James’s Story
James
Ontario, Canada
PSSD for 4 years
Autumn 2014: I was 22 year old engineering student an Ontario University. I had been with my fiancee that I was very much in love with for 6 incredible years. I loved my life. Every day was a joy to me. I was a passionate mathematician, an ambitious engineer, a professional level musician that played in many groups around Toronto, a strong and loving brother to my siblings, and a happy and devoted partner to my fiance.
I was having trouble sleeping under the extreme stress of 4th year. I needed my grades to be up to par and my undergraduate thesis to be a slam dunk with my supervisor to get into the laboratory I wanted for graduate school. I had a bad roommate on top of all of this that had health problems that made his sleep schedule highly erratic and we shared a paper thin wall in a small apartment in Toronto. With my last exam of 4th year 5 days out I couldn’t sleep anymore... between the stress and the noise my roommate would make into the the night. I wrote the exam on 4 days of no sleep, and immediately phoned my parents to ask for advice. My mom directed me to a psychiatrist over the Christmas break, and to his credit, I was referred to a psychologist.
Over the final semester of my undergrad in winter/spring 2015 I saw psychologist 5 times to do “cognitive behavioral therapy” to learn to de-stress from my 14 hour days of school work. These helped me (largely due to the placebo effect of doing something at all I believe), but my roommate continued to be a sleep disturbance for me. After getting into the lab of my choice for grad school and still having sleep difficulties, my therapist told me that he highly recommended me taking “medication” that he himself could not legally prescribe as a psychologist. He referred me to my family doctor. I was VERY hesitant to try drugs, but my family insisted I should listen to the therapist who “knows better” so I finally caved by late March of 2015. My family doctor instantly prescribed the prozac at a dose of 20mg without asking me any questions beyond the brief summary I told him about sleeping difficulties and my psychologists forceful recommendation. No side effects at all were communicated to me in that visit.
I took prozac for 6 weeks. For most of that time I noticed very little difference in any aspect of my life. By the end of week 6 I noticed I could not ejaculate while having sex with my fiance following my last exam of my undergrad. With my undergrad and living situation with my roommate over, and with the surprise of this first sexual side effect, I without telling my doctor tapered off the drug over a period of 2 weeks.
The passionate scientist that I was, I started my masters degree at the University of Toronto in June (2015). For that summer I may have noticed that my sexuality was somewhat dampened compared to the overwhelming sexuality I had been accustomed to in my very healthy relationship with my fiance... but I assumed at the time the delayed ejaculation in May due to the drugs had impacted my sexual psychology... and the psychological damage was staying with me.
Romantic feelings, attraction to my fiance, sex, and passion in my life were still relatively strong that summer. By the end of August I had been making such good progress in my research that I was so excited I once again started having sleep difficulties. My mom insisted that I never should have gone off the drugs that the doctor told me I needed, and not thinking there could be any lasting harm of trying it again, I decided to give it a try and see if it would help me sleep better at night. I had a great fall semester of killing it in the lab, being very much in love and sexually active with my fiance, and sleeping well at night. I was very physically active at this time as well, running 5km per day and spending hours walking while thinking about my research and solving technical problems in my head.
November 30 2015: The day I knew something was wrong. I did push ups at home to get some exercise. Afterward, I noticed my left hand felt very weak and I had a tremor in my thumb and index finger for the first time in my life. I went to a psychiatrist that was a friend of my moms and he told me it was very likely due to the Prozac and to discontinue the 20 mg instantly with no tapering off. I took his advice.
December 20-22 2015: This would be the last time I would make love to my fiance. We had a short winter vacation to a hotel the days leading up to Christmas, and made love many times over those days. It was very intimate. It was extremely pleasureful... though not as much as pre-Prozac only 9 months earlier... I was full of desire for her... and it all felt so natural and automatic.
