New Study Examines User Experience of Discontinuing Psychiatric Medications

Researchers find that support and self-care were helpful for users during discontinuation, but that mental health professionals were not very helpful

Peter Simons
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A new study, just published in Psychiatric Services, examined user experiences of discontinuing psychiatric medications. The researchers found that although it is possible to withdraw from psychiatric drugs, mental health professionals were not very helpful during that process. The research team was led by Laysha Ostrow, PhD, CEO of Live & Learn, Inc. She writes:

“Despite numerous obstacles and severe withdrawal effects, long-term users of psychiatric drugs can stop taking them if they choose. Individuals who discontinue report that self-care and social support help, but mental health professionals could be more helpful.”

Photo Credit: Flickr

Clinical practice guidelines recommend that psychopharmaceutical treatments for most mental health concerns should be prescribed for a short-term effect, then discontinued. However, patients prescribed these medications often have difficulty discontinuing them due to severe withdrawal symptoms.

The Psychiatric Medication Discontinuation/Reduction Study (PMDR)

This current study was known as the Psychiatric Medication Discontinuation/Reduction study (PMDR), and according to Ostrow, “It is the first U.S. survey of a large sample of longer-term users who chose to discontinue psychiatric medications.”

The study, funded by the Foundation for Excellence in Mental Health Care and led by current and former users of psychiatric medications, sought to understand first-hand experiences and strategies of individuals who decided to discontinue psychiatric medications, and either stopped or reduced the use of these medications.

The researchers surveyed 250 participants, most of whom were white (87%) and female (76%). Participants could be diagnosed with more than one condition; most of the participants (64%) had a diagnosis of depression, while 41% were diagnosed with bipolar disorder. 20% of the participants were diagnosed with a psychotic disorder.

Likewise, 76% of the participants were taking antidepressants. 56% were taking anxiolytics, and 47% were taking antipsychotics. Participants may have also been taking mood stabilizers (38%) and stimulants (13%).

All participants were attempting to stop one or two prescription medications. All had been taking their medications for at least nine months, although most (71%) of the participants had been taking psychiatric medication for more than nine years. Almost two-thirds of the participants had spent time in an inpatient hospital setting.

“About one-third (36%) chose to discontinue over a period of more than six months, another third (31%) did so in one to six months, and a third (33%) in less than one month, with half of this group (16% of the sample) choosing to do so ‘cold turkey’”

More than half (54%) of the participants in the study were able to successfully discontinue their psychiatric medications, and the researchers found that people were generally happy with this decision.

According to Ostrow, “Of those who completely discontinued, 82% were satisfied or very satisfied with their decision to discontinue.”

REASONS FOR DISCONTINUATION

Participants listed many reasons for wishing to stop using their medications. Among the top reasons were

  • Concerns about long-term effects (74%)
  • Experiencing adverse effects (72%)
  • Feeling that the medication prevented them from self-understanding (48%)

34% said they found an alternative treatment, while another 34% said they felt better.

29% said the drug was simply not effective, and 23% said their medication had stopped working.

The reasons given in this study are consistent with previous literature. People diagnosed with mental illness have their life expectancy cut short by an average of 25 years, at least some of which is attributable to the adverse effects of long-term medication usage—such as metabolic problems and organ damage. Even short-term use is often accompanied by severe adverse effects.

For example, a recent study examining user experience of antidepressant use found that over 85% of participants experienced side effects. Quotes from participants included feeling “disconnected and lifeless” and, commonly, lack of sexual desire and anorgasmia, which intensely affected participant’s romantic relationships. Research also shows that sexual side effects may persist long after antidepressant use is discontinued.

Additionally, people often want to discontinue medication use because the drugs are not having the expected impact on symptoms. The efficacy of antidepressants, for example, has been consistently questioned. Meta-analyses have found that the benefit of antidepressant medications “may be minimal or nonexistent, on average, in patients with mild or moderate symptoms.”  

WITHDRAWAL EXPERIENCES

Ostrow writes that “The experience of discontinuation was often physically and emotionally grueling.” More than half (54%) of the participants rated their withdrawal symptoms as “severe.”

The most common withdrawal symptoms in this study were changes in sleep (80%), increased anxiety (76%), difficulty with emotions (73%), and sadness or tearfulness (70%).

