The similarities between AIDS and PSSD/PFS/PRSD are striking. Both involve:
- Sex
- Anonymity – everyone’s initial instinct was not to reveal they had the problem. The AIDS community faced up to this with the creation of ACT UP. For PSSD things changed dramatically when the PSSD Network put names and faces to the condition.
- A People’s Movement. When it was clear the institutions were failing, the affected took matters into their own hands and began doing their own research. In the case of PSSD, this is expanding dramatically now with a turn to Genome Wide Screening and is likely to extend beyond the Enduring Sexual Dysfunctions to many others testing for themselves the suitability of drugs they are on rather than depending on guidelines or controlled trials.
- A Mission not A Business. For Pharma, AIDS offered a chance to cash in and they were busy making expensive antivirals, none of which did much. It was the affected who combined antivirals and discovered Triple Therapy. Bill Haddad, one of the most compelling unsung heroes in healthcare, persuaded Yusuf Hamied and Cipla, a generic pharmaceutical company, to make Triple Therapy combinations available at $1 a day. Saving Lives is a disastrous business model (Goldman Sacks). Haddad is a central figure in Shipwreck of the Singular,
- Real Science. The discovery of Triple Therapy shows real science in action. In Real Science generating observations is more important than following protocols. Clinical trials done for licensing purposes are not science. Following protocols agreed with bureaucrats, they lead not surprisingly to us ending up stuffed full of diagnoses, with shortened lives and impaired quality to our lives.
In the case of PSSD and PFS, those suffering have had to raise the money for research, had to file petitions with regulators to get the condition mentioned in drug labels, had to get the conditions coded so they can be recorded in medical records, had to create an academic literature.
No pharmaceutical company has been involved despite almost all being approached. Medical academics have shown themselves capable of taking research money raised by sufferers and running. Regulators have delayed for historically unprecedented lengths of time in response to petitions for reasonable label changes. In the case of individuals they’ve damaged, doctors and their professional organizations have generated a catalogue of ghastly responses – which will make shameful reading at some point.
Banned from medical and mainstream media, in podcasts and other means of spreading messages, the sufferers have produced compelling indictments of modern science and medicine – better than anything bioethicists, philosophers or others have done. See PSSD Podcast 2.
Curing Enduring Sexual Dysfunctions
We know PSSD and PFS are curable. While it might take years or decades, recoveries happen. For others, windows open and close again. Although there has been a primary focus on enduring sexual dysfunction, it is clear the dysfunctions span multiple bodily systems, and affect eyesight and balance, along with all other sensory modalities. These features are all grist to the mill of a Feedback Loop Disorder.
The recent PSSD – PFS World Congress produced striking sonographic evidence of genital smooth muscle changes that establish these are physical conditions with demonstrable test abnormalities. Irwin Goldstein has produced evidence that these changes can be reversed with (acoustic) shockwave devices. While this is hugely reassuring, it doesn’t cure the condition overall. This again is consistent with a Feedback Loop Disorder.
At the Congress, Will Powers produced evidence of abnormalities of steroid hormones and their metabolites, which he had begun to attempt to reverse. It now appears that in a case of PFS, he has successfully normalized highly abnormal levels of testosterone and its metabolites using Relugolix. This again is a significant achievement but only one part of the jigsaw. As with smooth muscle changes, it appears metabolic features can be corrected without everything returning to normal. This is consistent with an FLD……
What else might be done to break the feedback loops?
Type II Diabetes has many features of an FLD – it has a series of variable abnormalities like reduced insulin sensitivity but just treating one aspect of the problem with medication doesn’t produce cures in a condition we now know can be cured. Keto and related Diets are definitely worth trying first for Type II Diabetes (T2D), rather than instantly turning to medication. With medication, the condition persists despite apparently safe but falsely reassuring blood glucose levels.
It has been semi-natural for many therefore to think Keto Diets might also help some other treatment induced problems like PSSD or catatonia but while Keto might help some nervous conditions it doesn’t look like an answer to PSSD.
Another dietary element that has come into the frame is gluten. People have asked about and tried gluten free diets but there is little evidence this helps.
In the case of PFS, Finasteride, possibly among other things, acts on androgens and it is natural to think the resulting sexual problem might involve these hormones.
With PSSD, all sensory receptors use serotonin which acts to mute sensation and this fits well with the genital and orgasmic muting and loss of libido in PSSD. So what about reducing serotonin to see what happens, just like reducing androgens and their metabolites?
