This Prize is part of a two-pronged attack on the unwillingness of the medical and regulatory establishments to listen to people with adverse events in general – not just the sexual dysfunctions mentioned here. The second front in the attack will be unveiled in a few weeks’ time.
The idea for a RxISK Prize began with our involvement with sufferers from Post-SSRI Sexual Dysfunction (PSSD) some years ago, and soon after people with comparable problems following Accutane and Finasteride. The motivation and endurance of those affected has been inspiring.
A complete and permanent wipe-out of your ability to make love is among the most debilitating side effects of a drug imaginable. In the case of all these drugs when it happens it affects men and women, young and old, can appear after a few days on the drug or only after treatment stops. It can last for decades, perhaps longer. It leads to suicides, the break-up of relationships and job losses. There is no upside to it.
PSSD shares many common features and looks like it is closely related to Post-Finasteride Syndrome (PFS), and Post-Retinoid Sexual Dysfunction (PRSD) triggered primarily by isotretinoin (Accutane). Isotretinoin is both a serotonin reuptake inhibitor and a 5-alpha reductase inhibitor (5ARI), so it could give rise to PSSD or PFS, or all three conditions may have something else in common.
We have recently submitted a paper for review describing 300 cases of PSSD, PFS and PRSD, and we are aware of many more cases and comparable phenomena happening on some other drugs. There may be tens of thousands affected as some evidence suggests that less than half of those who have been on SSRIs for months will regain full and normal function.
There are communities online and linked to universities researching these conditions as vigorously as the AIDS community once got involved in the search of a cure for AIDS. The most successful of these so far have been linked to PFS, with sufferers having created a Foundation to promote research on this condition. The research done by these groups have followed up all of the obvious treatment leads but nothing so far has worked.
The problems need more thinking out of the box. While serotonin and 5-alpha reductase may be where these problems start, they seem to go beyond this.
The fact that these conditions can appear after treatment stops and endure in the absence of any drug in the body for years is tremendously important to pharmacological science. This is not simple damage in that many sufferers report having temporary restorations to normal. It’s only temporary, but the fact that it happens is both a source of hope and something that in its own right needs explaining. These conditions are one of the central mysteries of pharmacology.
It is important to crack what’s going on because many doctors were inclined to dismiss PSSD, PRSD and to a lesser extent PFS, especially when it began after the person stopped treatment or when it persisted for so long in the absence of the drug. After an antidepressant, it’s very easy to claim that the problem is all in the mind. At the moment, psychiatrists seem to be the worst of all doctors, with urologists the best, and family doctors in the middle.
But PSSD, PFS and PRSD are not the only conditions in which there are enduring problems that may only appear after treatment stops. Tardive dyskinesia (TD) following antipsychotics has been recognized since 1959 and no-one thinks this is all in the mind or that it is impossible when it appears after treatment stops. But at the moment, TD has not been linked to PSSD, PFS or PRSD, and fifty years later we don’t know how it happens or how to cure it.
Another group of problems that share features in common are the withdrawal syndromes linked to antidepressants, antipsychotics and dopamine agonists. Like PSSD or TD, these appear on or after treatment and can last for years, even decades.
Now that we have a range of different drugs that can trigger these phenomena and can trigger them in different bodily systems, the chances of some pharmacologist or physiologist being able to explain what is going on should be much better.
Pinpointing the receptor systems or mechanisms involved could transform pharmacology. It would have implications for many drugs and drug development. There is probably a Nobel Prize for the person who can explain why TD or PSSD happens.
You don’t have to know a thing about receptors to be fascinated by this problem and to appreciate that the picture of a patient with PSSD is actually a window on human nature and identity.
Pretty well 100% of the people who take an SSRI will have some genital numbing within 30 minutes of taking their first pill. We don’t know what causes this. This is a problem right in front of the noses of millions of people. It’s astonishing that we don’t know how this happens. Answer this and we would be half way to finding out what happens to make it endure.
Another astonishing thing is that many of the withdrawal syndromes from drugs involve burning feet, loss of smell, disturbed balance or other odd sensations. These are features of a peripheral neuropathy. The peripheral neuropathies first appeared in medical textbooks 150 years ago before we knew we had brain cells, but we still know nothing more about how they happen than the day they were first described, even though we don’t have to look inside the body to research them.
There are good reasons to think there is a lot more of “us” in our skin and genitals and bodies than we are now inclined to think. We are in a brain dominated era and missing out on things that we may not need input from brain experts to solve.
It is not clear that specialist training is needed to solve these problems, anymore than John Harrison had specialist training when he won the Longitude Prize, 300 years ago.
Some background in biology may help, but even without this you may already have found something that makes a difference and just didn’t know there were so many people out there desperate to know what you know.
You might be a doctor or a data analyst who notices that some patients taking another drug just don’t seem to get the same problems.
For those entirely new to the issues, or those with a pharmacological or physiological background but no awareness of these issues before now, or someone who knows something about it but little about the full range of things that have been tried without success or noted to offer temporary benefits, RxISK has a portfolio of descriptions and leads that can be made available on request.
We are following in the footsteps of the method that led to a solution to the famous Longitude problem in instituting a Prize.
The first step is to raise $100,000 toward a Prize for a Cure. We would like as many people as possible who are affected or related to someone who is affected to make a donation of $200 towards a target fund of $100,000.
As mentioned, solving this problem will likely make a major contribution to solving the enduring withdrawal syndromes that affect anyone taking antidepressants and antipsychotics. Five per cent of the populations of North America and Europe, and anywhere else where antidepressants are used on the same scale, are unable to get off treatment because of withdrawal problems – that is 50 million people in North America and Europe alone. Fifty million cents would be $500,000 – so a target of $100,000 seems more than reachable.
The Prize will be offered to anyone who finds a cure for PSSD, PFS or PRSD. This could be a doctor, a scientist, a drug company, a member of the public – anyone. There are no restrictions.
RxISK has several sufferers from each of these syndromes who have convincing enduring conditions. The Prize will be given if someone can bring about a restoration to normal, or very close to it, that endures in our volunteers.
There are several reasons why we chose to make this initiative about sexual dysfunction rather than other problems such as antidepressant withdrawal. Mainly because the time is right, and there is already a strong basis to build upon. As more than one type of drug is involved, there is also potentially a larger group of people to approach the problem from different angles.