Some additional withdrawal experiences included

  • Fatigue (69%)
  • Flu-like symptoms (62%)
  • Memory and concentration problems (61%)
  • “Brain zaps” or neurological problems (61%)
  • Diarrhea or constipation (47%)

The researchers highlight that 44% of the participants experienced thoughts of suicide, and 36% experienced thoughts of self-harm. 22% experienced psychosis.

WHAT WAS HELPFUL?

Less than half (45%) of the participants considered their mental health provider helpful in the withdrawal process—although almost all (73%) were receiving professional mental health services.

Participants stated that instead, what they found helpful was support from friends and family, and personal self-care practices. 42% of participants reported that friends who had also discontinued medications were supportive, while 41% reported that internet support groups were helpful. 39% reported that family support was helpful.

The self-care strategies, as rated by participants, were

  • Self-Education (e.g. reading, internet research about discontinuation) (76%)
  • Being outdoors (74%)
  • Getting sleep (67%)
  • Being with pets/animals (67%)
  • Expressing Feelings (67%)
  • Physical Exercise (66%)
  • Entertainment like TV, movies, reading (63%)
  • Dietary and nutritional changes (57%)
  • Mindfulness/meditation (57%)
  • Being in water/baths (55%)
  • Hobbies (55%)
  • Journaling/Writing (46%)
  • Over the counter substances (39%)
  • Reducing stimulation (39%)
  • Prayer/mantra/chanting (38%)

WHY ARE MENTAL HEALTH PROFESSIONALS UNHELPFUL?

Previous literature has found that mental health professionals may be unaware of the prevalence of adverse effects, types of adverse effects, and dangers of adverse effects. Mental health professionals have also been criticized for failing to provide adequate informed consent for psychopharmaceutical prescriptions. For instance, in one such study, users who were prescribed antidepressants stated that

  • “In reality, psychiatrists refuse to answer questions and refuse to accept or discuss side effects.”
  • “The side-effects weren’t explained very well by the prescribing GP. Anorgasmia is a particularly bad side-effect.”
  • “Would of (sic) liked to hear more about side effects….. I had to find out lots of information myself when I was in a difficult anxious state.”
  • “I wasn’t told of all the side effects; in fact, when I researched them myself and then told my doctor, she hadn’t got a clue it could affect you in the way it affected me.”

In another study, almost half of respondents stated that their doctors did not communicate the duration of time they were expected to be taking the medication. More than half were not informed about potential withdrawal effects.

CONCLUSION

According to the authors of the current study,

“Discontinuing psychiatric medication appears to be a complicated and difficult process, although most respondents reported satisfaction with their decision. Future research should guide health care systems and providers to better support patient choice and self-determination regarding the use and discontinuation of psychiatric medication.”

That is, there is a clear need for mental health professionals to listen to the experiences of the users of these medications. Treatment providers must be better equipped to guide and support users through the experiences of discontinuation.

 

****

Ostrow, L., Jessell, L., Hurd, M., Darrow, S. M., & Cohen, D. (2017). Discontinuing psychiatric medications: A survey of long-term users. Psychiatric Services, 68(7). https://doi.org/10.1176/appi.ps.201700070 (LINK)

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Peter Simons
MIA-UMB News Team: Peter Simons comes from a background in the humanities where he studied English, philosophy, and art. Now working on his PhD in Counseling Psychology, his recent research has focused on conflicts of interest in the psychopharmaceutical research literature, the use of antipsychotic medications in the treatment of depression, and the general philosophical and sociopolitical implications of psychiatric taxonomy in diagnosis and treatment.

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27 COMMENTS

  1. No surprise that the treating shrinks are no help in patients’ efforts to discontinue drug regimens, since that old chestnut of psychiatric belief of the “flight into illness” that occurs when treatment is allegedly becoming successful, never died with the rest of psychoanalytic thought.

  2. So more than half are able to discontinue successfully, and are happy with their decisions to do so, despite an almost complete lack of support by professionals. If half of your cohort can discontinue and are happy with the results, why the f*&k would you not be encouraging folks to try it? Kickbacks or meeting one’s own security needs at the expense of the client seem the only reasonable explanations.

    —- Steve

  3. It’s a tiny study but a good start. I want to commend the people who conducted this study, as well as the FEMHC for funding it. I’m thrilled that it was published. Praying that more and bigger studies in this vein will be funded in the future and that the body of data will grow until it becomes incontrovertible proof that the current paradigm of mental health needs to dramatically shift. Tens of thousands of individuals lives are at stake.

