Editorial Note: This post from James Bennett of RxISK’s team explores the increasingly problematic area of sexual functioning on antidepressants and other drugs.
The efforts to take down the Wikipedia page on Post-SSRI Sexual Dysfunction (PSSD) suggest that the sexual side effects of antidepressants worry industry more than anything else. Why this should be is something that will be tackled here soon.
Rethink Mental Illness is one of the UK’s leading mental health charities, originally founded over 40 years ago, as the National Schizophrenia Fellowship. Today, they reportedly have over 200 mental health services and 150 support groups across England, and directly support almost 60,000 people every year.
In February 2014, RxISK sent out an e-mail to hundreds of recipients including Rethink Mental Illness, to raise awareness of Post-SSRI Sexual Dysfunction (PSSD). The condition can arise from just a few days exposure to an SSRI antidepressant and can last for years or indefinitely for some people.
Rethink Mental Illness responded to our e-mail, and the following conversation took place:
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From: Campaigns@rethink.org
Date: 21 February 2014
To: James Bennett
Dear David (and James),
Thank you for your email and I am sorry for the delay in our response. Sexual dysfunction due to medication is something that we were already aware of due to our work on physical health, you can find out more about this at www.rethink.org/phc. Our Good Health Guide which you can view online has details on what to do if you experience any type of sexual dysfunction due to medication.
We also try to highlight to mental health professionals and other medical professionals how this can highly impact on people taking medications. I am glad to see that you are actively highlighting this issue as it something that is not often mentioned.
I wish you all the best with raising awareness to this issue. If you have anything else you would like to share with us at any time please do get in touch.
All the best
Amy Batchelor
Team Administrator
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From: James Bennett
Date 22 February 2014
To: Campaigns@rethink.org
Amy,
Thanks for your reply.
I have clicked on the link to your website that you provided, and have done a search for sexual side-effects.
However, I could only find information relating to side-effects while taking the medication. I was unable to find anything about the risk of persisting sexual side-effects after the medication had been stopped (PSSD). Could you perhaps provide me with a direct link?
Thanks,
James
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From: Campaigns@rethink.org
Date: 24 February 2014
To: James Bennett
Hi James,
I have just looked back through our advice line’s information and also the information in our own work and realise now that it is not as clear as we would like to express how sexual dysfunction can be enduring.
I will flag this with my own team and the advice team so it can be made more clear in the literature. I thought this would have been the case as we have talked about it a lot before, so thank you for flagging that it is not as clear as it should be.
All the best
Amy Batchelor
Team Administrator
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The story now moves to July 2014.
From: James Bennett
Date: 12 July 2014
To: Campaigns@rethink.org
Hi,
In February, I sent an e-mail to your organisation on behalf of RxISK.org, to help raise awareness of Post SSRI Sexual Dysfunction (PSSD).
As you can see from previous correspondence with Amy, she confirmed that your organisation was aware of the condition, and said that she would raise the issue with the appropriate teams to make it clearer on your website.
I am once again involved in promoting information about PSSD, following the publication of RxISK’s new paper in the International Journal of Risk and Safety in Medicine. The paper adds to the existing medical literature on the condition, and can be downloaded here:
http://davidhealy.org/wp-content/uploads/2014/07/2014-Hogan-SSRIs-and-PSSD.pdf
[Ed: The paper is now available here]
However, I notice that your website currently says in bold text – “All effects on sexual function are reversible.”
http://www.rethink.org/diagnosis-treatment/medications/antidepressants/life-and-love
This would appear to contradict the previous message. Are you able to clarify?
Many thanks,
James
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From: Campaigns@rethink.org
Date: 14 July 2014
To: James Bennett
Hi James,
Thank you for getting in touch again. This material you have linked to is something our advice team have created so I will pass your message on to them. I am sorry that this did not get through to them last time but looking back through my emails I cannot see that I chased them up about it. I will ask them to liaise with you directly but cannot guarantee that they will be able to change the information on the website.
If you do not hear back from them within the next 5 working days please feel free to get back in touch with myself.
