Some weeks ago, a number of people linked to Paxil Progress got in touch. They were concerned that RxISK was putting out a message that there was no recovery from Post-SSRI Sexual Dysfunction (PSSD) and that if people got this message they might go on to commit suicide. This post tackles the issue of recovery, first by offering an account of recovery, followed by a comment and then an account of some treatments that have been tried.
A story of recovery
In the spring of 2010, after 11 years of off and on SSRI use I decided to quit these drugs cold turkey. Lexapro was my particular drug at the time. In a short string of 2 weeks I dosed down and off the medicine going through an initially brutal period of buzzes and zaps that left me very fragile.
Within that 2 week period I noticed something zap off in the nether regions. I had about 35% reduced feeling in my genitals but function itself remained about the same. It was strange but not initially unpleasant. The following 8 months was a slow and steady process of losing function and feeling.
It got to the point where I had ZERO nocturnal erections, sexual feelings, or the presence of feeling at all in my genitals.
Needless to say this was a horrifying feeling which ultimately, ten months post cessation, caused me to check myself into a hospital so that I wouldn’t take my own life.
The only reason I didn’t do so was because I found paxil-progress. I found people going through the same thing, but SADLY, scarce stories of recoveries. I was all too convinced that nobody recovered and I was mutilated for life.
Upon leaving the hospital I noticed for the first time one evening with a young lady the small but noticed return of the fires of attraction. It wasn’t enough for sexual intercourse but it was a positive sign.
Then it disappeared. Then months later, something new. Then it disappeared. Then months later I had sex for the first time in a year. Then it got worse again. This process of windows and waves as we call it on the paxilprogress continued for 4 years. Even now it comes in windows and waves, the DIFFERENCE being is that the switch remains mostly on now. I have a well functioning sex life, sometimes even better than before the drugs.
Now finally let me separate some things.
Genital FEELING, and FUNCTIONING are different and mutually exclusive. I can have full function, but lessened feeling. And full feeling and lessened function, during the down times, as I call them. They more often than not now meet together and all is well.
I did NOT take any supplements for this to get better. I do NOT think any particular regimen of exercise or diet made much difference. I DO however feel that my pointed effort to connect my cerebral attraction (which never changed) with the physical world enacted a series of my brain getting re-used to sex and romance.
Tardive DysErotica: Is recovery possible?
When first approached by people with PSSD over fifteen years ago, I assumed that this was going to be the reverse of the soldiers whose lives were saved when religious medals deflected a bullet that would have killed them – we don’t get to hear from the soldiers who die when the bullet that wouldn’t have killed them does because its deflected by the medal. In the same way we hear from the PSSD cases that don’t recover and not from the ones who do.
Over the years however as none of those I’ve had contact with have recovered, I have personally changed my mind and come to the view that PSSD is more like tardive dyskinesia – a Tardive DysErotica – does anyone have a better word? Just as with TD, the norm is that people do not shake off the problem. But as with TD in a number of cases there can be improvement. In some cases when I ask those with PSSD who say they’ve improved where they would score themselves on a scale from 0 being as bad as it gets to 10 being normal, they have offered figures like 2 or 3.
This points to something else. Some people do recover in the sense of being able to rise above the problem and not be defined by it. In the sense of being able to get on with their lives – in this sense some people recover from cancer or tardive dyskinesia.
There can also be some physical improvements as our Recovery Story above shows. These improvements, it has seemed to me, have been more likely to happen in people who are physically and mentally active – as the individual above is and one or two others have been.
If people with problems that have endured for months or years, problems that include genital anesthesia, make a full or substantial recovery please let us know – there is a lot of people out there would love to hear from you.
But aside from spontaneous recoveries like this, there are possible improvements on treatment. As mentioned in earlier posts, Drugs and Sex Don’t Go, Treating PSSD, the PSSD community, following the lead of pioneers like Antonei Csoka, have been impressively systematic and rational in their efforts to track down treatments. They have primarily focused on drugs to manipulate the serotonin and dopamine system, along with medications like Viagra or Cialis. In the sense just outlined above, even if the message is bleak, having communities like the PSSD communities that have already been in existence for some years is one step on the road to recovery.
At RxISK, we have offered input as people have tried some other options and we have kept track of some other things tried. A small number have combined steroids like Dianabol and exercise and this can help some people with SSRI related problems quite aside from PSSD.
A number have had at least a short term benefit from MSM. This is an FDA approved treatment for interstitial cystitis, which may also be triggered by SSRIs. Some have tried low dose naltrexone (12.5 mg) and had some benefit. The important thing behind these responses is that they show it is possible to make a difference – that the damage may not be permanent.
We have traced people who have taken ketamine, donepezil and metformin without any benefit. We are tracking other options. In a post next week we will outline our hopes that research might lead to more ideas on how to put things right.
Out there, there are probably some people on some treatment for another condition who never get PSSD. This is the hardest kind of discovery to make but if anyone has any hints that they may be on something that could make a difference like this, there are lots of ways we could test this one out if you can get in touch.