Escaping the Hell of Protracted Withdrawal Syndrome by Thomas Staczewski is a well written post on Mad in America this week. TS’s post links to an attractive Protracted Withdrawal Syndrome website he has, that has eye-catching imagery of brains. The bit, however, that really caught my eye was a suggestion – not quite an outright claim – that protracted withdrawal and PSSD are much the same thing. An approach that remedies protracted withdrawal will also lead to PSSD clearing up.
There is not a great deal of detail in Thomas’ MiA account as to how he set about helping himself, or might help you, other than ‘I placed a great deal of emphasis on physical activity’. This overlaps the approach Bob Fiddaman took over a decade ago – as outlined in his book The Evidence However is Clear When he spelt out exactly what he did rather than setting himself up as a Withdrawal or Deprescribing Coach, Bob perhaps missed a trick. Withdrawal management, tapering, de-prescribing is now a flourishing new industry/profession.
I’m pretty certain that Protracted Withdrawal and PSSD don’t always coincide – clear up one doesn’t mean the other clears. Roy Whaley is a remarkable example of this. Despite the disability linked to PSSD and the emotional numbing and apathy that go with this, for over a decade Roy has maintained extraordinary levels of both mental and physical activity, calling into doctors and pharmacists in several different countries, writing to politicians, taking part in one of the most Extraordinary Podcasts on a medical problem that I have ever seen, and getting his story into some of the most widely read popular newspapers – Antidepressants Killed my Sex Drive Forever.
Doing all this for over 15 years or so, there have been hints of some improvement in Roy’s PSSD, but the point is that he hasn’t also been grappling with what gets called protracted withdrawal syndrome at the same time. Roy’s other SSRI withdrawal problems cleared up a long time ago.
There are certainly people whose PSSD clears up in or around 4 to 5 years, something like the time course of the Menopause, some even sooner, but equally many like Roy who have been affected for 15 years or more, some up to 30 years and others suffering the damaging effects of SSRIs for 30 years or more – even after stopping – but is all this Protracted Withdrawal and how much overlap is there with PSSD?
Sevoflurane
Several other people’s experience sheds further light on this. One person in regular contact has reported distinct improvements in his PSSD, but not a long lasting cure, on Botox injected into the genital area. Botox has an effect on the cholinergic system.
Another reported a benefit from ECT – electroconvulsive therapy – which didn’t seem credible. It seemed more likely that the benefit came from the anaesthetic – usually Propofol – or a muscle relaxant called Rocuronium, which has some overlapping actions on the cholinergic system with Botox. The ECT effect seemed reliably repeatable but was brief – which is not surprising as ECT procedures only take 5 minutes, so there was little exposure to whatever might have been helping.
Several others have reported similar effects following operations but again only brief effects.
More recently someone has been in touch reporting an enduring 2 month effect after an operation. He has been able to access his surgical record and no muscle relaxant, Rocuronium or similar, was used.
This leaves Propofol, which is commonly used briefly to induce anaesthesia, and Sevoflurane which in this case was the anaesthetic used to maintain anaesthesia for what appears to have been a roughly two hour operation. This man woke up afterwards with an erection and everything apparently back to normal until the effect began to wear off 2 months later.
There was one other aspect to this operation worth mentioning – it did involve genito-pelvic area manipulations as might happen with hip-joint or lots of other operations.
Back when Rocuronium looked to me the likeliest candidate to be producing a benefit, I emailed 10 anaesthetists asking them would they be willing to put PSSD subjects to sleep briefly with Propofol and then give them Rocuronium – all lasting no more than 5 to 10 minutes – to see if there was any hint of an effect. They were told that I would pay for any time and facilities involved. None responded.
We now have a similar situation with Sevoflurane. While a longer action is needed, Sevoflurane might be a easier/safer than Rocuronium in that there is no need for an anaesthetist to give the person artificial respiration in the way there is with Rocuronium. The patient is just put to sleep rather than being paralysed.
We need anyone with PSSD who is undergoing an operation, whether they have a benefit or not, to check their medical records and let us know what anaesthetics they had, what the length of the operation was and whether there was any hint of a benefit afterwards.
It would be helpful to know whether Sevoflurane was given and did not help – in which case something else happened for this man or his response is individual and the only way to check it is for him to repeat the anaesthetic.
Anticholinergics
In general people have not been reporting back on the effects of possible antidotes. One person has reported taking benztropine for a month with little effect. I’ve asked him to continue and perhaps raise the dose and ideally persist for 3-6 months. I initially advised taking the lowest possible dose but this was being over-cautious.
