Sunday, December 8, 2019

Comments by Will Hall, MA, DiplPW

Showing 24 of 24 comments.

  • Hi Ivana, thanks for your comment. I understand your point – we need a simple clear message. I just disagree that coming off medications can be made so simple. It’s just not like exercising and eating right.

    Especially with complicated topics like coming off medications, the role of doctors is to provide useful, complete, and honest information to empower patients. Oversimplifying can imply patients are incapable of thinking for themselves.

    I often emphasize very strongly the importance of gradual withdrawal in my workshops and talks, and I try to make things as simple as possible, but I don’t think we can get around really educating people.

  • Hi Darby, I’m with you 100% that “that the message that going cold turkey is perfectly OK in general is problematic.” I would never agree with that. The point of my post is that by calling the whole process “tapering” and not coming up with a better term, we miss instances where abrupt withdrawal can work.

    Yes abrupt withdrawal may be like russian roulette, the problem is that staying on the drugs may be like russian roulette too.

    I have read Breggin’s new book and it is an extremely useful contribution to everyone’s learning. I agree we need more prescribers who can guide people in the process, I just think we also need to learn from people who did it without — or despite — their prescribers.

    – Will

  • Thanks for the thoughtful reply to my post. I am with you completely about the importance of getting the message out about gradual vs. abrupt withdrawal. It is a cornerstone of my educational work (I was just at a psychology class at Portland State University and I told the students that this, along with the role of sleep deprivation in psychosis, was the most important message I wanted to get across).

    If you read what I say here, and in my Harm Reduction Guide to Coming Off Psychiatric Drugs, I think you’ll find I agree with you. The problem I see it is that by calling the whole process “tapering” people are misunderstanding the complex and diverse nature of coming off.

    I work with many people who have prolonged difficulty with medications, and have close friends living the horror stories of medication damage. I work with people all the time who got into trouble with abrupt withdrawal. I always, always warn people around abrupt withdrawal.

    And I know firsthand exactly about abrupt withdrawal. I was abrupt withdrawn from both Zooloft and from Navane and had very bad experiences both times. A suicide attempt and hospitalization took place after a Zooloft and benzo abrupt withdrawal and I wonder if the withdrawal played a role. So I wish I had been withdrawn gradually.

    I also watched my roommate almost die from Lamictal poisoning. If she hadn’t been withdrawn abruptly, cold turkey, she could have died. What if she went to websites that said “never withdraw abruptly from medications”? Would she be dead now? What if she wanted to come off the Lamictal on instict but decided to stay on to wait until she could withdrawal gradually? Might she have had that poisoning reaction and ended up dying?

    Yes people do get into problems after abrupt withdrawal and some of them really regret the process because of the problems it can create. But I have to disagree with your certainty around this. Some people go too slowly or wait to get off meds, or don’t trust their desire to go off, and then staying on the drugs creates problems.

    Your point about abrupt withdrawal and then not being able to get relief by going back on is a good one. There are people like this, and you point to an extremely important area for research. But at the same time that doesn’t encompass everyone – others find improvement by going back on or trying different drugs. Again, one group’s experience can’t be generalized to a firm rule.

    You say “…yes if you are having a life-threatening reaction then you need to stop straightaway.” The problem here is, When do you know you are going to have a life threatening reaction soon? Getting off quickly is a personal choice and I don’t want to claim I know people are making the wrong choice when there are so many unknowns.

    I have a very close friend who was on Lithium for 15 years before coming off. She had a strong instinct she was too damaged to become pregnant, but her holistic doctors, being ignorant, encouraged her to go ahead with the pregnancy. It turned out that her thyroid had been so injured by the lithium that the hormone and thyroid changes in pregnancy almost gave her cardiac arrest, and she had to terminate the pregnancy. People often have very good instincts and intuitions about their bodies and drugs. If someone feels coming off abruptly is the way to go, I simply don’t have the certainty to tell them it is the wrong decision.

    Published accounts of withdrawal and the internet forums and email lists tend to omit the stories of people who withdraw successfully and then just leave the whole system — survivors and peers included — behind. I do often meet people who come off medications abruptly and succeed. That’s just honest. We need to recognize they are out there.

