I sit, hands wringing, heart pounding, cross legged in front of my computer in my 2nd floor apartment living room. I hear the refrigerator buzzing loudly, and I feel more than a little bit detached from my body. Such is the result of my decision to finally reduce the dosage of my antipsychotic medication. If it goes well, I may come off of it completely, but who knows? It all depends on how I fare over the course of this next year or two. Year, or TWO? Yes, I am sensitive and aware enough about my own body (and about neuroscience) to know that a typical 3 week weaning process would have me back on the psych ward faster than it would take for any doctor to say “I told you so.” No, I’m too smart for that. And too cautious. If even with this snail’s paced titration, I stop functioning at the level I’d like to professionally and personally maintain, I can always run crying back into the arms of Big Pharma, and hopefully resume my life as the only kind of mental health advocate I can professionally be on a public scale: one who swallows pills and gets others to do the same.
This will be a complicated transition, to be sure. Even with a recent reduction of less than 10% of the D2 dopamine blocker I have swallowed willingly for more than 2 years (following the adherence to a different one for 5), I am experiencing transient hot flashes, depersonalization, a hypersensitivity to light and sound, poor concentration and some intermittent difficulty coming up with words. BUT, instead of the hasty conclusion I always came to when I tried to reduce my meds in the past (that I’m sinking into psychosis again, that I can’t live without pills) I contemplate the idea that maybe my brain is just reacting to a massive neurochemical adjustment, and so I have decided to endeavor to explore this further.
I am by no means a neuroscientist, or a psycho-pharmacologist, but I am lucky enough to include a few of them among my peers. And, I have been studying this stuff myself since 2004 when I began to transition into my first and only psychosis and needed to know what to do. And as everybody knows, hypochondriacs have great memories and abilities to synthesize medical information. Just kidding. Actually, in one sense, the more frightened you are, the more easily you will jump to the most catastrophic conclusions possible, without giving much credence to the notion that your experience might not be so severe or chronic. I did this. I jumped to the most dire conclusions and the worst case scenarios I could find. Yes, the same terror that fed my psychotic processes were also luring me into the belief that my life was over and I would never recover. One can understand why I thought like this, right? I was young, and increasingly less in touch with consensus reality . But sadly, it is the very establishment that is meant to help people like me, that fed this obsession with my own imminent annihilation. It didn’t take more than a one word google search to come across headlines like “youth’s greatest disabler” and “chronic, degenerative brain disease.” It was so-called reputable articles like these that sent me straight to a psychiatrist, pleading to obtain the magic pills that would somehow at least minimize this horrible disintegration process.
7 years later, I have begun to think differently. There are a few things I know now that I was too fearful to absorb back in 2005.
One: evidence does not show psychosis to be biologically degenerative. The same studies that tried to prove that anti-psychotics prevented brain shrinkage have actually contributed to the data that they in fact can cause it. Not to be a fear-mongerer or anything. Brains adapt. It’s probably minimal in any case. Nonetheless, it is of note.
Two: Several American RCTs of patients being given antipsychotics or no meds at all showed that the antipsychotic group got better faster. No surprise there. But here’s the kicker: patients given no meds recovered more slowly, but they had less incidence of relapse and far better long-term outcomes than those given meds.
Three: a Finnish psychosis clinic has now achieved the best recovery rates from psychosis in the western world. It’s clinicians use caring, supportive, nurturing psychotherapy and work with the content and experience of their patients’ psychotic “symptoms”, almost always without meds. Their success rate is 85%, and the incidence of chronic psychotic disorders has decreased by 90% in the region they serve.
Four: According to a number of studies at McGill and elsewhere, dopamine hypersensitivity and an increased density in dopamine receptors is shown to develop in people who stay on anti-psychotic medication over time, hence increasing the susceptibility to relapse of psychotic symptoms once stopped. Hence the evidence accrued in point number two.
Five: In countries where anti-psychotic medications are far less available, recovery rates from psychosis are notably higher. See points two and five.
Do I really have to continue?
Well, I suppose I am still somewhat torn. Psychosis is scary. And now that I’m probably hypersensitive to dopamine, my chances of relapse may be high (hence the decision to drop my dose incredibly slowly, in the hopes that my brain will adapt and prune away some of those extra dopamine receptors). Also, I had experienced a lot of cognitive decline 7 years ago. And a lot of negative symptoms. I was so flat emotionally, that I could barely function. And, this drug has served me well. But just because these last few years have been good to me, doesn’t mean that I owe it all to Big Pharma. I worked hard. I certainly don’t want to experience such terror again, but then again, I think it’s time to stop letting my fear of fear itself turn me into a complacent (but certainly compliant) doormat. I can risk a little. I can figure this out, one milligram at a time.
I should add that by no means do I recommend everyone to avoid psych meds in all situations. If someone’s beliefs put them at risk of harming themselves or others, or if they are suffering immensely and want quick relief, they should be allowed it. And certainly, there is a massive shortage of safe, nurturing places people can go to ride out and ultimately resolve a psychosis. So, with regard to our current system, how could we not use them? We simply do not have the resources allocated to the right places to actually provide ideal care. So, of course, the conundrum of how to effectively treat psychosis in the long term remains. But I have begun to wonder about the road less travelled – the path toward learning and psychological growth and discernment and agency. I don’t want my old self back; that’s just silly. But I do want to dive head first into what life has to teach me, to challenge and transform my tendency toward paranoia and dissociation and confusion. I want to ride the waves that once knocked me over because I was too afraid to move. I want to stop hiding. I want to give this a try. Thoughts?