There are two other anticholinergic options, Oxybutynin is one. This comes in a gel which could be applied to the genital area without taking a tablet. In tablet form the best bet is Oxybutynin Extended Release 10 mg.
The latest anticholinergic to come on my radar is Cyclizine. Anaesthetists use this regularly for dizziness and nausea. It is anticholinergic and an anti-histamine.
Finally one more person reported asking his primary care doc for Oxybutynin who said no and later his urologist who said they thought it would worsen brain fog. The idea that anticholinergic drugs in low dose are likely to worsen brain fog is a myth. This report does point to the difficulties you may find going down an anticholinergic route.
We also get enquiries about how Photobiomodulation is going. It would be good to get feedback, good or bad, from Photobiomodulators.
Lithium
In a recent post on Visual Snow triggered by SSRIs, lithium was mentioned as a possible stem cell trigger that might help with corneal problems.
The same effect might also help with sperm counts. SSRIs cause sperm counts to plummet. Sperm counts appear to return to normal after stopping SSRIs but it might take months or years. Lithium might help them recover quicker or might even help while taking an SSRI.
It would be great if people could get sperm tests done and let us know the results.
Protracted Withdrawal
Mad in America are running a Neuroplasticity and Protracted Withdrawal Webinar on August 17th.
There will be another MiA Webinar covering Antidepressant Induced Dysregulation and how to manage it featuring David Healy on September 7th Link will be provided closer to the time.
This Webinar will feature things learnt about antidepressants and handling the symptoms on stopping them that have been learnt from people reporting to RxISK – from you in other words who are the real experts on what works for you or might work for some, or work for some aspects of the problem, or what might work for others but makes things worse for you.
annie says
‘ Bob perhaps missed a trick. Withdrawal management, tapering, de-prescribing is now a flourishing new industry/profession. ‘
There are so many little groups, exploring all areas of what has been laid out in this post.
Bob’s book was a groundbreaker. I ordered two books directly from Bob and he wrote two very nice little messages in each one. I had planned to send one to my psychiatrist, who had the attention span of a newt, and who was not worldly wise.
I dipped out when I realised that GlaxoSmithKline could not be beaten.
Bob and friends went to Chicago to listen to the case of Stewart Dolin who threw himself under a train from Paroxetine. I would have given anything to go, and avidly read Bob’s transcripts of the case. What Wendy Dolin has done subsequently with MISSD shows just what people who know the truth can do. Akathisia is a killer.
And on it goes.
Children Dan and Romain, recently. All the children in the past, killing themselves because of antidepressants.
https://www.irishtimes.com/news/anti-depressants-to-blame-for-death-mother-says-1.652622
Leonie went to Chicago with Bob.
Victoria Derbyshire aired a programme, with Leonie from Ireland on
Bob crystallised, so much in his book.
I had hoped he would do a repeat act, but Bob, being Bob, has become a successful novelist.
Repeat acts are now the norm.
‘On heat’ is a new norm.
There are a ton of articles on ‘heat’ while taking antidepressants –
Dr Wendy Burn’s advice
He adds “it’s hard to make clear statements here – but there is a complex interplay between serotonin and thermo-regulation”.
Some antidepressants may make heatwave challenging
https://www.bbc.co.uk/news/health-62496985
The Medications That Make Extreme Heat Even Riskier
Antidepressants and some heart drugs can leave patients vulnerable to dehydration and heat exhaustion
By Kayla Yup Aug. 7, 2024 5:30 am ET
https://www.wsj.com/health/wellness/the-medications-that-make-extreme-heat-even-riskier-ff1e9537
That was WSJ Today – Paywall – How useful…..
It is so hard to back-step; when even dear old Chris, examining his ‘pot-plants’ could have been in hot-water, and the delightful Anne-Marie, discovered ‘addiction to alcohol’ and Katinka holds ‘picnics’ –
As said, the industry/profession is flourishing, but good to see the ‘detail’ and who will grab the bait…
Katie B-T says
Propofol
I am more in the PGAD camp than the PSSD one. I have pain and all kinds of abnormal neuropathic sensations in the pelvis. However, not until 8/5 (a few days ago) did I have persistent arousal. I was administered propofol and lidocaine on 7/31 for an endoscopy/colonoscopy (probably not sedated for more than 30 minutes). Noticed increased libido and changes in performance for the better several days later (effect was not immediate). On 8/5 I had persistent feelings of arousal and increased blood flow to the clitoris all day and part of the next day, though decoupled from libido. So far, the increased libido has persisted. I had thought on 8/5 that I was coming down with true PGAD—with the onset of the arousal sensations. The arousal on 8/5 and 8/6 was not unpleasant but it felt decoupled. The propofol theory would be more re-assuring.