If no one claims the prize, we will use the money to support the most innovative research proposal or donate it to the PFS Foundation who are already undertaking some elegant research.
The difference between a prize and a research grant is this –
In the case of someone who has a cure, assuming it is not costly to administer it, they give it to our volunteers and if it works, they claim the money. Their overheads and costs will be minimal.
Research like that being undertaken for PFS has to recruit perhaps up to 100 subjects and get all to take a large battery of tests which have to be paid for. If the testing involves brain scans, this is costly. If it involves genes, this means recruiting thousands of subjects. A research grant even for $100,000 would not go very far toward helping this happen. And at the end of the day, research can end up with findings but no guarantee that these are the source of the problem rather than a consequence.
But in the absence of a Prize winner, the PFS Foundation already have a research infrastructure in place and research findings that can be built on, and so the money would go further there than anywhere else.
Anybody. We welcome donations from not just those affected by these conditions, but from anyone who wants to help. We have suggested a minimum of $200 in order to reach our target quickly, but we are aware that money is tight for a lot of people.
Obviously any donations over $200 are most welcome, as are monthly donations.
If anyone organizes a fundraising/sponsored activity, we will publish details on the website.
Donations can be made in one of three ways:
If anyone wishes to set up a linked fund that will support tax-deductible donations in another country, please contact us, and we will network into you.
While this initiative is focused on sexual dysfunction, we believe that it also draws attention to the more general fact that patients can be left with persistent side effects after the use of medications, some of which can be life-changing.
We hope that anyone interested in persistent side effects, either because they suffer from them or because they can see this is likely to be an important new frontier in medicine, will consider this Prize a cause worth supporting.
See our next post – How You Can Help. Also see our current total.
I didn’t understaind where is the link to donate. It is absolutely necessary to have a “donate button” so people can easily donate money from home. In order to increase visibility and reach more people possible, why don’t start a crowdfunding campaign on indiegogo (that is tax free for no profit organization) so people can easily donate and are insured to have their money back if target is not reached.
Where I can donate?
Thanks for the comment. We have made the links more obvious. This is one of the top sites people with PSSD and PRSD go to so its not likely a more general crowdfunding effort would get us much further.
But this feeds into another point. Lots of people with these conditions say they would do anything for a cure. In response to this call though not a huge number of those on our lists are likely to donate. We depend on a few to donate a lot rather than loads to donate a little.
This is not to blame anyone. Its a Goliath effect. It feels like we are up against a monster against whom there is no point doing anything. Some of the reasons for feeling this way about all adverse events are things we will explore in posts in a few weeks time. But in the meantime, any ideas you have to tempt people into taking a slingshot would be welcome
Dear professor Healy, please listen to this. There are 2 studies that could be actually funded by your prize.
– In Italy prof. Melcangi that conducted several studies on PFS is planning a studies on mice on order to underlie the persistent effects of SSRIs on brain level of neurosteroid. A single italian sufferer funded the study with 50k euros, so Prof. can send the request of authorizatiauto for the study, but he needs at least other 50k euros in order to do deeper investigation (for example doing investigation on other neurotrasmitters level). Melcangi is also doing a review in order to underlie similarities between PFS and PSSD.
– The University of Ulm’s study, they are planning an fMRI study on sufferers in order to underlie brain anormalities due to PSSD. They are looking for partecipants on pssdforum and that study have to be funded yet with 10k €.
So why don’t devolve your prize to these studies? With only a part of the prize, ie 60k €, you can fund the first 2 experimental studies on pssd that could really do the difference.
Please give me a contact if you are interested in more details.
Thanks for letting me know about this. First we have to raise the money. The post on the Prize does mention that if there is no Prize winner one of the options would be to some one or other of the very elegant PFS research projects currently underway.
But my hunch is that a Prize is a better initial bet than a Research Grant for a few reasons. One is that I think there may well be people out there working on ion channels or TRP channels rather than endocrine or other approaches who either have an answer or are near to one but just don’t know there is a problem they have the answer to. The second is that Research costs a huge amount more and takes much longer than a Prize – research on Tardive Dyskinesia is still looking for an answer four decades later. Sometimes its better get people who are not trying to research the problem to consider instead whether something they know a lot about might be an answer to something they knew nothing about.
So this should not be seen as in competition with current research. Its really aimed at trying to make sure that people taking a wide variety of approaches, that might be very very different to the approach you or I might think was the best place to start from, bring their expertise to bear on this pressing problem.
In’ Psychotherapy and Psychosomatics’ pub by KAKER ‘Withdrawal symptoms after selective serotonin reuptake inhibitor discontinuation – a systematic review’ study published by researchers at Bologna Uni March 2015 vol 8 No2 contact firstname.lastname@example.org.
An Oxford group concerned with evidence based practice publishes ‘National Elf Service’ sub section Mental Elf Service…refers to ‘ 2011 Mechanisms of Tolerance in Anti depressant Action ‘ in Neuropsychopharmacology and Biological Psychiatry’ (Med Link)
Is there any linking up between different researchers going on?
My beef is about the Tower of Babel:
The tower of Babel is built on the use of acronyms instead of legitimate words of the English language.
Intelligibility founders where understanding crumbles.
“What the hell is he talking about”
PSSD sounds a lot like PTSD, and PRSD I have no Idea.
I have to go to an acronym dictionary to find out.
Give the Emperor some clothes. Please.
Hello Tony. I am a supporter of Dr Healy’s work, and part of me wonders if all the impenetrable acronyms are perhaps tongue-in-cheek, echoing corporate excessive orthodoxies of tomes like, e.g., DSM-V, HIV, VD, PMTD, etc. I once ran a helpline called PANTS which stood for Prozac and Antidepressant Alert Networks. I tended to get in trouble on this UK side of the pond because some people thought it was a porn site. FYI I am founder and so far only member of the Society for the Prevention of Excessive Acronyms and, er, I am seeking a suitable Acronym. All suggestions appreciated. Best wishes, LJH oops Linda Hurcombe
(1) Topical progesterone – 60 mg a day;
(2) Pregnenolone (progesterone’s precursor) – 100 mg capsules every other day;
(3) DHEA – 25 mg pill once a week,
(4) D-Aspartic acid – between 1,500 and 2,000 mg per day (usually comes in a capsule of 500mg or 750 mg).
(5) 5,000 UI vitd3 a day
Cure for what? What’s the evidence it helps?
