New here but figured I would share my very unique experience regarding PSSD and FND symptoms from ceasing a new type of anti-psychotic.
It's a long story staring about 2014 when I suddenly became very weak, fatigued and shortly after developed severe sexual dysfunction out of the blue. I was not taking anything at the time but though it was a relapse of my original Hypopituitarism where I was not making any testosterone from about 6 years prior to that.
I was unable to ejaculate (no volume) and had no sex drive and nearly impossible to get erections.
I saw my endocrinologist from years back again and had a full screening and everything was normal. I was very distressed and fatigued all the time and was eventually diagnosed with depression and chronic fatigue (not the classical CFS though, more 2ndary to the depression). I was unable to get out of bed for days at a time and slept 13+ hours without being able to wake up in the morning.
I was given some type of SSRI that I can't recall and it made me sick as a dog, euphoric, weird memory loss (lost all my card pins and passwords permanently) but had normal working and long term memory. Visual trails. Didn't help me sexually or feel better, just severe side effects.
This sort of thing went on for about 2 years of trialing 20 different types of SSRIs and SNRIs but all made me very unwell and nothing helped me sexually. Fed up at this point and my doctors agreed I was intolerant of SSRIs and SNRIs and anything that targeted serotonin selectively.
At this point I did my own research and found an MAOI called moclobimide. This worked pretty well about 60% and no side effects that I really noticed. I struggled for a few years not quite getting over the fatigue but my mood was better, not awesome though and my sexual function slowly started to come back. No where near pre depression/fatigue days.
in 2018 I lost my job due to my health not improving enough to function (mainly the fatigue) and I was already seeing a psychiatrist at that point. Had already tried lithium, sodium valporate, one other drug I can't recall. So when she heard I wasn't doing well enough and lost my job she said lets try Rexulti, a new 3rd gen antipsychotic. I said I don't want anything that will make my sexual dysfunction go backwards like the SSRIs did and she insisted there was no sexual side effects. So I agreed. This was December 2018.
I started on 1mg for a few weeks and then went to 2mg. I felt no side effects and within 6 weeks I felt much better. I felt improvements over the next 12 months and my sex drive improved a lot and sexual function was almost normal and I was happy.
So this is where things stated to turn. She just did 15 min check ups over the phone every few months but never considered taking me off the Rexulti. Mid 2020 so about 18 months in I had a sudden lost of sex drive and dysfunction. Again I got screened for hormonal problems, in fact my testosterone was the highest since I was in my mid 20s, now in my mid 30s. So a year of investigation and after seeing a sex therapist it was stating to point to the Rexulti as I never had an issue with the moclobimide. My doctor agreed to let me reduce the dose.
In August 2021 I started tapering down to 1mg. I felt like death, severe bouts of spontaneous anxiety, fear and irritability. There was severe restless legs and dizzy spells that came and went all the time. I felt agitated and withdrawn. But slowly it got better and my sex drive stated to improve in a windowed fashion. It had been about 5 or 6 weeks of the lower dose. So thinking 1mg was already pretty low I stopped toward the end of September 2021 completely, same round of withdrawal symptoms but within 3 days of stopping I got an uncomfortable warm/burning feeling in my perineal area (between anus and scrotum), but it felt like it was deep inside me in that area.
Over the new 4-6 weeks most of the worse withdrawals faded away but the weird feeling in my bits persisted until the 6 week mark where it went away finally. my sex drive after stopping the Rexulti improved a lot and it was proof that was the casue of the issue. I felt great finally and was finally able to translate desire to arousal again since 2017-2018.
At the 8 week mark, so mid November 2021 that burning feeling in my bits came back. I finally saw my doc about it. Was ordered a urine test to check for STIs. But then the follwing week. 21st of November my right foot went hot and numb and I just thought it was a pinched nerve in my ankle as it felt familiar like carpel tunnel I had 15 years before. The next day this moved up to my right knee to include my whole lower leg and it was painful too. I went home and while sitting at my desk I felt the feeling move up my entire right leg, then down my left and then I felt both legs numb and also my forward saddle area and penis and scrotum right up to my belly button go numb. I was scared and thought what on earth was going on!
My doc sent me straight to the hospital the next day as he thought I had some spinal injury.
So the hospital checked all my reflexes but couldn't see the casue. I was sent home.
The next few weeks it got much worse, burning pain like you wouldn't belive down my legs.
I was starting to have issues going to the toilet. Every time I crouched down my groin and penis and under the belly button went even more numb and I had urine retention for about an hour every time I crouched. Again to the hospital. Relflex fine. Conclusion, bulged disk pressing my my spine but was told in a few weeks it will get better.
