PFS recovery is “not impossible. “ In June 2017 I fully recovered (except sleep) - Anonymous1968's post-PFS journal

So it’s been a while since I updated but my situation is like this:

I regularly get 3-5 hours unconscious sleep every night. I take Belsomra and it apparently helps. Exercise positively helps. So that’s good.

But I have to take 2-4 1+ hour “rest naps” at random times every day. I feel profoundly exhausted and it slowly passes/subsides. Repeat endlessly.

Hmmmm…

In this case, I would check mitochondrial function and gluthatione levels.
For getting better MIT.function R alpha lipon acid and hydroperoxid.
Gluth.: supplementing reduced gluth.every day

I know you’re trying to be helpful, but your post is incomprehensible.

  • why would I get additional tests, after spending hundreds of thousands of dollars, including 6 MRIs
  • why these particular tests
  • what would these tests encourage me to purchase better than Balsomra, prescribed by a neurologist and supposedly the “cutting edge” of sleep pills

If you never regain sleep on your own, do you think you’ll be content using the drug and late night exercise method for the rest of your life?

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Are you talking to me? Talking to me? :slight_smile:

Hundreds of thousands of dollars?
Come on man, be realistic please.

You don’t need to do any tests. But don’t expect to get better just by doing nothing.
I am talking about being exhausted.
BTW those few tests don’t cost a thousand dollars. But could tell a lot.
MRI can show issues, but in most cases did not. But if so, nobody knows what to do.

And re sleep I was a similar case to yours. Couldn’t sleep the first 3 months.
Phosphatidylserin at 400mg and GABA. Walking in the morning! for 30 minutes.
Interm.fasting (irregular) helped better sleeping.
You can integrate those information or not - up to you.
When my gut issues were worst, so my sleep too. Just think about that. Gut - brain connection. Or research.

Good luck anyway.

This dude is rich lol, he was a lawyer for over 20 years. Not many people can just stop working due to insomnia like he has, while having your own place and a maid, plus being hospitalized for long periods of time. If you’ve read any of his posts you’d know it’s not outside the realm of possibility that’s he’s spent a lot of money trying to figure out what’s wrong.

He doesn’t know what’s wrong with him. Nobody can pinpoint his issue, sleep is not all that understood, just because yours got better doesn’t mean y’all have the same issue. Finasteride stops many mechanisms like PGD2 receptors that aren’t even well understood yet. So, there may be some piece of advice on this forum that could fix his problem as there are a lot of incompetent doctors out there, he shouldn’t be so quick to dismiss suggestions to him.

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I know his story quite well, but he could not spent hundreds of thousands of dollars just in tests.

That’s my point. If I had the money I knew what to test and there.

Well I don’t know what his insurance policy is but he’s paying $5k a year out of pocket for his sleeping pill.

And he’s the only person alive today that can’t actually sleep. There’s only been a few other individuals in history that have lost all ability to sleep. Most people with sleep issues cause by androgen inhibitors like finasteride and accutane can still manage 4 hours, but he’s a special case. The rest of the people who couldn’t sleep from finasteride didn’t live but he did and spent significant time in hospitals which charge insane fees to test over night so again it’s not unbelievable. Maybe he’ll confirm it though lol.

He is not the only one. I couldnt sleep for 3 months. It was just kinda relaxing, but no sleep.
I managed to get sleep somehow. Esp.by researching tons of posts.

I believe he has spent lots of money - but not that amount in tests only. Plz read carefully what I wrote.

7 weeks hospitalization + 6 MRIs + several visits to local neuros + 50 hours rehab specialists were paid by insurance. I’m sure that’s several hundred thousand dollars.

4 days at Mayo Clinic cost $48K, $22K paid directly by me. (ouch!)

I had 100+ vials of blood taken out of me for every diagnostic test under the sun!

I was a lawyer for exactly 20 years and could effortlessly prove all above info but does not matter.

I am extraordinarily fortunate because I had worst-case scenario PFS and I’m 90% cured of PFS-related maladies that plagued me since Dec 2014:

  • 100% loss of emotionality/compassion (100% resolved after 6 months)
  • 100% loss of libido (100% resolved after 2 years)
  • 100% physical impotence (100% resolved after 2.5 years, possibly due to intravenous methyl steroid treatment recommended by Mayo)
  • breast development, penis pain, etc. all resolved quickly

I still have horrific insomnia but it is 50% cured now with Balsomra/exercise. I’ve slept 3-5 hours per night for a while.

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It gives me hope to read that you’ve fully recovered in those areas you mentioned, especially the pain and physical impotence. Glad to hear all of that. With that said, could you expand on the methyl steroid treatment the Mayo Clinic gave you? Why did they recommend it, what did it do for you, and do you think all of us should be treated with it?

See this thread:

https://forum.propeciahelp.com/t/methyl-steroids-and-or-time-luck-100-cured-my-sexual-probs/9416

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“THIS CHICK IS TOAST!” :joy:

A ridiculous line from Ghostbusters.

