Jump to content

Psychiatric Medication Discontinuation/Reduction (PMDR) Study


KimmieK
 Share

Recommended Posts

http://www.madinamerica.com/2016/06/moving-forward-in-the-science-of-psychiatric-medication-discontinuationreduction/

 

This week Live & Learn launched a research study on the experience of people labeled with mental disorders who have tried to stop taking psychiatric medications. This project -- the Psychiatric Medication Discontinuation/Reduction (PMDR) Study -- aims to understand the process of coming off psychiatric medications in order to better support those who choose to do so. The study seeks to answer the question: What helps people stop their psychiatric medications? What gets in the way of stopping?

 

All of the people working on this project have personal experience with psychiatric treatment and coming off psychiatric medications. In addition to myself (Laysha Ostrow, PhD), the team includes Vanessa Krasinski, MSN, RN, and Lauren Donahue, MSN, RN. The PMDR study received pilot funding from the Foundation for Excellence in Mental Health Care, and administrative support and technical support from Lauren Jessell of NYU’s Silver School of Social Work, and Bevin Croft and Human Services Research Institute. Dina Tyler and Will Hall act in an advisory role.

 

The PMDR study is not about whether people should take psychiatric medications or not. Sometimes people who take psychiatric medications choose to stop, but may struggle to find the information or support they need. Providers who want to help often lack evidence to guide people. The study is about understanding the options for stopping psychiatric medications when people choose to stop, or when they must. My personal experience was that when I stopped taking psychiatric medications, I didn’t feel that I had any options because I didn’t know what my options were. Even though my psychiatrist was supportive of my plan, he knew next to nothing about stopping psychiatric medications. That is because there is no research on how to support people undergoing this process. That is why this research project is important. We need to take steps to create guidance on helpful options when people stop taking psychiatric medications -- whatever their reason for stopping.

 

Our team created this survey based on what existing work in the field we could find that was relevant, as well our own experiences as people who had gone through the process of stopping psychiatric medications, and supported others in doing so. We hope this pilot study will foster more in-depth and robust research in the future. This survey is the first step in what we hope will be an expanding subject that builds evidence-based recommendations for supporting people coming off medications.

 

If you would like to participate in this study, you will first complete a screening questionnaire. If you are eligible, you will continue to the survey. It will take you about 20 to 30 minutes to complete the survey. Your answers will be anonymous. Your answers will be combined with others' when we report results.

 

WHO CAN PARTICIPATE?

 

Adults ages 18+ in the United States who meet the following criteria:

 

● Labeled with a psychiatric diagnosis, such as schizophrenia, schizoaffective disorder, schizophreniform disorder, psychosis NOS, bipolar disorder I, bipolar disorder II, bipolar disorder NOS, major depressive disorder.

 

● In the last five years, took prescribed psychiatric medications for at least nine months before trying to come off them.

 

● Had a goal to completely stop taking one or two medications in the past five years.

We are particularly interested in hearing from people of color and people who have experienced poverty.

 

Your answers will be anonymous.

 

TAKE THE SURVEY

 

The survey will ask you about:

 

Your motivation for stopping medications.

Supports you used.

How you feel about stopping medication.

 

Your responses to this survey will help better support people coming off psychiatric medications.

PLEASE SHARE THIS ANNOUNCEMENT WIDELY!

 

Link to study

 

http://myemail.constantcontact.com/Psychiatric-Medication-Discontinuation-Reduction-Study-Seeking-Survey-Participants-with-Lived-Experience.html?soid=1118520224240&aid=0Sy6hnqL-O8

Edited by mammaP
Added link
Link to comment
Share on other sites

  • Moderator

Hi Kimmie--  This sounds like a very interesting study and as you stated it is a starting point for more research.  I have been on paxil for 23 years now and would love to participate but like very many people taking these meds I do not have a psych diagnosis.  The spectrum of nondiagnosis reasons for being on these meds is amazing. Ranging from anger issues (mine) to PPD, my dog died, normal grief, nail biting, stuttering, public speaking to name a few.  Hopefully in the future this study could be expanded or another one initiated that would cover these issues also because I have seen a different mind set between people with a predrug psych DX and people with "ordinary problems" who ended up being medicated.

 

Also there is the question of the timing of the psych DX. Did it come before or after the drugs were started?  Over the years I have seen many people who have started medication for "ordinary problems" end up with psych DXs after the drugs were initiated and the side effects started to show up.

 

You've probably already thought of these avenues while designing this study, but I wanted to bring them up as concerns of the community.