A cure for what? What evidence do you have that it works?
I was going to suggest taking DHEA (capsule/oral)–however the amount depends on weight of the person ingesting it. Please note that women should take less than men as DHEA can produce secondary male characteristics in a woman (by increasing the amount of testosterone in their body). Topical Progesterone Cream is also advised. It should be applied to the soft tissues of the body under upper arm, inside upper thighs, lower belly –alternating these areas each time it is applied–make sure it is a quality brand. Also skin must be thoroughly cleaned before applying. Consuming organic WATERMELON juice is also advisable. The juice removes toxins from blood and kidneys and provides a host of sexually enhancing elements. Watermelon juice has been called “watermelon viagra”. Note that these three substances could very well be the answer to a very serious dibilitating problem. The beauty is that these substances cost relatively little and are easily obtained by anyone, most anywhere. Naturally one needs to do their due diligence regarding the SOURCE of these substances –to insure their purity and effectiveness. I find nature’s remedies to be the best remedies for most ailments (if not all). I would suggest two more actions to go along with the DHEA, the Progesterone Cream and the Watermelon juice. That action is simply walking 1 to 2 miles per day and letting go of ALL anger–anger produces chemicals that are very harmful to one’s body. Cultivate hope, gratitude, and forgiveness (for oneself and others) instead. Attitude is a big part of the battle. I sincerely believe there is a solution for everything–one just needs to discover it. I hope the panel employs these simple measures and see their heartache turn to happiness. Please read the following article: http://www.drdebe.com/articles/dhea-the-real-story. Also look up “Watermelon juice: Benefits for men”. Also look up progesterone cream.
Also stay completely away from all artificial food additives–eat simple organic food only. No junk food! Plus also eat some sprouted seeds, grains, and legumes–sprouted foods are like little vitamin factories…spouted foods have more nutrition than un-sprouted foods. .
To your improved health and happiness, Wendy
Do you have any evidence of this helping – did you have PSSD and did this combination actually make a difference?
Please someone find the cure for PSSD.
I have not been able to experience any sexual desire or pleasure since November 2007 when i first took citalopram. Nearly 10 years now. I have had numb genitals and almost pleasureless orgasms since November 2007 too.
Everyday i suffer. None of the doctors believe me, apart from the Rxisk team. I often feel suicidal. It is an empty shell of an existance for a young man.
I just want to feel normal again.
Problem is end-cannabinoid-system (ECS).
AM-251 or Rimonabant
Tetrahydrocannabinol (THC) / Dronabinol or Minocycline
Is this a nice piece of “theory” or do you have real life evidence of people getting better – and in particular people saying “hey the genital numbness is less/gone”
Anandamide shows promise for lifelong delayed ejaculation
That’s a very nice and helpful theoretical lead. The key thing is to get some people with PSSD, PRSD or PFS to try it and report whether its makes a difference.
It takes money.
Takes very little or almost no money is anandamide or something similar can be got. We can put you in touch with people with the condition – might even be worth giving with an SSRI to healthy volunteers (consenting adults) and see if it reverses the Genital Numbing – in which case 10% of the people you know will also be taking one.
Have you ever heard about Deep Brain Stimulation technique?
Read here http://www.pssdforum.com/viewtopic.php?f=20&t=1540
There’s hope yet when this unique kind of project can’t so easily be taken over by parties with other motives than helping those who suffer. Will donate but am asking whether the college of psychiatrists have made a donation? Or would that upset the apple cart too much? If not individuals psychiatrists and GPs who are or have been prescribing could make a moral choice to donate. Only one user-survivor group has got back to me re possibility of carrying out user led research – they might at least dare to make a donation and circulate this blog – will try again.
As I am not clued up on the science I am daring t make what may appear to be a crude suggestion – if so apologies. Obviously the sleazy experiments of the past by sexual researchers will have taught caution but – As sexual interest is lowered or absent would stimulation with self use vibrators or other ‘things’ or equivalent for men have a chance of re awakening sexual response. Obviously when love making is not making a difference genitally for many and is leading to break ups ,the lack of opportunity to try to generate response often enough is absent. I am also wondering whether the cautious use of what are illegal drugs for a limited period may help to stimulate response as some are known to increase sexual feelings. Use of another drug is a dodgy suggestion but maybe some research into what component makes them generate sexual feelings could be done.
Made a donation. Really want to support this and encourage others to do the same!
I have some numbness in the genital area,and my legs.I have never taken any of these meds.My problem is due to peripheral neuropathy secondary to foraminal compression from disc protrusion and spinal stenosis.I have seen many patients of this problem,many of whom are diabetic,or have spinal stenosis,or were on cisplatin chemo.There are many other conditions that can present this way.In the paper you are submitting,did you rule out the possibility of these other causes?If you did not,your paper should be rejected!Association is NOT causation ! Same goes for all the other claims you have made about other meds! Perhaps you and your group are so obsessed with these drugs,that you are concluding they are the cause of these adverse effects!
Thanks for this. If you have any patients who have had cisplatin who can describe what happens to them this would be helpful to have. It would be an important further clue.
Re causality, readers of this post can check it out for themselves. Pretty well everyone who takes an SSRI, whatever age, sex or state of health will have some genital numbing within 30 minutes. Goes away if you don’t take any more pills. By all criteria of cause and effect, this is SSRIs cause genital numbing. So the next issue is when some people report this persisting after treatment stops, how do we assess cause and effect? Well having reviewed lots of causes from the first person I saw in 2001 and excluded all the things you mention and others, I am convinced as was the person in this case that the drug had caused the problem. I’ve seen nothing since to lead me to change my mind. Part of the problem patients have is they meet doctors who are not willing to believe them. While a doctor has to remain critical and look for other causes if we stop believing our patients both they and we have a problem
Well let me see…
I was given multiple psychiatric drugs known to do this, then my genitals go numb. From age 9 to 21 in otherwise perfect health (multi-test verified).
A timeline as soon as I was put on Sertraline as a teenager It suddenly took 20 minutes longer of sweating to masturbate and ejaculate. That effect died away after time. I cold turkey withdraw on the drug and the opposite happens, I am uncontrollably ejaculating in my pants in a split second when the wind blows. Then as that dies down my genitals go 100% numb again.
It wasn’t anything other than the psychiatric drugs that intervened. The process is very very clear for me.
