Thursday, July 27, 2017

Support for Coming Off Psychiatric Drugs?

Home Forums Rethinking Psychiatry Support for Coming Off Psychiatric Drugs?

This topic contains 79 replies, has 20 voices, and was last updated by  Eliza J 4 years, 7 months ago.

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  • #17982

    Laura Delano
    Keymaster

    How do we effectively provide support in an inexpensive, accessible way for people who have decided to come off of psychiatric drugs, and what does that support look like?

    #18002

    Laura Delano
    Keymaster

    I know the process of coming off of psychiatric drugs, for me, was one that only began with the actual physical tapering, which was an agonizingly slow process that I most surely could not have done alone.  Although I didn’t have anyone in my life who had successfully recovered from psychiatric drugs to tell me it was going to get better, I was very actively involved in a different “recovery” community (for people recovering from alcoholism), and was able to lean into people who’d been through their own tremendous emotional and physical pain to tell me to hang on and not give into the emotional, mental, and physical pain I was experiencing.

    I don’t believe I could have hung in there for the first year and a half of being off psych drugs without having people around me to tell me that the pain was going to ease in time; in fact, I know I couldn’t have.  I often think about ways I can help to create the same support I found in my other “recovery” community for people thinking about or in the process of coming off psych drugs.

     

    I should say that the first 6-8 months were absolute HELL.  At 8 months, I started to notice a slight momentum– things weren’t as bad as they were the week before, you know, that kind of thing.  It wasn’t until 1.5 years in that I actually started to feel GOOD.  And I am now only 2 years in, and although I struggle with some residual physical issues, I feel that I have fully recovered from the drugs mentally, emotionally, and spiritually.  I know the physical stuff is only going to continue to get better the longer I hang in there, which is no longer a difficult thing to do.  I see my journey today as an exciting one– I get to discover who I was meant to be all along, but could never access because I was so drugged, numbed, detached, disconnected, and shut down by my “treatment”.

    What are others’ experiences of coming off?  What type of support did you rely on?  How can we create local support that is FREE and ACCESSIBLE for people?

    #18029

    Russerford
    Participant

    Laura, this is a huge, huge issue, in my opinion!  It’s on my mind every day as i see my daughter reeling from the horrific effects of psych meds, but caught in a terrible double-bind:  try to go off carefully (IF you can find a needed prescribing doctor who will help you with this) and risk withdrawal psychosis and even more abusive “treatment” in acute psychiatric “care”, versus staying on the powerful cocktail of psych meds and watching your (her) life slowly ebb away, physically, mentally, emotionally and spiritually.

    Thanks for sharing your own experience…it’s encouraging and helpful.

    #18042

    Altostrata
    Participant

    It’s difficult and we need far more doctors to help people with just the basics of tapering.

    I’ve got a whole Web site filled with questions from people coming off psychiatric drugs (http://survivingantidepressants.org).

    People have a tremendous amount of difficulty with these realizations:

    -The drugs may be doing more harm than good
    -Doctors are not always sources of accurate information and good care. There is no medical safety net.
    -Guilt over having wanted the medications in the first place
    -There are huge societal pressures to keep a person in a disenfranchised patient role
    -Time lost to inability to emotionally participate in relationships
    -Time lost to adverse effects and withdrawal syndrome
    -Lives, families, and careers destroyed by inappropriate medication, adverse effects, etc.
    -A wasted life
    -Loss of sex life
    -Dealing with anger towards the medical establishment

    And then there are difficult lifestyle changes:

    -Figuring out how to work even though you have horrible symptoms
    -Realizing you’re unable to work because of horrible symptoms
    -Filing for disability (often, this has to be psychiatric, on paper)
    -Finding a place to live after a disintegrating marriage or being thrown out of parents’ or relative’s home
    -Recuperating from drug damage — need peace, quiet, security
    -Taking care of oneself: Eating better, sleeping properly, getting appropriate exercise
    -Figuring out how to go back to work after being disabled
    -Figuring out how to talk to friends and acquaintances about your situation

    and so much more!

