As a new member its time to tell my CH story.
From I was about 16 years old, I noticed a pain in my head around my left eye, every day at 12:00 (noon)
Its was like a build-in timer, exactly the same time every day. The pain it self was strange, a bit strong and last about 15-30 min.
I could release the pain by pressing my finger on a nerve in my shoulder and neck.
OK, have to tell I am blind on my left eye, I passed some surgery when I was 5 y.o. as my eyes was not looking in same direction always
Some shit happen and some infection started, and after a while totally out of control, some years after it was just "dead"
Anyway, its not a big deal with only one working eye, but with all the eye trouble, all doctors had focus on my left eye for many years.
When I was about 28 I was 1 hrs. from a surgery where I was suppose to get rid of left eye, as we all believed the pain came from there.
I have just read about CH somewhere and I recognized all the symptom, and explain it for the doctor with the knife ready in his hand.
He looked surprised on me and said, I think u are absolutely right, better we spare your eye now and let a Neurologist check you out.
And it was confirmed CH and O2 was working well, Yahoooooooooo, pain release now, after 12 years.
At that time it was periodic and perhaps 2-3 month a year, start same time about October every year.
Then some change and it was for some year in spring time, and then summer time and then totally unpredictable until now.
It is like the attach and pain are getting stronger and stronger as older I get, but I remember some really bad days without O2 when I was in the thirties.
Before I knew what it was and how to deal with it, I tried everything to release the pain, including shower where I changed the water from boiling hot to ice cold all the time, released the pain a bit, but feels like getting a heart attach when i change to cold lol.
Blocking blood flow to the head by pressing a bar or whatever in my neck was a release and could sometimes stop it.
If my GF pressed very hard on a certain place on shoulder could stop it as well or at least release the pain.
Have been scared like hell to fall asleep as it would trigger CH in about 1,5 hrs.
Have been walking more or lesser naked outside in -15 degree to get pain release.
Have been refused to boarder a flight with my small O2 "bomb" even airline and security was informed upfront.
I tried Imigran injection about 5 years ago, and it was like getting a new life.
I have tried to shoot my self trough my pants doing a meeting, and been able to continue without break.
Imigran have one side effect for me, I will get very heat sensitive for max 2 hrs but its minor problems comparing the CH it self.
My CH seems to be totally unpredictable now, and the last years I have had some long and very heavy attack.
Have been able to break my periods with Prednisolon in few days and CH free for 4 month now