Hengartner, 2020: Protracted withdrawal syndrome after stopping antidepressants: a descriptive quantitative analysis of consumer narratives from a large internet forum

[anacleta]

Protracted withdrawal syndrome after stopping antidepressants: a descriptive quantitative analysis of consumer narratives from a large internet forum

Michael P. Hengartner, Lukas Schulthess, Anders Sorensen, ****** Framer

 

First Published December 24, 2020 Research Article

https://doi.org/10.1177/2045125320980573

 

 

Abstract

Background:

Protracted withdrawal syndrome (PWS) after stopping antidepressants (frequently also referred to as post-acute withdrawal syndrome or PAWS) has been described in a few case reports. However, a detailed quantitative analysis of specific symptom manifestations in antidepressant PWS is still lacking.

Methods:

We extracted patient narratives from a large English-language internet forum SurvivingAntidepressants.org, a peer support site concerned about withdrawal from antidepressants. PWS was ascertained based on diagnostic criteria proposed by Chouinard and Chouinard, specifically ⩾6 months of continuous antidepressant use, with emergence of new and/or more intense symptoms after discontinuation that last beyond the initial 6 weeks of acute withdrawal. We assessed medication history, outcome of PWS, and the prevalence of specific symptoms.

Results:

In total, n = 69 individual reports of protracted withdrawal were selected for analysis. At time of the subjects’ most recent reports, duration of PWS ranged from 5 to 166 months, mean = 37 months, median = 26 months. Length of time on the antidepressant causing protracted withdrawal ranged from 6 to 278 months, mean = 96 months, and median = 79 months. Throughout the withdrawal experience, affective symptoms, mostly anxiety, depression, emerging suicidality and agitation, were reported by 81%. Somatic symptoms, mostly headache, fatigue, dizziness, brain zaps, visual changes, muscle aches, tremor, diarrhea, and nausea were reported by 75%. Sleep problems (44%) and cognitive impairments (32%) were mentioned less frequently. These broad symptom domains were largely uncorrelated.

Conclusion:

PWS or PAWS from antidepressants can be severe and long-lasting, and its manifestations clinically heterogeneous. Long-term antidepressant exposure may cause multiple body system impairments. Although both somatic and affective symptoms are frequent, they are mostly unrelated in terms of occurrence. Proper recognition and detection of PWS thus requires a comprehensive assessment of medication history, duration of the withdrawal syndrome, and its various somatic, affective, sleep, and cognitive symptoms.

 

FULL TEXT: https://journals.sagepub.com/doi/10.1177/2045125320980573

 

[Shep]

9 hours ago, anacleta said:

We extracted patient narratives from a large English-language internet forum SurvivingAntidepressants.org, a peer support site concerned about withdrawal from antidepressants. PWS was ascertained based on diagnostic criteria proposed by Chouinard and Chouinard, specifically ⩾6 months of continuous antidepressant use, with emergence of new and/or more intense symptoms after discontinuation that last beyond the initial 6 weeks of acute withdrawal. We assessed medication history, outcome of PWS, and the prevalence of specific symptoms.

 

It's great to see Alto's research and the stories of SA members being taken seriously in medical journals now. 

[AlanC]

It's very interesting to see a detailed scientific analysis of the experiences of SA members, and it confirms that the advice given by the moderators is exactly right. The section on the likely success of reinstatement was something I found particularly interesting.

 

It also reinforces the point that it's worth continuing to update our individual threads to provide information that can be used as the basis for research into withdrawal.

[Cruizer]

Firstly well done @Altostrata on your contiued work with this website as well as the study in this subject. I have watched a few interviews with you recently from the Medicating normal documentary also and I really hope that once the subject of Withdrawal syndrome actually begins to be accepted as an actual thing around the world instead of swept under the rug, you will get the recogntion you so deserve for all your efforts. 

 

I was sent an email today from SA regrding the zoom meeting that is being held shortly which included the link to this study. I read through the study and then read through it a second time hoping that I may have misinterpreted something.

I must say that when looking over figure 3 which is the outcomes of PWS I was rather horrified to read that only 5.8% recovered naturally and a further 17.4% were seeing improvements. This percentages combined are not even 1 in 4 people. This was in contrast to 21.7% who confirmed ongoing issues with PWS and 15.9% who had to reinstate some type of drug to help. 

 

When I read through this forum I look for hope as I assume the majority of other people do that come on to SA that are still in the midst of tapering or PWS. When looking for hope and reassurance I often read the success stories section as well as a lot of Brass Monkeys info on tapering etc. I would say the clear message that this forum relays is that “with time everyone will eventually recover” no matter how they got off of the drugs. Obviously a more turbulent ride for fast tapers of CT but none the less hope for everyone to eventually “recover.” 