    “Unpatienting” oneself is very difficult work for people who may have no emotional support for changing their lives. Families are sometimes resistant.

    Psychotherapists are more likely to be sympathetic than MDs but many therapists subscribe to a medication model. People have to slog through interviewing therapists to find out who is trustworthy.

    Finding a therapist or any kind of doctor, even an internist, may require the disgusting work of kissing a lot of frogs before you find one you can work with.

    I’ve been trying to put together a directory of sympathetic doctors and therapists, but it’s been very hard going. No help from ISEPP, for example — they’re focused on keeping people off drugs by providing therapy instead. No help from Critical Psychiatry in the UK — they like to theorize, but none of their members step forward to treat people. No help from the Breggin folks — although there’s a rumor a directory is in the works. No help from Steve Moffic — you can see for yourself where those conversations have led!

    Local peer support groups would be a huge step forward, but we need people to lead them. I ran one in San Francisco for over a year, there’s no doubt the need is there and I know how to get this going, but I can’t stretch myself any further right now.

    So the millions of people who are on psychiatric drugs are pretty much left to their own devices, or to whatever help they find on the Web, which varies greatly in quality and accuracy.

    (Note to Matthew: The editor’s bullet list command didn’t work in this post.)

    #18052

    Malene
    Member

    Hey Laura,

    I agree with Altostrata that this is a gigantic question – much bigger than just getting off the medications. Often there was some emotional reasons why we were put on those medications to begin with, and the answer need to be one that will also address those reasons – or we risk our recovery completely. I think the answers to this question has to be multidimensional. It has to address the reason for the medications to begin with. It has to address the emotional reactions to the medications now. It has to provide simple ongoing emotional support. We need to get better organized and create more of a community. As we do that then we can start to tackle this gigantic question. In the meantime, encouraging people to find a doctor that can help them, educate themselves online and create as much of a support system as they can find would probably set the stage.

    I have found therapy have really helped – but I am adamant, there is only one kind of therapist that I will hire. The therapist I would hire would have to work from an attachment paradigm and have to be trained either by Diana Fosha or Sue Johnson.

    Malene

     

    #18053

    Laura Delano
    Keymaster

    Yes, this is surely a huge thing to address.  I see my recovery from psychiatry as being fourfold– physical, emotional, mental, and spiritual.  Like I said up above, the physical withdrawal was only the beginning for me– connecting with a sense of self that was genuine, meaningful, and separate from being “mentally ill” and “medicated” has been a truly painful, confusing, scary, and complicated process that is still unfolding.  To have gone through adolescence and early adulthood with no inner compass, no connection to an inner voice or gut instinct because I was told I couldn’t and shouldn’t trust myself, made for a very scary, confusing, overwhelming first year and a half off the drugs and out of psychiatry.  It’s really been in the last six months that I’ve finally felt true liberation and a sense that the body, mind, and spirit I have today is mine, is unique, and is beautifully human.  There was a period of time when I didn’t think I’d ever be able to say that I feel connected to my true self– to the person I was meant to be all along– but I’ve finally started to feel that way.  I have moments of intense doubt and fear, of course, but I’m able to move through them knowing that I am human, just like everyone else, and that I have everything I need inside of me (plus unconditional, non-psychiatric support) to move through the experience and need not worry about relying on outside things (doctors, therapists, pills, hospitals, etc.) to carry me or fix me (which never happened anyways during all those years!)

    In my opinion, the answer to my initial question of what does proper support look like is a vast one that I believe has to address those four components– the physical, mental, emotional, and spiritual.  I’ll be running a workshop at the ISEPP conference in Philly this November on this very topic– what does it mean to “recover” from psychiatric drugs, and how can we as a society implement the supports needed to make this possible for people?