All the best
Amy Batchelor
Campaigns Administrator
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From: feedback@rethink.org
Date 14 July 2014
To: James Bennett
Cc: Amy Batchelor
Hi James,
Thanks for getting in touch. Your email has been passed onto us at the advice service by Amy, who I’m also copying into this email.
Our health and social care information is reviewed every two years in line with the Information Standard, which our service has accreditation for. I can see that our antidepressants information (which includes both our factsheet and information online), will next be reviewed in November of this year.
We will make a note of your feedback and consider it for our next review.
I hope this is helpful.
Kind regards,
Sion
Sion Jones
Advice and Information Officer
Rethink Mental Illness Advice Service
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The fact that a major provider of mental health advice and support was knowingly giving out incorrect medical information, yet seemed unmotivated to change it, was very concerning. This information was not only misleading and potentially harmful, but might also be considered insulting to those people suffering from, what is for many, an extremely distressing and life-changing condition.
The good news is that as of the middle of November 2014, Rethink Mental Illness have updated their website to remove the comment that sexual side-effects are always reversible, though they still make no mention that these side-effects can continue after stopping the drugs.
You can click to view the old and new pages.
In comparison, another leading UK charity, Mind, already covers the issue of persisting sexual side-effects from SSRIs on their website, though there is still much about the symptoms and the development of the condition that could be added. At the time of writing, it can be found here under the heading Sexual Problems.
It is interesting that one of these organisations warns of the problem, while the other seems unwilling to do so. It is worth noting that one of them receives funding from pharmaceutical companies, while the other does not.
From their websites:
“Mind will not accept money from or hold shares in companies manufacturing pharmaceuticals, lest this should compromise our position on the uses of medication.”
“Rethink Mental Illness values the support we receive from pharmaceutical companies as part of a diverse fundraising strategy…”
There is perhaps an opportunity here, if Rethink Mental Illness wish to take it. Rather than leaving their side-effect information as it is, they could actually lead the way on this issue. RxISK would be happy to engage with them (or indeed any organisation) to ensure that they have the most comprehensive and up to date information about PSSD on their website and in their literature.
We await their response.
Johanna says
In the U.S. at least, mental-health charities played a central role in selling the public and policymakers on the virtues of the second-generation antipsychotics. Without their help, these drugs might never have made it. No group played a greater role than NAMI, the National Alliance for the Mentally Ill.
Drugs like Zyprexa, Risperdal and Seroquel offered “the promise of unparalleled recovery” to formerly hopeless patients, they insisted. They could even combat “negative symptoms” of schizophrenia, like apathy and difficulty concentrating. At the same time NAMI was helping spread the story that people with schizophrenia had always been prone to diabetes, helping obscure the hazards of the new drugs.
I was amazed to find that this 2003 love song to the Brave New Drugs remains on NAMI’s website. Can you still feel the magic?
http://www.nami.org/Content/ContentGroups/E-News/20003/July_20002/Access_to_Effective_Medications__A_Critical_Link_to_Mental_Illness_Recovery1.htm
A lot has gone down since then, and not even NAMI can ignore the side effects of atypical antipsychotics. They now concentrate on convincing us that these effects can be “managed” if only we eat very wisely and exercise enough–and hyping the advantages of the latest on-patent drugs over “old drugs” like … Zyprexa and Seroquel.
Dr. David Healy says
This NAMI link is a must read – especially for Thanksgiving
DH
Johanna says
To give thanks that nobody believes THIS particular nonsense anymore? Or to remind us of the power of a few real turkeys, when they’re dressed up as a feast?
For me it was sweetly nostalgic to read of a time (only a decade ago) when “schizophrenia, bipolar disorder, major depression and other serious mental illnesses” were said to affect only FIVE million Americans. Just think — barely two percent! Now, of course, we must all give to NAMI and heed their wise counsel, because ONE IN FOUR of us are “living with a Mental Illness.” Well … Happy Thanksgiving to all my brothers and sisters in the 23%. Eat your turkey, it’s full of tryptophan.
Brian Damage says
The link shows well, how blatant the drug business is. Same as any other business. And a charity is just another form of business structure.
