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 !

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