    Altostrata, I have tremendous respect for the work you do and the commitment you have to this cause and would love to hear more about the groups you ran on the West Coast; currently, I have a lot of email/phone exchanges with people who’ve reached out for support around coming off (at least one connected to me through you!), and I have one-on-one coffee with people who live near me in Boston, but I’d love to get more organized, and more communal.  It is my opinion that non-clinical support is vital to this process.  The issues you listed are really important ones and I hope this thread continues to flesh them out and problem-solve around them.  This truly is a huge dilemma on our hands, that will take continuous and persistent work to address.

    #18054

    Laura Delano
    Keymaster

    @altostrata, I forgot to say how much it saddened me to read this from your previous comment:  I’ve been trying to put together a directory of sympathetic doctors and therapists, but it’s been very hard going. No help from ISEPP, for example — they’re focused on keeping people off drugs by providing therapy instead. No help from Critical Psychiatry in the UK — they like to theorize, but none of their members step forward to treat people. No help from the Breggin folks — although there’s a rumor a directory is in the works. No help from Steve Moffic — you can see for yourself where those conversations have led!

    Are there any other venues of potential clinical allies that we can explore?  Has it really only been through word of mouth that you’ve found doctors and therapists who are willing to help people come off?

    #18075

    Malene
    Member

    One question that has been on my mind for a couple of weeks, that I would love some feedback from other survivors on.

    As much as we all hate the DSM labeling system I am aware that sometimes we humans experience extreme states of emotion. I have worked both professionally and as a volunteer with people labeled as “mentally ill”, and I know that the experience of hearing voices can be distressing, just to mention one. I have also been around people that were labeled as “manic” and while they didn’t feel distress at that moment I felt scared when trying to help them. I also spoke with them later when they were “depressed” and that certainly was distressing.

    Then I have worked with people that seemed consistently suicidal to more or less extreme degrees, and they were certainly not enjoying that experience.

    So, my question is, what would be a good “system” that would address all of these extreme experiences? How do we address human experiences, without using force, when those experiences are overwhelming or even scary to witness?

    Please know, I am not blaming anyone if I feel “scared or overwhelmed” by trying to help them. That is my limitation, not the limitation of someone I am trying to help. However; I believe that our current use of force, humiliation and degradation is based on the fear of the helpers. We need some way to address this fear.

    Malene

    #18088

    Hermes
    Participant

    Malene, thanks for your questions for which I don’t have direct answers. I just want to say that when you told about your own fears and worries about dealing with mental patients, you immediately got my full sympathies. It made me better understand what some of the helpers feel like, and by telling about your own emotions and experiences while meeting with the patient, you kind of became a real person.

    #18089

    Altostrata
    Participant

    Laura, it made me very sad, too. I’m going to tell more of the story just to show you what we’re up against.

    I contacted the ISEPP leadership asking if they knew of any MDs who could help people taper off medications. Al Galves responded and suggested Joseph Tarantolo, a psychiatrist,  medical advisor, and board member of ISEPP.

    I referred a member of my site who was having a lot of difficulty tapering off Pristiq to Dr. Tarantolo. She drove from Virginia Beach to Washington DC to see him. While he was kind enough to see her on a Saturday, it turned out he was one of those doctors who “don’t believe in” a physical withdrawal syndrome. He thinks the symptoms are all manifestations of a psychological dependency on the drugs.

    You can read the story here http://survivingantidepressants.org/index.php?/topic/1316-chrisihops-pristiq/

    “It’s all in your head” is the last thing people experiencing withdrawal symptoms need to hear. They need concrete help. I struck Tarantolo off my list of recommended doctors.

    Perhaps you can help ISEPP understand if they want to urge people to use non-drug treatments, they are going to have to face the reality of withdrawal syndrome, too.

    In the meantime, the only way I’ve found to get doctors for my list (see http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/ ) is to contact those that seem to be sympathetic from their postings on various Web sites. My site members have also found a few.

    I contact the doctors one by one, through e-mail. This is very, very time-consuming. Maybe one in 6 respond to me. I always ask if they know of any other doctors who grasp the importance of slow tapering. None of them knows of colleagues! They must all feel very isolated.