Its a far more solid reality than other popular theories like ‘global warming’ and ‘the theory of evolution’ or ‘mental disease’ or ‘mental disease medication’ or ‘psychology’ or ‘enter many here’. If you take LSD you expect it to do something and it to be the LSD and not some other factor like the diabetes I don’t have at 15 or 20.
Surely the main concern should be to alleviate the problem and not concentrate too much on the cause of it? People like Spruce are desperate for relief from their problems – I’m pretty sure that they don’t wish to see cold water thrown on this attempt to help them. Worrying about accepting/ rejecting a paper on this can be dealt with later, when Spruce and others will, hopefully, be living proof of its worthiness.
Funny that i got neurophaty few days after few pills ssri, i don’t sweat anymore, and have blured vision 😀
Good idea with prize!!!
Noel Hershfield, people are not dumb, we know exactly if we were poisoned.
I took escitalopram for only 3 weeks as a fully healthy young woman and lost my body sensitivity in just TWO DAYS! I did not have any spine injury or didn’t get diabetes in those short two days neither I took any chemotherapy drugs ever in my life…. It’s obvious, these drugs cause this regardless of how many psychiatrists want to deny its existence (due to their own financial and personal interests – shame on them ! a shameful “profession”!). The very same thing happens to literally thousands of people with exactly the same symptoms and outcome, so it is NOT an “accidental correlation” (with what…?), the drugs can cause this for anyone who takes it!
Noel, The orchestrated denial of common and devastating ADRs caused by SSRIs, SNRIs and other classes of psychotropic drugs brings shame and discredit upon our profession.
Whilst KOLs in Psychiatry and Primary Care continue to proclaim their benefits, other voices of considerable international influence within psychiatry are undoubted as to the adverse and potentially devastating impact of SSRIs on sexual function and fulfilment.
Professor of Psychiatry Emeritus Don Grubin – (Newcastle U.K.)
( Via the National Offender Management System) reportedly advocates SSRI prescribing as part of the Ministry of Justice
on-going program to roll out a voluntary chemical castration program for certain categories of convicted: – sex offenders.
“Two types of medication are available to treat sex offenders.
The first are known as SSRIs — commonly prescribed for depression, anxiety and obsessive compulsive disorder.
They help govern activities such as eating, sleeping and sexual activity”.
Surely this advocacy for SSRIs as a component of chemical castration should compel prescribers for other indications to afford utmost credibility, concern and compassion to patients reporting such a devastating prescription drug toxicity?
As Professor Sir William Osler reminded us: – “Listen to your patient, he is telling you the diagnosis”.
just made a response under Please Plos1 to article in PLOS psychiatry under ‘The Direct Healthcare costs associated with psychological distress and major depression ‘ study was carried out in Canada. NSUN says will put in next newsletter, Do you get any new contributors apart from via the bogs? It’s difficult to know where to try and publicise when so many e mails are unanswered including students unions
I had PSSD while I was taking Paroxetine , at the time I thought it was just the menopause however a couple of years after stopping the drug all is back to full working order which is more than I can say for the rest of me as I have suffered dreadful withdrawl symptoms fir over a decade.
I have PSSD. I came off an SSRI drug in January of this year. 2017 has been the worst year of my life. This condition is a truly horrible situation to be in; the stress, fear, regret, anger and feeling of despair that it causes cannot really be put into words. Nobody can understand the feeling unless they have been in this situation. And I am one of the ‘lucky’ ones in that I don’t have ‘total PSSD’. If somebody can find a cure for PSSD, in my opinion they should never have to do another days work in their life; they would become a hero to everybody who has the condition. There are people out there who are responsible for the suffering of so many people who have PSSD. I hope that one day they are made to pay for this crime. I hope that justice can be done.
Would be good if you feel like this if you can offer leads and or donate. There are groups of researchers out there who can probably solve this – but they need the problem brought to their attention and this looks like a good way to do it.
For anyone reading earlier comments here – the lead provided by Jap above is quite interesting. This was something I had never heard of in this context and it does point toward some interesting and testable possibilities.
Thanks, I have just made a donation. Please let us know how the fundraising is going; I hope the target can be met as quickly as possible.
Bernini’s statue ‘The Ecstasy of St. Teresa of Avila’ in Rome –
perhaps an overdose of anandamide?
The molecule of extreme pleasure
Sujit Kumar Kar
S.K. Foundation, Orissa, India
Molecule of the Month September 2009
Anandamide: The Brain’s Own Marijuana
U.S. pharmaceutical houses, Pfizer in particular, worked with THC for years, seeking profitable patents. But Pfizer never succeeded in separating out the various pharmacological effects of marijuana, and in the end, their efforts were limited to the manufacture of synthetic THC.
“We see them — Pfizer, GlaxoSmithKline, Novartis — all the time at the meetings of the society now,” says Roger Pertwee, professor at the University of Aberdeen in the U.K. and secretary of the International Cannabinoid Research Society (ICRS). “They never came in the past.”
My newer neighbors where I live now is a constant THC storm cloud everywhere and my dick is still numb. I don’t know if this is relevant?
The irony is all they were not on psych drugs and their dicks are not numb because they only take illicit street drugs…
No one else has their dick taken away from them. The people that committed this crime and covered it up need to be severely punished for this untold crime. This BBC article compares chemically castrating sex offenders with antidepressants to eunuchs.
Yet ‘mental health professionals’ give it to innocent children
Funny you say that after how I have been left if I had known before I took the tablets I would have been a lot better treating my anxiety with a couple off beers a day I wouldn’t have ended up left with constant symptoms after getting off the tablets the doctor gave me. Can’t even drink now nervous system shot by the drugs I was given
If you are going to give ‘healthy volunteers (consenting adults) SSR’s will there be need to gain ethics approval first ? It could be risky to anybody potentially and unknowably at risk of developing adverse effects?
Thank you Dr. Healy! I just donated $100. It is good to know there is someone in our corner. Please keep us posted! OTHERS, PLEASE DONATE!
I will be donating soon.
Going on from what Daryl and AD said.
Not only do i want recovery, but i also really want justice too.
I have a deep seated resentment and anger towards psychiatry for what they have done to me. The last 10 years of my life has been a complete misery because of this PSSD.
I will never forget. Even if i recover i will never forgive and forget. So much was taken from me, i dont think i could forgive even if i wanted to.
