Seeking help again after years

Yes the endless circle brings us down.

Can you point me in the direction of this information on the research? I find this site harder to navigate than the old “crappier” one.

BTW I did donate a lot to the foundation already, which was presumably “put to use” at Baylor, so forgive my sceptism. Is there another part of that mostly useless thing still to come out?

1 Like

please sign up to the PFS Network mailing list at the bottom of this page. https://www.pfsnetwork.org/

I will PM you the quarterly update that was sent yesterday.

1 Like

Things have changed, we have a new foundation who is fully commited to solve this.
We have a Youtube Channel which is now at top 2 of searchings
and we have already raised 130k in 6 months.
Please join us, we need you! Is really important.

Also, try to fill a pharmacovigilance report in your country. Crucial step.

3 Likes

Have faith my friend. As a community we can get through this. Besides, the Foundation is really not at all of the same caliber as the PFS Network which is run by actual patients who are committed to solving this. Let’s stick together and all support each other to get out of this.

1 Like

Thanks guys.

Looking back on my second massive crash, I think it may have been triggered by taking quetiapine to get sleep, on top of everything else.

How long did you take it for and what dose?

Looking at the pharmacology of the drug, I don’t think anyone should use it tbh. Not even people without PFS.

From it’s Wikipedia page:

Despite being widely used as a sleep aid due to its sedating effect, the benefits of such use do not appear to generally outweigh the side effects.

Low dose for sleep.

I took it years ago and it helped sleep but gave awful sides, but when I came off my sleep normalised.

But when I took it on one off occassions in recent years for sleep, my eyes were ablaze.

I probably shouldn’t touch it again and it has probably fucked me up this time. I was in trouble anyway but I think when I added it for sleep I started losing facial collagen, which stopped then reappeared post crash.

Low dosages are supposed to act like anti histamines rather than anti-psychotic, but it probably still interferes with 3-ahsd or whetver the androgen process is downstream.

Fuck me what a mess. What can I use for sleep now?

Yeah don’t touch it again. I know not being able to sleep is fucking awful and after some time it gets unbearable. I didn’t sleep for more than a couple of hours for months, but now I sleep well again. I’m sure you can improve as well!

But one should be really careful with sleep meds in general. Better to try proper sleep hygiene and some physical exercise, but be careful because doing to much to fast will make it harder to sleep.

Antihistamines that work in the CNS shouldn’t be taken either, they will lead to dementia if used to often etc. All sleep meds are nothing but band-aids. Just like finasteride is a band-aid for hair loss.

One can try some magnesium and/or taurine BUT some people have crashed on it so BE CAREFUL if you decide to try it.

Didn’t realise how much better I was until all this. Probably 75%. Recovered sleep, brain fog, fatigue, severe depression, genitals were fine and could get horny at times. Got back some lost muscle which is obviously gone again. Look worse than before.

There are men who recover and a lot of it is belief and time, I kind of got lucky because maybe life was less stressful for me for a while. Once stress appeared everything fell apart.

Just wishing that last year I had come on here for advice when I crashed on ZMA. Dick went darker for the first time in a decade, still had libido following months though but insomnia, which I stupidly used low dose seroquel for, which might have compunded the problem.

Someone might have told me that zinc/zma was a 5ari then and I might have escaped, or at least the worst of it. Now I am back to ground zero. If I even just had sexual sides I could go on with life, the muscle mass loss and cognitive stuff is awful.

I’m really sorry to hear that man :frowning: Try to hold on and it can get better

I used to post under another name. I stopped posting in the middle of the decade as sides had improved quite a lot, nowhere near normal but enough to live a decent life. Travel, socialising, just sleeping eight hours regualrly and no fatigue. Dick and balls were back to normal just no scrotal hair, could get random erections, frequent full nocturnals. I didn’t realise this was well above normal, especially as I had originally had a very bad crash.

2018/19 start gettin stress and sleeping less, first time sleep went since 2011 or so. Took ZMA as it had magnesium glycinate, felt great first few months (like some using propecia do), noticed loss of energy then one day dick skin was darker again. Still had libido but had shrunk a bit. I was taking ZMA and zinc probably daily, and the zinc the chemist sold now was not a timed release one which probably made things worse. In addition I took seroquel for the insomnia which was really stupid.

ED keeps getting worse and I think it’s an adrenal stress issue (cortisol was no doubt higher with the excessive 5ari) and this year crash into insomnia and sexual dysfunction. Drink too much, take on more ZMA and crash early June.

I can’t believe this shit has happened again. I also can’t beleive I threw away a decent recovery, which I am shcoked to see seems on the rare side here. Most guys seem to stay fighting multiple symptoms for years, many of mine resolved enough after two years of hell. And still I sat on my ass doing nothing. What a waste, feel suicidal now.

Yes, it’s a pity and you can beat yourself up that it could have been avoided, like we all do. But it doesn’t matter, humans are going to make mistakes, the question is: what’s the best way forward?

My take on this is: if your body was able to recover fairly well from freakin’ finasteride, wouldn’t you expect an even quicker recovery from something more innocent like ZMA? I know, nothing is guaranteed, but give your body a chance to do what it’s done before. And help it by trying to live a healthy, stress-free lifestyle, starting with distracting yourself from this mental agony which in my case was making my symptoms worse in a potentially irreversible way, and was completely unnecessary.

I think I was a lot more recovered than I thought.
Sleep and fatigue hadn’t been an issue for years. I could regularly masturbate and size and sensitivity returned. I just avoided sex but reading stories here I could easily have done it with or without pde5s. Bear in mind that my original pfs crash left me very impotent and no libido, extreme mental sides and insomnia, major muscle loss.
Then got stress trying to work with cunts and sleep started tapering. Eventually had adrenal burnout and insomnia, ZMA fixed the sleep and made me exercise a lot (I guess the increase in testosterone like soime get on propecia) then I noticed fat gain and had a mini crash last year causing discoloyring down below.
My situation is complicated by use of seroquel for sleep at times last year and this which probably made things worse.
I know it was “only” zma and zinc but perhaps the seroquel also sent me back to hell I don’t know.
I’m just worried I won’t get lucky again, and that took years.I just want a quality of life back don’t care about sex, though its the last nail in the coffin of becoming a parent I’d say.

Understandably. Look, I’m no expert on seroquel, but nothing gets close to finasteride in terms of collateral damage. So I can’t imagine that you won’t improve. Could it take a year? Is there a chance that you may not recover the full 100%? Yes, those are possibilities that you need to come to terms with. The anxiety/stress you talked about didn’t lead to good things, so annihilating that anxiety should be your first order of business. That alone improved my symptoms, and it would start the clock of your recovery.

Getting lucky twice seems a tall order.

I’ll eat my hat if you don’t recover. You were lucky to have a body that can recover from finasteride, I don’t think recovering from these minor things is a tall order. Just be careful with stress and new medications in the future, but I think you learned that lesson :wink:

An order yes, but not a tall one.
Of course, the uncertainty sucks. But you have no choice, you just have to kill these stressful feelings so that the recovery process can start.