Even though I am more PGAD than PSSD, I don’t have enough/normal feelings of attraction usually. But occasionally, I have windows of time lasting days or months when I do. During these phases I also have increased arousal and improved performance.
However, the major caveat is I am going through a lot of other changes right now and there are way too many variables in my case to draw a causal link confidently to the propofol.
Bob Fiddaman says
Thanks for the book plug, David, and thanks for the compliments, Annie.
When I wrote the book, my intention was to highlight how both the MHRA and GlaxoSmithKline had failed me and, possibly, millions of others. The only guidance, as I recall, from them, was one must taper slowly when experiencing problems. Neither said how slowly and why. The writing process was in itself therapeutic, although I’d already been to hell and back, the book was just a diary explaining that.
I’ve always been cautious to tell people my way was the right way – my experience and methods to combat the withdrawal side effects may have helped some but not others. Wrapping a wet towel around your head for example helped me control the head zaps. Walking long distances also helped as did drinking lots of water, about 8 pints a day as I recall.
The Tic-Tac/Jelly Baby experiment I performed in front of three MHRA members pretty much summed up the difficulty patients across the UK were having when trying to taper. It was a way of telling them their advice (break a tablet in half) was dangerous and nigh on impossible.
I often pondered about writing a follow-up but I became interested in creative writing which has also been therapeutic for me.
The UK Seroxat litigation never really got into second gear and was over before it started. That was hugely disappointing but expected. UK lawyers, seemingly, cared more about their egos than the problems their plaintiffs experienced.
I am aware of the tapering strips and clinics these days, I’m also aware of the prices they charge. Any advice I’ve offered throughout the years has always been free. There was a gap in the market for tapering services but some guy from Birmingham who had a gripe against drug companies and regulators wasn’t the right person to fill that gap.
I’ll always be proud of my input and do tell myself that I made a dent in the industry wheels, this was heightened by a GSK whistleblower who approached me at an after show party in Los Angeles. She told me, “I can’t tell you about my case but can tell you GSK absolutely cringe at your blog.” That was when I knew I’d made a difference just as before me, another paroxetine consumer, Rob Robinson, had.
We pretty much did the ground work when there was no Twitter or Facebook, or they were in their infancy. Things were a lot harder then than they are today. There seems to be a divide between advocates today, a lot of egos at play just like those pesky Seroxat lawyers. I know for a fact some of them have told others to ‘steer clear of the Fiddaman guy as he has links to Scientology’. Truth is, I have friends who are Scientologists, great friends who know that I have no interests in their beliefs so have never tried to use persuasive tactics to ‘convert’ me. The back-stabbing upset me at first but, as I said, it was more about not having the Fiddaman guy in the spotlight so they could receive the plaudits to massage their egos. More power to them. I bear no grudges.
Writing a novel (No Other Man) was my way of telling myself I wasn’t a ‘one-trick pony’.
There’s a follow-up in the pipeline 🙂
Harriet Vogt says
Suspect I read Tomasz Starczewski’s piece, ‘Escaping the Hell of Protracted Withdrawal Syndrome’ (big hint), in the same way you might have done. Initially I thought he was experiencing PSSD, when he described losing ‘emotional capacity’, ‘sensation in genitals’ etc. But when in year 5, ‘post discontinuation’, he wholly bounced back, I changed my mind.
What you are calling ‘Iatrogenic Dysregulation’, by which assume you mean the classic definition of dysregulation – ‘a condition in which a process in the body is not controlled in the way that it normally should be’ – does seem to fit Tomasz’s state as described. And how Alto /Adele perceives or conceptualises the iatrogenic conditions of most of the patients she supports – including him.
But It does appear that, for other patients, their system becomes stuck in this iatrogenically dysregulated state indefinitely – and for others, there’s a further level of obvious neurotoxicity, like the deterioration of penile tissue in some young men with PSSD, enduring tinnitus etc. This is the sort of issue BIC define as benzodiazepine induced neurological dysfunction – a fault in the body.
Anyway, it will be good to see you bring the theoretical to life in your MiA webinar with real Rxisk patient narratives. I find all the theory – a bit too theoretical.
Trying to work out how anaesthetic effects on the cholinergic system could temporarily reverse PSSD for blokes – I’m guessing a sort of system reboot – I came across this interesting piece by Irwin Goldstein. You’re bound to know it.