 

Brassmonkey

20 years on Paxil starting at 20mg and working up to 40mg. Sept 2011 started 10% every 6 weeks taper (2.5% every week for 4 weeks then hold for 2 additional weeks), currently at 7.9mg. Oct 2011 CTed 15oz vodka a night, to only drinking 2 beers most nights, totally sober Feb 2013.

Since I wrote this I have continued to decrease my dose by 10% every 6 weeks (2.5% every week for 4 weeks and then hold for an additional 2 weeks). I added in an extra 6 week hold when I hit 10mg to let things settle out even more. When I hit 3mgpw it became hard to split the drop into 4 parts so I switched to dropping 1mgpw (pill weight) every week for 3 weeks and then holding for another 3 weeks.  The 3 + 3 schedule turned out to be too harsh so I cut back to dropping 1mgpw every 4 weeks which is working better.

Final Dose 0.016mg.     Current dose 0.000mg 04-15-2017

 

"It's also important not to become angry, no matter how difficult life is, because you can loose all hope if you can't laugh at yourself and at life in general."  Stephen Hawking

Link to comment
Share on other sites

Hi BrassMonkey - just to clarify I am not involved in this study. I copied the article from the Mad in America website. And yes I agree with you on concerns about the timing of diagnosis etc. I just hope more studies like this are done and wanted to share with the community here.

Link to comment
Share on other sites

I'm on the same board with brass being put on the meds for a bad headache, and never got diagnosed by any doctors as once I started having problems from tapering, I knew it's WD so never tried to get diagnosed by others.

 

I will check on the original link see if they would modify the eligibility. Having this subpopulation in a study could draw an additional yet significant conclusion on how invalid the concept of chemical imbalance and/ or underlying disease relapsing are.

Drug free Sep. 23 2017

2009 Mar.: lexapro 10mg for headache for 2 weeks.

2009-2012: on and off 1/4 to 1/3 of 10mg

2012 June--2013 Jan,: 1/4-1/3 of 10mg generic, bad jaw pain

2013 Jan-Mar: 10 mg generic. severe jaw and head pain;

2013 Mar--Aug. started tapering (liquid ever since) from 10 to 5 (one step) then gradually down to 2.25 mg by July. first ever panic attack, severe head/jaw pain

2013 Aug.: back to 2.75 mg; Nov: back to Brand Lex. 2.75mg -- 3mg,

2014 June: stopped PPI, head pressure/numbness. up-dosed 4.5mg, severe reaction mental symptoms added on

2014 Aug--2015 Aug: Micro taper down to 3.2mg, .025mg (<1%) cut holding 2-3 weeks.

2015 Aug 15th, Accidental one dose of 4.2mg. worsening brain non-functional, swollen head, body, coma like, DR

2016 Feb., started dosing 10am through 11 pm everyday 2/13--3.2mg, 3/15-- 2.9mg, 4/19-- 2.6mg, 6/26--2.2mg, 7/22 --1.9mg, 8/16--1.8mg,8/31--1.7m g, 9/13--1.6mg, 9/27--1.5mg, 10/8--1.4mg, 10/14--1.3mg, 11/1--1.2mg, 11/29--1.1mg, 12/12--1mg, 12/22--0.9mg

2017: 1/7--0.8mg, 1/15--0.7mg, 1/17--0.6mg, 1/20--0.52, 1/21--0.4mg, 1/22--0.26, 1/23--0.2, 2/13--0.13mg, 2/20--0.06mg, 3/18--0.13mg, 6/1--0.12mg, 7/6--0.1mg, 7/14--0.08mg, 8/17--0.04mg, 8/20--0.03mg, 8/28--0.02mg, 9/6--0.0205mg, 9/8--0.02mg, 9/17--0.015mg, 9/20--0.01mg, 9/21--0.0048mg, 9/22--0.0001mg,

Link to comment
Share on other sites

  • Moderator

Hi Kimmie-- thanks for clarifying.  I'll take a look at the MIA site and see what's going on.

20 years on Paxil starting at 20mg and working up to 40mg. Sept 2011 started 10% every 6 weeks taper (2.5% every week for 4 weeks then hold for 2 additional weeks), currently at 7.9mg. Oct 2011 CTed 15oz vodka a night, to only drinking 2 beers most nights, totally sober Feb 2013.

