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White, 2021 The role of Facebook groups in the management and raising of awareness of antidepressant withdrawal: is social media filling the void left by health services?


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Therapeutic Advances in Psychopharmacology January 17, 2021; https://doi.org/10.1177/2045125320981174

 

The role of Facebook groups in the management and raising of awareness of antidepressant withdrawal: is social media filling the void left by health services?

 

Edward White, John Read, and Sherry Julo

 

Full text at: Sage Journals

 

Please note this article is discussed over on the Mad in America site here - Facebook Groups Provide Psychiatric Drug Withdrawal Help When Doctors Don’t

 

Abstract

Background:

Antidepressant withdrawal is experienced by about half of people who try to reduce or come off their medication. It can be a debilitating, long lasting process. Many clinicians misdiagnose or minimise symptoms, inadvertently prolonging suffering. Most are unable to help patients safely taper off. There has been little research into the peer support communities that are playing an increasingly important role in helping people withdraw from psychiatric medications.

Methods:

To illustrate the growth and activities of Facebook withdrawal groups, we examined 13 such groups. All were raising awareness of, and supporting individuals tapering off, antidepressants and were followed for 13 months. A further three groups were added for the last 5 months of the study.

Results:

In June 2020, the groups had a total membership of 67,125, of which, 60,261 were in private groups. The increase in membership for the 13 groups over the study period was 28.4%. One group was examined in greater detail. Group membership was 82.5% female, as were 80% of the Administrators and Moderators, all of whom are lay volunteers. Membership was international but dominated (51.2%) by the United States (US). The most common reason for seeking out this group was failed clinician-led tapers.

Discussion:

The results are discussed in the context of research on the prevalence, duration and severity of antidepressant withdrawal. We question why so many patients seek help in peer-led Facebook groups, rather than relying on the clinicians that prescribed the medications. The withdrawal experiences of tens of thousands of people remain hidden in these groups where they receive support to taper when healthcare services should be responsible. Further research should focus on the methods of support and tapering protocols used in these groups to enable improved, more informed support by clinicians. Support from Governments and healthcare agencies is also needed, internationally, to address this issue.

 

 

Edited by Shep
added more bolding

Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

 

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Some points from the paper in relation to my experiences here in the UK:

 

Quote

Finally, in September 2020, the College published much improved and more accurate information on the subject and course of antidepressant withdrawal, which was greatly welcomed. It remains to be seen if this new advice will result in an increased awareness amongst practitioners of the issues people face when trying to stop these medications.

 

It certainly hadn't last time I spoke to one of my GP's.

 

Quote

Fully informed consent is crucial and currently severely lacking, as most of the people who seek support from Facebook groups are questioning the diagnosis of their healthcare provider when withdrawal symptoms emerge.

 

GP’s really don’t like you questioning their judgement. And the new sections in the GMC's guidelines on Informed Consent and Shared Decision Making don't seem to have had the slightest effect. (see: https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent/about-this-guidance )

 

Quote

More importantly, clinicians do not recognise the symptoms of antidepressant withdrawal, often misdiagnosing it as relapse of previous symptoms. There is also evidence of huge denial of withdrawal severity and duration from clinicians.

 

This is exactly what happened to me.

 

I’m extremely tempted to post a recording of the appointment with my GP where I tried to explain that I believed I was suffering protracted withdrawal. I showed my doctor the Citalopram leaflet that explains the possibility, and her response was to literally shout me down: “No! It isn’t possible!”, to tell me that if she prescribed me more of the Citalopram so I could try to reinstate that “You’d just have the same problems coming off it again” before suggesting “I could prescribe you a different antidepressant” to deal with the fact that I had, in her opinion, relapsed.

 

She completely destroyed any confidence I had left in the medical profession.

 

Quote

Lastly, the lay people who run these groups deserve a great deal of credit.

 

They most definitely do. They save people from the hell of Protracted Withdrawal Syndrome that I am currently suffering thanks to the fact that my GP’s are wilfully blind (in the legal sense: they could know, and should know, but choose not to know) about antidepressant withdrawal.


Sorry about the anger; it's the product of years of pain with no end in site and no hope of help. That said, I'm really glad this is, finally, being dragged out into the open so with time there will be less likelihood of it happening to anyone else.

1999 - 2001: Paroxetine 20mg

1999 - December 2017: Lansoprazole 15mg

2003: Venlafaxine 75mg

2003 - 2014: Escitalopram 20mg

2014 - December 2017: Citalopram 20mg

December 2017: Mirtazapine 30mg, stopped after 4 days due to immediate bad reaction

December 2017: Zopiclone 3.75mg, stopped after 2 days due to immediate bad reaction

January 2018 - April 2018: Citalopram liquid, tapering, final dose 0.1mg

December 2018 onwards: Vitamin C 1000mg

Long term (for asthma): Salbutamol and Salmeterol inhalers

Occasional use for headaches: Paracetamol 40mg or Ibuprofen 40mg

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@AlanC Hi again Alan.

 

No need to apologise for the anger, you've been through a terrible ordeal, it would be abnormal not to be.

 

With regards to the GP, i think doctors get very accustom to being 'the one in charge'. You as a patient (and in their eyes have no knowledge) come in, and they, the doctor tell you whats what. They have been told, and told others for years that SSRI withdrawal doesn't exist. Trying to convince them otherwise Is almost like trying to convince someone very religious that god isn't real.