  4. How sophisticated. Researchers for “psychiatric services” crunch numbers, publish articles, and line their pockets while the lives of untold numbers of innocent people, including small children, the elderly, and the homeless, are destroyed by psychotropic drugging and psychiatric labeling. Sickening. Enough is enough. Slay the Dragon of Psychiatry.

    • I agree, this needs to be shouted from the rooftops. The “professionals” need to actually learn about the adverse effects of their drugs, since they’ve already misdiagnosed the adverse effects of the ADHD drugs and antidepressants as “bipolar” in over a million children, and God knows how many millions of adults.

      And the “professionals,” including the DSM writers, don’t even know that the “bipolar” and “schizophrenia” drugs, the antipsychotics/neuroleptics, can create what appears to the “mental health professionals” to be the negative symptoms of “schizophrenia,” via what is actually neuroleptic induced deficit syndrome. And the antipsychotics/neuroleptics can also create what appears to the “mental health professionals” to be the positive symptoms of “schizophrenia,” via what is actually anticholinergic toxidrome.

      https://en.wikipedia.org/wiki/Neuroleptic-Induced_Deficit_Syndrome
      https://en.wikipedia.org/wiki/Toxidrome

      Absolutely, “there is a clear need for mental health professionals to listen to the experiences [and research] of the users of these medications. Treatment providers must be better equipped to guide and support users through the experiences of discontinuation.”

      Current “mental health professionals” are actually breaking HIPPA laws, and other laws, to prevent people from living a drug free life, one of my former doctors was even eventually arrested for having many people medically unnecessarily shipped long distances to himself for profit.

      http://www.chicagotribune.com/news/local/breaking/ct-sacred-heart-hospital-verdict-met-20160304-story.html

      It’s all about the love of money for today’s “mental health professionals.” And that is, of course, the root of all evil.

  5. “Likewise, 76% of the participants were taking antidepressants. 56% were taking anxiolytics, and 47% were taking antipsychotics. Participants may have also been taking mood stabilizers (38%) and stimulants (13%).”

    I sure would love to get off the lithium i’ve been taking for 14 years but I’ve yet to see any successful studies about the particular drug I seem to be stuck with.

    • No studies. But I did it. And I know I’m not the only one. If you wait for the studies it won’t happen – lithium has been around for decades – and there are still no studies like this.

      And you should do it too, because while lithium can protect against alzheimers and has mood benefits in microdoses – in medical doses it destroys kidneys.

      Maybe it will take 3 years, maybe 5, maybe 10 – or maybe it will wait until that hot summer’s day when you take a long hike and get dehydrated.

      For getting off, it’s the same as any drug, really. Taper 10% of previous dose per month. If you have symptoms, stop tapering and hold until symptoms subside. It took me 2 years to taper lithium and an antidepressant. It helps to have doctors support (I gave my an ultimatum: you can help, or I will find someone else. I’d rather it be you, since you know my history, but I will do this, and I’d prefer your help to anothers. She caved.). If your tablets are XR, be prepared to take them 2x a day as trimming your doses eliminates any XR coating..

      I became interested in life again. I developed hobbies which became passions which rolled over into helping others. I could read books and retain information better (still cognitively slow from the other drugs, but much much better). Lithium had wrapped me in cotton wool, and as I gradually came out from under it, life became brighter and more worthwhile.

      I’m still probably “bipolar.” But I take responsibility for my moods, words, and actions, and don’t need to get caught by the system ever again. I rest when I’m down, I act when I’m up. I enjoy both.

      http://www.survivingantidepressants.org to help you taper.

    • No, you’re not the only one, and i’m so glad to hear that it worked out well for you.
      My husband was on lithium for about 20 years, along with an antipsychotic. He tapered off (with no doctor support, as no doctor would give it), and went psychotic, slowly. Then, after a brief, nasty episode with another doctor who prescribed valproate, he got on Geodon to replace both the lithium and the risperdal. Then he got off the geodon (a very small dose, which was quite enough, thank you) although he doesn’t actually know it… I empty out the capsules. He’s been fine. Although some people such as psychiatrists wouldn’t agree, because for them, being in touch with your emotions and consequently getting angry, sad, down etc. from time to time is what they define as illness.
      I’m not suggesting that someone switch drugs in order to stop entirely – although I know there is such a thing and it can help – it’s just that that’s the way it worked out for us. Because we had little kids, and taking time off to figure things out wasn’t an option, it wasn’t possible to work through the psychotic thoughts and come out stronger the other side. But gradually, that is what my husband is doing, from a more stable position, and things are already so much better.
      Hey Sascha, don’t give up! You can do it! Just make sure you have good people around you to help and care.