    I would certainly like to have help doing this. For example, this list http://benzodocs.com/ is out of date. There are other lists of “radical” doctors I’ve found. Would anyone like to divide the labor?

    About starting local groups — I have some materials I used to start mine, and I have some ideas about how to make this happen. But people need to step forward to be leaders.

    (Malene, you bring up some huge questions in your post of August 29. It may get buried in this topic about Support for Coming Off Psychiatric Drugs. You may wish to start an entirely new topic with your post.)

    #18106

    Malene
    Member

    Altostrata,

    I am willing to help in any way that I can. We might even be fairly close to each other, I am just north of San Fran.

    Malene

    #18108

    Laura Delano
    Keymaster
    Altostrata,
    I just want to reiterate how much respect I have for all the diligent, time-consuming, intense work you’ve done.  It is truly invaluable.
    I will definitely reach out to Al Galves about the issue of ISEPP members not believing in the validity of withdrawal syndrome.  Very shocking news to hear, indeed, and I’ll definitely read your story at survivingantidepressants.org.
    Kermit and I are in the early stages of trying to organize a “provider” list of docs who’ll help people come off for the Mad in America resource section.  (By ‘early’, I mean, we just decided in the last month or so to do it, and haven’t even started…)  Maybe the three of us could talk about how to best collaborate, so that we can pool our efforts together?  As you said this is definitely an endeavor that requires labor-dividing, and I am 100% on board with doing everything I can to help.  Maybe we can set up a task-force of sorts through this forum, divided by region, so that we can set more realistic goals.
    What’s so challenging about this whole thing, as you obviously know, is that there is no one standard withdrawal experience; it can be short/long, easy/hard, straightforward/complicated, and everything in between.  Thus, the idea of establishing protocols, timelines, guidelines, and so forth is a difficult one– something that medical professionals are going to have a hard time with (and potentially use as evidence of the psychosomatic nature of withdrawal, that you say Tarantolo spoke of).  In my opinion, this is all the more reason for those of us who have successfully come off to be at the forefront of providing support– I see the process of providing support to someone who is withdrawing as less about telling them what to expect and when to expect it (which I feel is what “professionals” are trained to do, so that they can monitor and manage and stay in control of), and more about helping the person co-exist with the intense physical, emotional, mental, and spiritual pain that comes with the process, as well as the unknown length of time for which it will last.  It was 1.5 years until I was no longer dominated by that pain, so in that time, I learned a tremendous amount, through my own discovery and through the guidance of others who had their own experiences with tremendous pain, about sitting with and moving through profound discomfort.
    We each have our own threshold, of course, and this doesn’t mean that some people are “better” or “worse” at withdrawal, and at co-existing with pain.  We are simply different, unique, and individual in our relationship to it, and this is not a good or a bad thing.  By keeping this fact at the front of any support we provide to people coming off, we will help them to avoid the guilt/shame/feelings of failure and weakness/fear of judgment that can come with the coming off process.
    To go back to ISEPP for a minute, and to @malene‘s big question– I will actually be presenting a workshop at their Philly conference in November on what recovery from psychiatric drugs is and how we can create a system to help people with it.  @Malene– I agree with Altostrata that starting a forum on this topic would be a very helpful and useful to many people!  I think about your question each and every day, and it is definitely one with no clear answer.  @altostrata, you are totally right about the importance of leadership in all of this– we need to get to and stay at the forefront, with loud voices, and firm footing, to talk about not just the reality of psychiatric drug withdrawal, but also the hope and light on the other side of it.
    Onwards,
    Laura
    #18109

    -Anonymous
    Member

    I think it is important not to overplay this concept of “withdrawal syndrome”. Some people have problems coming off psych drugs slow or fast, and some people are able to come off them fast no problem. People should not be discouraged from trying cold turkey quitting any kind of habitual drug use. While I think there are plausible stories of people having some kind of severe injury/damage that is healing while going off the drugs, I also think there are a lot of people who fill their minds with the horror stories that litter the internet, and prime themselves to “expect” a rough time when going off the drugs. My view is a moderate centrist view halfway between this Dr that was spoken of, (it’s all in your head), and the David Healy (it’s all in your drug) crowd.

