my depression improves immensely…but I can’t afford the medication because insurance refuses to cover it. Go figure–they’re happy to cover all the psychiatric medications even though no one can prove that I have a neurochemical imbalance or that those drugs treat it, but when I can demonstrate scientifically that I have this genetic defect and that the medication effectively treats the symptoms, they won’t cover it.

    I’ve never heard of treating ADHD with tricyclics either, but they did. I took those drugs for years. I was too young to understand what was going on, of course, and even if I had resisted, my parents still would’ve made me take them. But now I know better.

  9. Timely post, especially given I’ve just weaned myself off sertraline. It’s been a rough ride, and part of me thinks maybe sertraline is the easy fix which my life would appreciate. But then I’ve lived this long with this debilitating deadness inside that I sure as hell ain’t gonna let it beat me anymore, and this is far better than thinking and not feeling, and people thinking I’m stupid cuz I don’t bite like I used to. No, I say fight the good fight!

  10. Oh jeeze, Hope. Are you still taking that sort of drug? ALL AD drugs are so bogus I cannot tell you. But I don’t need to tell you. Read Whitaker’s MAD IN AMERICA if you don’t already know. Though I suspect you do. AD drugs, that is antidepressant drugs don’t do a danged thing, except of course they do do things, they CHANGE something in your brain, and depressed people feel better when SOMETHING changes…as we all do. But what is weird is, I have NEVER heard of ADHD being treated with a tricycle AD drug. Never. It seems so anti-everything that we have been told about the condition, which of course is all lies anyway. YES< I agree with your self-diagnosis. I think you most likely were MUCH smarter and insightful than the teacher, and probably she knew it too, and so they punished you with medications…It is so terribly sad to think of that energetic little girl needing someone to take her feistiness seriously and put her energies to good use, and instead they drugged you up. The difference between Ritalin and say, imipramine is that Ritalin concentrates the focus and you can study well, whatever else it does. On tricyclics, you feel sedated, dull, and there are a whole host of terrible side effects, even in adults. They are not good drugs, never have been. I remember ELavil was the very first drug I was ever on, and I hated it, I felt SO TERRIBLY SLEEPY all the time, and I just couldn't read a book no matter how hard I tried…Ritalin in my sense of things would have been kinder to you, but they didn't care, because you were, in your words, obnoxious, so they wanted to punish that out of you! God help us all — what adults do in the name of "helping" to children!!!!!

  11. I was diagnosed at 5 with ADHD. I believe it was really just that I was smarter than the teacher, bored, and obnoxious, but this was the early 90’s when ADHD was the fad dx. But instead of stimulants, they put me on a tricyclic antidepressant. I wonder how that affected my brain development.

  12. You are so right, and what bothers me even more is their use adjunctively in the bogus diagnosis of ADHD…WHAT???FIrst you start off giving the kids AMPHETAMINESs, which you don’t tell them what the drug is, of course, you say it is Adderall, a medication, not SPEED. THen because of “behavioral problems ” that suddenly arise, due to the drugs, you add in Zyprexa, and a whole host of problems arise, from physical to mental. IT is INSANE.,..and worse it is criminal and cruel and just sickening. I could scream except that if my neighbors heard me they’d probably call the CIT team and the cops, who would take me away for noncompliance with my AP drugs!!!! 8)

  13. Now they’re pushing antipsychotics even for people with no psychotic symptoms. They say they act as mood stabilizers or augment antidepressants. I used to take them, but I’ll never get anywhere close to them again.

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