      • My experience of being taken off lithium was similar to Julia’s husband’s. I wasn’t properly weaned off of it by the doctor, so I ended up with a drug withdrawal induced super sensitivity manic psychosis.

        But it was an amazingly cool and serendipitous “psychosis,” or I prefer to call it a spiritual awakening. I, too, was briefly remedicated, then weaned off the drugs again.

        You can do it, Sascha, just have friends and family, including yourself, be prepared for a potential drug withdrawal induced super sensitivity manic psychosis. And know this will be misdiagnosed as “a return of the illness,” if you land in a hospital, so you’re better off with forewarned friends or family.

  6. I have been extremely fortunate to have a mental health professional who is very knowledgeable. She has explained how the drugs work, how they may affect me – positively and negatively. She has also helped me to decrease medications when I have asked her to help me. Unfortunately, there are many professionals in this field that are not helpful, innovative or well educated. I don’t think this is a flaw in psychiatry but a flaw in education and practice of the individual professionals within the field.

    • Maybe you’re fortunate to have a “professional” who cares, but she doesn’t know how the drugs work! Nobody does… She explained how the drugs “may” affect you, which is a way of hedging her bets, as nobody can predict how any individual will respond. Personally, coffee calms me down, but it makes my husband manic. Of course none of the “professionals” advising us along the way ever suggested that my husband avoid coffee. Advocate mom, you have to be your own best advocate, because no “doctor” is going to do it for you.

      • Please don’t make blanket statements about ALL drs because there are some good ones. And, please don’t doubt me and my experiences or imply that my doctor doesn’t care about me. I started with the dr. after I was released from an intense out patient program and was on NINE drugs and that had ridiculous side effects. She carefully weaned me off seven of them and we tweaked 2 others for about a year and I have been mostly stable for 8 years. No, she can’t KNOW how it will affect me but she tells me the science of why it may work. She also tells me about the side effects that may happen and to let her know how I am doing. It is sometimes more of an art than a science because everyone is different and metabolizes things differently. I know most of you are having or have had bad experiences but the are good practitioners out there. I have found a good one who listens to me.

          • Please, a name? I have friends in Bloomington Indiana, and I would like to help them. There are a lot of docs in Bloomington Indiana, most of them are in one of 2 stables: IU Medical (lots of pharma funds) and Premier Healthcare (hands tied corporation). There is only one doctor who is not in the stable – the ones in the stable have to use insurance protocols, and I lived there for 10 years and had to fight to advocate for my own health care to be “minimal.”

            Is this Lambrecht? I thought she wasn’t taking new patients.

          • Her name is Judy Goodwin and she is at Meadow’s Outpatient Clinic. Bloomington is a great city but there is such a lack of providers. Best of luck to your friend.

          • Thanks. Meadows is owned by UHS which is under investigation by FBI for keeping patients longer to maximize profits. Bloomington Meadows may not be one of the hospitals involved, but all indications are that the pressure to “perform” is system wide.

            It may be better on the outpatient side!

            I’m glad you found a doc you like! I’ll keep her name on file.

  7. I used to think they were ignorant about the side effects and withdrawal symptoms, but now I think they know all too well about them, and keep it a secret from us, because they don’t care about our physical health, and because they know the withdrawal symptoms will make most of us crawl back to them and ask for more “help” from them, and get back on our meds. The side effects can be used to tell us our mental illness is getting worse, so we need more meds to deal with more symptoms.

  8. Thank you, AdvocateMom and JanCarol, for all the info. By the way JanCarol, I think that all the psychiatrists do that (keep their patients around for much longer than necessary). My current dr., who’s actually a psychiatric nurse practitioner, is doing this. She seems to want to drag out our silly, stupid, timewasting sessions for as long as possible in order to keep billing the insurance.