What really intrigued me was the connection between REM sleep, switching off the sympathetic nervous system and unconscious erections/engorgement – nocturnal sexual recharging. So if people are also suffering from the REM sleep behaviour disorder (RBD) we talked about a while ago, then how is this likely to undermine their sexuality – as well as their peace of mind?
https://www.bumc.bu.edu/sexualmedicine/publications/the-central-mechanisms-of-sexual-function/
Dr. David Healy says
H
A good spot this Irwin article but its from 21 years ago and the line of thinking he outlines doesn’t seem to have led to any progress per se. It almost seems a contradiction in terms to have a central functions playing a role in male function – as outlined in the old joke about men can have a lot of blood going to one other organ but not both.
D
Daniel says
Do you have any ideas about how it is possible for cholininergics to cause a temporal improvement? Also i have found a study showing lithium could increase the levels of serotonin by 80% “Stimulation of serotonin synthesis by lithium”( i can not access it but have heard descriptions of the result),i also hear that lthium can increase serotonin in even low doses, if this is true ,should not that mean that it risks making pssd worse?
Dr. David Healy says
The issue of SSRIs raising serotonin levels is irrelevant. They don’t. That’s just marketing copy. The issue is what does lithium do? Does it raise sperm counts where SSRIs lower them. Lithium is not an anaesthetic when SSRIs. We need to see what happens to people.
D
Bob Fiddaman says
I’ve been asked to elaborate on my time going cold-turkey on paroxetine. This is highlighted in the book I wrote but I’ll recap here. It’s quite long and may be used on social media providing context.
Why did I choose to go cold-turkey?
Well, I’d been tapering using the paroxetine liquid, I was going down very slowly 1/2mg per week, anything more caused severe zaps. Over the course of time, My initial dose was 40mg per day. I managed, over the course of many months, whittle this down to 22mg.
For those that don’t know, liquid paroxetine comes in a bottle accompanied with an oral syringe. There is no needle but on first glance one might think the syringe contains one.
I was fortunate enough to travel to Australia during this time. As many know, going through airport security with syringes poses problems and, of course, many questions. I was stopped at Heathrow and Singapore and asked what the syringes were for.
Once back in the UK, I continued tapering slowly, for whatever reason I could not drop from 22mg to 21 and 1/2mg. It became frustrating to say the least. I had previously read about stopping paroxetine cold turkey and all the material suggested this was dangerous, although, at the time, there was nothing about this on the labelling as I recall.
I emailed my Dr and told him I had decided to go cold-turkey, he advised against it but this was something I felt I needed to do. He told me to keep in touch via email.
During the 3 months of cold-turkey I experienced many things, thoughts of violence, bouts of tearfulness, those dreaded head zaps, body convulsions, profuse sweating and sleep paralysis. The sleep paralysis was like being in my own virtual horror movie. Imagine, if you will, being pinned to your bed, unable to move a muscle, unable to shout, all the time feeling an impending doom. A lamb to the slaughter, a fox in the headlights. It doesn’t sound much when one writes about it but it was scary beyond words.
I’d gained weight on paroxetine and also developed sleep apnea. I was told by the sleep clinic that reducing my weight, that had rose to 19 stone whilst on paroxetine, would help with my apnea. I was given a breathing device called a CPAP machine, basically it delivers continuous air through your mouth and/or nose to keep your airways open during sleep.
It was cumbersome – you couldn’t turn over during sleep otherwise the mouth piece would fall off. To be honest, I used it more as an air conditioner during the summer months. One morning after waking in a tangled mess of an air tube I picked up the machine and threw it at the wall, smashing it to pieces.
I then decided if I wanted to lose weight to help with the apnea I’d have to do something about it myself. I had a dog at the time, Benn, a big cross Rhodesian Ridgeback/Boxer. He was a gentle giant. During cold-turkey, I’d take him out during the early hours and later at night as I didn’t want to meet anyone just so they could tell me about the weather or neighborhood gossip. This didn’t go to plan as one night, probably during the first few days of cold-turkey, I went out with confrontation on my mind. It was the early hours of the morning and I was in a country park known to be frequented by gangs. Benn, my dog, had ran into the bushes after smelling a fox trail, I continued to walk briskly hoping I would meet some of these gangs. I wanted violence.
Luckily, for me and probably any gang members, nobody was around.