    Part of the confusion is that there is such a wide diversity of medication experiences. Like I said, 2 weeks into an Effexor prescription is different than 20 years of anti-psychotic and benzo polypharmacy. Again a general principle but not a firm rule: sometimes people are so beaten down and powerless that the desire to come off abruptly, even with bad consequences, is part of an impulse to empowerment and liberation. I don’t want to judge that as wrong.

    Where you say “I have spent years on the various Internet withdrawal forums and it is unquestionably the case that the people who suffer the most and for the longest are those who come off their drugs too rapidly.” I would have to say yes absolutely, that is also my experience as well. And also, there are lots of people who stay on the medications too long and that also causes huge problems. One of the problems with the “only gradually” message is the same problem with the “only with a doctor” message: it potentially puts up an obstacle to people and it denies the reality of people who’ve had other experiences. So I think we put a little too much fear into the meds and can inadvertently give them a little too much power. Sometimes movements tend to start to look like what they are opposing.

    I think, in our efforts to alert the world about the dangers of psych drugs, we sometimes overstate the case. Psychiatry has erred for so long in favor of meds, we shouldn’t make the opposite mistake by exaggerating the dangers of drugs. That is not to deny that people are killed and seriously damaged by medications, but if we express only these accounts we are distorting a complicated picture.

    What I am seeing these days is some people and families read Bob’s work and then think that getting off meds is the solution in and of itself. Often it is, like a magic bullet in reverse. Sometimes it’s not. I fear if we just promote coming off meds as the solution then we are setting up a backlash just like promoting taking meds as the solution creates a backlash. Maybe a smaller backlash, and maybe the overarching message is better, but I’d rather be honest at the outset.

    One of the principles of my work is giving people accurate information that matches my experience, so I often get into quite a lot of hot water when I take unpopular positions. That I guess (maybe it’s because I’m an Aquarius) is my role in the world, I’m always going to not quite go along with the majority view wherever I find myself. My position that medication withdrawal is not always best under the guidance of a doctor is one of the reasons I was shut out of the Alternatives conference for so many years and why some people doubted the value of my coming off guide. I think I was right on that, and eventually the culture caught up with me: today peers are more open to getting involved with coming off.

    I think we’re going to learn that the reality is that gradual reduction is usually best and a very wise general guideline. But the limited research literature that documents people going off abruptly does not state that 100% had problems and couldn’t withdraw; it just documents a trend that supports the general principle of gradual withdrawal. At the same time it’s definitely not a firm rule, and to treat it like that is dangerous.

    Another principle I work with is to accept the ambiguity and uncertainty of life. “Don’t ever go off meds abruptly” is an easy short cut to thinking, but doesn’t get at the diversity of medication experiences out there. I think my principle puts faith in individual relationships, learning, dialogue, and people figuring things out on their own, and that’s my bias about how to contribute to human liberation. I’m just not into programs and monologues about what’s right.

    Obviously I am hugely concerned with abrupt withdrawal. I probably would not have written this blog post unless I also had written in greater detail in my Harm Reduction Guide. But I am committed to following my experience and learning with integrity, which is why I am encouraging us to try to use a different term than “medication tapering.”

    I am with you that “withdrawal” may not be the best term for coming off medications. I use “a harm reduction approach” because I want to emphasize flexibility of outcome, as the diversity is what we need to be emphasizing here, not a program in advance.

    Also your post helps me to understand that, though ‘psychiatric drugs’ is a useful umbrella and the principles of withdrawal do apply in general, there are specific drug classes — like the benzodiazepines — that have very specific profiles around long term addiction. We need more research and education around these differences. I would be much more cautious on abrupt withdrawal in a discussion about benzos for example because of the widely documented sudden death risk and the long term physical risks of abrupt withdrawal. So your information and experience here are really important.

    Again thanks for a thoughtful reply.

  • Thanks Chris. I emphasize that drugs are helpful for many people in the context of telling horror stories of when they are not helpful – including how I was harmed. I stay consistent with the research, which has medications playing all kinds of roles in people’s lives and recovery.

