Life-threatning disability from antipyschotics

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
-Denmark.

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
-While searching for a PFS / PSSD forum.

What is your current age, height, weight?
-185cm, 60kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
-Risperidone. It’s a neuroleptic medication that works as a D2 dopamine antagonist also with serotonergic 5HT2A antagonism.

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
-0.5mg/every day

What condition was being treated with the drug?
-Generalized anxiety disorder, depression, insomnia

For how long did you take the drug (weeks/months/years)?
-1 Month
Date when you started the drug?
-Beginning of March 2022

Date when you quit the drug?
-April 2022

Age when you quit?
-18

How did you quit (cold turkey or taper off)?
-Cold Turkey

How long into your usage did you notice the onset of side effects?
-Immidiately, the same evening and they continued to progress.

What side effects did you experience that have yet to resolve since discontinuation?

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[X ] Loss of Libido / Sex Drive
[X ] Erectile Dysfunction
[X ] Complete Impotence
[X ] Loss of Morning Erections
[X ] Loss of Spontaneous Erections
[ X] Loss of Nocturnal Erections
[ X] Watery Ejaculate
[X ] Reduced Ejaculate
[X ] Inability or Difficulty to Ejaculate / Orgasm
[ X] Reduced Sperm Count / Motility

Mental
[X ] Emotional Blunting / Emotionally Flat
[ X] Difficulty Focusing / Concentrating
[ X] Confusion
[ X] Memory Loss / Forgetfulness
[ X] Stumbling over Words / Losing Train of Thought
[ X] Slurring of Speech
[ X] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[X ] Severe Depression / Melancholy
[ X] Suicidal Thoughts

All of the ones listed below as well as severe derealization, poor blood circulation i can’t sense my blood flow anywhere anymore, arrythmias/heart palpatations, nerve pains all over my body burning, pins & needles

Physical
[ X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[X ] Testicular Pain
[ X] Testicular Shrinkage / Loss of Fullness
[X ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ X] Muscle Wastage
[X ] Muscle Weakness
[X ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ X] Persistent Fatigue / Exhaustion
[ X] Stomach Pains / Digestion Problems
[X ] Constipation / “Poo Pellets”
[ X] Vision - Acuity Decrease / Blurriness
[ X] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[X ] Lowered body temperature

[X ] Other (please explain)

-All of the ones ticked above as well as severe derealization, cognitive impairment, i’m not able to comprehend anything that’s happening around me anymore i’m bedbound and taken care of by my mother. Poor blood circulation i can’t sense my blood flow anywhere anymore, i wake up with cold and numb limbs regularily, when i breath in i can’t feel tissue fill up with air anymore but my entire body is numb of sensation and the tissue feels dead, my skin is dry with pallor, i also have cardiac issues with arrythmias/heart palpatations. Also bowel obstruction, constipation is so severe i’m not able to have a natural bowel movement anymore.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
-Countless dietary supplements with little relief. I take electrolytes throughout the day and i’m tube fed with dietary powder just to stay stable.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
-ALT & ALP liver enzymes previously normal, now regularily elevated 4-5x the reference range with no explanation despite extensive workup.
-Skin biopsy detected Peripheral Neuropathy and small fiber nerve degeneration.
-Cardiac Stress Test detected arrythmias that was a while ago though.

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

-Well i started Risperidone about 2 years ago and within a week of starting i felt a shift in my entire biological being. I started feeling like someone had put a screwdriver through my brain, it was like the entire cognitive experience of being a human was switched off from my brain and i became something entirely different. My blood flow felt paralyzed, i got cold everywhere in my body and started having arrythmias. I couldn’t sense my body or surroundings anymore and my sexuality became entirely erased in the process. Every biological function would continue to become impaired during the use of the drug and eventually i cold turkeyed a month in. By the time i had become so disabled i wasn’t conscious of myself or my symptoms anymore, the sensory part of my brain was completely switched off, it was my mother’s initiative to stop the drugs because my body was deteriorating. The past 2 years have been an insanely difficult ride of visits to different doctors with little to no answers. Currently i feel like i’m at the end of my lifespan, i’ve regained cognitive ability to the extent of being conscious again but my disability has essentially continued to progress and i have accepted my faith. I don’t believe there’s any way to rescue my situation anymore and i would greatly appreciate any ideas regarding etiology & what on earth could be happening with my body. I have yet to encounter a case this severe let alone somebody else that even used the same drug, because there’s gotta be some type of unique etiology here. Currently i am bedbound and tubefed because i’m not able to have bowel movements anymore. A good day for me at age 21 is a day when i’m able to stand up and take a little walk without having a dysautonomia attack with arrythmias and chest pain. I’m desperately looking for some ideas from any of you, thank you.

2 Likes

Hi GuyWithPSSD,

I am deeply sorry that you are in such a bad state. While your case is certainly among the most severe cases, unfortunately, we aware of others who have similar severe cases. This is the reality of this syndrome at its worst.

While this forum and the research efforts supported by the staff of this forum are focused on persistent side effects after treatment with Finasteride, we have long suspected and intend to demonstrate that there is a common etiology behind rare but persistent symptoms from Finsteride, Isotretinoin, SSRIs and other substances with anti-androgenic and endocrine disrupting properties. I have only checked quickly, but I have found indications that Risperidone is anti-androgenic, for example.

You likely have the same condition that we have, and to a very severe degree. And while I cannot give you any hope regarding a cure at this moment, I can only emphasize that the ongoing research into what is for now called “Post-Finasteride-Syndrome” will likely elucidate why someone like you at such a young age can end up in a state like this from a drug like Risperidone.

All the best
N.

2 Likes

Took me long until i even discovered PSSD/PFS in the first place. But it just feels unbelieveable that something this rare has happened to me and i’m barely able to find a matching story documented on all of the vast internet. Ofc i would hope no one else is this severe but in case you know somebody let me know about them so i can read their story.

Something this vast gets me thinking about a mitochondrial dysfunction.

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