To turn Krishnamurti’s quote, “It is no measure of health to be well adjusted to a profoundly sick society”, on its head, “It is not an illness to be maladjusted to a profoundly sick society”.
If you trawl the internet you will find countless thousands of first hand anecdotal reports of the damage that SSRIs do. In particular, sexual dysfunction and apathy. Are we supposed to believe that all these independent reports are fabricated or imagined? The medical profession needs to remove its head from its backside and open its eyes.
L says
thanks that you are there to worry about pssd. i await news.
Maeve says
I remember going to the doctor way back in 1995. He told my mother I was depressed so he put me on Prozac. I remember taking the first pill and later that night having a severe case of akathisia. My mind was racing and I couldn’t sit still or stop moving. I remember literally saying these exact words to my mother “I want to kill myself”. She took me to the doctor the next day and he stopped the Prozac and put me on Seroxat. The first thing I noticed about being on Seroxat was the numbing of emotions and a deep sense of hostility. I withdrew into myself. The inlay information leaflet said it would take Seroxat 3-4 weeks to work, so I thought these feelings would pass, but they didn’t. However, five weeks into “treatment” and I remember suddenly feeling high as a kite.
To cut a long story short, I ended up meeting a Spaniard and moved to Spain. The feelings of being high never left me for years. Seroxat made me behave in ways I had never done prior to taking Seroxat. I was moody, erratic, compulsive and extremely hostile. Hostility was a major problem. Seroxat made me feel UNCONCERN for anything. I lost all inhibitions. I remember getting a phone call from my eldest sister while in Spain. I hadn’t heard from her in so long that when I heard her voice, I totally overreacted, so much so that she had to ask me if I had been drinking. (mania) I knew what she meant. I realized my behaviour was too abnormal and as at times I was also having feelings of depersonalisation (mentioned above). These were very worrying. I knew I had to get off the “medication”, so we went to a psychiatrist in Madrid. I started coming off it and experienced every single withdrawal symptom listed. The electric zap-like sensations were the worst. When you moved your eyes in any direction, you would feel dizzy as if you were on a boat, but not only that, your heard would jump to the same rhythm as the eye movement. In other words, every time I’d look around a room, my heart would skip a beat and I’d feel off-balance. It’s the only way I can describe it, but it was hell. The other worst withdrawal symptoms were the crying spells for no apparent reason, the increased sensations of depersonalisation, the vomiting and the diarrhea every morning. I remember having nightmares while on and coming off Seroxat. I remember having dreams in which I could see family members being murdered and injured. I woke from one screaming once.
So, I tried getting off Seroxat and had the horrendous withdrawal effects mentioned above. I told the doctor what was happening and I asked him if going back on it would stop all the horrible sensations. I basically couldn’t handle withdrawal. I was an emotional mess and extremely violent. I didn’t realize that what I was experiencing was addiction. SSRI’s are as addicting as cocaine. I never took cocaine but the behaviour seen in withdrawal is similar to that of what people withdrawing from cocaine go through.
I ended up back on it knowing I still had to come off it. I’d come off it again and have the brain zaps all over again. The emotional instability that came along with it made a doctor wrongly diagnose me as having a personality disorder. That was hard to take as I knew full well the emotional instability and crying spells and bouts of uncontrollable rage were all down to withdrawal. They caused friction with family and at one point a hands-on physical fight. I WAS NEVER AN AGGRESSIVE PERSON, EVER.
Going back on the “medication” and coming of it went on for years. The emotional numbness and sexual numbing were constant and very concerning and worrying.
In 2007, the Spaniard – who is now my ex – and I decided we would get married. I had read though that Seroxat would harm an unborn child and I didn’t want to do that to a child, so I had to come off the “medication” again. And so the horrors started all over. I knew I was in no condition to be getting married. At one point, I had to hear the harsh words of my own mother which were “I won’t be going to your wedding”.
