Study: Psychiatric Drug Withdrawal

HSP woman turned me onto a study that Mind, an organization in the UK has published. Mind has done a great amount of work in disseminating information about psychiatric drug withdrawal and continues with this important study. This is a PDF file so since I know not everyone has access to PDF files I’ve cut and pasted the introduction and summary below. See the PDF on their site for the details of the study.

An initial disclaimer made by the researchers themselves:

In the end, we received 248 forms. Although we did not have the amount of choice we had hoped for, we still ended up with a reasonably balanced group. We chose it to ensure that about half had succeeded in coming off a drug. We can make no particular claim about how typical the experiences of this group were compared with those of all people who have tried to come off psychiatric drugs….

…We wanted to find out if people had different experiences, depending on what drugs they tried to come off. When making these comparisons, we only considered people who tried to come off one drug and were on no other psychiatric drug at the time.

Hence this study lacks information for people like me who are coming off multiple drugs. Also since people were not all following careful protocols it can not be ultimately determined how many people would be successful if everyone followed a protocol as strict as mine, for example. Also the final study group was actually quite small comprising only:

• 64 people on SSRI antidepressants
• 21 people on neuroleptics
• 12 people on mood stabilisers.

Nonetheless this is an important beginning. Psychiatric drug withdrawal must be studied and knowledge about withdrawal is sorely lacking in the mental health system–to the point of being virtually non-existent. I hope other people follow suit and not only interview random people who have tried to come of drugs both successfully and not, but also study what makes people successful and how people maintain meaningful lives after withdrawal.

Now the intro and summary to the study:

Introduction
Mind’s research into people’s experiences of adverse effects of taking psychiatric drugs* highlighted the lack of information and support for people wanting to stop taking medication. The research for Coping with coming off set out to find out what happens when people do try to come off psychiatric drugs: the effects of withdrawal and what helps people to succeed.

Summary

Why stop?

The most common reasons given for wanting to come off drugs were disliking the adverse effects of taking them and not wanting to be on them long-term.

Doctors and patients

The research highlighted significant difficulties between doctors and their patients:

• Doctors were unable to predict who could come off their psychiatric drugs successfully. People who came off their drugs against their doctor’s advice were as likely to succeed as those whose doctors agreed they should come off.

• People on mood stabilisers or neuroleptics were particularly likely to come off against their doctor’s advice or without telling their doctor. About two thirds of people on mood stabilisers and neuroleptics tried coming off
against the advice of their doctor or without telling them.

• Where doctors were involved, they were the least likely to be found helpful of any group of people. About half the people who sought or received help from a doctor found them helpful. In contrast, around nine out of ten
people who sought help or support from a counsellor or psychotherapist found them helpful, with other service users being found similarly helpful.

Difficulties

Of the people we interviewed, over half experienced difficulties in coming off their drugs. The most common difficulties were anxiety,difficulty sleeping and depression. Those coming off SSRIs were more likely to have difficulty coming off than people on mood stabilisers or neuroleptics.

Success

The biggest factor in influencing success in coming off was length of time on the drug. Four out of five people who had been on the drug less than six months succeeded, compared with under half who had been on it more than five years.

Benefits

When people who succeeded in coming off their medication were asked about the benefits, they most often said: better mental ability, feeling more alive, having taken back power and control, no longer experiencing the adverse effects, and feeling good about managing without the drugs.

Recommendations

• All people who prescribe psychiatric drugs to have training in how to support people who take them.

• More funding for services to support people through coming off psychiatric drugs.

• Learning from best practice in mental health and substance misuse organisations.

• Commissioning of user-led projects offering independent information, advice and mutual support for people on psychiatric drugs.

• Dialogue between all interest groups concerned with taking or prescribing neuroleptics and mood stabilisers.

• Further research into people’s experiences of trying to come off neuroleptics and mood stabilisers.

This research has highlighted themes that are familiar in many debates about mental health services. They include:

• service users wanting to be listened to and treated with respect

• alternatives to psychiatric drugs

• access to information

• value of peer support

• lack of credibility when you have a diagnosis

• control and coercion

• conflicting views about mental health and distress.

13 thoughts on “Study: Psychiatric Drug Withdrawal

  1. I am so curious as to how many (especially women) are anxious and depressed, medicated, and then (rather suddenly), slapped with a Bipolar or Borderline Dx?

    I also bet it is millions.

    I can tell you it is not just SSRI patients, but also women who have symptoms of PMDD (which was actually “created” by pharmaceutical corps and the APA).

    I was personally on lexapro (SSRI) for two years before I had a final violent upswing of serotonin syndrome (anxiety, anger, mania, tension including TMJ) and what I found was that all of these things worsened while I was entering menses. Now interestingly the theory of serotonin drop off when estrogen levels drop makes me curious as to whether a surge in estrogen/serotonin while I am taking a SSRI caused a medication induced bipolar episode (which was followed by a drop and thus depression).

    I mean like, DUH!

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  2. Russ,
    the person I was going to refer you to is temporarily not taking new people, but you can go to her website from time to time until she is available again…

    Withdrawal and Recovery (yahoo group) the link is in the side bar.

    Also I highly recommend a phone consultation maybe on a regular basis with her…email communication on a regular basis gets difficult.