As the side-effect misery of going cold-turkey eased, I purchased a pedometer and during the day went for long walks with my trusted four-legged friend. I was walking up hill and downhill and would mange 5 miles a day. The weight soon fell off. During these walks I would notice mother nature, trees reaching up to the sky for sunlight, birds singing, even the clouds. I recall falling to my knees and crying at the beauty mother nature was showing me. This was me, the real me, something that paroxetine’s hold over me had suppressed.
Today I can cry at a piece of music – during my time on paroxetine nothing would move me in such a way. I had very little empathy, if any at all.
I still strongly do not recommend anyone go cold-turkey, it’s not for the faint-hearted and if circumstances were different, I may not even be here today to write about it.
The odds wouldn’t have been in my favour if gang members were present at that dark country park that night.
I now live in Central America and miss Guinness.
I still miss Benn too but I brought him back to life, albeit for a chapter in ‘No Other Man’. 🙂
Tomasz Starczewski says
Hello,
Thank you for mentioning me in the article. During my recovery process, I focused primarily on factors that promote neurogenesis, stimulate BDNF, and ketosis. I believe that PSSD is one of the symptoms of Protracted Withdrawal and should be considered as part of the larger puzzle of autonomic dysregulation.
I’m in the process of writing an article and creating a video about my recovery journey, going into more detail than what I have shared on my website.
Best,
Tomasz Starczewski
Harriet Vogt says
The most wonderful news is your recovery, Tomasz , after so much suffering.
David is, of course, the medical and scientific expert – but I’ve a lot of friends in the PSSD community, so have acquired a bit of lay wisdom. Listening to them and to Adele/Altostrata, I’m not convinced that ALL PSSD can be conceptualised as part of the larger puzzle of autonomic dysregulation – although some patient experiences seem to fit, especially the ones like you who recover more quickly – or less slowly.
There are some patients with PSSD who actually have penile tissue deterioration – guys under 30 with the tissue profile of an 80 year old. That to me is more than autonomic dysregulation, that’s damage. I’m not aware of any treatment that can restore the tissue – but seem to recall David has some ideas perhaps based on repairing tissue damaged by diabetes.
I think there’s another dimension to the – should PSSD be considered part of the larger puzzle of autonomic dysregulation – its salience as an adverse effect, as a drug harm. PSSD that endures for years – like Roy, mentioned in the blog, for 15 years – is a terrible affliction – having experienced it for 5 years you will understand this better than most. From a communications’ perspective, I categorically would not subsume PSSD under PAWS, autonomic or iatrogenic dysregulation. As one of the cruellest harms – my belief is that it needs all the individual attention it can get – to drive awareness, support, research funding etc.
annie says
Job Done –
Mark Horowitz@markhor12h
Scottish gov has adopted REDUCE approach to tapering despite the study showing essentially no diff from stopping as usual, that most long-term users were unable to stop in this way and some ended up in hospital:
Quality Prescribing for Antidepressants: A Guide for Improvement 2024-2027
https://www.gov.scot/publications/quality-prescribing-antidepressants-guide-improvement-2024-2027/pages/9/
Thanks, Mark.
This is somewhat shattering to hear.
Three days after leaving a mental hospital, I was then in another hospital. In each hospital, it was a case of Job Done, you are in a hospital. No discussions took place, no explorations as to why I was in each hospital. No discussions on medications, no uniformity to address medications.
Job Done – here is the bed.
The Doctor sent me as an Emergency Admittance, she gave no reasons. (She of the cold-turkey)
No one took stock of this bloodied, shocked individual, who had made akathisia attacks on her person. As soon as I was in the bed, three days after leaving the mental hospital, akathisia was still strong and I was trying to suffocate myself with my pillow. Locked myself in the toilet, with an industrial plastic bag from the bin, over my head. Pacing the corridors.
Absurd level of disinterest, as ward work went on.
Where was the Seroxat? It was late at night after begging to see a doctor, that he got me Seroxat.
I left two days later, with the same home-made bloodied bandages on me.
‘Some ended up in hospital’ –
Unbelievable – what a way to carry on – Stayin’ alive, Stayin’ alive
That was the week that was…
Timofey says
About a month ago, I read the message of one guy who cured Varicocele and all his PSSD symptoms disappeared, he writes that he recovered. He sincerely believes that the case was in the veins of the seed, although the operation was undergoing general anesthesia, he was given propotel. I myself underwent an operation with a propofol on my hand in 2013 10 years before taking the antidepressant and after the operation I watched a very high libido and incredible orgasms for several days.
