Study,Nov/20:'Patient voice'--patients who experience antidepressant withdrawal

The full title of this UK study is "The 'patient voice': patients who experience antidepressant withdrawal symptoms are often dismissed, or misdiagnosed with relapse, or a new medical condition".

 

https://pubmed.ncbi.nlm.nih.gov/33224468/

 

Abstract

 

Background: Stopping antidepressants commonly causes withdrawal symptoms, which can be severe and long-lasting. National Institute for Health and Care Excellence (NICE) guidance has been recently updated to reflect this; however, for many years withdrawal (discontinuation) symptoms were characterised as 'usually mild and self-limiting over a week'. Consequently, withdrawal symptoms might have been misdiagnosed as relapse of an underlying condition, or new onset of another medical illness, but this has never been studied.

 

Method: This paper outlines the themes emerging from 158 respondents to an open invitation to describe the experience of prescribed psychotropic medication withdrawal for petitions sent to British parliaments. The accounts include polypharmacy (mostly antidepressants and benzodiazepines) but we focus on antidepressants because of the relative lack of awareness about their withdrawal effects compared with benzodiazepines. Mixed method analysis was used, including a 'lean thinking' approach to evaluate common failure points.

 

Results: The themes identified include: a lack of information given to patients about the risk of antidepressant withdrawal; doctors failing to recognise the symptoms of withdrawal; doctors being poorly informed about the best method of tapering prescribed medications; patients being diagnosed with relapse of the underlying condition or medical illnesses other than withdrawal; patients seeking advice outside of mainstream healthcare, including from online forums; and significant effects on functioning for those experiencing withdrawal.

 

Discussion: Several points for improvement emerge: the need for updating of guidelines to help prescribers recognise antidepressant withdrawal symptoms and to improve informed consent processes; greater availability of non-pharmacological options for managing distress; greater availability of best practice for tapering medications such as antidepressants; and the vital importance of patient feedback. Although the patients captured in this analysis might represent medication withdrawal experiences that are more severe than average, they highlight the current inadequacy of health care systems to recognise and manage prescribed drug withdrawal, and patient feedback in general.

 

 

 

Full Study:

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7659022/pdf/10.1177_2045125320967183.pdf 

 

Note: BenzoBuddies is mentioned in the full study as place where people seek information and peer support when they are unable to get their needs met through their doctors (GPs or psychiatrists).

 

Here's the quotation from page 7:

 

As  a  result  of  their  interaction  with  their  treating  doctor, many patients sought help elsewhere: 25% of  responders  sought  help  from  websites  (e.g.  Surviving  Antidepressants  and  BenzoBuddies),  8%  sought  help  from  a  prescription  drug  charity,  18%  of  responders  sought  advice  from  Facebook  groups  and  1%  sought  advice  from  the  National  Health Service (NHS). 

 

Respondents commented:‘I have nobody I can discuss any of this with and I am really  shocked  that  there  is  no  support  or  information  whatsoever available to people in my position.'

Thank you, Lapis2.  Your efforts to keep our community informed about current, relevant research are much appreciated!

My pleasure, Libertas! This one is really good -- and really important. I'm just starting to read the full paper, and so far, it's excellent. It's telling it like it is. And I can speak from experience about antidepressant withdrawal, having experienced it twice, along with withdrawal from two different benzos. I'm so, so, SO glad to see this paper!

I like this paper too. I have formed a view on the patient journey when it comes to psychotropic medications based upon my personal experience as well as a substantial number of anecdotes from here and elsewhere. The diagrams in this paper cover all the failure points that I identified and even put a little more flesh on the bones. I don't see much changing quickly but these are positive noises.

I like this paper too. I have formed a view on the patient journey when it comes to psychotropic medications based upon my personal experience as well as a substantial number of anecdotes from here and elsewhere. The diagrams in this paper cover all the failure points that I identified and even put a little more flesh on the bones. I don't see much changing quickly but these are positive noises.

