Friday, October 14, 2011

Going off Meds

I recently read a book that really disturbed me. It has led me to consider going off my antipsychotic medication or at least drastically reducing it.

In total, the book had a very negative outlook on what psychiatric drugs to do people (especially children, with their developing brain). Of specific interest to me was chapter 6 all about schizophrenia. Here are some direct quotes from the book.

Excerpts from “Anatomy of an Epidemic” by Robert Whitaker, copyright 2010

Pg 111
-“Investigators have dubbed this long-term cognitive deterioration tardive-dementia; in 1994, researchers found that three-fourths of medicated schizophrenia patients seventy years and older suffer from a brain pathology associated with Alzheimer’s disease.”

- “….But other researchers conducting MRI studies had found that the shrinkage of the frontal lobes was drug-related, and in a 2008 interview with the New York Times, Andereasen conceded that the ‘More drugs you’ve been given, the more brain tissue you lose. The shrinkage of the frontal lobes may be part of a disease process, which the drugs then exacerbate. ”What exactly do these drugs do?” Andereasen said. “They block basal ganglia activity. The prefrontal cortex doesn’t get the input it needs and is being shut down by drugs. That reduces the psychotic symptoms. It also causes the prefrontal cortex to slowly atrophy.”
Once again, Andereasen’s investigations revealed an iatrogenic process at work. The drugs block dopamine activity in the brain and this leads to brain shrinkage, which in turn correlates with a worsening of negative symptoms and cognitive impairment.”

Pg 115
-“Here is Harrow’s data. In 2007 he published a report on the patients fifteen-year outcomes in the Journal of Nervous and Mental Diseases and he further updated that review in his presentation at the APA’s 2008 meeting. At the end of two years the group not on antipsychotics were doing slightly better on a ‘global assessment scale” than the group on the drugs. Then, over the next thirty months, the collective fates of the two groups began to dramatically diverge. The off-med group began to improve significantly, and by the end of 4.5 years, 39 percent were ‘in recovery’ and more than 60 percent were working. In contrast, outcomes for the medication group worsened during this thirty-month period. As a group, their global functioning declined slightly, and at the 4.5 year mark, only 6 percent were in recovery and few were working. That stark divergence in outcomes remained for the next ten years. At the fifteen year follow up, 40 percent of those off drugs were in recovery, more than half were working and only 28 percent suffered from psychotic symptoms. In contrast only 5 percent of those taking antipsychotics were in recovery and 64 percent were actively psychotic. “I conclude that patients with schizophrenia not on antipsychotic medication for a long period of time have significantly better global functioning than those on antipsychotics,” Harrow told the APA audience.”

-“Indeed, it wasn’t just that there were more recoveries in the unmedicated group. There were also fewer terrible outcomes in this group. ….Ten of the twenty-five patients who stopped taking antipsychotics recovered, eleven had so-so outcomes, and only four (16 percent) had a “uniformly poor outcome.” In contrast only two of the thiry-nine patients who stayed on antipsychotics recovered, eighteen had so-so outcomes, and nineteen (49 percent) fell into the “uniformly poor” camp. Meicated patients had one-eighth the recovery rate of unmedicated patients, and threefold higher rate of faring miserably over the long term.
This is the outcomes picture revealed in an NIMH-funded study, the most up-to-date one we have today. It also provides us with insight into how long it takes for the better outcomes for monmedicated patients, as a group, to become apparent. Although this difference began to show up at the end of two years, it wasn’t until the 4.5 year mark that it become evident that the monmedicated group, as a whole, was dong much better. Furthermore, through his rigorous tracking of patients, Harrow discovered why psychiatrists remain blind to this fact. Those who got off their antipsychotic medications left the system, he said. They stopped going to day programs, they stopped seeing therapists, they stopped telling people they had ever been diagnosed with schizophrenia, and they disappeared into society.”

Pg 118
-“There is no good evidence that antispsychotics improve long-term schizophrenia outcomes……”
- …..evidence that the drugs might worsen long-term outcomes showed up in the very first follow-up study conducted by the NIMH and then it appears again and again over the next fifty years.”

