RxISK has had twenty-two stories and features on sex and drugs over the last two years – more than on any other topic. While we have a Sex Zone on the RxISK front page because we thought the topic might be of some interest, we didn’t expect sex to take over quite like this.
There are a few reasons sex may be so hot.
Mysterious effects
First a great deal of what is involved is mysterious. Many drugs significantly compromise sexual functioning – but little of this is in the books.
In a world where we can isolate invisible genes that code for all kinds of disorders, and whistle up vaccines to tackle the latest microscopic plague, we seem to know little or nothing about very obvious parts of the human body that we spend a great deal of time staring at and thinking about.
For instance if someone places two pointed objects on the skin of your back an inch or more apart and ask you how many things are touching you, you will say one. Our backs are close to blind to touch it seems. But yet our backs are one of those places where sensuous touch works best – where a gentle almost imperceptible touch can get every hair to stand on end. This electric reaction seems to depend on a special kind of nerve fibre, C fibres, but a particular subdivision of C fibres we have known nothing about until recently and still know very little about.
This is extraordinary because nerves were discovered three hundred years ago and most of the mapping of nerves to the brain was done over a hundred years ago. I thought we knew most of what there is to know about all this but it turns out we don’t know the things that count.
As an expert on the serotonin system, I thought I knew most of what there was to know about this too, but on RxISK a woman who has no university training, and no background in biology, Anne Marie Kelly, taught me things about the serotonin system that no one knew – by just insisting that what she could see happening to herself was in fact happening – that SSRIs made her crave alcohol and drink compulsively – See Driven to Drink.
The mystery of sex and serotonin
It’s been the same with sex. There have been many people with Post-SSRI Sexual Dysfunction (PSSD) who have outlined on RxISK aspects of sexual functioning and the effect of drugs on sexual functioning we just didn’t know about. It’s pharmacologically baffling for instance why side effects like PSSD often appear after the drug has been stopped.
In the process of doing their own research, many of those who have been in touch with RxISK have made it clear that a key problem they run into is doctors who refuse to listen, who dismiss as impossible things that are clearly happening. Doctors who don’t even help in the way they could by simply showing a basic curiosity. For whom research is something that happens elsewhere. In the face of so much desperate suffering, this shouldn’t be the case.
You can see the process of ordinary people getting to grips with strange clinical phenomena that the experts know little about in this account of Persistent Genital Arousal Disorder (PGAD). PGAD is the mirror image of PSSD. It too can be triggered by SSRIs. What you see in this link is a group of women making exactly the kind of observations that are needed to help work out what might be going on here.
Mysteries of the skin
In the middle of the observations these women make on PGAD, you will spot one woman mention vulvodynia. This means a burning sensation or pain on touch in the vulval area.
Many medications such as benzodiazepines for anxiety, triptans for migraine, anticonvulsants, mood stabilizers and fluoroquinolone antibiotics can give painful skin sensations in different parts of the body. The technical term is Tactile Allodynia. This is almost the exact opposite of the genital numbing found with SSRIs. The numbing and the pain probably have a common root. These “weird” effects are often dismissed as psychosomatic. Or they are dismissed because the doctor you consult hasn’t heard of anything like this before.
We need to map all the treatment linked skin conditions – what drugs are linked with what painful, numb or other strange sensations and where on the body these are most likely to occur. You might have thought we are now putting billions of dollars into genetic research because we already have obvious things like this sorted out – think again.
If we are going to find a treatment for conditions like PSSD, and Tactile Allodynia, it will be most likely to come from the observations of people with no background in healthcare who don’t go by the book and who are able to stand by the evidence of their own eyes or fingers.
Mysterious treatments
The standard approach that people affected with PSSD have taken to solving the problem has been to think in terms of neurotransmitters. This is probably the wrong way to think but it can be useful it if gets people to try things out. Trying things out is the key thing.
On RxISK we have researched a number of left field options – unfortunately these haven’t worked either.
But here are some more.
Benztropine
Benztropine (Cogentin) is usually thought of as an anticholinergic drug. But there is some evidence that low dose benztropine may have nerve healing properties – see Come in Benztropine. Based on this four men have tried it.
- One had a temporary response in the few days after he stopped a short course.
- The second had little or no response to a short course.
- The third had no relief in three months of taking but felt better in himself – interacting with others more and laughing more. On stopping it, he was close to back to normal sexually for a ten day period before the benefit waned.
- The fourth has recovered most of his sexual functioning with even his testosterone levels coming back to normal – on treatment. He also feels good. But he did not have marked genital anesthesia to begin with. We have to wait and see if this response will be enduring.
