Yeaah i am quite sceptical myself. I also tried niacin past two days. First day i could sleep, no idea if it was because of the noacin or just because of exhaustion. 2nd day it didnt matter and everything was the same, totally wired. Its good to hear u came out of it, and the other guy who just posted here also did. I will just sit it out i guess. Knowing something will eventually diminish makes it less hard.
You said betaine did this to you? There were others here saying that betaine+choline+ vitamin A gave them a huge return in genital sensitivity. Hard to know what to freakin trust on these forums anymore
That is what is so very perplexing about this condition. Almost across the board, everything that has been reported to modulate PFS/PAS/PSSD symptoms to an appreciable degree has produced contradictory results for different people.
And it can almost be stated as a law of nature: (okay, a little exaggeration) If it has the potential to modulate this condition, then it has some sort of anti-androgenic effect on some level. The SAMe and Me-B12 that worsened my symptoms severely for some time, are two of the few that don’t AFAIK.
Some examples of substances that have had both a very positive and very negative effect:
Cannabis (contains beta sitosterol, an active constituent of SP, and THC is an AA)
Finasteride (4-5 PAS patients claimed recovery from taking fin)
Saw Palmettto (couple PAS and PFS patients claimed improvements after taking SP)
Low-dose SSRI (Some PSSD patients noted long-term improvement from reinstatement of SSRI)
Soy products (phytoestrogens)
RU-486 (a progestin derivative with anti-androgenic effects, I believe a mild AR antagonist)
Progesterone and other Progestins (many progestin birth controls and progesterone, are 5-ar inhibitors)
I guess add betaine to the list with SAMe and Me-B12 of the few things that don’t appear to have an anti-androgenic effect. All 3 are methyl donors, which is interesting in itself.
Dude, i am convinced for some of us the problem is silenced genes. The methyl donors just strengthen this problem. This experience just showed me. I did Ibogaine for 2 months and that had zero negative effect on pssd while being quite potent. Now i take like 2 weeks of a harmless methyl donor, bam, full blown crash. Every symptom worse, dick feels like rubber, insomnia etc. My path is finding a way to demethylate, I am convinced it is the key to all this in my case and maybe even yours.
Hey man. Really dont want to bother you but i am really scared this shit is permanent. I had ok erections and penis health before this. Its now totally shrivelled rubbery and like an hourglass. Will this go back to normal? It just feels so unhealthy and numb. Does it really get better? Scared af, because i am used to things not getting better after the whole pssd experience. I am also speaking to another guy who had it after b12 and after 3 months is still fucked by it the same as in the beginning.
I’ve had these symptoms and they do fluctuate
What do u mean? U got the symptoms from a methyl donor? And do u mean by fluctuate they dont go away but as u said, fluctuate
Like I said, I can’t make any guarantees, but it took 4-6 months to return to something near-baseline and the first 4 months were sheer suffering, with very little improvement. I mean, I said to myself “I’ve known this day would come for many years now, but I’ve finally reached that point,” and I was going insane believing I gave myself (supposedly impossible) permanent side effects for the second time around…
I first noticed trouble in late-August and the severity of the SAMe+B12 side effects peaked in mid-October, so your acquaintance may still be in the midst of it.
Ten months later and I am back at baseline except for residual insomnia.
So, it may take a very long time.
Man… what is this condition even. Taking betaine for a week is going to knock me out for another 6 months? What’s next? Bananas? Sorry for ranting but this feels very unreal, how this is happening all over again man. I have this very extreme derealisation due to the betaine, and the insomnia makes the derealisation even worse. In a way it’s good that I am very numb, or else i would have definitly panicked due to the derealisation. Also i can’t comprehend anything i read anymore. I saw u made mistakes at work too in this period so u must have had something like that too. It’s now 11 in the morning and i still haven’t slept. 4/6 months is such an awfull long time. I notice i want to try extreme things just to get out of this situation, and I know I should not do that.
Believe me, I had those same exact thoughts going through my head. Just hold on tight and wait.
Just chiming in again, but it was only a couple of months for me. I even did it a couple of times before I fully realised. It might well not take all that long, but both Dubya and I eventually shook it off by the looks of it.