On the night of the 19th of December 2007, I was at the height of withdrawal. My body was riddled with abnormal high levels of anxiety and depersonalisation. I WASN’T MYSELF. I swallowed down 200 pills I found lying around the house. I COULDN’T TAKE IT ANYMORE. My brother’s attitude was “You did it on your sister’s birthday and right near Christmas to cause MAXIMUM EFFECT”. They were on the other side of the water and couldn’t see what I was going through. But a lot of people have a nasty attitude to people when it comes to trying to commit suicide. They only see it from their side.
From 2007 to 2009, I remember telling my now ex every few days “I can’t feel anything”. I meant emotionally. I was having sever problems experiencing human emotions. I was basically emotionally numb, flat. In 2009, we went to his village up north and I was having severe problems sleeping and could still feel nothing, but it had gotton worse since 2007. I WAS STILL ON SEROXAT AT THIS POINT. I remember waking one morning and he wanted us to go outside. I couldn’t appreciate the beauty of the countryside. I couldn’t feel love for my then boyfriend and sex had been of the cards for a long time. I was at this point emotionally dead. I knew I couldn’t go on like this. I rang my father and told him what was happening. I told him I was going home to get off that shit for once and for all. I thought I would go back to normal.
My sexual functioning to this day has not returned. I am incapable of feeling love for anything or anyone and suffering from chronic insomnia. It’s not even a case of not being believed anymore by anyone that is so “distressing”, but the fact that I come here every day hoping to see that Dr Healy has come up with a solution, only to be met with more write-ups about the condition confirming the condition and its prevalence.
I’ve gone the road of trying sleeping tablets. Nothing works. I haven’t had an orgasm or a night’s sleep since before the summer of 2009. I can’t take it much more. I am living like a house plant.
This is NOT A RETURNED DEPRESSION, AND THIS IS NOT A CASE OF A PERSONALTY DISORDER. IT IS NOT NORMAL TO NOT SLEEP IN FIVE YEARS AND NOT FEEL SEXUAL PLEASURE. A person knows full well when they haven’t slept or felt an orgasm.
There are over 3, 500 people in the SSRI Yahoo Sex group and 120 cases of PSSD already recorded.
Are we all making it up?
Pseudo says
Sure seems like it. People have a tendency to judge other people’s condition/behavior without considering external influences. This is an exaggerated example, but if you see someone going around killing people, especially if they murdered someone close to you, you wouldn’t think twice about letting them get away with the crime “just” because they were on a prescription drug. Only the people on these drugs who’ve experienced the side-effects really know what it’s like and what it can do.
angela eisenhauer says
true
angela eisenhauer says
My father suicided (in 1966…. and as I have found that valium sends me crazy, and valium came to Australia in 1963, I damn wonder)… anyway, my sister took it all to heart….. and started taking pills, and seeing finally a psychiatrist WHY? Because she couldnt have an orgasm…… the psych told her all sorts of garbage, which she believed….. the reality? THE DRUGS CAUSED IT. But as you say, so well, in your article, it is just TOO HARD, for her to accept her irrational behaviour for the last 30 years, has been caused by these drugs, her numerous suicide attempts WERE CAUSED by the drugs, and of course her lack of sexuality, yes the drugs. So she has gone from my most wonderful support, on the drugs, to a nasty, nasty person, because I am getting off them. I now realise she just needed someone else to follow her lead, in some sort of weird way to justify that what she was doing was right. Validation, I suppose, and I became another victim.
I regard psychiatry/psychiatric drugs as a cult…… tis all. The cult members go out and recruit others, while on the initial “high”… I know I did it too.
She convinced me to go on them at age 45…….. 10 years later, I am a WD wreck, lost my marriage, and finances, and yes, was just as erratic as she has been for all her life on these poisons. Worse than that? I fight off suicidal thoughts, am housebound, and all because I am trying to get off these poisons, and regain my brain, and my life. But damn, I got a label now…..AND I NEVER BEEN SUICIDAL IN MY DAMN LIFE.
Maeve says
I was kept in hospital for a whole year. I repeated several times to my father about the sexual dysfunction, the anhedonia and the inability to sleep. I told him I was to some extent brain damaged. He’s say “Show me the proof, show me a doctor who will confirm it”. And go on to say “What you’re doing is trying to fight the system”. I could understand his sense of frustration, but “fighting the system”?