The feel good effect may be more anti-cholinergic than nerve healing. Anticholinergic drugs in the right dose are euphoriants.
Selegilene – Deprenyl
One of the most mysterious drugs in medicine is selegilene which was traded under names like Deprenyl or Eldepryl. This was discovered by Jozsef Knoll in Budapest in the 1960s. The original discovery and Knoll’s later work on the drug was worthy of a Nobel Prize. The full story is here – JKnoll.
Selegilene it turns out is a good antidepressant – an MAOI – monoamine oxidase inhibitor. It also became the first line treatment for Parkinson’s disease. All this happened while Knoll was discovering that underneath its headline anti-Parkinson’s and antidepressant actions, just like underneath benztropine’s anticholinergic effect, there was another more important action that took place at a fraction of the usual clinical dose. At low doses this drug releases neurotransmitters. In animal studies this effect appears anti-aging and seems to rebalance neurotransmitter systems.
Knoll’s insights were the basis for a huge upsurge in interest in the idea of smart drugs or cognitive enhancers, and the search for anti-aging treatments. He has had an extraordinary but unrecognized effect on many areas.
If there is anything to Selegilene for PSSD, the ideal dose to take would be 1 mg per day. The only way to do this easily is with Selegilene liquid but this has gone off the market in some countries (like Britain – although it likely could be ordered). The other approach is to get Eldepryl 5 mg tablets and quarter these.
With a treatment like this, while Selegilene has many immediate stimulant effects, there will likely be no immediate change in PSSD. So the judgement call will be how long to continue with treatment to see if it rebalances systems. Several weeks, even months might be worth looking at – some people take this dose for years for cognitive enhancing or anti-aging purposes. (But bear in mind, the human body is not designed to withstand chronic poisoning with anything from Aspirin to Antidepressants).
A political mystery
One reason why there have been so many posts on Sex has been down to John Tucker. Tucker is a Wikipedia editor, who goes by the name Formerly 98. He has previously worked for the pharmaceutical industry – this is not a crime but is disingenuous in the light of what happened.
He took down the Wikipedia page on PSSD. Tucker and the Wikipedia structure then sabotaged our efforts to reinstate the PSSD page. Wikipedia also took down posts on sexual dysfunction following Finasteride. The controversies this Wiki-Censorship gave rise to generated a series of posts that can be seen in the Sex Zone links.
The German, Chinese and other Wiki sites on PSSD haven’t been affected in this way. What’s going on?
John Tucker made a big deal about the fact that the SSRIs are all off patent and there was therefore no conflict of interest involved in his dispassionate scientific analysis of why the PSSD Page wasn’t justified.
But there are skeletons in the industry cupboard. In the 1990s NIH studies on fluoxetine showed in juvenile animals that fluoxetine wiped out testes and sperm production and shrank ovaries. If SSRIs can do this in juvenile animals, they can do it when given in utero and in children.
In the 1990s across Europe the newly introduced SSRIs came with warnings. Do not give in pregnancy. Women of child-bearing years must be using adequate contraception. By 2000 most of these warnings had evaporated. As the European Medicines Agency came into being, there was a requirement for companies to “harmonize their labels”. In the face of data that all companies had showing that SSRIs could have profound effects not just on sexual functioning but on the sexual body, opted to harmonize sex out of drug labels.
No conflict of interest?
Well if no one makes a link between their drug intake as a child or teenager, or a mother’s drug intake, until they are three years past the age of twenty-one, the companies will have got away with this gamble. If a link is made, the gamble will have backfired.
A cosmic mystery
Who could roll the Dice?
Anyone with a Birth Defect, Autistic Spectrum Disorder, Mental Handicap, Developmental Delay, or Asexuality following antidepressant use in pregnancy or PSSD, PGAD, Asexuality or other conditions following SSRI intake during childhood.
Suffer the Little Children.
Illustration: Adam and Eve on Prozac (No fig leaf required), © 2014 created by Billiam James
aaron says
I’d like to let Formerly 98 have a peice of my mind. What a complete and total menace. I bet he’s never taken an SSRI. Lowest form of life on the planet.
Johanna says
About 2007 or 2008, Seligilene was reissued as an antidepressant in the US in the form of a skin patch called Emsam, 6 to 12 mg I think. The idea was to benevolently trick psychiatrists into using MAO inhibitor drugs again. Their use dwindled to almost zero once Prozac and Paxil came out, till most doctors saw them as Bad and Dangerous due to the risk of stroke if you didn’t follow the dietary restrictions. The patch was supposed to greatly reduce this risk, so the 6 mg dose could be used with no dietary rules at all.