Since I wrote this I have continued to decrease my dose by 10% every 6 weeks (2.5% every week for 4 weeks and then hold for an additional 2 weeks). I added in an extra 6 week hold when I hit 10mg to let things settle out even more. When I hit 3mgpw it became hard to split the drop into 4 parts so I switched to dropping 1mgpw (pill weight) every week for 3 weeks and then holding for another 3 weeks.  The 3 + 3 schedule turned out to be too harsh so I cut back to dropping 1mgpw every 4 weeks which is working better.

Final Dose 0.016mg.     Current dose 0.000mg 04-15-2017

 

"It's also important not to become angry, no matter how difficult life is, because you can loose all hope if you can't laugh at yourself and at life in general."  Stephen Hawking

Link to comment
Share on other sites

I would like to participate in this survey but I was put on ADs for insomnia. This is a good survey so maybe one day doctors will get wiser on tapering and withdrawal from these meds. Thanks for putting it up.

 

Marie

10/13--10/14 Ambien. Started tapering 1/14  Jumped 10/14.  Done.                                                                              

3/14        7.5 Remeron  still taking this.                              

2/14         75 Trazodone   -    Tapered by dry cutting all the way down.

1/16        4 mg Trazodone  -  Jumped. Bad mistake. Got hit with late withdrawal 6 weeks later. Had to reinstate.

4/16        Reinstated 1 mg, updose to 2 mg Trazodone

2/19        .04 Trazodone. Walked off.  Done.

10/3/19  Started 7.5 Mirtazapine taper cut to .073 gram weight, pill weighs .076

4/5/20    New Mirtazapine Taper - Compound Liquid 7.35 mg April '20, 7.25 mg May, 7.05 mg June, 6.99 mg June, 6.78 mg July, 6.57 mg Aug, Sept 6.35 mg, Sept 6.24 mg, Sept 6.21 mg, Oct 5.99 mg, Oct 5.90 mg, Oct 5.70 mg.

1/11/21 6.05 mg Messed up taper due to syringe change. Must remember the 1 ml syringe contains 1.5mg! 1/16/21 5.99 mg

2/21 5.75 mg, 3/21 5.6 mg, 4/7 5.45, 4/14 5.30, 5/12 5.15, 5/25/21 4.99 mg, 6/29 4.87 mg, 7/14/21 4.74 mg, 8/5 4.62 mg 8/17 4.5 mg, 8/30 4.38 mg,9/16 4.26 mg,10/9 4.14 mg, 10/23 4.05 mg, 11/6 3.96 mg,11/17 3.87mg.

 

Link to comment
Share on other sites

I wonder what a study about people put on psych drugs for non psych reasons would show if anything... is there any difference in the wd... more protracted ect.. I wonder. 

WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

Link to comment
Share on other sites

  • Moderator

Yay.  I am so glad someone posted this.  I was just browsing FB and Will Halls post came up as to this research study.  So I came here to share and voila'.........found this post.

 

Thanks Kimmie.......it looks like the link you gave will take people right to it.  I didn't know how to link what I found but was going to try.......thankfully someone usually comes by and links what I refer to if it might have some value.  I think this study has value for sure.

 

I'm just excited about it.........and so glad you posted.  I will certainly pursue participating.  Yah......I have had the diagnoses.......and sure hope I am eligible enough.

 

If you guys without the diagnos(es) go to the link though there are some contacts that you might be able to use.......to express interest in being part of perhaps another research study sans diagnosis on just coming off psychoactive medication.    Just thinking though........easy enough to get a diagnosis, at least here in the States........just go see any shrink.  :mellow: (cynicism or sarcasm or reality? not sure)

 

Oh.....and 2 MSN RN's on the team........not I, but I still carry those letters too..........just kinda pretty cool I think. :)

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider. manymoretodays

 

Link to comment
Share on other sites

Why limit it to US citizens?

Thought for the day: Lets stand up, and let’s speak out , together. G Olsen

We have until the 14th. Feb 2018. 

URGENT REQUEST Please consider submitting  for the petition on Prescribed Drug Dependence and Withdrawal currently awaiting its third consideration at the Scottish Parliament. You don't even have to be from Scotland. By clicking on the link below you can read some of the previous submissions but be warned many of them are quite harrowing.

http://www.parliament.scot/GettingInvolved/Petitions/PE01651   

Please tell them about your problems taking and withdrawing from antidepressants and/or benzos.