I not only have a deep seated anger about the misery PSSD caused me, but also the awful response i got from the medical profession when i tried to raise the issue of PSSD with them.
In fact in a lot of ways this was worse than the PSSD.
I was disbelieved, sneered at, told what i was saying couldn’t be taken seriously because i have OCD, stonewalled, laughed at (a number of doctors sniggered about my sexual problems as well). One GP (the only doctor apart from the Rxisk team to acknowledge PSSD to me) refused to talk to my psychiatrist even though he had knowledge of PSSD (this was another betrayal).
I have been slandered by AWP as a drug addict who was abusing his benzos, even though they had no evidence to suggest this (i swear on my life i wasn’t).
I was told my sexual problems were pre existing to me taking psychiatric drugs (i had no sexual problems before taking psychiatric drugs).
I cant believe they had the nerve to try and make out my sexual problems were pre existing. And they expected me to just accept this. How insulting to my intelligence can you get.
Also AWP lied through their teeth about so many things when my complaint went to the ombudsman, who believed every single lie they said, and did NOTHING, even when i was able to prove they were lying in two incidences.
This is only some of the bags of tricks the system will use against you if you continue to push for answers.
A lot of people really dont realise just how nasty the system can turn on you if you dare to complain about the damage these drugs can do. I was really shocked at how nasty they can get. I still cannot believe how badly i was treated.
Absolutely zero thought or concern was given to how the PSSD, and the way AWP responded, had affected me.
Also i made my complaint in a polite measured way, doing everything to make them see things from my point of view, rather than just responding along the lines of “your a bunch of bastards, look what you did to me”. Even though i made my complaint in a calm, collected way, i was still treated as i was.
I dont care if it takes 10, 20, 30 + years, i am going to get my pound of (metaphorical) flesh somehow for what happened to me. If not i will die trying.
I will never stop.
I don’t really understand how such toxic drugs are allowed to be prescribed – in years to come they will possibly go down as another barbaric method of ‘treating’ mental illness. By chasing this route it may be that other more innovative and humane methods are missed. In the meantime hopefully a remedy for adverse effects will be found soon. It is unknown how many are harmed when not all will be reported or raise complaints and concerns formally. The shock of how people group together to silence those who do speak out adds to the stress but thankfully some manage to keep going. At the stage of acting in a civilised and courteous manner people are often told to put it behind them and get on with life. It is sometimes well meaning but just pushes things under the carpet. It is admirable that such as you and others who blog etc will not give up. When discouraged there is a temptation to bin everything but keeping a record of everything is essential. The victims of sexual assault including by medics were and sometimes still are treated in the same way as you describe . They are now winning court cases and taking group action. Best wishes susanne
I believe you I haven’t been left with pssd but I have been left with hundreds of symptoms five years after stopping seroxat like you it is all denied your not taken seriously these doctors are a joke. The best one is I went for an mri and eeg and the neurologist said in the letter I was suffering migraines. Unbelievable they haven’t got a clue I have had migraines in the past but they never caused electric bolts to shoot in my head intermittently for four years and all the other things I’ve endured the list is endless. I totally feel your frustration off being let down by these doctors etc its criminal
Good move! Everybody please share the link to this project far and wide and donate! Post it across all the PSSD/SSRI forums. Let’s bring in the wider SSRI/PSSD world on this. It is the way forward. The only way this scheme will fail is through lack of awareness, lack of publicity; so share it everywhere! It is vitally important that you do this.
RXISK Issues $100,000 Prize for the Cure For PSSD
1, 2by fema4psyciatrists » Wed Sep 13, 2017 4:18 am
in FORUMS » Activism
PSSD Collaborative Research
A forum dedicated to collaborative research into PSSD (Post-SSRI Sexual Dysfunction).
Why PSSD Exists
11) One hundred and twenty cases of enduring sexual dysfunction following treatment, Hogan C, Le Noury J, Healy D, Mangin D, 2014
Several prominent doctors and researchers acknowledge the existence of PSSD.
will this be a cure for all the permanent side effects or adverse reactions, or just for PSSD?
Its obviously not a cure for all adverse reactions which may have many sources. But there may be something in common which all enduring side effects share. So while for instance the Prize might only treat PRSD and not PSSD or PFS or TD or enduring withdrawal syndromes, the chances are the mechanisms involved will open a window on how enduring problem happen which wiil lead on to a cure for these other problems
I’m portuguese. You will find language mistakes below…
Portugal is second in the world in antidepressant consumption per capita, behind the US…
I want to remember History.
In 1949 a portuguese neurologist called Egas Moniz received the Physiology (Medicine) Nobel Prize for the invention of the Lobotomy.
It’s a medical procedure where a hole is drilled in the front of the skull and cerebral damage is performed with a needle like instrument. https://en.wikipedia.org/wiki/Ant%C3%B3nio_Egas_Moniz
Fast forward 68 years and after the establishment of multiple legal dispositions, an award winning medical procedure is considered now:
-A violation of the bodily integrity
-A violation of human rights.
“Doctors put drugs of which they know little into bodies of which they know less for diseases of which they know nothing at all” Voltaire 1694-1778
This quote with more than 250 years is valid to the current psychiatric practice.
In 2017 Psychiatry cannot sustain a critical analisys:
-Cures zero diseases (defined by majority vote…)
-Doesn´t have an objective scientific diagnostic method.
-Doesn´t understand the brain chemistry.
-Doesn´t understand how the drugs prescribed work.
In 2017 a psychiatrist is an individual with a white coat that denies informed consent to potential customers so that they can be convinced to buy drugs. They are not medical doctors.
At the present scale of psychiatric drugs consumption, Psychiatry is violating the individual bodily integrity, violating human rights, and is commiting crimes against humanity.
In 20 years from now, people will only buy antidepressants at gun point. We’ll have to wait. The truth is like the atom bomb: needs to get critical mass… Being right before time is the same as being wrong.
In the times we live in, human beings are victims of their own architecture. Corruption, manipulation, hipocrisy are used to satisfy our needs and vanity (genetic promotion). That makes us stupid: climate change, 60% drop in sperm count in the last 60 years, 1 in 70 kids is autistic in the US, GMO’s, bacterial multi resistance, 1 in 3 newly born will develop cancer…
PSSD is only an aspect of a broader neurological damage caused by SSRI’s and antipsychotics. Akathisia, thardive diskynesia, dystonia are easilly observable. Anhedonia is harder to define… the inability to apreciate when your football team scores, the inability to cry at the sound of violins, the indifference to a fortune game or your useless penis when you look at an naked Sophia Vergara…
With PSSD you’re not alive, you simply exist…
Like someone wrote here you are buried alive.
