Has anybody else TOTALLY stopped sleeping?

Symptoms Neurological
#10

Well bad news/good news.

I’ve had several “brain meltdowns” beginning in Dec. 2024, when PFS hit.

The latest happened three weeks ago.

Overnight, my dizziness/disorientation/loss of fine motor control dramatically worsened, for example:

  • it is difficult to put one foot in front of the other to “walk” with my walker, I’m a combination of Frankenstein/drunken sailor
  • it is difficult/disorienting to rise from bed and put my shoes on

The sorta-good new is that periodically I become deliriously/profoundly exhausted and must lie in bed to rest (sleep?) for 1.5+ hours. I’m definitely passing into some sort of state of unconsciousness, although it sure ain’t restful sleep like the old days.

As I’m writing this at 6am, I just arose from my 5th rest (sleep?) period of the last 24 hours, so I’m resting (sleeping?) 10+ hours per day.

#11

On a less-serious note:

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#12

balance calcium/magnesium and sodium/potassium

#13

It’s been two months, any new developments? Are you still having those unconscious resting periods?

#14

VERY EXPENSIVE sleeping pills Balsomra + intense exercise lets me sleep usually 3 hrs night. Plus naps/rest 2-3 times day.

#15

Balsomra only.allows you 3 hours of sleep?

What was your reaction to benzos and non-benzos?

#16

I have same problem, any updates? did you try benzos?

#17

Damn, how long have you been awake?

#18

I have a suggestion for possibly regaining sleep. It’s kinda with the same thought process as using finasteride again to cure PFS, except for sleep you don’t have to use finasteride. You can maybe go to directly to the source with another drug.

The drug is Setipiprant/Fevipiprant. They’re asthma drugs that some people think can also grow hair back. I think the trials for Setipiprant just ended and they came to the conclusion that it’s not better than current asthma treatments so they’re not going to be marketed as such. Fevipiprant is more potent and trials for that are awaiting.

I’ve read that one of the side effects from these drugs is indeed insomnia just like finasteride causes. I’ve read about people experiencing insomnia on finasteride that went away when they kept taking finasteride though. The theory on that is that finasteride constantly damages and/or resets whatever receptor is responsible for sleep, possibly the PGD2 receptor. But with Seti/Fevi you can bypass finasteride and all the DHT side effects and maybe reset the receptors responsible for sleep because Seti/Fevi are further down the line in receptor changes.

Here’s a possible outline on how they work. Could be totally false lol as I don’t know the source of the data, I think it’s some sketchy overseas lab.

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So I’m thinking maybe taking these drugs could possibly restore sleep without risking other fin related side effects. I think you can still get Setipiprant, you’ll just have to find a doctor to provide it off label. Might be worth a try for you guys that can’t sleep at all. But this is just a theory from me. I don’t know all the side effects of these drugs so research it in depth. But if it can cause permanent insomnia it’s dangerous too so consider the risks.

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Cycled a Saw Palmetto supplement, my story
#19

See my thread re working out late + Belsomra (consistently getting 5+ real sleep hours now):

https://forum.propeciahelp.com/t/intense-late-night-exercise-plus-new-sleep-drug-balsomra-currently-puts-me-to-sleep-heavy-rest-for-6-hours/30052

#20

Did anyone ever end up trying this? I don’t know how much longer I can deal with this fatigue. Doesn’t matter how long I “sleep” because it’s never quality refreshing sleep.

Everyday I wake up I feel like I only slept for 5 minutes and like a train had just hit me. It’s almost impossible to go through life like this.

#21

How long has it been like that TL? I feel the same a lot of the time, but my sleep is better than it was and I know a lot of people say their sleep improves with time.

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#22

I don’t think so, but these asthma drugs can cause insomnia too so my idea is pretty much the same as taking finasteride again to fix finasteride side effects lol. Prob not worth it.

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#23

Been a couple years now. My ability to sleep long hours has improved but I’m still always tired. The quality of sleep is just horrible.

#24

I tried that already lol. I did that in my first year after crashing. You get immediate temporary benefits. It’s not a cure at all though.

#25

Still reckon there’s something Hypothalamus related here where the sleep is crappy as the fight or flight mode is stuck on some kind of feedback loop …hence the unrefreshing sleep .
Of course I’m no expert just theory ! But when you look at the symptoms of a malfunctioning Hypothalamus it definitely seems similar. Sure finasteride fucks with it somehow

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#26

I can say me sleep quality recovered fully during my brief temporary recoveries. (Ghb, thyroid, dhea, pregnenolone were the substances used)

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#27

There was a period where I didn’t sleep for days, gladly I would always sleep at least 7-8 hours after 3-4 sleepless nights.

And even though I felt like I was awake all night, in the morning I wasn’t that tired. Which was weird.

The last few weeks I’ve been able to sleep much better though, 6h+ per night.

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#28

Pfs makes no sense. I’m the exact opposite since I feel tired all the time no matter how long I sleep.
Glad to hear you’re doing better though man.

@Cbrandel

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#29

Mirtazapine ended up being a help for me …not so much from its initial sedating effect , more so after 2-3 weeks of use it just seemed to reset sleep and circadian rhythms.
When the insomnia was bad I too like @Cbrandel didn’t feel tired after a night of zero hours, Mirtazapine made me start feeling tired at the right time of night etc also helped lower the tinnitus electric pulse sound and helped with Anhedonia . I understand it’s probably not for everyone but for me earlier this year sleep was just so bad i needed to try something , as not taking anything was just month after month of suffering :man_shrugging:

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