    My aim is to express an experience we don’t hear enough about, while not marginalizing the diversity of other experiences. In a heated, either/or political culture this is often a real challenge, but when we can hold all these voices in the same room and discuss things openly together then real learning and change can take place. – Will

  • I want to thank everyone who is criticizing me when I say psychiatric drugs are sometimes helpful. Being attacked not only at the American Psychiatric Association but also on Mad In America just improves my credibility.
    🙂

    Do psych drugs help people sometimes? Bob’s books aren’t anti-medication, and the research supports the experience of many people who are helped. There are huge risks that often outweigh benefits, and what seems like help might not actually turn out to be, but we have to be honest about the complexity of this issue rather than forcing the facts into either/or thinking.

    I hope you can set aside your own bias and join me in listening without judgment to the broad diversity of roles psychiatric medications play in people’s lives. Do you really want to be like many psychiatrists, diagnosing people as lacking insight when they don’t agree with you?

    I’ve written in detail about psych drugs in my Guide to Coming off Medications, and if you have any suggestions on how to improve it please email me through my website. – Will

  • I am one of the people Bob thanks in the acknowledgements of Anatomy of an Epidemic so yes I’ve read it.

    🙂

    The book is not anti-psychiatric drugs; if you read carefully it is full of research confirming the experience of many people who are helped by their medications. Bob’s journalism is honest, which is why he’s successful and why I work with him. Being clear you are not “anti-medication” is a first step to really being able to talk with people. If they think you just have an axe to grind it doesn’t go very far.

  • I was also forced into the hospital and coerced to take drugs that harmed me. I’m with you 100%.

    Calling psychiatric drugs “medications” does as you suggest confuse and obscure what they actually do to the body, and promote inaccurate disease and medical models. You’re absolutely right here, and that’s why I used the word “drug” in my coming off guide rather than ‘medications.’ I am in the rare position of someone on an internet forum who not only says “Yes, you are right, I agree,” but actually can point to a publication they’ve written where they demonstrate that their agreement has real practical substance in their behavior.

    Professional and common use of language isn’t so simple though – prescription medications can also be for pain, for example, and people do do often understand that their ‘medication’ is also a ‘drug.’ In Oregon we have “medical marijuana” and I also think people understand that a substance can be used medicinally because of its effects, not necessarily in the presence of a disease. For me doing yoga, and drinking skullcap tea, are medicine.

    But I really do agree with your point, and at the heart of my educational work is breaking down the distinction between recreational and psychiatric drugs and emphasizing, as Joanna Moncrieff and David Cohen do, that they all fall under the category of psychoactives and must be understood as such.

    Thanks for your comment – Will

  • I used the word ‘drugs’ in my coming off guide rather than ‘medication,’ but I don’t think purity in language accomplishes much when trying to talk to professionals.

    I meet people all the time who are helped by psych drugs, and I don’t take a fundamentalist, anti-drug stance like the Scientologists. I think we need to be honest.

  • Hi there, I discuss the issue of doctor approval at length in my Harm Reduction Guide To Coming Off Psychiatric Drugs: I’ve been outspoken about choice and the importance of coming off without doctor support for many people. And while it is true that sometimes coming off can be quite straightforward as you suggest, sometimes it is not. For example, many pills are designed in a way that they can’t just be cut with a pill cutter, and even small reductions can sometimes have large withdrawal and be part of altered states. It’s important to treat this topic with the careful consideration it demands, or else we risk becoming as shortsighted as the medical professionals we are challenging. Thanks for your comment and please do add to my survey.
    — Will

  • Hi Maria, this is important information and thanks for writing. While no laboratory tests can demonstrate the existence of bipolar or schizophrenia, yes many tests point to the role of physical factors that could be driving psychotic symptoms then diagnosed as bipolar or schizophrenia. When I learned I was gluten and caffeine sensitive for example, removing these from my diet reduced by experiences that would be diagnosed as psychotic, and I frequently work with people who unearth the role of medication side effects such as from steroids in driving their crisis.