Emsam never took off, mainly because the price was sky-high and the FDA recommended following the dietary rules at doses higher than 6 mg, just in case. After two semi-rocky years drug-free I agreed to try it, since an older MAOI drug, Parnate, had helped me years ago. It was strange – I felt my mood lift almost immediately, along with feeling more alert and “sharp”. However, the effect wore off very, very early. After just two weeks of daily patches, I was back to square one and wondering what went wrong. I’d seen antidepressants stop working before, but only after months, not days.
I took it for so short a time that I can’t recall any sensory effects. I do know that very high doses of Parnate in the 1980’s left me with paresthesias and oddball aches in my legs that waxed and waned, but persist to this day. Over the years I’ve been “worked up” for MS, lupus and every other damn thing. It only took 25 years for someone to admit it was the Parnate, after all. However Parnate also made me feel a tad less alert, not more alert as seligilene did.
As for being a “smart drug”, to me it seemed a lot like Adderall and other amphetamines. They give you the stamina to concentrate for longer periods, plus a subjective feeling that you’re getting sharper – but efforts to show that people actually do better work, or even score higher on tests, usually fall flat.
Many of amphetamines’ nice effects, from “smarts” to weight loss, wear off in fairly short order unless you up the dose. That’s because they’re addictive, of course. Did my experience on Seligilene represent a sort of ultra-fast addiction, or something else? Did it have something to do with all that Parnate years ago permanently altering my nervous system? Who knows—just one more itsy-bitsy piece of the puzzle, which may or may not fit somewhere.
Brooks says
I’m a law student finishing my degree. If you can read this I want you to know that these people affected by these seregenic drugs are not going to be swept under the rug or forgotten, despite the suicidal thoughts that may enter your mind, or that gut wrenching feeling you may get when your in the backseat with a beautiful woman and you know you cannot achieve an erection, I want you to know you are not forgotten.
If John Tucker wants to help cover this horrible disaster up then let him; he too will one day answer to the Lord for what he has done. After completion of my degree I have full plans to represent everyone effected by these drugs in a class action lawsuit.
jim says
Thank you and I appreciate your passion. I will be first in line when you do. Even if there isn’t substantial reward, someone needs to pay.
jess says
Yes please do that. I cant believe what these tablets have done to us. They should be taken off the market immediately. It would mean the world to me if some justice could be restored as this pssd has affected my life quality! Thank u so much! Im only in my 20s and should be enjoying sex but thats not going to happen. We all got to be strong and hang in there
Maeve says
I took SEROXAT for 15 years. Stopped experiencing human emotions, sexual pleasure and REM sleep while on it in 2009. Came off it in 2009. Nothing has changed – haven’t had a night’s sleep, orgasm or felt love for anything or anyone since before 2009. Living like a plant now and no-one believes a word I say.
jim says
Maeve, i have a very similar timeline and course of events. i was on the medication for roughly 12 years. i stopped experiencing any emotions or feelings at all really. Didn’t care about sex or have pleasureful orgasms anymore, which were very difficult to achieve in the first place. It progressed to erectile issues and just an apathy about everything in life. No motivation or drive to do anything. I went off of the medication a year ago thinking things would imrpove, and nothing has changed. It’s very disturbing and scary wondering if things will ever improve since I am only 31. I can’t give up on sex and life in general already becaus of this posion. I’m at my wits when i really start thinking about this stuff and what it’s done I find it very hard to want to go on. I feel like it was a failed attempt at life, and i need a reset because of choosing to go on these things. Trying to explain this to anybody is futile. We are In our own heads and hell dealing with this all alone daily. Doctors don’t take you serious and think you are making it up, and friends and family have no idea how bad and crippling it can really be, especially as a man. Obviously if i knew what i know now about the sexual issues, I never would have ever got on these. I was put on them by a parent as a teen so it wasn’t even my choice. When i first got on them they were still spitting the low percent chance of even having sexual dysfunction. Like 5 percent and come to find out it is closer to 60. I’m sure my future sexual health wasnt a concern of my mother at the time she wanted me on them. I am scared of even having a relationship now cause of the stress this all causes and burden it puts on the relationship sexually. What a joke. I’m a vegetable at 31 and all alone.
opusensemble says
I took Zoloft for 11 years for my severe MDD without side-effects and with great results.
One day, without any warning signs I woke up feeling I had a frontal lobotomy on the left side of my brain.