 

Now I am still on a low dose of Sertraline so am not in PWS as yet but when I read this study this kind of gives me the opposite feeling especially figure 3. I kind of thought the start of the study was suggesting all 69 subjects recovered just over different time frames, but figure 3 really through me and has me petrified as the numbers from this study are suggesting PWS is more likely to persist than someone recover from? I apologise if I am way off here but this is how I have interpreted this. I would love to hear your feedback Alto. 

 

Thanks

[Shep]

On 1/10/2021 at 5:41 AM, Cruizer said:

I must say that when looking over figure 3 which is the outcomes of PWS I was rather horrified to read that only 5.8% recovered naturally and a further 17.4% were seeing improvements. This percentages combined are not even 1 in 4 people. This was in contrast to 21.7% who confirmed ongoing issues with PWS and 15.9% who had to reinstate some type of drug to help. 

 

There were only 69 people in this study, which originated from a forum where you're likely to find people who are suffering more than people who go off the drug and get on with their lives. Also, note this segment of figure 3 - "More than one-third of the sample was lost to follow up, thus their outcome was unknown."  So they may have recovered and simply moved on with their lives. We don't know. 

 

Also, note the timeframe for this study: "duration of PWS ranged from 5 to 166 months, mean = 37 months, median = 26 months."

 

Many people heal outside this 2 - 3 year range (median and mean), so some of the people who reported not healing within the timeframe of this study may still go onto heal a few months or years later. And not healing completely doesn't mean people aren't experiencing improvements along the way. Very few people heal overnight. 

 

I wouldn't go into catastrophic thinking over this or any other study. There are simply too many unknowns. 

[Cruizer]

Hi Shep, thanks for the response i appreciate it. I had a bit more of a think about it this morning and i agree with what you have said. The study suggests these were CT or some kind of taper which we all know could mean a taper over a few weeks or months which are more likely to resulting PWS and a longer recovery time. 

And yes a bit of catastrophic thinking from myself here, just in a tough spot at the moment with a very sensitive system and took everything negative i could out of thst study. 

Thanks again for the response and support. 

[Altostrata]

15 hours ago, Cruizer said:

I must say that when looking over figure 3 which is the outcomes of PWS I was rather horrified to read that only 5.8% recovered naturally and a further 17.4% were seeing improvements. This percentages combined are not even 1 in 4 people. This was in contrast to 21.7% who confirmed ongoing issues with PWS and 15.9% who had to reinstate some type of drug to help. 

 

On the positive side, we were able to record nearly 1/4 of the study population had recovered or seen improvements.

 

Unfortunately, we do not know the outcome for about 1/3 of the study population, because they had not posted recently about their progress. I expect many of these people had seen some improvement or fully recovered.

 

From our findings, it appears that recovery from antidepressant PWS may take 2-3 years, coincidentally the same amount of time given for recovery from addictive drugs after "detox".

 

This is not a pretty picture, but it is not a hopeless picture, either.

 

As @AlanC pointed out, it would be very helpful if people came back and reported their progress in their Introductions topics or recovery in the Success Stories forum. I would like everyone to know they can "pay it forward" by doing this service for the community.

[Shep]

Please note the recent writeup of this study over on the Mad in America site:

 

Researchers Document Protracted Withdrawal from Antidepressants

 

[SelmaLady]

@Altostrata

 

From an article in Sage Journals from statistics gleamed from SA:

 

 

"As with other psychotropics, the potential for antidepressant PWS is embedded in pharmacodynamic adaptations and possibly irreversible neurophysiological alterations following prolonged drug exposure.^19,20,31 These processes, including receptor downregulation and desensitisation, are best understood as physical dependence,²⁰ and were also subsumed under the oppositional model of tolerance by Fava.³⁰ An extended amount of time may thus be required to re-adapt to the absence of the drug after physical dependence has developed (not to be confused with addiction).^20,32 Some patients may recover spontaneously or after re-instatement of the antidepressant, others require a much longer time: months or years. However, hypothetically, prolonged antidepressant exposure could also cause permanent neurophysiological alterations, comparable with tardive dyskinesia after long-term antipsychotic use,³³ with unremitting, chronic, withdrawal symptoms.^30,34 In any case, the neurophysiology of protracted withdrawal is poorly understood."  Dec 24, 2020

 

There is also the same conclusion listed in an article in Sky News from 2020 quoted from the NHS

 

What are your thoughts on this after having seen prolonged recoveries?

 

[Altostrata]

Since I am a co-author of that paper, what I think is contained within it.