My name is Nicholas Alves, and I am a 26-year-old male from Massachusetts. I have a completely life destroying condition called PSSD, or post SSRI sexual dysfunction. PSSD can arise following the use of certain antidepressants, particularly SSRIs/SNRIs. The name’s a little bit of a misnomer though, because this condition is so much more than just a complete sexual dysfunction, which is still dehumanizing in its own right. It’s a complete inability to experience feelings. It’s a lack of emotions. Sufferers very often can no longer feel love, joy, happiness, sadness, excitement, anger, anything. It’s brain fog, sometimes so bad that many people have had to drop out of school or quit their job due to the cognitive impairment induced by the medication. It’s even complete genital numbness, and a total shutdown of libido. All of this may not return to normal for months, years, and sometimes even indefinitely after stopping the medication.
I began taking an antidepressant, I can’t remember which one at first, but I was soon after switched to Trintellix during the age of 19 because of an anxiety disorder. I’ve currently been off for 10 months now since October of 2022, however my PSSD symptoms began after first getting off the medication for the first time back in October of 2020. This was when I learned about PSSD, I was trying to figure out why, for the first time ever in my life, my libido had very noticeably dropped. The symptoms never went away and instead got much worse upon reinstatement of my medication 6 months later in April of 2021. Since getting off again last year in October of 2022, my symptoms have worsened again very considerably more.
While it is common to develop side effects while taking antidepressants, most patients are not currently aware that these side effects can persist long after or indefinitely after stopping the medication. It is not currently known what proportion of patients recover fully after stopping these medications.
I have my wonderful girlfriend, Miranda, and I tragically can no longer feel anything towards her. Even still, she’s extremely supportive of me during this extraordinary time. I’ve heard plenty of anecdotes from other PSSD sufferers saying that their partner left them because they couldn’t deal with the lack of emotion and affection. After all, I’m no longer able to make love, give love, or feel love. It’s a hard pill to swallow, and I don’t exactly blame some partners for not being able to take it. But my girlfriend is extraordinary. She cares very little and wants to stick with me until the very end.
I don’t have passion anymore. I don’t feel interested in any hobbies anymore. Talking to friends and family has become a chore. Music no longer means anything. Driving home on a Friday after a long week at work gives me no more pleasure than staring at a wall. I could be in a room full of nude supermodels and it would evoke no response from me. As a result of all of this, I’ve devoted much of my free time to volunteering with the PSSD Network instead.
The PSSD Network is one of a handful of PSSD related groups around the world [1]. Although they are the newest group to come about, they are also the most active and have so far gotten the most done in a short time frame. It has been somewhat of a lifeline for me. They’ve given me hope that there is light at the end of this very dark tunnel, because they are absolutely moving mountains to clear the way to a cure for all of us. They’ve done a phenomenal job with setting up the website which contains useful information about PSSD itself including a comprehensive list of all relevant medical literature on the subject, of which I was surprised to find out dates back many years [2]. They’ve set up ways for sufferers to join a support group, volunteer their own experiences for the world to see via the picture, paper video, and patient spotlight campaigns. They’ve also set up a charity, where the funds go directly to research and outreach. The research is currently being carried out by Roberto Melcangi and Luisa Guerrini at University of Milan, Italy. The research has been very slow due to a lack of funding, but dedicated members of the community, along with other random small dollar donations continue to keep it alive. The mother of a sufferer named Stephan, who tragically took his own life because of this illness, recently donated over $5,000 USD to the research fund.
The persistence of sexual dysfunction after the use of SSRI and SNRI medication was acknowledged in 2019 by the European Medicines Agency (EMA) [3] ; however, the FDA has yet to reply to the citizen petition “Sexual side effects of SSRIs and SNRIs,” which was submitted in 2018. [4] European national medicine regulators won’t go further and require pharmaceutical companies to conduct prevalence studies that determine how common PSSD is, nor will they require any organizations to send ‘dear doctor’ letters to physicians who prescribe medications which can cause PSSD. Therefore, many psychiatrists are still unaware of the possibility of PSSD, which makes it virtually impossible for their patients to be warned so that they can give proper informed consent.
Today, I’m just doing what I can with other patients to get the ball rolling and get us further into the spotlight in the hopes that we can eventually get a grant for more research. At the moment I mostly do patient outreach for online content, awareness spreading, and community donation record keeping. Some of the accomplishments made by other sufferers are getting us onto various news sites such as the The Telegraph [5], Mad In The UK [6], The Independent (Irish newspaper) [7], Psychology Today [8], and Mashable [9]. We also had screen time in A French documentary [10] and 2 BBC documentaries [11-12]. All we want is awareness, informed consent, and most importantly of all, treatment. We need to prevent this from happening to anybody else. We want to go back to our lives as they once were.
Footnotes
2 http://www.PSSDNetwork.org/literature
3 https://rxisk.org/ema-acknowledges-persistent-sexual-dysfunction-after-ssris-snris/
4 https://rxisk.org/wp-content/uploads/2018/06/JRS745-1.pdf
6 https://www.madintheuk.com/2023/05/antidepressant-sexual-dysfunction/
9 https://mashable.com/article/post-ssri-sexual-dysfunction-pssd-explained
10 https://www.pssdnetwork.org/media/allo-docteurs-antidepressants-useful-or-dangerous
11 https://www.pssdnetwork.org/media/bbc-panorama-the-antidepressant-story
12 https://www.pssdnetwork.org/media/bbc-disclosure-are-my-antidepressants-worth-it