In the light of Keto and other dietary dead-ends, when I heard from a smart woman that a water-only diet had helped her genital and other sensory sensitivities, I thought it unlikely until a few weeks later a coin dropped. Our serotonin comes from tryptophan in food. Keto diets are full of tryptophan. Water-only diets aren’t. But it must be water-only – you can’t drink milk which is full of tryptophan or anything except water.
Water-only will lower your serotonin levels. Can this be a problem? Does low serotonin not cause depression? Yes you are going to be hungry and lose the weight/fat you put on when SSRIs converted your muscle into fat. But it’s only if you read AI that you are likely to think serotonin is low in depression.
How long do you diet? My informant seems to have only done a few days but has since found a True North Health Foundation in the US which advocates up to 30 days. This sounds extreme but they claim to have seen benefits for PFS from this approach.
Real Science
Now my informant has also been impressed by a specific Acupuncture approach (not just any acupuncture) which seems to be helping at least one clear case. She is going to try the same approach, so there may be more evidence soon.
My medical instinct kicked in when I heard about this. I figured if testing acupuncture, she shouldn’t do a water-only fast at the same time. How would we ever know what was going on if she did both?
Then the discovery of Triple Therapy for AIDS kicked in – this is exactly what people with AIDS did. Sure this approach makes it more difficult to work out which bit of the mix a corporation can make money out of – but that’s not science. Science generates observations. When it comes to PSSD and PFS, we are moving forward with clear reproducible but limited observable changes. We now need to hit the jackpot, which does not mean making money but may mean trying a few things at the same time that enable us to exit the zone – the loops – we are trapped in.
So water-only fasting and shockwaves and Relugolix and other options all together may be a way to go.
There are herbal preparations like Sarpagandha, from which reserpine comes, which can deplete serotonin but water-only fasting is safer. If you try Sarpagandha, take a very very low dose because it can also cause akathisia. Do not take Ashwagandha which looks like it causes PSSD and other SSRI problems.
Epigenetics
The Feedback Loop Disorder post dismissed Epigenetics as a factor in PSSD – possibly too quickly.
We have known for a long time that drugs taken in pregnancy or early infant life can cause neurodevelopmental disorders. The very same drugs can be treatments for cancer later in life. SSRIs and anticonvulsants can do both to some extent.
You will be surprised to hear that we have only very recently discovered LSD. A SETD1A gene codes for Lysine methyltransferase which has a potent role in triggering neurodevelopmental delay. LSD is Lysine-Specific Demethylase. LSD-1 inhibitors reverse demethylase and are a hot topic in cancer therapies. They open cancer cells up to detection by our immune systems, enabling us to overcome the cancer – almost naturally.
Old style LSD blocks the effects of SSRIs. How might this new style LSD action link to enduring post SSRI and other problems?
We have known for 60 years or more that some people respond to SRIs and these responses run in families. We have also known that many of those who don’t respond to SRIs respond to Monoamine Oxidase Inhibitors (MAOIs) and vice versa.
The first MAOI was isoniazid, which began being used for tuberculosis in 1952. It was quickly recognized by Max Lurie and Harry Salzer to have the capacity to be something they called an antidepressant – long before the tricyclic SRIs were called this. See The Enigma of Isoniazid
MAOIs fell out of favor because there was a risk of your blood pressure shooting up if you ate cheese while on them.
Guess what? MAOIs are now among the leading LSD-1 inhibitors. One of the most promising is tranylcypromine also discovered by Max Lurie – See The Enigma of Isoniazid. It will be big news when industry get a much more expensive version on the market because they’d hate to have you deprived of Cheeses.
Fascinatingly, decades ago, Josef Knoll discovered that deprenyl, another MAOI (also called selegilene), could prevent Parkinson’s Disease. Even more interesting than this, Knoll was certain deprenyl had life extending actions which came into play at much lower doses than conventional pharmacology recognized – see The Psychopharmacology of Life and Death.
Deprenyl is an LSD-1 inhibitor and you can smile at people and tell them you’re microdosing an LSD-1 inhibitor. It also does not force you to give up your belief in Cheeses. And it is one of the treatments some people have reported as giving them PSSD windows – often on stopping it.
There also are other natural compounds in common use that are LSD-1 inhibitors – like Melatonin and Mangostin.