Men with PSSD will know what Alprostadil is…
and they will also know the meaning of “useless erection”…
Hi, I have posed about this before on here but thought I would mention it again. I am someone who has long term PSSD but I am able to turn it off and on to a certain degree. Essentially I have a separate medical problem that I have not been able to get diagnosed yet. I seem to have a hypersensitive response to Vitamin D. When I take it, I experience certain symptoms (bone pain, kidney pain, increased thirst, acid reflux and others). I think this may be due to hyperparathyroidism but that is just a guess, it could be something else entirely. I am currently seeing an endocrinologist to try and get this diagnosed but they are pretty hopeless and never listen like most doctors I have encountered. Anyway, the point is, when I get these symptoms from vitamin D, I also experience mental changes. I can sometimes feel like my mind is racing and I develop hyper sexuality. I can go from my genitals being quite numb and having a very low sex drive, to feeling extremely horny and very sensitive within a few hours. The first time I discovered this it was like a miracle as I had persistence sexual problems for over 4 years at that point.
I wouldn’t say that it makes my sexuality normal, because it actually makes me too horny and I can’t stop thinking about sex. I also get other benefits for other symptoms that have persisted during withdrawal. Again, it’s not a cure because it doesn’t make me normal, but it is definitely a clue as to the underlying cause. If you could figure out the mechanism by which I was getting these effects it’s possible a treatment could be found for others. Although it is also possible that I have a milder case of PSSD and these vitamin D effects wouldn’t do anything for someone with complete numbness.
I thought that somewhere to start would be giving people with PSSD calcitriol. That’s the active metabolite of Vitamin D. Perhaps you could induce the state that I experience in them. Of course, they may also get the bone pain and kidney pain like I do, so it may not be viable long term.
Thanks for this. This is just the kind of lead that might well offer important clues to someone who knows more about the underlying physiology.
How do we submit potential cures?
You can submit to me. I have a panel of colleagues whom I have seen personally and am convinced have enduring problems. They have been investigated thoroughly and nothing has worked to date, so if something works they will be convinced and I will too. The only people who know about what you submit will be me and them. The first thing obviously is that what you propose has to be safe and feasible. If you can’t persuade people to take it its a non-starter. To do this you may need to lay out the basis for thinking it might work and how you think it works. And bear in mind, many people badly affected by PSSD, PRSD and PFS, while desperate for a cure, are understandably wary about trying things. The second feature is that it has to work
I should point out we don’t have $100K to hand over to anyone just yet. Money is coming in and I will update people on the state of play at regular intervals.
Thanks for the reply and for spearheading the project.
I’m a website developer and have been in marketing companies for 10+years, so just a few tips that can help, no hurt feelings if you do or don’t, just my two cents:
-I don’t know what you mean by “submit to me”. Is there an email address or form somewhere on the website? Someone else posted their rather brief solution in the comments, which I assume is the place not to put them for many reasons.
-Web users have very little attention spans, if they don’t see the Submit form/button and Donate form/button at the top of the page / navigation bar in big writing, they will leave. Another person already commented that they couldn’t find the donate button.
-Equally important for people who browse the site on their phones. I would go as far as adding this page to the navigation bar so phone users see it in the drop down menu.
-As the fundraiser stands, it feels a little bit shady due to the fact that there are no official dates, no official rules, no official guarantee that the people with the answers will be recognized, other than what is said in this blog post. This is where sites like goFundMe, kickStarter etc excel, because they provide legal support to the donors. Where are the legals, terms of service, etc? People are more likely to pay when they feel safe.
-Showing total amount donated so far can work wonders by making those who have not yet donated feel that their contribution matters and is not being wasted. Yes it says if no one finds answer that proceeds will be donated to another organization, but the motivation to donate in this case is this specific contest and is probably why most will donate.
-There is no tentative ending date of the money drive. All the crowd funding sites have them because they provide trust to the donors that it isn’t a bottomless pit that goes on forever. Also, it can make people donate quicker to meet the deadline. The drive can and usually does continue after the deadline.
-Yes the money goal has not been met, but there are people who would still provide answers right now:
1) Some have / would do it without financial compensation (such as the current handful of videos on youtube, etc)
2) Some would use a website / project such as this because they have a greater chance of their solution being heard and attempted, whereas the majority of people on message boards are down in the dumps and tend to ridicule those who have succeeded or have out of the box ideas
3) Once again people have short attention spans. They may only visit this fundraiser / website one time and never come back, if they can’t perform all actions the first time around they may be lost for good.
4 ) Others would be willing to provide answers now, and wait for whatever the prize is.
PS – Not a cure for the sexual issues but what worked for me with the “brain zaps” in case it contributes to anything. I attempted to stop the medication 4 times in three years but could not due to the disorientation, fatigue and “brain zaps”. I finally succeeded 11 years ago by going to a therapist who performed “Bowen Therapy” (or Bowen Technique) on me. It only took one session and the zaps were gone the next day. I don’t take credit and have no idea why exactly it worked, I found this solution out on the internet from other people as I was desperate.
Thanks for all this. There will be a post next week telling everyone where the campaign has got and rolling out the next elements of the strategy.
Hope Shay’s points are taken on board – really helpful advice about the hows, whys and don’ts of online donations. Like – the short attention span of many people browsing. Some kind of indicator of donations – like the ones for online petitions, seeing the red line increasing is a huge incentive to add one’s name.
Just the sort of practical comment we need in so many areas – from biologists, physiologists, chiropodists etc etc – to pluck a few skills at random.
I dont know if this is of any use to anyone, but i have seen a slight pattern in my PSSD over the years.
Whenever i get the small improvements in my PSSD, they are almost always stronger in the morning (especially for about half an hour to an hour after waking), and are often much weaker/ disappear in the evening. I have noticed this consistently over the years.
I have heard free ranging testosterone is highest in the morning. I dont know if that might have anything to do with it.
Also some of the best improvements i have ever had have been shortly after waking up after dreaming in the early hours of the morning (like 5 or 6 am), and i have then often gone back to sleep.
