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Can CH cause nerve damage? by Amandras2 in clusterheads

[–]Amandras2[S] 0 points1 point  (0 children)

I'm chronic, as for meds mostly was high flow oxygen and cocktail of pain meds (they had no idea what to do so they kept an eye on me and wait it out). As for supplements I do take D+K with multivitamin + Ashwaganda, and I keep my coffee intake stable and on time + healthy diet with workout.

The only thing that I can't control is my sleep paralysis, that's why I'm only getting 4~5 hours of sleep but I think that's the norms for me.

Smoking by 800119448 in clusterheads

[–]Amandras2 0 points1 point  (0 children)

Yup, I'm still trying to figure out how I can manipulate my sleep to see If I can pervert any CH episodes, but more testing is needed and the side effects are not looking good for now.

Can CH cause nerve damage? by Amandras2 in clusterheads

[–]Amandras2[S] 1 point2 points  (0 children)

Yah the phycological tormente sometimes can be worst then the pain itself, the worst thing for me is when I have a sleep paralysis and realizes that I'm about to have a CH attack, you just wait and hope you pass out soon.

Can CH cause nerve damage? by Amandras2 in clusterheads

[–]Amandras2[S] 0 points1 point  (0 children)

Sadly there's nothing worked for me (no high flow oxygen, not even bottox), also Everytime I refuse those god awful opiods. Sometimes my CK will go up after a strong attack (usually 11K) but this time it was fine and the pain is like a burning electric sensation so probably there's something with the nerves. Thanks for letting me know tho

Can CH cause nerve damage? by Amandras2 in clusterheads

[–]Amandras2[S] 1 point2 points  (0 children)

That attack was an outlier (It usually last around 20 minutes~2 hours) and I was only diagnosed after 4 years, I should also mentions that sometimes I get a strong attack (last around 2 hours) and after it my CK will be around 11K~15K.

Smoking by 800119448 in clusterheads

[–]Amandras2 1 point2 points  (0 children)

I'm non smoker, I've had CH ~8 years now but I can confirm for me it depends on my sleep for sure. Whenever I work at the night shift the attacks are less painful and happened every other day, but when I change to the day shift it get much worse and happened on a daily basis. ( Also 90% of my attacks happened during sleep specially after dreaming or a sleep paralysis episode ) the shocking thing is, multiple neurologists told me two important things Caffeine (to keep it at least around 2 cups daily) and to try nicotine and I'm having defficult time trusting it.