There is a very strange link between Finasteride and MAOIs and perhaps all LDS-1 inhibitors, which is they also act on hair. They make it curly as I found out from people taking them.
Isotretinoin (Accutane) may also hold clues. Vitamin A facilates cholesterol production on which the production of steroid hormones depends. Steroid hormones, as Will Powers has shown, appear to have a central role in these feedback loops. Isotretinoin was made from Vitamin A and appears to impact steroid hormone systems. This speculative link is not one to put much weight on until we know more, but it may offer those screening genomes things to look out for and signpost the rest of us to avoiding taking vitamin A or liver products.
A People’s Movement?
The Enduring Sexual Dysfunctions have created a people’s movement. Stimulated by Will Powers work, a lot of folk are getting their Genomes Screened and learning how to interpret them. There is a lot to learn before the results become reliable but the Genie may be out of the bottle – see Grasping the Gene Genie – and not just for sexual dysfunctions but for bipolar and other disorders and the polypharmacy soup so many land in these days.
Getting a genome screened is expensive and while fascinating it might not contribute much or any more than combinations of simple maneuvers with treatments already available and comparatively safe but never used in triple or quadruple therapy combinations before – like the ones outlined here.
It is worth getting hold of a shockwave device. Basic versions are much cheaper than Dutch tests and Genome Screens. Or many phsyiotherapists have them and may help you. The next but not absolutely necessary step is to persuade a doctor (perhaps a urologist) to order a genital sonograph for you before starting and then later after shockwave input. The sonographs are evidence this is not all in your mind. Having evidence that shockwaves have improved your sonographic images is powerful evidence that what is going on in you is not a figment of your imagination.
Similarly Von Frey Filaments are relatively cheap. It would be worth testing your genital area before starting water-only fasting. and then after, especially if you can detect an improvement. It would be great if someone can keep a record of scores – so we can all get a sense of what to expect and exactly where best to look. There are control ranges for this already.
If you live close to others with an enduring sexual dysfunction or related condition, the shockwave devices and VFF filaments could be shared and might be easier to operate.
It looks like there will be improvement with inputs from shockwave and water-only fasting but these may not roll the entire problem back – you may not be back to the pre-treatment normal you. This is where adding deprenyl, melatonin, mangostin or other options may help. Relugolix is an option if you can find a doctor to help.
Bear in mind, however, the PSSD and PFS experience is full of people figuring they’ve been cured by hyperbaric oxygen or other things only to crash and burn after a while and end up possibly worse than they were beforehand.
This may be where the comparative safety of some of the options now appearing may help us balance what is a complex mix of risk-taking and risk-management.
We need someone to compile a catalogue of things that appear to have helped temporarily or partially but which given on their own have led to relapses.
There are opportunities here not just to find a cure for the enduring sexual dysfunctions, and pinpoint why they endure, but also an opportunity to impact on medical thinking for the better.
tim says
— ‘It is clear the dysfunctions span multiple bodily systems’ ===
On the UK BBC Website there is a feature: ‘Why antidepressant users struggle in heatwaves’, (9th July 2026).
For many years we have observed that our prescription drug-injured, loved one had significant impairment of thermo-regulation.
Although the torment of AD/psychotropic drug withdrawal was completed many years ago, multiple, severe iatrogenic injuries persist. There is major disability.
– (All these drugs were unneeded, inappropriately prescribed without full, fair and informed consent, and almost entirely for severe adverse drug reactions (ADRs) misdiagnosed as ‘mental illnesses’)
The inability to physiologically regulate body temperature is a continuing cause of suffering.
Might this failure of thermo-regulation be another post-antidepressant/psychotropic ADR, as is PSSD?
Hank says
My own experience is that sensitivity to both cold and warm temperatures increases during and after withdrawal. And, in the case of high temperatures, a cascade of other effects occur: insomnia increases, brain fog goes up, cortisol spikes, glucose levels vary unexpectedly. It impacts virtually everything.
Dr. David Healy says
Hank – Tim
I think its for certain that many, perhaps most, but maybe not all people with PSSD, PFS, Protracted Withdrawal or perhaps just what they view as Sleep that has never come back to normal – See earliers posts Forty Winks by Bob Fiddaman and Insomnia The Royal Road to Pills and Nightmares – all suffer from a hyperarousal of some sort.