“Lovely” shot of moi tonight watching:

Back in a month…

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What is the plan if you start to build a tolerance to Balsomra? I’m surprised that your exercising right before sleep. That seems counter intuitive… ie core body temp, etc…

I have “enjoyed fluctuating fortunes” vis-a-vis sleeping/Balsomra.

Last night I slept ZERO minutes despite exercising an hour at 7pm plus Balsomra.

But prior five nights I slept 4-6 hours each night under that regimine.

I only exercise every other day now, not always late at night.

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Good news, Aetna reapproved Balsomra for another year:

Your story is just incredible. How have you been doing lately?

Click his profile and you can see his recent posts.

So I’m a disability-retired 50yo lawyer residing in Charlotte NC USA. I’m intelligent/normal/rational, definitely not confused/deluded/mendacious etc.

See my earlier posts for my detailed history - these are highlights/tips.

I’m posting SOLELY to benefit/encourage you, not to brag etc. I’ve handled 20+ difficult non-jury trials and can easily prove my “PFS story” via 50+ “conventional” medical experts I’ve consulted since 2014, countless medical documents, my ex-GF, family/friends etc.

Yes, I truly have 100% recovered from ALL “POST” FS maladies as follows:

  • I took 1.25 mgs finasteride daily for 15 years. I discontinued it early Dec. 2014. The PFS “grenade” exploded in my brain in mid-Dec 2014, instantly transporting me to the PFS “Twilight Zone.”

  • I instantly transformed into an emotionless/sexless robot. Zero emotions, zero libido, sexual plumbing entirely ceased functioning. My very last erection felt awful, like a foreign object attached to my body.

  • All minor PFS maladies – body-feminization, breast development, black/green eye skin area, penis pain - 100% resolved in four months. I have no tips/explanation for this unfortunately, other than Tylenol for penis pain.

  • Full emotionality returned mid-2005. I have no tips/explanation for this unfortunately.

  • I had ZERO erections for at least a year. However, to my surprise, one morning a full “morning wood” erection appeared but I still had no libido and it was not sexually responsive at all.

  • In early 2017 an “insatiable lust demon” reappeared in my head and I’ve had normal libido since then.

TIP: Peruse visual erotica weekly to perhaps reawaken your sexual desire.

  • I still believed PFS had permanently/irreparably severed the brain-penis connection. I never had the slightest trace of a sexual erection or any hint that my sexual plumbing was working. However, “for the hell of it” I resubscribed to Playboy and downloaded some erotic videos but never attempted masturbation (to avoid “failure frustration”). In June 2017, I watched a video and felt an intense physical sexual desire for the first time in 2.5 years. Without any trace of an erection, I experienced an intense orgasm and very weak ejaculation. The next day I experimented and discovered EVERYTHING worked normally again – intense sexual desire, masturbation (20-30 minutes full erection), explosive orgasm, normal ejaculation. Since then I’ve daily masturbated 2+ times, no problems.

TIP: Try masturbating weekly, with or without erotica.

NOTE: I won’t answer Qs about sex/masturbation/sexual plumbing. Don’t ask. It’s all good.

  • I was suicidally-depressed from Dec 2014 – Jan 2017. (I’ll spare you details of my thoughts/irrational actions.)

My thoughts on surviving PFS:

+ Don’t buy a gun or pre-arrange suicidal techniques/suicide notes, to avoid acting rashly.

+ Take boatloads of anti-depressants prescribed by doctors. (I did for 1.5 years but have forgotten names).

+ See a psychiatrist/psychologist regularly (I did).

+ Socialize and exercise as much as possible.

+ Don’t overshare your PFS story; refer everybody to pfsfoundation.org for more info.

+ Don’t read suicidal forum posts or interact with suicidal types.


  • I have NOT recovered at all from “spectacularly awful” sleep dysfunction that began in June 2014 and certainly caused by 15 years of finasteride use (but not POST-FS). I rarely achieve unconscious sleep and instead “rest nap” randomly.

TIPS:

+ Belsomra helps considerably to make me sleepy for extended periods although it rarely renders unconscious sleep. It is RIDICULOUSLY expensive - $15 a pill – so expect resistance from your insurer! www.belsomra.com

+ I exercise intensely late at night, which thoroughly exhausts me and sometimes renders unconscious sleep.

+ Two cheap prescription drugs taken nightly perfectly restored normal sleep from April 2015 – Dec 2016 but thereafter ceased helping at all. (I’ve forgotten exact dosages.)

- Mirtazapine (Remeron), prescribed off - label to induce REM sleep

- Nortriptiline


MISC TIPS

  • Doctors will ignore and/or not understand your references to PFS. Refer them to the published medical literature: www.pfsfoundation.org/publications/. However, there is no medical treatment for PFS, so docs cannot solve your PFS issues.

  • Avoid alternative medicine like the plague! (I wasted moola bucks on truckloads of mysterious pills prescribed by an alternative doc – he had a medical degree so I took a chance.)
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Congrats with returning to normal life, it took some years, but you did it. Could be more of such recoveries…