David I think it is great your working towards finding a cure for pssd but is there also going to be research into finding a cure or way to ease constant/persistent withdrawal syndrome/adverse effects in people who have stopped these medications who are drug free and haven’t returned to baseline and get no validation from the so called medical professionals that there suffering is real ?
So where do you post hypothesis? Cure?
If you want to claim the Prize – get a proposed cure tested – then you email to me David.Healy@rxisk.org. If you want to donate a hypothesis to others who might want to check it out and claim the cure, or just comment on the likelihood it will help, you can post it here.
There will be a further post in 2 days time filling in more details. You might want to wait for that
There is a lot of info on the web if you google acupuncture for treating sexual dysfunction and other adverse effects of anti depressants and specifically SSRs . There won’t be that many people who have tried it as is expensive and would need to get to a reliable clinic – which could probably be recommended by their regulatory body. If the money was made available would it be worth trying? Seems promising from info on web sites. If there was a good result it would be also be a good outcome for acupuncturists who might want to get more involved. Acupuncturists have the advantage of treating the whole person as an individual with specific treatments for their condition – and the treatment even if unsuccessful can’t cause any adverse effects unlike the potential for increasing more complex adverse effects if trying more medications.
See the follow up post – if we establish a Prize no one will have to pay to go to an acupuncturist or anyone else
Thank you for to Dr. Healy and everyone on the RxIsk team for initiating this prize. I just donated $250. I’ve been a sufferer of PSSD since 2005. It’s a true nightmare that precludes a meaningful, satisfying existence. Any progress towards treatment or cure would be a miracle for me and so many others.
Dr. Healy – is there a forum where sufferers can share personal experiences they feel may be useful? Such as things that have helped, things that haven’t, comorbid symptoms, etc. Seems like a repository of such information could offer clues, though admittedly potentially amongst a lot of noise
Thanks Dr. Healy. You’ve often been the only voice speaking out against the corrupt, pseudeointellectual ‘medical’ community who deny their drugs are anything but ‘safe and effective.’ i have a severe case of PFS, received nothing but a shoulder shrug from the people who butchered me.
A problem is only a problem if you refuse to look for a solution.
If you do not take action to fix it then it will remain a problem.
~ Catherine Pulsifer
I had a ‘lightbulb’ idea last night and had read all these comments about how many people are suffering and how they desperately want help for a sensitive problem, that is still considered a nightmare taboo.
Many people have a tendency to shy away from post SSRI sexual dysfunction because they are either:
2. embarrassed that no one will see them as worthy because of their sexual dysfunction
Sexuality, is part of who we are and if we feel that it has been assaulted, damaged or taken away from us in any way, shape or form, it can certainly bring about anxiety, stress, frustration and an element of unworthiness.
If no one has experienced post SSRI sexual dysfunction, it can certainly make you feel alone and down.
If I was in the healing profession, my first port of call, would be to conduct some non-invasive tests to determine if there are NO other underlying causes.
I would start off with blood tests to eliminate that the person has not got diabetes or other medical issues (peripheral neuropathy) because form what I understand diabetes and peripheral neuropathy, may induce sexual dysfunction.
Once diabetes is treated perhaps the patient may get some feeling back in the genitals.
Treatment of diabetes can be healed through diet and a naturopath can help people with this debilitating disease by putting them on a proper diet.
If diabetes is the cause then I am hoping that gradually, given time, the sexual dysfunction may disappear.
If diabetes or other medical issues are ruled out then other therapies may play a pivotal role in helping people with post SSRI sexual dysfunction.
Chiropractors and physical therapists may be able to help people with post SSRI sexual dysfunction.
Many people, like I mentioned, may be too ashamed or embarrassed to seek help because it involves the most intimate part of our body.
I can’t recall which blog mentioned gentle electrical waves of impulses applied to the unresponsive genitals however, I am starting to believe and have faith that this is an area worth exploring.
Any form of gentle pulsating electrical stimulation or therapeutic ultrasound to the damaged or unresponsive area concerned may stimulate damaged nerve tissues and systems.
This kind of therapy applied to the areas of the body that are not responding may help to prevent further wasting away of damaged nerve tissue.
It may help build up strength to weakened or damaged tissues and nerves that have not been responding.
The electrodes can be gently attached to the patients sexual organs to help muscles contract.
Perhaps, with the gentle pulsating electrical stimulation the nerve synapses that are dormant, damaged or weakened may be triggered to start coming to life, again.
The gentle rhythmic electrical pulsating impulses, may aid to stimulate muscles, nerves and tissues to the unresponsive sexual organs.
Some may experience or regain partial or permanent recovery depending on how many sessions are required.
I believe that this kind of treatment is worth investing in and chiropractors and physical therapists can collaborate with one another to determine which gentle electrical treatments, work best.
Anything that does not harm and will assist to stimulate dormant and unresponsive nerves is worth a try.
To increase circulation and target on inflammation and swelling, gentle electrical therapy combined with gentle manipulation of the spine, may be worth a try.
Increasing distribution of blood, oxygen and nutrients to responding sexual organs, may be beneficial and come with desirable outcomes.
Chiropractors and physical therapists or any other complementary medicines that may help with post SSRI sexual dysfunction is in my opinion:
– cost effective
– does not harm
– may be the answer, that many have all been waiting for.
This therapy may take time but I have faith that if these healers put their minds together, they can do so much to benefit patients who are suffering from this sensitive malady.
A lot of this is off the mark. The sexual numbing on these drugs happens almost immediately and can become permanent almost immediately in too many young people to thnk they all have something physically wrong with them.
The point behind a Prize is so that people with the problem can stop doing the work, stop paying out money and taking risks but can wait for whoever things they might have an answer to come to us.
The golden rule is s/he who has the gold rules
How do you submit a proposal for the prize? I would like to get involved with coming up with a cure? Are you waiting to raise all of the money first? I would like to start working on the solution, but I cannot find out if there are guidelines for submission.
Its in the follow up post. We have a number of people affected who if they say the treatment reverses the problem I and the rest of the RxISK team will be convinced.
But I must tell you everyone who has P-SSR/RSD/FS has done a lot of research and many have tried most of the obvious thing. And because nothing is safe, these volunteers are unlikely to try any bright ideas. In other words you cannot expect them to do any work or take any risks. You pretty well have to have a cure rather than a good idea before anyone is likely to try it. And the best criterion for a cure is that you have already tried it out on someone with PSSD or PRSD or PFS and have convincing evidence it will make a difference. At that point we will put it to the test and see if the claim holds up.