Part of the problem is one features of this hyperarousal is that it creates what is viewed as a sensivity to pills – aimed perhaps at damping down the arousal but ending up doing the opposite (the opposite to what these pills might normally do to us when we are not hyperaroused).
I was always struck by Bob walking it off. Water-only fasting feels in some way similar. Companies sold the idea that SSRIs can cause a serotonin pick up syndrome (a destabilization of the serotonin system). Perhaps the way forward is to drain the system and see if that helps
David
Bob Fiddaman says
Spot on with the heat sensitivity. I’ve always found the same. Years ago I even asked why it was so much harder to taper in the summer months than in the colder ones.Brain fog always got worse for me in the warmer weather.
Walking did two things. It helped me lose the weight I’d put on, but more importantly it got me back in touch with nature again. That mindset Seroxat had slowly killed off started returning.
After three months of cold turkey, basically locked away indoors, I finally went out with my dog. Things that had been dead for six years came back — birds singing, branches reaching up like they were pleading for sun or rain.
I looked.
I listened.
And I found me again.
Halley says
My loved-one was left fatigued, confused, suicidal and emotionally and sexually numb whilst taking and after stopping SSRI/SNRIs + an antipsychotic. Thankfully, he recovered after a year or so of being unable to function. One of the main contributors to his recovery he believes was that he walked every day, without fail. Sometimes the walks were just to the end of the street, now they are marathons. Our bodies were designed to walk through our environment – it reminds us that we’re human.
chris says
My experience Ashwagandha can kick off akathisia. Took it just once never again.
BTW
At the Royal College of Medicine April 2026 I see that akathisia is not mentioned under:
“Acute Behavioural Disturbance”
Even though the presenting features of akathisia are all there listed under Acute Behavioural Disturbance.
With the usual drugs as solution that would end up making it worse in their guidance to doctors on how to treat it.
Am not allowed to link here copy and paste their text unless I ask permission and maybe pay a fee. Emailed as yet no reply and I do not expect one.
My own temp and balance problems have very much improved to the point I do not really have noticeable issues anymore. Almost eight years since my akathisia stopped. When I think back, what I went through it would drive most people to the GP asap and on a regular basis. I stay well clear of doctors unless it’s really serious stuff. Even going to a hospital with or for someone else bothers me.
Dr. David Healy says
Chris
This is a great comment. There is no Royal College of Medicine – there are RCs of Emergency Medicine, of Physicians, of GPs, of Psychs all of which might have something about Acute Behavioural Disturbance – it would be great to track down what is being said. Can you email a copy of the text you;ve found
There is no question that many people are suffering from enduring or tardive akathisia and this is often made worse by treatments they are recommended and then when they get worse and don’t want to take a repeat dose they get recorded as lacking in insight and told they must take the treatment or will be detained in hospital – or if they are a woman they will be referred to social services to check if her children are still safe to be with her.
For people not familiar with these issues it is likely hard to believe that things could be so insane
David
D
chris says
Sorry yes it’s RCs of Emergency Medicine
Dr. David Healy says
Thanks for this. I’ve had a look at their Acute Behavioural Disturbance document and can see where your concerns lie. They are dealing with something else – delirious or frenzied states rather than akathisia. Classically these states are quite different to akathisia – they may stem from physical illness but also from drug reactions and will sometimes appear catatonic.
There are very clear cut cases where the RCEM recommendations to give ketamine or lorazepam infusions make perfect sense to me and its what I would do. But it is easy to imagine borderline states where the conditions might be appropriately viewed as akathisia and there is no mention of this possibility here.
The only consolation is that anesthetists coming down to emergency departments are looking for an almost immediate and obvious benefit which will happen if they get the diagnosis right – they are not people who are likely to say we want to give you more of the same and if you refuse we are doing to compulsorily detain you in hospital or take your children away.
The states being focussed on here are so frenzied that talking to the patient is not an option. Akathisia even when very bad still allows a conversation – which ‘mad’ doctors then ignore and do just the opposite to what you or I are telling them.
The other problem is there is a grey area in between – which should lead this document to mention akathisia and perhaps advise on a course of action
This is rather like the FND confraternity who should be telling medics to rule out the adverse effects of drug but don’t advise that and in the experience of many RxISK readers and my observations end up making a serious situation much worse by implying that valid observations by a patient are simply figments of the person’s imagination
David
mary H. says
‘- or if they are a woman they will be referred to social services to check if her children are still safe to be with her.’ This has just shaken me into the reality of the need for us to share such information in areas that we, possibly, wouldn’t think of taking it.