Pg 119
-“…..once researchers came to understand how antipsychotics affected the brain, Chouinard and Jones stepped forward with a biological explanation for why the drugs made patients more vulnerable to psychosis over the long term. They were also able to explain why the drug-induced brain changes made it so risky for people to go off the medications, and thus they revealed why the drug-withdrawal studies misled psychiatrists into believing that the drugs prevented relapse.
-“…tardive dyskinesia studies evidence that the drugs induce global brain dysfunction in a high percentage of patients over the long term.
-“….once a new tool for studying brain structures came along (MRIs) investigators discovered that antipsychotics cause morphological changes in the brain and that these changes are associated with a worsening of both positive and negative symptoms and with cognitive impairment as well…..for the most part, the psychiatric researchers who conducted these studies hoped and expected to find the reverse. They wanted to tell a story of drugs that help schizophrenia patients fare well over the long term, - their bias was in that direction.”

Pg 120
-“In the nonmedication era, my schizophrenic patients did far better than do those in the more modern era, “ said Maryland psychiatrist Ann Silver in an interview. “They chose careers, pursued them, and married. One patient, who had been called the sickest admitted to the adolescent division of her hospital is raising three children and works as a registered nurse. In the later medicated era, none chose a career, although many held various jobs, and none married or even had lasting relationships.”

After reading that my long term prognosis was cognitive deterioration it was like I felt in my heart a "pop" and a bubble burst. That pretty bubble had been my plans for old age. Artists usually get better as they age. As my artist father ages, he is getting better and better. I was looking forward to a golden time of retirement, not when I stopped making art, but when my art was at its most sophisticated, polished, intricate, and powerful. I always thought "the older I am, the better I'll be - damn the arthritis!" Alzheimer's does not run in my family. Neither does cancer (Unless you smoke. My grandfather smoked a lot and died of lung cancer.) On both sides of my genetic tree people live a long time. My parents are both in their seventies and they are dynamos.

I am doing fine, happy with my creative output, happy with my marriage, but very aware that by devoting myself to making art, as I have to a more and more significant degree, I cut myself off from society. In truth, I feel as restricted as when I was locked up on that psychiatric unit for two years way back when as a teenager. My life is very, very simple and this is because I want nothing to interfere with the narrow window of creativity I have every morning.

After reading this book I told my husband that I should try to go off the antipsychotics and see what happens. I was well aware that there was a probability I would relapse, and that I may not get better for years, if ever.

My husband said, "Make a plan." So here is the plan I made.

My Plan So Far

Stop drinking coffee and any beverage that contains caffeine. This will lesson anxiety. Slowly go off Geodone. Continue with MAO Inhibitors. Ween self off Klonopin, eventually to be used only as a drug for crisis intervention. Use the anti-psychotic 2mg dose of trilifon for crisis intervention.

Expected results – I will have problems with suicidal thoughts and anxiety and paranoia and general fragility (with perhaps some psychotic ideation) for at least 6 months to 4.5 years. I should take this amount of time at least before considering that that I am irrevocably addicted to neurolyptics and continue again with an antipsychotic. I anticipate having more energy, more joie de vivre, yet probably I will continue to be a disabled individual with cognitive defects. I don’t expect a reversal of cognitive damage already done, I still consider myself schizophrenic, however, I would like to prevent further damage by further use of antipsychotic medication.

Currently I am as withdrawn from society as I have ever been. No church, no painting classes, no writing classes, no socialization other than with family members and some interaction with other mentally ill persons on-line or in peer support group meetings. My quality of life has slowly deteriorated to a point where I do not see any difference whether or not I am on or off of medication. I live like a hermit – if I am sick or well concerns no one else except my husband. My life revolves around my husband, my dog, and my artwork, and these three elements are all that I care about. If my marriage is threatened or I find I cannot make artwork or I am hospitalized I would advise myself to continue taking antipsychotic medication.

Strategies to stay sane

– use art as therapy as much as possible. Draw and paint any psychotic thoughts or suicidal thoughts. Before go off Geodone stock drawing supplies. I may not be able to drive far when I am relapsing. Draw when I feel anxiety or any other mood or thought disturbance.