Dr. David Healy says
Timofey
Thanks for this. You have opened a door to something interesting. Propofol has been accused of causing sexual hallucinations – people under anaesthesia claim afterwards to have been molested
This is probably not right – some people can remain semi-conscious under anaesthesia and can’t let the anaesthetist or surgeon know they aren’t fully asleep. The things they hear or feel or think they hear or feel may be confused in the process.
But the link below shows two people experienced high libido after tummy-tuck surgery and were trying to understand why. Neither of the doctors who responded suggested a link to anaesthesia.
https://www.realself.com/question/there-hormonal-physiological-change-after-tummy-tuck-body-lift-causes-intense
It is beginning to look like Propofol does something interesting. It may not be a cure for PSSD but anything that has an effect is something to pay heed to. Trouble is no-one really knows how propofol or other anaesthetics work.
We need you and others to start chasing this and see what between us we can find. Having said this – I should not that someone else with PSSD has been in touch who said she has had propofol a few times with no obvious benefit.
David
Harriet Vogt says
As you will know, most of the research on Propofol/anaesthesia and sexual hallucinations focuses, understandably, on the traumatising aspects for patients and the legal implications for the medical profession.
One small scale review found that the nature of the hallucinations reflected the parts of the body being operated on – makes sense and may explain some variations in response:
‘We also found a striking match between the anatomic location of the procedure and where the patient perceived inappropriate sexual contact. Procedures involving the mouth were perceived as oral sex, squeezing a ball to make a vein more accessible as squeezing a penis, chest procedures as breast fondling and groin procedures as vaginal penetration.
This may explain why one assessment of 200 patients found no cases of sexual hallucination for those undergoing gallbladder or appendix procedures involving the abdomen, but around 12% of those undergoing vaginal procedures noted amorous or sexually disinhibited behavior.’
https://theconversation.com/anesthesia-can-cause-disturbing-sexual-hallucinations-leading-to-lasting-psychological-trauma-204612
Apparently, this effect has been known since the advent of anaesthesia. (Note the anachronism it was felt ‘unbecoming that women should have sexual dreams’.):
‘Gream [1] reported several instances in 1849 where women had used obscene language under chloroform anaesthesia. As a result, its use was opposed in obstetrics. Simpson [2] repudiated these allegations by stating that chloroform had been in use in Edinburgh for 15 months and he had not heard of any similar reports. However, he cited a French prostitute who had reported lascivious dreams after inhaling ether during her confinement. Simpson concluded ‘but surely it was to say the least very unbecoming that most English women should have sexual dreams (like the French prostitute) when under the influence of chloroform’
https://associationofanaesthetists-publications.onlinelibrary.wiley.com/doi/full/10.1046/j.1365-2044.2003.03147.x#b1
Is it being too simple minded and insensitive – possibly, not intentionally – to consider that the anaesthetic action of stimulating INTENSE sexual hallucinations and arousal – could switch on – temporarily – sexual responsiveness that has been deleted by SSRIs?
Of course, I have no idea of mode of action – but the effect seems clear and highly relevant.
You would have seen on X the other day – Rosie Tilli responded to you that one of her friends had experienced long periods of improvement from PSSD post operatively. Has she reported back in more detail?
This feels like a bit of a breakthrough.
Dr. David Healy says
H
Can you find out more from Rosie – I don’t keep an eye on twitter so missed this completely
D
Harriet Vogt says
Ofc I’ll follow up today.
Rosie described her friend as having experienced ‘massive windows’ post op-so very interesting.
Did you see/ connect with anaesthesiologist in the same thread – who’d had PSSD, been urologist Kenneth Peters’ patient (an early X supporter of PSSD community)-and offered to help? @iallarak. I’ll ask him to contact you directly, if he hasn’t already.
Snowballing.
Dr. David Healy says
Will chase Ken – Good idea
David
Johanna says
Propofol is reported to have devoted “non-medical users” — people may recall Michael Jackson’s 2009 death from propofol overdose. Jackson claimed he needed it to treat intractable insomnia, but there are lots of plain old Recreational Users as well.
Overwhelmingly these are doctors and other health care professionals. (After all, acquiring and using propofol is not a simple task — most likely you need a well-trained buddy to help you use.) Anyone with an ear to the ground in the students’ or residents’ lounge may know plenty.