    Getting chemicals out of your body is a simple objective fact of metabolism and half-life, toxicology. No one said it was going to be easy. But I wouldn’t needlessly prolong the torture, which is what some of these “tapering” believers seem to do. When I gave up a pack a day smoking habit I didn’t decrease by one cigarette a day for 20 months, I did it cold turkey. I can be rough for anyone when a substance your body is used to is going to be without that substance, but there is MUCH that is psychological about our habitual use of anything.

    If someone has grown enough to know who they are, where they stand in the universe, and the world, and has no self doubt, is ready, and plans, and keeps stress down during the process, the question of whether to yank the substance fast or slowly is up to the person. I’m pro-choice.

    It is important to imbibe the hopeful success stories, as well as the horror stories. The internet content on this issue, is in my opinion, firmly biased toward perpetuating a deeply pessimistic view of drug withdrawal.

     

     

    #18121

    Altostrata
    Participant

    Great, Anonymous. Encourage people to go cold-turkey, and then they can come to SurvivingAntidepressants.org or some other support Web site begging to be patched up — which can’t be done. It might take them years to recover, or maybe never.

    Your position is not informed by how bad withdrawal syndrome can be. It’s not worth the risk to go off cold-turkey. Even a fast taper is preferable.

    The horror stories do NOT exaggerate the seriousness of withdrawal syndrome. It can destroy health and lives. It is not always mild and transient, as doctors would like to believe (and apparently, you do too).

    Now, I hope you won’t mind if I ignore any of your contributions to this topic. In my opinion, you have nothing constructive to add.

    #18123

    Altostrata
    Participant

    Laura, the work is indeed difficult and I would welcome assistance. The doctor list is essential to enable the vast numbers of people overmedicated on psychiatric drugs to come off safely. My list is here http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/

    Most of the doctors I contacted understand a gradual reduction tailored to the tolerance of the individual is key. Separately, they have arrived at the kernel of logic in tapering. It’s not rocket science. In training doctors, overcoming preconceptions about “it’s all in your mind” and dismissal of withdrawal symptoms is the difficult part.

    At one time, I was going to start a private forum for doctors about tapering, but they’re not good forum participants, they don’t have time.

    I know this subject inside and out. I am well aware there is a wide range of reactions to dosage reduction.

    I have developed a protocol myself. http://survivingantidepressants.org/index.php?/topic/1024-why-taper-by-10-of-my-dosage/ , briefly:

    Many people do fine with a faster taper. Are you one of them? You can’t tell. This is a harm reduction approach to tapering:

    – Initially, make a 10% reduction and hold there for a MONTH. It can take several weeks for withdrawal symptoms to emerge. Do that again the second month.
    – If you have very minor or no symptoms from these 2 reductions, you can try reducing by 10% every 3 weeks. Do that twice. If no problems, reduce by 10% every 2 weeks. Do that twice.
    – If no problems after 4.5 months of very gradual reduction, you may be able to reduce by 10% every week.
    – If significant withdrawal symptoms appear, make smaller cuts or go slower. Listen to your body.

    In this way, the 10% method protects everyone and you have the option of tapering faster if you can tolerate it.

     

    You may note there are 99 information-packed topics in my Tapering forum here http://survivingantidepressants.org/index.php?/forum/14-tapering/ Many of them were written  by me; they contain information I consider essential for tapering.

    The entire site contains what I consider to be the very best information about withdrawal syndrome, tapering, and recovery. I don’t have the energy or time to replicate it all on MIA. I will be happy to supply links and we can figure out how to repurpose the information if you wish.

    (Matthew, <ul> is not working in the visual editor OR in html.)

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