My doc orders MRIs from head to pelvis as he wanted to rule out MS and things like that. MRIs showed nothing out of the ordinary but mentioned a bulged disk. I couldn't even get a private neurologist appointment until this month (30th of March 2022). So I saw Melbourne's one of top neurosurgeons to interpret the images for me.
The images were fine, the bulge was tiny and nothing at all was pressing my nerves or spinal cord.
3 weeks after the onset of lower body numbness my hands and face started to feel funny. Then a day later my hands and face went numb and started to burn. Another few days I started to get faint and shallow breathing on the way to the hospital again. I got a full blow panic atack but with an absolutely excruciating electric buzzing/shocking sensation in my face, hands and forearms and sternum. My partner was taking me and stopped and called the ambulance. I was in such pain that I would describe it like having 415V 3 phase electricity wired to my face and hands. This lasted for about 15 min and the ambos arrived and took me to the hospital.
Every single touch to my upper body was like electricity. I went to a different hospital this time as the main one wasn't that helpful. But this other hospital was just as useless and had no ideal. There was all kinds of ideals like GBS, CIDP maybe triggered by the covid vaccine as I also took that in late September. Again. nothing normal and the doctors said my symptoms were too all over the place to be any one thing.
But about early Jan this year it was so bad, I couldn't walk or hold things with my hands, bad tremors, difficultly swallowing and breathing, numbness and funny plastic like sensations to 70% of my body. Narcolepsy like partial fainting episodes when driving or being driven, crying, super anxious, unable to sweat in the hands since December, pain,, weird erectile dysfunction (excellent shaft erection but flaccid head), weird bowl movements and feelings, weird paranoid feelings about my own thoughts, unable to interpret sounds correctly, visual hallucinations when waking up. I kid you not, this is only a handful of the weird and severe symptoms I experienced in the last few months.
The last and final vistit to the main hospital I finally saw an neurologist and he was 95% certain I had functional neurological disorder (FND) which was probably caused by the withdrawal of the Rexulti.
The odd thing about my sexual dysfunction is mainly physical, numbness of the head of the penis and flaccid head. All other aspects mainly have improved dramatically. Sex drive is very good 90% of the time and ejaculation volume is the highest it's ever been in my life, exceeds pre depression days and even my teens.
My doc agreed with the diagnosis and got me to restart the Rexulti on a very low dose to break the downward spiral that is FND and it has a psychosomatic component. This worked pretty well. I am on 0.25mg from the 2mg I was on and within days my anxiety went down and I could start to sleep again.
That was 11th of Jan this year. Since then improvement has been windowed from minute to hours to sometimes a week at a time. It's been up and down a lot. Some new symptoms came out since like hissing/ringing in my ears from about mid Feb and have persisted since but slowly improved with some days no ringing/hissing at all.
Since about mid feb I got a sudden improvement in numbness in my saddle and penis, went from totally numb head to a max of 10% feeling to about 50% on average with some days being 40-70%. My head is stating to erect again but is windowed from minutes to days at most. My sex drive is great most days. I have sex daily, some days up to 3 times a day.
I have regained most days 100% feeling in most of my body.
The problems I still have is obviously some numbness in my penis head, windowed flaccid head but had massively improved. New symptoms of my lower legs don't sweat and dry out but is windowed usually on min-hour basis. Still got some ringing that comes and goes. Bad sleep. Sleep paralysis, jumpy sleep wake transition. Plasticy weird sort of numbness like feeling in face/hands and sometimes feet. The dizzy spells and the narcolepsy like faint feeling episodes when driving or being driven.
Slowly slowly there has been great improvement, physically, mentally and sexually but I feel like it will take quite a while. Months at least, probably longer.
Mid year my doc plans to have me drop my dose to 0.125mg and keep halving every 4-6 months thereafter. The reintroduction of the med was to break the downward spiral of mental health but allow a low enough dose that the rest of the unoccupied receptors in the brain to rest and return back to baseline. Kind of like starting the taper process again but at a much lower level so it's not just square one again.
When I learned that the Rexulti was likely what causes all these issues, I researched it a lot and found that unlike a traditional anti-psychotic it's pharmacology primarily works on serotonin. No wonder I became so unwell on it and withdrawing from it.
I hope that gives people some insight into wider issues that are not just PSSD specific and other classes of drugs that can do the same or similar things as PSSD
Any questions please feel free to ask.