What is the nature of the Recreation involved? I saw a few case reports that mentioned “euphoria” of some sort. One added “sexual disinhibition” to the list. Another mentioned patients who actively requested various diagnostic “scopes” just so they could get dosed with propofol. They came disproportionately from South Korea, but it’s clearly a worldwide trend. A few links:
Propofol Abuse in Professionals – PMC (nih.gov) (from Korea)
https://www.sciencedirect.com/science/article/abs/pii/S0379073821002292?via%3Dihub
(from Ireland)
Guilty, or not guilty?: a short story of propofol abuse – PMC (nih.gov)
Mike says
Dr Healy I would like to know does the amount of time a person is on an SSRI affect recovery from PSSD? I took vortioxetine for over 2 years I think its been about 2 years and 8 months since I stopped taking it. So that’s 4 years and 8 months of sexual dysfunction in total. I recently quit drinking coffee and I feel a slight improvement with Anhedonia. I would say there’s a 20% improvement with sexual dysfunction over the past couple of years I can only get weak erections now and I also have severe premature ejaculation which bothers me the most. Could the length of time is was on an SSRI have caused me more damage and hindered recovery? I see some people getting long term sexual dysfunction from only taking a few SSRI pills. I complained so much about the side effects of vortioxetine but the mental health center didn’t believe me about the sexual dysfunction I experienced on this medication and they said to me vortioxetine doesn’t cause sexual dysfunction and it was psychological and nothing to do with the medication. I wonder would I have better recovery if I didn’t take it for such a long time
Dr. David Healy says
M
If you haven’t filed a RxISK report for PSSD on vortioxetine – could you do so. We have several reports but would do with more. You haven’t made any mistakes and you are right and the mental health team is wrong. This is not your fault but there are unquestionably people to blame.
As far as I know PSSD has nothing to do with the time on the drug. Recoveries can happen but no-one can predict when or what makes them most likely and there are very people/groups out there besides the PSSDNetwork, the PFS Foundation and RxISK who are concerned about what has happened you and continues to happen others.
These drugs de facto make both men and women less fertile or infertile so this is a national and international issue that no one is talking about. Anything you can do to stimulate the national conversations that should be happening would be great
David
Mike says
Thanks Dr. Healy for that information. I already filled out the Rxisk report on Vortioxetine October 13th 2022 I have the PDF if you would like me to send it to you please let me know. By the way over a year ago I tried filling out a similar report to HRPA.ie (The Health Products Regulatory Authority) this is an Irish website where you can report adverse drug reactions. But I got nowhere I was reporting that I got PSSD from Vortioxetine and I was trying to make them aware of what Post SSRI Sexual Dysfunction is so they can raise awareness and make psychiatrists in our country aware of this condition in the hope that the HSE will give informed consent instead of handing out SSRIs like sweets. I got a reply from one of their staff but he only wanted to speak about Vortioxetine specifically he didnt want to talk about the condition I think he thought that only this medication can cause this issue. But to be honest I dont think he was willing to learn much about PSSD he had a short list of things he wanted me to provide to confirm that I got sexual dysfunction from voritioxetine he wanted to know things like what
“tests and investigations were carried out on my symptoms”
But there are no tests for PSSD currently it is a condition that we the sufferers cannot prove exists. Although I have cognitive impairment from vortioxetine I still have the ability to read people quickly I realized that I was getting nowhere with these emails to HRPA.ie they were asking for tests and investigations these are requests that I cannot provide so I decided to stop contacting them it was a waste of time.
Dr. David Healy says
Your experience with the HPRA is typical of everyone’s experience with regulators. They are not in the business of working out would it be a good idea for the people on meds to make sure they know about the risks – quite the contrary, they believe you should not be told about the risks and in the case of Vortioxetine it looks like EMA and HPRA have been told the Lundbeck are not going to pay heed to them about warnings so they can just get lost – and respond to you on phone-calls the way you’ve described
D
Mike says
Actually after looking at my older Rxisk report PDF I have decided I will file a new Rxisk Report on Vortioxetine today with updated information.
Dr. David Healy says
Thanks for this – if you can encourage anyone else you hear of who has developed PSSD on Vortioxetine to file a RxISK report also this would be great
D
Yoko says
I am going to tell you the story of X.
X contacted us in 2022, suffering from PSSD and expressing that he felt desperately alone, with no one around him who understood what he was going through. He had found some information on RxISK and mentioned Dr. Healy’s name. At that time, he had stopped taking medication eight months earlier.
X was 36 years old. He had been prescribed Zoloft for nine months, with the dose gradually increasing to three pills, but nothing changed. His psychiatrist then switched to vortioxetine, 5 mg. When that also had no effect, the doctor decided to increase the dose to 10 mg the following month. A few days later, X woke up one morning feeling a dramatic change in his genitals.