January 04 2016: I returned home from the lab late one night and noticed for the first time how completely absent my sexuality was. My penis felt lifeless and void of sensitivity all of a sudden as if something in my body had changed since the previous day. Until this moment getting aroused and getting erections had been the most automatic reflex to me... little different from breathing or wanting to eat when hungry. I knew immediately something was very wrong. No amount of mental, visual, or tactile stimulation could give me even slightest erection. The tremor in my left hand was still prevalent, and had not resolved even partially since my last dosage of Prozac in November. There was little doubt in my mind that withdrawal from Fluoxetine, a drug noted for it’s characteristic long biochemical half-life, was the only rational cause for such a sudden and dramatic change in my sexual physiology. At this time I assumed that my body just needed more time to normalize back to a drug free state, and so I suppressed my impulse to panic.
January-Mid February 2016: I noticed no improvement whatsoever in sexual physiology in spite of remaining positive and optimistic about my body being in a state of healing. I was sleeping well at this time, did not feel stressed out in my life as a successful high performing graduate student, and was not distressed or depressed in any way, aside from being increasingly concerned about my sexual health not returning. To my relief, my girlfriend and I who both lived with our parents at this time, did not find any time for intimacy over this period. Most distressingly, I did notice however that the great attraction I had felt for her for the 12 years I had known her previously was just as absent as the rest of my sexual physiology.
February 14 (Valentines day) 2016: After a romantic dinner in downtown Toronto, we returned to her empty parents house and she enthusiastically brought me to the bedroom. To my horror, my worst fears were confirmed when I was completely unable to get even slightly aroused or have any erection at all from her that night. I explained to her what I had been going through since early January but the tone of her voice revealed she felt hurt and embarrassed as if it was somehow her fault. Until this moment, sexual intimacy in our relationship had been extremely strong and healthy and I had never had a single incidence of erectile dysfunction of any kind in the bedroom with her. This evening was and still remains the most humiliating and hurtful night of my life. It also marked the start of a gaping space that would grow between us over the moths that followed. I could no longer ignore the distress I was in and the concerning picture that was becoming clearer.
I went to my psychiatrist shortly after and told them my what happened. They were exceptionally dismissive of my claims, and fervently denied that I could even possibly be still experiencing sexual side effects that long after discontinuing fluoxetine. They insisted my mood was to blame. They proceeded to be dismissive of the significance of the tremor I continued to suffer from in my left had as well, but at least agreed to refer me to a neurologist to assess it further.
April 2016: I continued to experience no remission of my absent sexual physiology or my tremor and one night cracked under the weight of what this implied... that I may be faced with a lifetime of being unable to experience sexual intimacy... that my guitar playing would be impaired for life due to the tremor... that the people I trusted with my health had not informed me of the incredible risks of taking Fluoxetine on even a short term basis and appeared to be both unwilling and completely impotent to resolve these emergent horrific consequences to my health. I called my girlfriend in tears that night to express my thoughts. By unfortunate coincidence, her GP had prescribed her fluoxetine only months earlier to deal with work related stress in her professional life as an engineer herself! While I wept and told her what was going on with me, she got extremely defensive and told me that she couldn’t handle the things I was saying, and that it must all be in my head. She made it clear that I had to keep my thoughts on the matter to myself, to not make her feel insecure while she was taking fluoxetine. I pleaded with her to reconsider being on the drugs but she refused to listen. I knew after this conversation, that my credibility with her was badly damaged. I then called my brother, at the time a PhD candidate in neuroscience. I again described to him in detail what I was experiencing, and like my psychiatrist and my girlfriend, he was dismissive and asserted that permanent effects from fluoxetine would be impossible. This was the first moment in my entire life I felt truly and utterly alone. My reality was seemingly in direct opposition to the narrative of institutional medicine. There was no doubt in my mind whatsoever as both a published scientist and the person experiencing these effects, that fluoxetine exposure was the only probable cause. I would spend the next two months working hard in the lab, avoiding sexual intimacy with my girlfriend, and suffering in silence.
