Posted this on r/POIS as well:
https://www.reddit.com/r/POIS/comments/gw5rxt/story_treatment_my_background_and_latest_finding/Hey everyone,
So just in the past week I've discovered something life-changing, something that I can undoubtedly say has eliminated the POIS symptoms to a point in which I forgot I had an orgasm on the previous day. I'm making this post in hopes that it can help others out there manage this truly awful illness.
First, a bit of background on myself -- I'm 35 years old, currently living in Texas. I've had POIS as long as I could remember, presumably since puberty. Whenever I orgasm'd, I'd get the classic symptoms POIS sufferers experience; Cognitive dysfunction, brain fog, fatigue, sensory and motor problems, intense discomfort and irritability, gastrointestinal issues, craving for relief etc. The symptoms would last 3-7 days.
This may sound bizarre but I thought what I was experiencing after orgasm was typical for most guys, just accepted it as part of life, something that just you just experience after orgasm... I was already apprehensive about talking about sexual function with other guy friends, and it kinda felt weird to bring something like this up to my doctor, and I hadn't for the longest time... I had so many distractions in life, focused on school and my career in my 20s, just kinda accepted it and was somehow able to manage it at the time by abstaining as much as I could.
This all changed when I had my first sexual partner at 26 years old, finally someone I could comfortably talk to about my experiences. When I explained to her what happens after orgasm, she assured me that what I'm experiencing is not normal. Upon an easy search, I found the Wikipedia page for Postorgasmic Illness Syndrome, and it described it perfectly. I realized then I had a rare illness that most people hadn't even heard of, but there are others that suffer in a similar fashion in their own unique ways. At this point whenever I'd suffer from this I'd go on the POIS forums, looking for answers, figure out what helps provide relief from the pain when the symptoms are at their worst. I'm 9 years in and still figuring it out.
I did finally see my primary care physician about this. He recommended seeing an allergy specialist, urologist, neurologist, and psychiatrist. The allergy specialist suggested Ibuprofen. The urologist and neurologist both gave me the same answer: "We have no idea." I've seen a few psychiatrists since then, they would prescribe me SSRIs and stimulant medications which have been helpful to be sure, but not enough to truly manage this and their primary purposes were to address other matters that I have.
- There were things I've tried and didn't really help me: Niacin, L-Tyrosine, Zinc, Acupuncture
- There were things I've tried and thought they helped a little but wasn't really sure: Vitamin B & D supplements, Turmeric Curcumin, OTC antihistamines Fexofenadine, Diphenhydramine,
Loratadine - Then there were things that helped to some degree: NSAIDs (Ibuprofen), Ginger supplements, Kombucha and foods heavy in pre/probiotics, Breathing Exercises, Full-Body Massages, Cold Showers, Cranial Electrotherapy Stimulation devices, Cardiovascular Exercise
- Then there were things that helped to a substantial degree: CBD/CBG tinctures and vapor, SSRI and stimulant medications (these were used to address anxiety and ADHD-related issues I also have but I have noticed they help manage POIS as well)
The only thing that was truly effective at improving the symptoms was sleeping it off, if I was able to... lots of tossing and turning in bed while I was in agony, suffering...
I lost my job in January due to performance related matters that I realize in retrospect were from supplements I was trying to help manage POIS, as well as transitioning to new medications and trying new dosages. At this point I took it upon myself to take a brief break from my career and try to address this problem head-on and accelerate my findings. On the POIS forums I found a list of doctors that were at least aware of this condition, the closest one to me being Dr. Hellstrom at Tulane University Medical School Dept of Urology. He suggested I try Fexofenadine and Adderall, to see which of these medications was at least providing some relief. The Adderall I'm still taking today since I find the stimulant medications help with the brain fog, among other issues I've had. The Fexofenadine was maybe mildly helpful at best, no real noticeable improvement.
Fast forward to the past month. I got frustrated with the psychiatrist I was seeing at the time, wasn't making much headway in figuring this out with them, so I decided to see a new psychatrist. I'm so glad I made this change. This new psychiatrist was sincerely fascinated and curious about this condition. Of course like most others he wasn't sure what was going on but he prescribed me two medications; First was Bupropion, something that he thought would possibly help if it was indeed a brain chemistry issue. The second medication is what has helped manage the symptoms completely at this point, to that I thank him so much for. He prescribed me the antihistamine Hydroxyzine Pamoate. Even he was skeptical that this would work, but just threw it out there for me to try.
So I took the hydroxyzine, had an orgasm, went to sleep. The following day would normally be filled with irritability and agony under typical circumstances but instead I got a pretty feel-normal kind of day, to a point in which I had to double check my log to see if I did in fact have an orgasm the day before. Turns out I did. Absolutely incredible. Wow. I realized then, after 20+ years, I found something that finally truly helped provide relief from this suffering and have a better quality of life all around. Super thankful to have made this discovery, just wish I could've discovered this sooner. Better late than never, I suppose...
I'm not sure if hydroxyzine will help you but it certainly has helped me even when other antihistamines haven't really helped. Hoping this story helps someone out there who's in a similar experience w/ POIS as I am. I was on the verge of unironically entertaining the idea of castrating myself until I made this discovery. Stay strong, brothers! Keep searching until you find something that truly helps you. I'm hoping you find it soon.
I'm going to visit an allergy clinic next week to get their take on it as well. For now I'm taking it as needed, within 1 hour before having an orgasm ideally.
TL;DR Had POIS since puberty, tried many things, Hydroxyzine and Loratadine by far has helped eliminate POIS for me.