I have had CH since I was 20, am now 36. Only triggered by alchohol until diagosed 3 years ago, intially triggered by alcohol, but in cycle CH would attack when I took a nap- once randomly in the middle of the day. I started on verapamil 180mg- been fine since except a month long period this last January- where I had my first use of imitrex & oxygen. It seems as years have gone by, my secondary effects have gotten a little worse- these occur almost constantly, all day, everyday, like background "sensations" - 1) drooping left eye lid with a sensation of tension and blood shot eye, which goes away with visine use (comes back after 3-4 hours)  2) tension sensation running from my left eye over my head, behind the ear , through the left side of my neck and into the shoulder and down to the hip (though not as intense as in my shoulder & arm)   3) some numbness/tingling behind my left shoulder and arm - like my shoulder and arm went to sleep   4) twitching of mainly my eyelid but sometimes in other parts of my arm

Had an MRI, no inidcation of MS- neurologist just nods when I describe the symptoms..

Has anyone else experienced this? Should I seek a new neuro ? any meds for this ?  Thanks !

Hey Let. May I call you by your first name?

You sound like many, many people here about the naps. I'm one of them. Although I get very few attacks now I still remember the attacks 30 minutes into a nap. No naps for me. Usually. Sometimes. OK, I still enjoy a good nap but it's always sitting in the La-Z-Boy in a mostly up-right position.

I'm 48, had CH about 30 years. Severity has steadily lessened as I've gotten older, due in large part to the routine for dealing with them, my prevents, oxygen etc. I get many of the symptoms you described but have always attributed it to my tendency to knot up my shoulder and neck o the right side, (I'm a strictly right side sufferer.) I get the eye lid twitch to, sometimes so dramatic I can watch it in the mirror!

Some of what you descibe is what a lot of us refer to as shadows, that dull aching like it wants to start a headache. Caffeine will often times knock a lot of those symptoms away for me. Welcome to the board glad you found us!

Guiseppi

Hi LetitSnow, be welcome, be very very welcome.

I'm 33 and suffer from this Demon since in my last highschool year(s).
The twitching of the eyelid, check. Twitching of muscles in neck, arm (I'm a rightside painside kinda guy) and shoulder, check. Dull baby headache inbetween hits, check.
But I've never experienced a sensation running down to the hip. Not sure what that means, but I've learnt on this site that we can differ in many ways as far as symptoms go.

I believe the humongous tension of the neck and shoulder afterwards is not so much a part of CH, but due to the ways we hold our heads with all our strengths and the ways we curl up like infants. But then again, not sure of that either.

Painfree vibes from the Netherlands.