June 2016: Nothing had changed with my sexual health or tremor. As we had planned for some time, my girlfriend and I moved into an apartment together this month. In this situation there was no place to hide from the truth. I continued to feel little to no sexual attraction toward my girlfriend, in spite of being very much in love with her on a level that vastly transcended sexuality (and after 7 years of having an extremely healthy sexual relationship, ending in January 2016). Our very deep relationship we had built over many years rapidly began to deteriorate and decay, as she perceived my lack of sexual attraction for her and as I felt unable to communicate with her due to her own continued use of fluoxetine. By mid June, I saw the neurologist to have my tremor examined. The appointment was extremely off-putting and dismissive as the rest of my interactions with both loved ones and healthcare professionals over the prior 6 months. He quickly looked at my tremor, told me it was not indicative of Parkinson’s disease, and told me emphatically that it was “not that bad”, normal, and not a result of fluoxetine exposure (even when I brought a peer reviewed publication to his attention that documented unresolved tremors in studied patients following fluoxetine treatment). My appointment lasted under 10 minutes, and the doctor was completely unwilling to proceed with any diagnostic testing whatsoever.
I followed up with my family doctor afterward, and she was just as dismissive and insisted it was an “essential tremor” that was genetic in nature, and that fluoxetine had “unmasked it” rather than causing any of the brain or nerve damage associated with motor disorders in young people. In response to my sexual complaints, my family doctor prescribed me with Viagra, and again insisted that my complete sexual dysfunction was not related to fluoxetine exposure in any way. Unsatisfied with this emergent narrative and systemic dismissal of symptoms from healthcare professionals, I returned to the psychiatrist my mom had first referred me to when I had sleep problems (a family friend). To my surprise, he was just as dismissive as everyone else, in spite of having knowledge of my perfect sexual health prior to my first use of fluoxetine. He authoritatively asserted what I was experiencing was scientifically impossible, and I was shown the door.
June-October 2016: From June to October 2016, my relationship with my girlfriend completely deteriorated. Intimacy between us on many levels was fractured. I could not hide my lack of sexual attraction and desire for her, and it made her feel insecure, and ultimately that I didn’t love her the way I had for so many years. I myself, started to question my own reality in this time. The entire momentum of psychiatric medicine and even a neurologist had told me my poor sexual health was either due to some strange unknown cause or a fault of my own thoughts about the situation. At a certain point, it was hard to tell what was real and what was obviously irrational. I withdrew from my girlfriend. I began working more and more on my PhD research, spending late nights in the lab, and confusing my fear and insecurity for heightened enthusiasm in my work. For the first time in nearly 8 years of our relationship together, I was making no attempt to balance my work life and career ambitions with spending time with her.
October 15 2016: Breakup
March 2017-Mach 2019: Had 3 different relationships. No improvement in sexual physiology or tremor in left hand. Felt detached and unable to experience intimacy on any level despite wanting to.
March 2019: Diagnosed with PSSD by urologist at Mount Sinai hospital in Toronto.
November 19, 2019: What would have been the 11 year anniversary with my girlfriend... I walked to her house by the cliffs over Lake Ontario and stood on the edge of the cliff all night long on the verge of suicide... feeling devastated by PSSD and missing the incredible life I had before ever taking fluoxetine. I was just one step away from taking my own life. I phoned my brother to say goodbye, and the phone call and him finally taking my experience seriously saved my life that night.
February 2020: I begin to experience great pain in my left wrist when playing my guitar. The tremor in the left hand, remains unresolved.
July 2020: The pain in my left wrist becomes bad enough that I cannot play guitar until further notice. I see the doctor in response, and it is noticed that I have significant muscle atrophy throughout my left hand. An ultrasounds is done, and my family doctor refers me to see another neurologist to do diagnostic testing to determine the neurological cause of the muscle atrophy. Appointment date set for August 2020.