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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
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