-Start seeing my therapist Jim once a week. Switch therapy time so that it does not coincide on the day that evening mental illness community peer support meets. This will cut down on stress.

-Continue seeing Viki and communicate to both her and Jim how I am doing.

- My husband if needed has offered to curtail overtime hours at work to take care of me. Prepare for economical difficulties as his overtime pay is cut. This means living perhaps on a more stringent budget, at least until I have stabilized more to not need his presence.

-Try, if have more energy, to exercise more. A dream of mine is to once again start jogging. I was very happy jogging.

-call a suicide hotline if I feel suicidal. Get the phone number before going off Geodone.

I have met with my therapist and printed out from him both the quotes from the book and my plan of action. He said several things. First of all he definately wanted to see me once a week and that we could bump it up to twice a week if things started going badly. I was not to go off my Geodone until several things had happened in preparation. It might be several weeks for things to fall into place.

He gave me the titles of three books to buy from Amazon and read. In essence, they define madness as a spiritual crisis, one that a therapist can guide the patient through with the power of love and I don't know what. They are very famous books that tend to be pro-therapy and anti-drug. The books are purchased but haven't been delivered yet.

My therapist wants a meeting that my husband attends.

My therapist wants to document everything. I am supposed to journal. Nothing polished, just a journal. I said, you can tape record our sessions, and he said he might do that.

I must agree that if my therapist says "Go back on medication" I will do so. And we both agreed that a hospitalization would be a situation where I would go back on medication.

The hardest part of what I must do to prepare is to have a meeting with my medication nurse and inform her of what is happening. She is very very pro-drugs. But we have always worked in a partnership together - I feel from her a great deal of respect for me personally and ironically, I feel that she pretty much lets me run the show. I chose the drug that I will take. She has a vast knowledge about drugs, so she guides me, but innovative changes in my drug regimen are a shared responsibility.

My therapist asked me if I was prepared to be an eccentric. I said all I ever wanted to be was an artist.

My husband is optimistic. Since its been ten years since I've been off medication, he rather thinks "my brain has healed". I rather think, that because of the antipsychotic medication, "my brain is now drastically chemically imbalanced."

This would be the thesis of the book I just read.

1 comment:

  1. Dear Karen,

    I've been on the anti-psychotic medication for about ten years now and anti-depression medication a bit longer than that. For the most part I've been free of major delusions and most paranoia, so my positive symptoms definitely appear to respond to the drugs. This is a great comfort to me. Occasionally I think, maybe the drugs could hurt me in the long run and maybe I should try to go off the meds. Mostly I don't think that; I just feel grateful for the relative stability of the present. It's not perfect, but neither is it Hell. And in truth being unmedicated and in Hell scared the shit out of me. I associate taking the medication with taking care of myself, with being responsible. I'm also scared to stop taking them. I want to believe that I could handle the onset of acute psychosis, that I have the experience to handle it now, but I don't really believe that. Psychosis has so many layers and it can pull you down into it and bury you. My logic, which is a pro-drug logic, is that I started out with a physical deficiency that affected my mind and that the drugs have taken the stress off my system by rebalancing me, thereby protecting my brain.

    One thing I do know is that the anti-psychotic drugs are powerful and that if you are committed to getting off of them, you must do so very, very gradually. You sound as if you are approaching this sensibly, with a plan and I commend you for being so open about it with your husband and therapist. For sure, if you do this great experiment, you will need them by your side. But please, if you are heading towards being readmitted to the hospital, return to the drugs.

    I think you are brave to try to do this and I hope that you don't relapse. I would like to believe that I could at some point stop using the medications. Who knows you may convince me yet, but for now I am a little skeptical. The main thing that bothers me about all this is that you have a strong tendency to veer towards suicidal thinking even when you have been thoroughly medicated, so I worry. But, of course, you must live and learn. You are a grown woman making a grown up choice and gathering your support system around you, which I think is very wise. But do go slowly Karen and please God, love yourself! You need to be your own best friend. Be very honest, be flexible and admit to mistakes too. Good luck my friend! And do continue with this blog and let us know how life is going for you.

    Love, Kate : )


In order to keep a neat and orderly blog, I am initiating comment moderation. Thank you.