There has to be a claim rather than just a bright idea.
At present we are still fund-raising. We will be putting up graphs next week to show how its going
Thanks a million for this initiative !! I have been a PFS sufferer since February 2014. Symptoms hit me within about 48 – 72 hours and I was a living dead for almost 2 years. I have survived so far, and cannot overstate how amazing it feels to see this condition starting to be recognized. Best of luck!
I wonder if there is some connection to the mechanisms of action to the drub Buspirone. Although I haven’t taken Prozac nor Buspirone since 2008 (PSSD set in after taking last Prozac pill after a 6 month taper), while taking the SSRI, once I started taking Buspirone my diminished sexual function and libido improved tremendously. In fact, while taking Buspirone (along w/very high doses of Prozac) my libido was very strong and I had the ability to orgasm.
I’d be curious what kind of reaction I’d have if I tried Buspirone again but I have put all psych meds in my past and have pretty much fully recovered from severe OCD using natural means. Dr. Healy, are there any natural alternatives to Buspirone. Or, what about Buspirone improves sexual function?
There have been several PSSD forums and those involved have been all over issues like buspirone and related drugs. These drugs do have the opposite effects on sexual functioning to ssris – initially – but once an enduring problem sets in they are of no benefit. If only it were this easy.
If you’ve been brave enough to confide in a friend send them this link. You’ll be surprised at how king and generous people can be. Even if they donate a £1 it all helps.
what do you think about it David Healy? if i was on a lot of antidepressants and antipsychotics, and i had got severe adverse reaction and i stopped and my symptomps only worsen minute by minute, what is the reason, what do you think? neurotoxicity? or apoptosis? or what? i feel my all head is outburning and fried and i cant think absolut. i tried all supplements and vitamins and drugs, nothing effect. it seems is permanent and progressive. thank you.
I think its linked to Na (sodium) channels – see our complex withdrawal and PSSD pages on the RxISK Tools bar
thank you. and if it linked to sodium channel, how is got healed?
That’s partly the point behind the prize – to get experts on sodium channels interested. That said if you do some work on the issue you might come up with some ideas
Maybe low level laser therapy? oh the brain the most difficult thing in the world. But i cant believe that Big Pharma who make these poisons dont know the answer how work this drugs and cant believe that noone know the answer what is the treatment when we get psych meds and some people’s brain will death.
At the age of 39 following the birth of my second child I had what could be described as hormonal havoc….Mood swings, low energy, lack of libido cessation of periods. This was 2001…….. 2002 My beloved Father unexpectedly died. I had mentioned these symptoms to my GP, was given the usual what do you expect…..I was working, had 2 young children to bring up and the stress of my Father’s unexpected death made things seem a lot worse. I was told my physical symptoms were all in the mind…..I was already dependent on a Benzodiazepine ( Long Story ) but feeling a little overwhelmed I took the offer of sertraline. Now I had taken Amytricyline, beta-blockers and Ativan in my twenties and suffered a marriage break up and subsequent divorce….Not once was my sex drive affected. Things really declined even more on Sertraline so I decided to try and get some answers…Convinced this was all in the mind I sought sex therapy with a very Credible Sex therapist I also booked a private appointment with a Gynaecologist who took some blood……A couple of weeks later He got in touch to inform me I was post Menopausal….I was 43…..He said I probably had gone straight into Menopause after Childbirth. At the time I did not ask why…I told my GP this. tbh the Menopause was staring her in the face. I then was referred to an endocrine specialist for quote, low libido, who did bloods said my oestrogen and testosterone levels were low ????? I was then given HRT which did not agree with me……Why did no health care professional GP( Female) Gynaecologist ( Male ) Endocrine specialist ( Male ) Sex Therapist ( Female ) ever suggest the flagging libido PSSD was as a result of the Sertraline. It was crucifying being told repeatedly Quote that the biggest sex organ of the body is the Mind / Brain…No amount of sexy undies, romantic dinners, sex toys made any difference…Hell in 2009 I went half way round the world to see my childhood friend does anyone know how shaming sad and weird it feels to be given the rampant rabbit ( Remember Sex in the City ) and have it humiliate you…….It is criminal this patient blaming……..I am interested as to WHY long term benzo use dos not seem to affect sexual function but anti-depressants do……Empathy for all suffering in this outrageous manner……..Thank you DH and Risk for venturing where other Health Care Professionals fear to tread!!!!
If someone did come up with a cure, how would they claim the prize without risk of their idea being stolen? Also, if a cure is found before the $100,000 is raised, will you continue to raise the rest? or will they only get what has been raised at the time?
This has been explained in posts and comments. We have a panel of people with PSSD, PRSD and PFS who if they respond we will say a cure has been found. But to get people who have been injured to try something, it has to make sense and be safe.
How can you become a volunteer in testing a potential cure? Also i’m guessing that people who donated money have no guarantee of getting the cure.
If you are willing to be one of those who tests out new things, please send more details. I assume you’ve filled a RxISK report.
We don’t go giving people things out of the blue. If there are proposals come through to us, the first thing is we vet them and ask the proposer exactly why they think the thing might work and what evidence they already have that it does work. Lots of people have what seem like good ideas to them but which we in rxisk or some of the volunteers we have don’t think sound so clever. Unless there is a strong case to be made, its not reasonable to ask someone who has already been injured by a drug to try something else.
We have a panel of volunteers whom I have met or corresponded with whom I am convinced have the real thing and if they tell me a treatment has made a difference, I will be inclined to believe them – especially if 4,5 or 6 people in a row all say the same thing.
Re the Prize, – donating to the Prize as such doesn’t put anyone on the volunteer list. Most of those who have donated do not have PSSD.
We are looking to a fund raiser involved in this and hope that we can significantly boost the Prize Fund making it attractive to researchers and others to get involved. Meanwhile we are always looking for good way to raise awareness
I’ve just filled a rxisk report. Is there any other way i can share any additional info? Willing to test experimental treatment is rather hard decision. I’m more concerned about being diagnosed with pssd and getting the eventual cure. I’m wondering if you have any long term strategy on what will happen when the cure is found. Who will get it?
Just as soon as there is any signs of something that helps, we will let people know. This is not information to withhold from people suffering with such a cruel condition.