Allright guys really appreciate it! I also got the rumination dubya is talking about! My original problem was ocd which i took ssri for. After pssd i started keto and killed my ocd with that. Now after this failed betaine trial i notice myself having these thought loops again. I trust u guys and hope i will shake it off too.
I got out of it today for the first half of the day. Have been very suicidal the past month since this crash, including making plans etc. When I got out of it today, I thought shit, this is dangerous. When u feel so bad for a long time u forget that when u feel a bit better u would not consider suicide, and how stupid it would be to do it. Since this crash I am constantly thinking about it. I have noticed this past week there are some fluctuations happening. I sometimes feel a bit better again, but I often go back to the post betaine crash-state. The derealisation is so bad that I see everything blury, as if i am high/drunk. I also just feel overall way more depressed during this state. I really hope this will go away in a bit. @Dubya_B, did yours also fluctuate in the beginning? Thinking, ok i am getting better, to be put back again in the crash state the same day even?
Not really. It was relentless for the first few months for me. After 4 months, I began to have moments of feeilng okay and some night sof 6-7 hours sleep.
Great news that you did return to normalcy for a brief window!
4 months till u felt okay sometimes, wow. U must for sure have thought u were done goofed and fucked beyond measures. I would if I didn’t have u guys telling me with time it passes.
Yeah. I was afraid it was over. Actually a bit surprised there was an end to it and didn’t realize it was over until looking back on how bad it was 8-10 months ago compared to April/May this year.
That’s why I encourage anyone in the midst of a crash to hang on for better times, even if they might not expect to not be the same as before all hell broke loose.
Yes I think my first time (in the chaos of the early months, still dazed and stunned and new to the whole thing) I read methylation “helped” (or rather that’s what I took away from it) and bought some Jarrow super strength B12 and things got worse, but I only took a few half-pills. Then read the whole methylation thing again and thought to myself “no I just need to persist” and took some more, and got worse again (penis response and sensitivity) and then recovered again.
THIRD time (yes, three times) I took another half and nosedived again, that one took a MUCH longer time to bounce back from but I did.
Btw i checked my histamine levels because of all this. On a scale of 1 to 9 they were 1,5. So quite low, which would correlate with all this. I think I am kind of improving. I sleep better. All the other symptoms are still bad. Libido/penile shrinkage/ZERO libido/more anhedonia. Still hoping for the best.
Also, I found this very interesting case, a must read. This guy got PSSD 2 years AFTER taking 1 SSRI pill. He triggered it by taking SAM-E. On the PSSD forum there is another story like this, so two cases already: ''I’m a 23 yeard male and for the past year my entire pubic area, penis, and scrotum have been numb to pleasure. I can still feel pain from a pinch, just no pleasure down there. I can still get erections and orgasm, but it takes longer because of the numbness. The numbness has affected my libido as well.
I have tried ruling out hormonal problems like testosterone, estrogen, and prolactin. I had all these tested and the results all came back within range. I had my thyroid’s TSH level tested only and it was fine. I’m unsure if I should test all other thyroid levels like T3/T4 or not.
I would be so appreciative if anyone could help me. My doctor doesn’t seem to know what else to check.’’
''In Fall 2011, I took one 5mg pill of an SSRI called Lexapro (escitalopram). It was the first and only SSRI I have ever taken. I had a bad reaction to it and stopped after the first dose. Luckily I didn’t have any lingering symptoms after that one dose.
Two years later in Fall 2013, I tried a supplement called SAM-e (s-adenosylmenthionine). I heard it was a safe supplement for mood and joints health with no side effects. I took the SAM-e for about 5 days at 800mg (kind of a high dose). It made me feel a bit sick to my stomach so I stopped it after those 5 days. If I remember correctly I believe after I stopped the SAM-e I think my numbness started.
I’ve been super worried that I somehow got PSSD (post SSRI sexual dysfunction) from that one pill of Lexapro. Is it possible that the one Lexapro could have had something to do with this and caused it two whole years later when triggered by the SAM-e? Hopefully not.’’
I wonder if he got the PSSD symptoms from the SAM-e alone.