Thanks again for sharing Laura. There’s such strength, clarity and wisdom in your writing that I’ve no doubt you have the inner resilience to do this, especially if you do it in the intelligently phased way you describe. I hasten to add that I’m not a medical professional, nor have I been diagnosed or treated for psychosis. The inner struggles you describe are so universally human that resonance comes easily, though there’s no way any of us can really fully imagine how another is perceiving reality. Neither can I imagine what the magnification factor is in your experience of anxiety etc. compared to my own.
All the very best, and whatever you decide, it’s perfect.
John
Thank you so much for sharing this. It’s a puzzle I think no one knows the answer to, and an answer that is so complex and different for every person. But I applaud your courage in your exploration of this. I have several friends who have had similar experiences with psychosis, bipolar episodes, etc. and I thank you for sharing your experience. It can be so hard to understand.
hi tried the same with depression drugs…zoloft
both times cost me a year on my back in a darkened room….. but it was worth it to do the experiment
I wonder if this patient has read the book, ” Playing Ball on Running Water ” dealing with a totally different way of treating ( or not) psychosis, in Japan. I really wonder whether any American doctors have tried this approach?
I would appreciate it deeply if your or some physician reading this would let me know.
Earl McHugh ( earlmchu@aol.com).
I haven’t read this, but I would like to! I think most doctors in the western tradition are dissuaded from acknowledging the validity of Eastern medicine. I do know of one doctor whose son has had an experience of psychosis who was looking into alternative means of treatment, but there is so much fear attached to Western research on the topic that I think many doctors are simply afraid of this idea that people will become chronically ill if not medicated. It’s a legitimate fear, given the slant of their training, but it does prevent the development or emergence of alternatives, which is unfortunate. I really can actually say that I only know one individual personally who has not used medication for her psychosis, and she is doing very well. However, this is something I would like to explore further. If possible, I would like to train at the Vermont clinic where they are replicating the Finnish model I mentioned. Certainly, duration of untreated psychosis has been shown to correlate with more chronicity, but this doesn’t mean that the treatment has to be psychotropic drugs. I will definitely look into the book you mentioned. Thanks, Earl!:)
Thank you for sharing. Many years ago, as marketing director for design/engineering firms, I solicited biopharmaceutical firms and learned how heaivly this industry segment controls legislation and public opinion. In the last several years, I taught art in a large eastern community college. Several of my students were heavilymedicated due to bipolar disorders, schizophrenia, asperger, etc. I found that there is so little knowledge regarding other treatment options and wish that this type of information was more readily available. One student was so heavily sedated that she slept over 12 hours a day and was heavily overweight. Written in the 70′s, “I Never Promised you a Rose Garden” remains a solitary woman’s determination to recover on her own.
Thank you, Lydia, for another great source of reading! I too have found these side effects to be problematic in my own life, and with people with whom I have worked. It is interesting – and I may write another post on this topic – that I met a senior student of one of the first Tibetan Buddhist masters who first brought Buddhism to North America, and he was given the assignment to help other students to work through any psychosis or mania that came up in the community. He has since helped many people process and move through psychosis and mania – usually over 3-5 weeks, using a calming, kind approach and focusing mainly on helping them to use shamatha-vipassana meditation to remember to come back to the present moment, and not to run away with, or believe heavily in, their thoughts. Of course, near the beginning, people in such states may only be able to sit for a minute, but gradually that builds up to several hours a day. This wise and fascinating man was told by his teacher never to suggest medication, because (I assume) it prevents someone from learning how to work through these states in healthier ways. However, there is still very little data on alternatives. Hopefully, I will make it through this transition and I (and I hope many others) will be able to work toward establishing more evidence-based alternatives in this field.
If you haven’t already, check out the book GUT AND PSYCHOLOGY SYNDROME by Dr Natasha Campbell-McBride…it’s quite fascinating and may just be the next wave of treatment.
Two Books written by persons in the field might be of interest: RETHINKING MADNESS, Towards a Paradigm Shift In Our Understanding and Treatment of Psychosis by Paris Williams, Ph’D. [Joanne Greenberg, bestselling author of ‘I Never Promised You a Rose Garden’ says “I’ve been waiting my entire life for this book.”
And THE SPIRITUAL GIFT OF MADNESS, The Failure of Psychiatry and the Rise of the Mad Pride Movement by Seth Farber, Ph.D.
What a very moving account!
What a moving account.
And am very familiar with the actuality of the four points made.
The “Illness” part of a” psychiatric illness” is a metaphor, a conceptual abstraction.
A literal illness can treated with medication.
A metaphorical illness cannot.
(I am a physician and mental health professional)
Excellent post Laura. I hope that this experience will help your learning experience to know yourself better and to help you to be able to regain control of your symptoms slowly on your own without the use of the big pharmas getting in your way. Excellent idea with coming off them slowly so that you can notice any changes and be able to monitor better the progress. Although personally, I found it quite the challenge to get off medication myself, it was worth it.Perhaps I should have went slower then what I did- a month process is what I choose with my medication. It is worth it personally to feel the raw emotions and feel as if I myself have control over my experiences. I have faced some struggles within the last year being off of medication but I would not change it- I don’t feel blunted most times and I feel that I have gained valuable information on self awareness and being in tune with my body.
So, I hope that things turn out in favor for you and you are able to achieve your goal bit by bit. Its not an easy task so I commend you. Looking forward to seeing how this goes for you. Please post an update every so often so that your readers can know how it is going and encourage you along the way. Blessings to you my friend.
Dear Twyla,
I admire your courage and commitment. And yes you are right on target about longterm antipsychotics being associated with brain shrinkage. And the research material from the Finland group.
Furthermore you are not alone in the issues you face. I can recommend Peter Breggin as a superb resource for anyone coming down off anti-psychotics and antidepressants.
I am a psychiatrist and have no doubt about the research material you have read.
The spiritual Buddhist approaches have much to offer.
Tbony