Send by email to petitions@parliament.scot and quote PE01651 in the subject heading. Keep to a maximum of 3 sides of A4 and you can't name for legal reasons any doctor you have consulted. Tell them if you wish to remain anonymous. We need the numbers to help convince the committee members we are not isolated cases. You have until mid February. Thank you

Recovering paxil addict

None of the published articles shed light on what ssri's ... actually do or what their hazards might be. Healy 2013. 

This is so true, with anything you get on these drugs, dependance, tapering, withdrawal symptoms, side effects, just silent. And if there is something mentioned then their is a serious disconnect between what is said and reality! 

  "Every time I read of a multi-person shooting, I always presume that person had just started a SSRI or had just stopped."  Dr Mosher. Me too! 

Over two decades later, the number of antidepressant prescriptions a year is slightly more than the number of people in the Western world. Most (nine out of 10) prescriptions are for patients who faced difficulties on stopping, equating to about a tenth of the population. These patients are often advised to continue treatment because their difficulties indicate they need ongoing treatment, just as a person with diabetes needs insulin. Healy 2015

I believe the ssri era will soon stand as one of the most shameful in the history of medicine. Healy 2015

Let people help people ... in a natural, kind, non-addictive (and non-big pharma) way. J Broadley 2017

 

 

Link to comment
Share on other sites

Hi nz11,

 

That is a good question.    Frankly, I am disappointed they have limited it to people who took medications the last five years.   But I guess they have to set limitations initially before they can expand things.

Drug cocktail 1995 - 2010
Started taper of Adderall, Wellbutrin XL, Remeron, and Doxepin in 2006
Finished taper on June 10, 2010

Temazepam on a PRN basis approximately twice a month - 2014 to 2016

Beginning in 2017 - Consumption increased to about two times per week

April 2017 - Increased to taking it full time for insomnia

Link to comment
Share on other sites

I would like to participate in this survey but I was put on ADs for insomnia. This is a good survey so maybe one day doctors will get wiser on tapering and withdrawal from these meds. Thanks for putting it up.

 

Marie

Since so many ADs cause insomnia, I am stunned that doctors can continue to pull this crap.

Drug cocktail 1995 - 2010
Started taper of Adderall, Wellbutrin XL, Remeron, and Doxepin in 2006
Finished taper on June 10, 2010

Temazepam on a PRN basis approximately twice a month - 2014 to 2016

Beginning in 2017 - Consumption increased to about two times per week

April 2017 - Increased to taking it full time for insomnia

Link to comment
Share on other sites

Thanks for all your comments. I called the study and got some information to share. One thing is that the money they got is not a lot so it restricts how much they can do. I am not sure that not having a psych diagnosis makes you ineligible.

 

Hopefully more interest will be shown so more studies will happen.

Thanks again and please share this on social media too!

Link to comment
Share on other sites

  • Moderator Emeritus

**I am not a medical professional, if in doubt please consult a doctor with withdrawal knowledge.

 

 

Different drugs occasionally (mostly benzos) 1976 - 1981 (no problem)

1993 - 2002 in and out of hospital. every type of drug + ECT. Staring with seroxat

2002  effexor. 

Tapered  March 2012 to March 2013, ending with 5 beads.

Withdrawal April 2013 . Reinstated 5 beads reduced to 4 beads May 2013

Restarted taper  Nov 2013  

OFF EFFEXOR Feb 2015    :D 

Tapered atenolol and omeprazole Dec 2013 - May 2014

 

Tapering tramadol, Feb 2015 100mg , March 2015 50mg  

 July 2017 30mg.  May 15 2018 25mg

Taking fish oil, magnesium, B12, folic acid, bilberry eyebright for eye pressure. 

 

My story http://survivingantidepressants.org/index.php?/topic/4199-hello-mammap-checking-in/page-33

 

Lesson learned, slow down taper at lower doses. Taper no more than 10% of CURRENT dose if possible

 

 

Link to comment
Share on other sites

  • Moderator

Well......I did the survey.  I am not sure I will qualify for the study though as I am not a person of color, nor in poverty.

 

It took me about an hour to do the survey portion.

 

Some of the questions were hard for me........as I have come off so many meds. now...........but they referred to the last medication I came off.........as far as withdrawal and all.

 

Hmmmm.........I'm not sure it asked for contact info. anywhere either.  Maybe that was the study????  And they will analyze results of the questions?

 

I did throw in this sites name several times in answer to what has helped me with withdrawal.  There were questions about that......what has helped or what I have felt helped up to now.  So this site as well as other supports and things I do were included in my answers.

 

Interesting.

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider. manymoretodays

 

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...

Important Information

Terms of Use Privacy Policy