This was 2 years ago and nothing changed since then, as I am tormented daily with constant feelings of acid burning in my brain. I have been bed ridden since then. Lost my job and career. Lost my soul and my hope is shredded.
Attempted suicide already and I know it’s my fateful destiny. Nothing can touch the harm that was done (in the last 2 years tried everything under the sun, label and off-label, conventional or not)
I barely look at the walls of my room everyday now, whereas before this I had a promising engineering career. Now I can’t even take a shower or walk more than 20-30 steps without feeling a urge to vanish from this planet.
My body attracts physical illnesses due to my 2-year lethargy in bed but nothing is able to return a brief life ray at me.
After not being understood by psychiatrists and people in my village I know I am totally doomed. There is simply no way that this lobotomy will ever be reversed even slightly. I can feel it’s permanent and devastating. Tried everything, supplements, lots of them, exercise (even making an effort nobody has ever madr before), connect with others, etc etc. Nothing, absolutely nothing even scratches the surface of the damage I have sustained with Zoloft.
It’s simply too tragic to be true. I cannot put it in words properly as the extent of the damages limit my efforts in every single way.
When confronted with my sad reality, the proeminent psychiatrist I have seen last time I went outside, told me
“There’s no way the SSRI could have damaged you. SSRIs are neuroprotective”
Maybe they are neuroprotective when they still rely on a physically working brain. Once the base system is wrecked by the overclocking, severe and unpredictable and undiagnosable/unverifiable (with current arcaic methods) damage can occur.
I wanted to leave here my testimony as I feel it’s the last thing I can do in life.
Johanna says
Dear Opus – I found your story very moving – haunting almost, couldn’t stop thinking about it all afternoon. I have no idea what a soul is; I’m an atheist actually. But whatever it may be, you’ve still got a soul in there. And a good one too.
So PLEASE DON’T go and end it all, OK? You are worth too much. There is work for you to do – maybe as an engineer, maybe in helping us solve the mystery at issue here, maybe lots of other things. Right now you feel too wiped out and demoralized to do much, and that’s OK. You may yet do some good stuff later on down the line.
Your doctors may not ever understand. The folks in your village may not ever understand. That still leaves about seven billion people in the wide world. Some of them here, some in other nooks & crannies of the system. You might find companions even if love seems beyond your grasp for good.
David, Jim, others: Are there any public websites or message-boards where people can go to discuss this stuff – for moral support etc., as well as searching for solutions? If so, let’s post them.
In the meantime, suicide is an idea that’s hard to banish from your thoughts when things are this bad. But you can put it off, a day or a week at a time. You can say NO today, and the “option” will still be there – but if you say yes you cannot change your mind and say NO next week or next year.
So hang in there, and keep in touch. It may sound dumb, but we’re with you.
maeve says
opusensemble says “Attempted suicide already and I know it’s my fateful destiny”.
I’ve been suffering from PSSD for the last five years. Along with it came chronic insomnia and chronic anhedonia. I’m at the point where I’m considering downing 2 bottles of vodka in the space of an hour to ensure death, but I kind of don’t want to die alone.
kelis says
I am so glad other people know what i am talking about. I am only 21 but since taking ssris from age 17 for 3 years and stopped i have had complete genital anesthesia. Its so depressing and the doctors keep telling me it doesnt exist. It destroys my relationships and mental health. It would feel soo good to talk tp someone with a similar experience. Focus groups would be such a good idea just so people know they are not alone with this problem because i feel i am
Dr. David Healy says
Could everyone who has commented and anyone who is reading who also has PSSD, file a RxISK report. We try to contact most of you but some of the emails linked to the comments don’t work.
David
Eben says
Hi Dr. Healy,
There are significant problems with filing a RxISK report for PSSD.
1) There is no entry yet for Post-Treatment Sexual Dysfunction under at least one prime suspect (Lexapro), likely others.
2) There are individual reports spread across multiple categories that are likely overlapping, e.g. “numbness”, “sexual dysfunction”, “Penis disorder”, “Genital disorder male,” etc. While the individual numbers for each category appear insignificant, the total incidence of PSSD among site users is likely much higher
3) There are pages and pages of prior reports, and many users are likely to miss that, concluding that the end of the first page represents the entirety of previously reported symptoms.
I suspect placing a button for reporting PSSD, or even something more pedestrian, e.g. “lingering sexual dysfunction” would bring this syndrome to the top of the list of reported side effects very quickly.