    I’ll send you an email when I get a chance…

    best to you.

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  3. Ya well I do everything drugwise w/ my psychiatrists agreement. I’ve tried to come off but came off too fast and it was pretty fucked lol. I was going to try again but then I had a panic attack and was worse in general, it wasn’t a good time obviously. But ya, any info you have on this/referals would be much appreciated. Thanks so much. ~Russ

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  4. Hi dear Russ,
    I’m sorry you’ve had to be on a med merry go round since such and early age…

    I can tell you that drugs MADE ME IRRITABLE…now that I’m almost drug free that is blatantly clear….

    If you want to explore what you might be without drugs you need to be very very careful. Your brain did a lot of developing while on those drugs, but ALSO your youth gives you great resiliency… and that is a big plus.

    There are many ways, if you are willing to commit yourself to help healing your body and mind naturally and then see if it feels right to come off the meds…if you have any inclination to do so whatsoever no that the very safest way is by doing NOTHING precipitously or impulsively…coming off drugs can be dangerous.

    You’re welcome to ask me anything you like and I can refer you to someone very knowledgeable if you care to seek further beyond what is accessible through this blog…

    my best to you.

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  5. I’ve always been curious about the similar “one drug leading to another” phenomenon. Could the symptoms one drug created by damaging and perhaps have a permanent effect? I was originally diagnosed w/ OCD which was definitely a wrong and stupid diagnosis despite my psychiatrist’s credentials. Now I’m bipolar which sounds right. Would I have been bipolar if i never hopped on pharmaceuticals at age 12 (now 21)? I don’t know.

    The bigger question is, if I came off the drugs, what would be my baseline??? On drugs (1 SSRI and 2 Mood stabilizers) I’m still irritable. What would happen if I came off? (the question that brought me to this page) I know I’m addicted to them, I’ve tried coming off one i’ve been on for years, not fun. *Sigh*, I don’t think I’ll know the answer to that for a long time if ever.

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  6. What to do? I’m trying to figure that out. I guess we all are and our blogs are beginnings. People have different skills and strengths. We have to find what makes sense for our own personalities when it comes to activism. I’m still working on it. I would like to get beyond the world of the internet. I often feel like I’m preaching to the choir, but maybe that’s just the people who comment. Perhaps a few people come by and are made to think. I don’t know. I experience it as an evolution and not a painless one.

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  7. i don’t remember the last time i was fully open about myself with an MHP. i carefully manage my interactions with them to make sure i get the outcome i want. like hell i describe all my symptoms or tell them my history! they see scars on my wrists and i say, “oh, that! [small chuckle] an ancient suicide attempt.”

    this is what contemporary psychiatric thought is making us do: lie to the people from whom we are trying to get help.

    and don’t even get me started with “regular” doctors! i don’t tell them anything. not what drugs i’m taking, not what drugs i took, not that i have cfs, not anything. i’m as healthy as a fish, now look at my ears/knees/hemorrhoids and let’s get this show over with.

    what we can do, HSP woman: write, write, write. these blogs are saving many people’s lives.

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  8. I am so curious as to how many (especially women) are anxious and depressed, medicated, and then (rather suddenly), slapped with a Bipolar or Borderline Dx?

    I also bet it is millions.

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  9. I am so curious as to how many (especially women) are anxious and depressed, medicated, and then (rather suddenly), slapped with a Bipolar or Borderline Dx?

    I would say there are many thousands of people who are prescribed antidepressants who as a result of side effects get “slapped” with a bipolar and/or borderline diagnosis. Antidepressants cause all sorts of symptoms that get labeled with those two disorders in particular. Aggression, hostility, violence, suicidality, and mania are just a few possible adverse effects of antidepressants. Those things get labeled and mighty quick. No one stops and thinks, “Oh, maybe we should simply discontinue the drug.” Nope, it’s lets add several more.

    Your story: one drug leading to the next is unfortunately extremely common.

    But, dear HSP, you have escaped from psychiatry!! You are psychotropic drug free!!! (as of a couple of days ago everyone)

    CONGRATULATIONS AGAIN!

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  10. It is a great step in the right direction. We “polydruggers” also need some attention.

    But, as you mention, there is a definite “lack of credibility when [one] has a diagnosis.”

    When I announced I was tapering off all psychotropics about two years ago, I wasn’t in the best shape. Very few people saw my view that my polydrugging had indeed changed the face of my original problem (panic disorder).

    I would also like to see some statistics on the specific path I wound up taking:

    First diagnosis: Panic Disorder; prescribed benzodiazepines.
    Second diagnosis: Depression; prescribed SSRIs and the like.
    Third: Bipolar II; prescribed an ever expanding “drug cocktail,” including mood stabilizers and antipsychotics.

    I am so curious as to how many (especially women) are anxious and depressed, medicated, and then (rather suddenly), slapped with a Bipolar or Borderline Dx?

    How many bipolar diagnoses are wrongly passed out? Of course, there are some legitimate bipolar dx, in my opinion, but what about how my Dx changed from Bipolar I to Bipolar II the moment lithium didn’t work for me?

    Okay, I’m getting worked up again! Grr….

    More research needs to be done! Yet, since the majority of researchers have some portion of their funding from Big Pharma, who is going to do it?

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