He no longer experienced tactile sensation or pleasure, and his genitals felt cold, as if he were touching a foreign body. He was also unable to have an erection. Alongside these sexual problems, X quickly noticed other symptoms:
– An inability to feel any emotion—no anger, no joy, no crying, no laughter.
– Great difficulty concentrating, memorizing new things, and imagining situations.
X immediately scheduled an appointment with his psychiatrist and reduced the dose, but nothing changed. He then stopped taking the medication, but since then, nothing has returned to normal.
For a week, he experienced a horrible burning sensation in his head, particularly at the left temple. He couldn’t sleep at all but didn’t feel tired. X also noticed he wasn’t sweating, and his sperm had changed in texture and appearance.
During our exchanges, a friend of mine, a psychologist working at a youth health center, commented that she sees exactly the same problems described by teenagers—not just during withdrawal but also while on treatment. This often leads psychiatrists to either add another psychotropic drug or, at best, quickly switch to another SRI.
After that, we didn’t hear from him again until one day, I suddenly received the devastating news that he had taken his own life about two weeks after our last exchange.
Katie B-T says
I think there could be something to the propofol; thus far ‘ve had a window of several weeks. Had on 7/31. Increased feelings of attraction and improved performance began 8/3 (so it was several days before I noticed a benefit, which does seem less compelling). At first I was concerned I could be getting PGAD because the arousal was sometimes decoupled but that went away and now it’s congruent. My other neuropathic symptoms haven’t improved during this time. But the window now of a couple of weeks stands out because there is no good psychological reason for why this could be happening.
Dr. David Healy says
Thanks for this. There does seem to be something in this
David
Tim says
Hello David,
When you said that one person has received little help from benztropine, can you specify what kind of symptoms the medicine has helped a little with? I’m seeing my doctor soon and I think I might be able to get some anticholinergic medication to try but I don’t know what would be the most reasonable option.
Dr. David Healy says
T
Its many years ago. Before we created the Prize. As I remember it, he was chinese but had a relatively in Australia where he could get benztropine. He reported improvement but there was no follow up and I lost the connection. So difficult to say.
At the moment, the options are Oxybutynin which seems as good as anything. It comes in an Extended Release Form and 5 or 10 mg in the morning seems a reasonable option. It also comes as a Gel – Gelnique and directly applying/rubbing it in to genitals is an option. Perhaps a 5 mg pill and the Gel?
Cyclizine is another interesting anticholinergic but I have no feel for it at the moment. The dose is a 50mg pill and it needs to be taken 2 or 3 times per days. Its probably more awkward than oxybutynin
If you are in a country where they have benztropine – I was recommending lowest possible doses but a 2 mg dose possibly both morning and evening might be worth trying.
One of the anticholinergic PSSD posts has a link to an Oxybutynin trial for peripheral neuropathy that you can download and take to your doctor.
D
Tim says
Thanks for the reply. Are you talking about this study:
https://pubmed.ncbi.nlm.nih.gov/38526612/
Dr. David Healy says
Yes
Tim says
I just got a prescription for oxybutynin and I´ll start the trial with 5 milligrams during the fall. Unfortunately the gel-form is not available in my country.
Dr. David Healy says
If 5 mg causes no problems, consider going up to 10 mg. When I say consider, I mean whatever you are on you will likely have to stay on for up to 6 months. Please try and register every change good or bad, not just sexual, that you notice while on it and roughly the time frame in which it appears
Best of luck
David
Tim says
Thanks. I think I will stay at 5 mg for a long time because I am extremely sensitive to drugs. It’s also a bit worrying whether the medicine worsens urination problems which are part of the PSSD symptoms.
Dr. David Healy says
Tim
The literature on these drugs does talk about urinary issues – there is no substance to that literature or the datasheets etc. This was part of the reason for asking you to keep track of everything you notice while on the drug.
The background story is young boys who wet beds were put on imipramine in the 1960s = it helped. We now know but no-one pretends to know that this was/is caused by the norepinephrine reuptake inhibiting action of imipramine – duloxetine for instance is licensed for bladder stabilization for this mechanism.
But in the 1960s norepinephrine reuptake became the Way the Truth and the Light in terms of curing depression – so the urinary retention was blamed on a fall guy – the anticholinergic effect. There are lots of posts on RxISK and DH about all this from several months ago.
I think oxybutynin won’t cause you problems but the reason for asking you to monitor every effect it has was to keep an eye on this. What happens to you and others counts for far more than what the medical literature claims about these drugs
David