Eben says
Howdy again,
I have a comment for Dr. Healy ‘under moderation,’ and realize the wording may been a touch confusing towards the end. the bits in parenthesis below may clarify…
3) There are pages and pages of prior reports (of side effects for SSRIs, e.g. Lexapro, on the Rxist site), and many users are likely to miss that (there are more than one pages of previously reported effects they can examine to match with their own condition, instead) concluding that the end of the first page represents the entirety of previously reported symptoms.
I suspect placing a button for reporting PSSD, or even something more pedestrian, e.g. “lingering sexual dysfunction” (front and center on the pages of drugs for which this symptom has been proposed/reported) would bring the syndrome to the top of the list of reported side effects very quickly.
thanks for an extensive reading. really appreciate the aims of the site and value of the content. -e
Maeve says
There are currently 3655 members in this group:
https://groups.yahoo.com/neo/groups/SSRIsex/info
But there are only 120 cases of Post SSRI Sexual Dysfunction reported in a write-up by Dr David Healy.
Is it that people don’t know RxISK exists, or is it a case of people not being bothered enough to report the condition due to shame?
I think the problem lies in the shame of it all. I had dinner with my family on Sunday. My brother asked me how I was. I couldn’t bring myself to say yet again that I’m suffering from PSSD and insomnia for the sake of peace and so as not to have him think “here we go again” or similar. I’ve told them already about these conditions, but I’m not being believed. I can’t do much about that. I just know that over at the Yahoo site, there are another 3655 people affected but not saying a word on here. That doesn’t help any of us when it comes to getting family members or doctors to believe the condition exists.
Eben says
Hi Maeve,
I think users are probably under-reporting for the reasons you mention. But also that reports are being scattered among other categories such as “numbness”, “penis disorder”, “genital disorder male”, “genital disorder female.” Many people are likely unaware of PSSD, and therefor cannot identify it as the best descriptor of their condition.
Maeve says
If you want to be angry with anyone, be angry with GlaxoSmithKline. I was just a guinea pig.
Michael says
The Forum “PSSD collaborative Research” has been shut down it seems…i wonder if it got hacked by this psychoctic User “area 1255”. He hast created several nicks there before…wtf? Anyone is in contact with the Admin “sonny”?
B says
I was wondering the same thing. I was very disheartened to see that the forum was shut down. I don’t have any contact info for Sonny, but if anyone knows anything about what’s going on please let us know!
Maeve says
When you have to drink caustic soda, it’s because things are that bad. Who cares!
Maeve says
Let’s put it this way: If they sliced off your clitoris / penis and tortured you with sleep deprivation for five years, what would you do?
Vera says
What we must all realise is that ALL drugs have side effects. They are chemical compounds put together with little understanding of how the body, or the mind works.
Another thing that doctors seem to forget when they prescribe these poisons is that we are all DIFFERENT and what may be tolerated by one individual is poison to another.
The medical arrogance accompanied by quite a bit of ignorance and a disinclination to really listen to the patient dismissing the patience’s observations is another worrying aspect of the medical profession. I have encountered this attitude quite frequently. They feel themselves challenged and go on the defensive, instead of LISTENING.
I can only suggest that we should take much more responsibility for our own health, do a lot more homework researching on the Internet, and always read the small print of all the possible side effects of ALL drugs. Never forget the CUMULATIVE effect over a long period of time.
I wonder whether manufacturers have included that detail into the equasion???
Believe it or not, I have come across some doctors who have actually told me that diet has nothing to do with health!
We must also remember that due to a whole suing tradition the doctor is in a very difficult position. He practically has to poison or kill the patient “by the book”. What I mean is that if the patience presents certain symptoms, (which the doctor may or may not diagnose correctly) he is then compelled to prescribe the given drugs suggested by the pharmaceutical “experts”. whether they are good for the patient or not. He has to legally cover his back otherwise he could be sued for not following the “appropriate” steps. Catch 22!
I have lost a daughter 5 years ago. She was put on Cytalopram and passed around several doctors who hardly read her notes. She reacted badly to the drug, had adverse reactions, so they
incresed the dose. No more needs to be said!!
Moloch says
For anyone interested, the forum “PSSD collaborative research” has been recreated at http://www.pssdforum.com Many of the original members are back, and Sonny has been reinstated as the admin for this site. Thanks
Fred says
One post SSRI side effect is that it may cause religion. I have seen no mention of this in the literature, in empirical anecdotal evidence, or in the patient information leaflet. It occurs as a final stage of the withdrawal process, when the patient realises they have been permanently damaged by the drug, that there is no reversal cure for this and that all there is left to do is pray to God that one day, by some miracle, they may wake up with the damage undone and be themselves again.
God help me.