 

I'm sure over time this will change, but for now it seems we are at the frustrating stage where the knowledge is emerging but not widely accepted. I'd imagine in 20 or so years, this will be a very different story.

 

There do seem to be some people who's doctors are at least open to the idea, perhaps try a different doctor/GP? I guess the second question though is what can they actually do about it?

 

As usual, hang in there.

Started Lexapro 5mg Mid March 2020

 

Increased to 10mg April 2020

Increased to 15mg June 2020

Decreased back down to 10mg July 2020

Decreased down to 5mg August 2020

Came off Completely September 2020

 

Hospitalised september 2021

Slowly worked up to 50mg lamictal and 60mg prozac

Severe agitation, terror/akathisia is returning

 

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  • 3 weeks later...

Thanks for posting this @Shep You beat me to it!

 

@AlanC Your experience is very, very common, and I had a similar one to you, although I'd been referred to psychiatric services where I would say it's even worse! Thanks for feedback. I am the author of the paper. I completely understand your anger and resentment. It's a travesty so many get treated this was and is pure ignorance on the part of the doctors! I am about to write a short article on the paper and others recently published to submit to the British Journal of General Practice.

 

If you haven't seen the latest from the Royal College of Psychiatrists it's here: https://www.rcpsych.ac.uk/mental-health/treatments-and-wellbeing/stopping-antidepressants

 

Its a good step forward!

 

2011 - started Venlafaxine (again) at 75mg Raised to 150 mg at some point - unsure of dates. Reduced back down to 75 mg. Doctor advised this would be a lifetime, maintenance dose

2017 - Side effects now intolerable. Started taper from June 15th - 5% dose reduction steps (two 12 hourly doses).

2017 - October 20th - took last dose of Venlafaxine - 4 mg. Debilitating symptoms followed.

2017/18 - diazepam - 8mg/day for 1 month - 7 week taper Feb 2018

2017/18 - duloxetine - max 90mg - now stopped

2018 - Feb 25mg quetiapine, increased to 50mg.

2018 - March/April - increased venlafaxine slowly (10mg steps) to 75 mg/day. Recovery from withdrawal followed.

2018 - July 13 - stopped quetiapine after 2 month taper. Late July - had to reinstate quetiapine due to intolerable withdrawal. Now tapering from 25mg

2019 - June - stopped quetiapine after 10 month taper. Mild insomnia only symptom.

2021 - June - venlafaxine approx 6.0 mg see Taper history details

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  • 1 month later...
  • Moderator Emeritus
ChessieCat

Youtube podcast:

 

 

FINISH LINE here I come!!!

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Current from 25 September 2021:  Pristiq 0.02mg

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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Prof. John Read gets quite brutal about misinformation from the drug companies - and how long it's taken RC Psych to react - around 34:51 in that podcast.

 

@Caspur: really good stuff, both in the paper and the podcast. It gives me hope.

1999 - 2001: Paroxetine 20mg

1999 - December 2017: Lansoprazole 15mg

2003: Venlafaxine 75mg

2003 - 2014: Escitalopram 20mg

2014 - December 2017: Citalopram 20mg

December 2017: Mirtazapine 30mg, stopped after 4 days due to immediate bad reaction

December 2017: Zopiclone 3.75mg, stopped after 2 days due to immediate bad reaction

January 2018 - April 2018: Citalopram liquid, tapering, final dose 0.1mg

December 2018 onwards: Vitamin C 1000mg

Long term (for asthma): Salbutamol and Salmeterol inhalers

Occasional use for headaches: Paracetamol 40mg or Ibuprofen 40mg

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  • 1 month later...
Nomansland

Prof. John Read comments on PsychologyToday about this paper: https://www.psychologytoday.com/gb/blog/psychiatry-through-the-looking-glass/202101/online-antidepressant-withdrawal-support-groups

 

Dr. Ed White on Sputniknews talks about his own Venlafaxin withdrawal and makes additional comments about his paper: https://sputniknews.com/analysis/202101181081805968-thousands-rely-on-social-media-support-groups-after-coming-off-antidepressants-doctor-says--/

2021 IMPORTANT WITHDRAWAL SURVEY, PLEASE PARTICIPATE: https://uelpsych.eu.qualtrics.com/jfe/form/SV_0AR9IsQ61jsiXBk

 

non-native speaker of english

3-March 2020: started Mirtazapine 15mg
3-March to 6-april aprx cutting to 0 mg
6-April to 20-April -> ~ 7,5 mg,

21-April to 31-April -> 15 mg,

1-May to 13-May -> ~ 10 mg (approx),

15-May to 19-July -> 15 mg (psychosomatic clinic)
started taper with scale and file: 19-July 2020 -> 14 mg (-6,6%), 08-August -> 12 mg (-14,3 %), 27-August -> 10 mg (-16,6 %), 15-September -> 8 mg (-20 %, bad idea, heavy WD) 23-September -> 10.2 mg (+20 %, 102 mgpw), 2021: 12-April to 12-May crossover from solid pill to DIY liquid, still 10,2 mg with windows and waves...

 

Supplements: 1 x ~125 mg magnesiumbiglycinate before bed, low histamin diet

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