 

Absolutely! Well said, diaz-e-BAM. It's an important validation of the experiences of people like us. I do hope it's widely read by those who most need to see it -- that is, general practitioners and psychiatrists.

 

Thank you Lapis . I think that we all have horror stories to share . Mine is typical and goes like this.

I landed up in E. R with a severe case of flu . My fever was spiking at 104 . To protect myself against unwanted meds  I carefully explained the problem of benzo withdrawal to the triage R.N only to be laughed at and told that it was all in my head . Withdrawal in his opinion only last a month at max ( We wish !!!!! )

He said I needed to relax and tried to force feed me an ativan . At this point it turned into a power struggle which of course I won because there was no other alternative . No way was I going to swallow a benzo  . To have to be combative and assertive when I was sick as a dog was wrong . Things have to change

I forgot to mention ER doctors in the list of those who most need to read this study! That's awful, brave rabbit. I'm sorry you had to go through that.

I wonder why some people can taper off of some of these drugs with little effort, while others suffer from all kinds of side effects.  Some of this has to do with the individual themselves, biologically and genetically.

 

I was on Zoloft and Ambien for over 3 years after a car accident that left me disabled (drunk driver hit me, twice!). I had been diagnosed with PTSD. I finally had enough of the drugs, and felt I had moved on. I easily weaned off the Zoloft, then the Ambien. I have no recollection of suffering any side effects other than some minor annoying stuff. But my niece had a hell of a time weaning of Zoloft, she's had problems stopping any SSRI/SSNRI drugs, but Zoloft was the worst.

 

I later had a doctor try Zoloft, then Cymbalta for my Fibromyalgia Syndrome, I wasn't on either for long, and weaned off in a week of both because neither helped.

 

My genotype indicates that I have less potential for addiction/dependency than those not having the same pair of SNP's (Single Nuclear Peptides).

 

I weaned off 20 years of Narcotic use for chronic intractable pain, followed by a year of PAWS that was physical, not psychological. That was difficult, but not the worst. Clonidine and Loperamide were my friends and I slowly tapered. I have the Physiatrist who did two Radio Frequency Nerve Ablations to thank for that, they were succcessfull. He had believed he could free me from needing Opioids, I thought I'd never be able to stop, but 4 years later I no longer need those pain meds. Only thing I use is Lidocaine 5% ointment and ocassional OTC pain reliever.

 

Now I have to deal with the Benzo Beast, and nothing has been like this. When they say it's easier to get off Narcotics then this, they aren't kidding. On top of this I'm autistic, so my atypical brain isn't wired like you neurotypicals. I've been dealing with more autism behaviors like perseveration and stimming. The stimming hasn't been this bad since I was a child. I've been perseverating over getting off the Benzos, and I want it done faster than my body will allow. I wonder if Benzos effect people with Autism differently.

 

I'm hoping my genotype will be in my favor, but I have no way of knowing. We all just plod along day after day, dealing with symptoms and how to handle them.

 

And doctors are clueless as to what these mind-altering drugs are doing to patients, they think they are helping them. Only doctors going through this understand. It was one such doctor, on his blog, that led me here to BB. He himself had been prescribed a Benzo and had no clue as to w/d's until he tried to stop. He found a lot of help here, and warned fellow doctors they needed to educate themselves on Psychiatric medications, and stop prescribing them so willy-nilly. 

 

This article was so elightening, TY for posting the link. Now if we can just get the doctors to read it... 

Wow, what a story! Thank you for sharing that, BenzoLottie.

 

I absolutely do think that individual genetics play a huge role in how we metabolize medications while on them and during and after withdrawal as well. There are many factors, including liver and kidney health, age, other health issues, concurrent medications, etc. For women, changing hormones can factor in as well. I'm not familiar with any male-specific hormonal issues, but I'm sure it's possible. Much of the research is done on male rats and mice, since there's no estrus cycle to deal with.

 

 

 

 

Thank you Lapis

You're welcome, Agentic!