Dealing with major amounts of hypersomnia, need help

[frozenborderline]

So I had some episodes ofnhypersomnia pre surgery but they were more limited and different than what I'm experiencing now. My sleep wasnt usually deep in a refreshing way, I often felt unpleasant and like I was gasping for air when I woke up. It also was just less consistent hypersomnia and less difficult to wake up from if I had to.

Post surgery I noticed that my PEM started manifesting more as deep sleep instead of the usual wired-tired, flu like, muscle pain and brain on fire stuff while awake. It was like my brain and csf flow changes from surgery had led to a protective response from my body where it would go into a healing coma almost , just major deep sleep after exertion.

But I also slept more deeply and long than before even if I didn't do major exertion. And I'm talking like between 10 and 17 hours. There are many recent days where th4 majority of the time I'm asleep. I am troubled by this. I have heard deeper and longer sleep can be part of surgery recovery and I guess that's fine but in a practical level it sucks to only have a 2window of like 7 hours or less to be awake lol.

I am not sure if 5he sleep is "refreshing " bc that word usually means waking up from it with energy and I dont have energy but it is better quality sleep than I had pre surgery. I am not having the gasping issues, the feeling of my brain being on fire or being smothered that I got pre surgery. Just normal deep sleep with a little REM (I dream but hard to remember them and I think its more deep slow wave sleep than REM).

Narcolepsy Is easier to treat than ME/CFS but not as a comorbidity , that would suck to have both bc the narcolepsy meds like adderall aren't tolerated in me/cfs. I don't want another disease!!! Also idiopathic hypersomnia seems to have basically no treatment besides maybe off label modafinil and I dont know if my body could tolerate thatb

I can tolerate some caffeinated beverages but no amount seems to keep me awake if I awakae before about 13 hours of sleep. Today I slept 13 hours and woke up earlier than my body was going to, for an afternoon appointment, and I still felt like the caffeine is barely keeping me awake and I'm sleepy.

I wonder if theres a crossover between the narcolepsy etiology in the brain, which involves some type of histamine receptor issue, and mcas ... I'm wondering if the non drowsy mast cell stabilizers or antihistamines would help

 

[frozenborderline]

@Hip do you know anything about the etiology of hypersomnia or narcolepsy?

 

[frozenborderline]

@jeff_w also anyone who has had ccf fusion surgery (I don't know which users here have had it to tag... please let me know how to find that out) , is it normal to have this post surgery?

 

[frozenborderline]

This study shows that low histamine is associated with hypersomnia. which is weird bc I have high histamine like all mcas patients. But also it says its only associated, not necessarily causative. And that hypocretin is the thing most suspected to be causative.

Hypocretin is also known as orexin and is I believe the main problem or target in narcolepsy research. The main theory is an issue or loss of orexin producing neurons or something like that???
Her3w some studies on hypocretin https://www.nature.com/subjects/hyp...exin,signalling is associated with narcolepsy.

 

[frozenborderline]

It's also possible that this is normal post surgery. I just changed the way my brainstem is positioned which leads to difference in csf flow. Csf flow and glymphatic system is how the brain cleans itself, like maintenance . This was blocked before I had surgery, and once I had surgery, it is unblocked. So I wonder if my brain is just catching up for a month or a bit more , and doing lots of cleaning. The sleep quality is better than pre surgery.

I am hoping someone with a fusion can weigh in here

 

[Hip]

@Hip do you know anything about the etiology of hypersomnia or narcolepsy?

Not much, really. Narcolepsy is caused by a lack of orexin (aka hypocretin).

I was hit with a bad cold last week (not COVID fortunately), and am still recovering. Hypersomnia is the name of the game with me a the moment, because I am feeling exhausted post-cold, and sleeping much more than normal.

 

[lenora]

It hasn't been too long since you had surgery. Perhaps your body really needs to rest as it heals. I would think something like 6 mos. is more than enough....if you're still having problems then, see your neurologist/neurosurgeon.

I had surgery for Arnold-Chiari many, many years ago. This also involves the brainstem. I don't recall that I had hypersomnia, but I certainly a person who has insomnia today. No, nothing works, my neurologist has been great about trying everything available. Still, I almost feel these drugs make the entire situation worse so I haven't taken sleeping meds for many years now.

You had a lot of emotional turmoil before surgery, so perhaps that's also playing a role in your recovery (tiredness). Try to do gentle exercises when possible (in bed, if necessary). You may become alert once your body has recovered. Yours, Lenora. (Feel better @Hip!)

 

[pattismith]

@frozenborderline

I suffer with Daytime sleepiness.

Increased GABA activity seems to have a common role in Idiopathic Hypersomnia/ IH and Myotonic Dystrophy.

Viewing Hypersomnias Through the Lens of Myotonic Dystrophy - Hypersomnia Foundation