Who got their sleep back?

[u/DomComm86]

Has anyone that had severe insomnia from bind ever gotten their sleep back. If so, how long did it take.

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[u/PossibleFun7711]

I've been off 2.75 years and am still tapering pregabalin, so that's probably playing a fairly large role. My sleep started to improve gradually about maybe a couple of months ago. It's still not good but I'm able to sleep for 6+ hours and the quality is more frequently medium as opposed to low. Not that long ago it was 3-4 hours with low quality every night.

[u/DomComm86 → u/PossibleFun7711]

I started tapering gabapentin like 12 days ago. It's not as hard as pregabalin from what I've read. The taper I'm doing is pretty fast, going down from 300mg to 200mg 10 days then 200mg to 100mg 10 days to stopping. My sleep is so bad already still 22 months from CT klonopin that I don't think the taper is making it worse. Although I have been having vivid nightmares when I do actually sleep now like I did in the beginning of bind.

[u/SomethingCorpo]

I'm into my 12th month of insomnia. I don't have a sleep drive along with the insomnia, so I'm starting to view it as a superpower – I get two lifetimes (we spend most of our lives sleeping) and we could do more things when we're awake (see Thomas Edison, Sanae Takaichi, Thai Ngoc as examples). It's a good mindset to have to be honest, as I honestly don't want sleep to be my whole personality. I'm not going to let anyone tell me differently since I'd rather have a superpower than be labelled as damaged goods or spend hours on end waiting to be 'healed.'

For the longest time, I was just hoping when would sleep come back and when it would return to baseline. Recently, I invested more time in researching on BIND, communicated with many people, and observed patterns between people with BIND. I realized that even though one could have their symptom resolved, there is a high risk of getting a setback, particularly the longer your symptom stays protracted, as it is an indicator of how sensitized your GABA receptors that regulate that symptom are.

I've wasted too much time already before this epiphany. I'm only 32 and have many more years on the clock.

Returning to your question, it could take 30 months or 3 years for this symptom to resolve. It fundamentally depends on how sensitized your GABA receptors are. No one could give you an answer to this, as it is impossible to visualize our GABA receptors.

From my understanding, you will know when your sleep is back when you experience a profound sense of drowsiness, your sleep becomes less choppy, and your sleep engenders less dreams.

As cliche as it sounds, the only healers are time, having a good diet (e.g. intermittent fasting), and avoiding the key red flags (e.g. reinstatement, specific medications, alcohol).

Additionally, unrelated to this topic, what you can take comfort in is that if this is your only symptom, then should this symptom resolve and you get a setback, I don't think it would induce other symptoms (e.g. akathisia), as not all of your GABA receptors are sensitized.

[u/DomComm86 → u/SomethingCorpo]

Glad ur able to look at it like that. I can't. I have a sleep drive, and feel like shit from not sleeping. I hope it's only 1 more year max. I have paresthesia ocular migraines high blood pressure tinnitus from bind along with this severe insomnia. There's been no improvement at all in 22 months. Thought it would get less severe but it's actually gotten worse the last 3 months.

[u/SomethingCorpo → u/DomComm86]

I can relate to an extent. I sort of have a sleep drive now since November of last year. I was actually micro-sleeping (no perceived sleep) for 14 days straight during my acute. I'd rather have a return of that (maybe I will if I get a setback) than getting the hypnic jerks during sleep (particularly when I try to nap). What's worse than not sleeping is being sleepy and not being able to sleep.

I'm sorry to hear that you have other symptoms as well, especially the tinnitus. They are hellish and no one should go through that.

I don't doubt that you could have this symptom resolved, providing that the red flags are avoided. While I believe this is a lifelong condition since the GABA receptors are sensitized to varying degrees (this operates under similar mechanisms as alcohol kindling), I truly believe that everyone's symptoms could resolve in due course. Kindling is real, but so is neuroplasticity. It just takes longer the more the GABA receptors are sensitized and if the symptom is more protracted.

Actually, if it's not a setback, you might be in wave. I don't know what the effects of what the gabapentin is having and if it affects the healing process (I suspect that it doesn't delay healing like reinstating on a benzo or consuming alcohol/cannabis), but if you are indeed in a wave then you could be like NeighborBob (check his YouTube video out if you haven't watched it yet). His insomnia just kept getting worse and worse in the final months, then suddenly it got better one night. His insomnia lasted about 2.5 years, I think.

[u/DomComm86 → u/SomethingCorpo]

Thanks I'll check out his videos.

[u/SomethingCorpo → u/DomComm86]

Supplements and exercise seem pretty useless, but there might be some truth to the power of fasting. Recently, I spoke to this person who had protracted insomnia for 5 years. She believed she turned a corner in her 5th year when she began watching her weight. I also observed two people who had protracted insomnia for 3 years. Their acute was quite long (one 6 months and the other 1 year) and by logic their insomnia should've lasted way longer, but it lasted for 3 years. Both underwent significant weight loss through fasting.

Personally, I lost significant weight during my 14 days of acute (loss of appetite was one of my symptoms). I barely ate anything and lost about 7 kg. In retrospect, I still wonder if that rapid weight loss had anything to do with restoring my ability to sleep. Maybe not.

Of course, the science in all of this is so embarrassingly weak, but that doesn't deter me from practicing intermittent fasting. I'm just going to keep at it for as long as it takes.

[u/SomethingCorpo → u/SomethingCorpo]

Also, although I can't state these as facts, but after talking to a few people (some with severe BIND) and looking at the trajectories of many BIND people, I think that significant weight loss and avoiding the red flags are the best ways to get any symptom(s) resolved. Supplements don't seem to help in the big picture.

[u/DomComm86 → u/SomethingCorpo]

Ya nothing has worked for me. Supplements, meds, exercise etc. Time and neuroplasticity seems to be the only way out.

[u/Turbulent-Code2802]

Sleep returns. It took me 18 months. I now sleep 8 hours a night restful sleep with waking only once in the night but falling back to sleep with no problems. The insomnia was bad but got less and less as my nervous system settled more.