A friend of ours, who co-runs our “Feeling Blue?” Facebook group with Shane and me, is now running a group that she has set up to support families where children have been taken away from their parents without justification and, in some cases, almost immediately put up for adoption. I shall now make sure that the paragraph from which I have taken the above phrase is shared with her and will support her with any additional knowledge she may find useful, or questions that she may previously never have thought of asking when dealing with such cases. thanks for pointing this out.
Dr. David Healy says
What very few people realise is that Mental Health Services have much greater powers than the police or social services. And as things get worse, and services are falling apart to such an extent, they are using these powers more than ever before. Common sense has gone out the window. For every complaint people like Chris might make that might turn out to be partly wrong, as I think the Acute Behavioural Disturbance document is, he is absolutely right when he points to an increasingly horrific situation people are up against and women are particularly vulnerable
There are two recent BBC articles on a woman musing on how can she ever manage having a child with ADHD and another women saying her ADHD goes bananas when she has a period. With photographs of smiling women it almost reads like joke. But until a few years ago no adult women in Europe had ADHD and very few girls – now put on increasingly cocktails of drugs they are exposing themselves to outcomes they could never have imagined visiting them.
D
Harriet Vogt says
A close friend, T, whom I happened to see today, used to work in a child safeguarding team and later as a CAMHS therapist.
The word ‘trauma’ is increasingly devalued currency – but some of the little children she supported defined it. One little boy watched his mum knife his dad to death. Another used to sit on the front step in a dirty nappy while his mum sold her body to strangers for pennies.
The truth is that the numbers of children taken from their mothers and put into state care is ever rising. As T said, and the data bear her out, the main reasons are these women’s intolerable lives – sexual abuse, partner violence, drug and alcohol dependence etc. – mostly the corollaries of living in deprivation and too often wallpapered over with cumulative ‘mental health’ diagnoses.
https://sites.manchester.ac.uk/mhsci/2025/05/30/the-hidden-cost-of-trauma-maternal-mental-health-and-child-removal/
Apparently, when the sole focus used to be on protecting the child, the system has finally clocked the suffering of a mother who has her child removed. Well, there has been a national review, what is being done is another question.
https://www.researchinpractice.org.uk/all/news-views/2026/february/recommendations-from-the-national-review-following-the-death-of-baby-m/
I can think of nothing more destroying than the visceral fear of having your child forcibly removed. Even the thought of it makes your heart rush and your guts twist. It’s a sort of psychological rape – your powerful instinctive maternalism abused. I’m sure Mary’s friend will be familiar with this charity – but just in case not:
https://www.pause.org.uk/
Ofc there is another related parental torment – naively offering your child to ‘mental health services’ in the belief that they will be nurtured. Tim writes so poignantly about this. It’s a big topic for another day.
Vic says
Men receive rehabilitation, therapies, guidance, group supports.
Women receive incarceration, more drugs, and the removal of their children.
21st Century enlightenment. !
chris says
It happened to me. I could not stop pacing up and down the ward after slicing my wrist..akathisia. They gave me 10mg Diazepam I went completely berserk within about 3 hours. They decided it was because I had not taken the psych meds, many hours later They obtained and gave to me, all at once the psych meds.. I went much worse maybe toxic psychosis no full memory of what happened. Probably 2 or 3 days later they operated on my wrist and took me back to psych hospital a day or so later Everyone was utterly vile to me. No attempt at understanding nor realizing it was the drugs. How I didn’t end up in a police cell I do not know. From the psych hospital plenty were being taken by police who in my view and experience actually had akathisia. In terms of akathisia it was just carnage.
It’s just going to get worse as you say and it was terrible back then.
Halley says
I have come across Dr Powers’ Reddit. I don’t understand the details but the mechanism and protocol certainly makes sense – and, he seems to be having some success. Can we really hope that the poor souls locked in to the hell of PSSD/PFS/PAS might recover? If so, what sort of timescale could we be looking at? Months? Years? Decades?
I’m trying to keep my hopes realistic!
Dr. David Healy says
Yes we can hope for progress. But it’s not just Will Powers – check out Irwin Goldstein’s work also
D