So..not shadows..but all day now, my head on the cluster side feels..and it's hard to find the right words.  Sore? The skin on my face and head feel as if it's slightly burned.  I wouldn't call it painful.  Just...there.  Is that what fibromyalgia feels like? Is it the trigiminal nerve just constantly inflamed from the cluster attacks? I'm sure i'm not explaining it right..but if it sounds familiar to anyone, gimme a shout.

i always feel this way ! are you chronic i am going on day 3 of no CH but prior this i was having 6 CH a day for probably around 5 months and before that average 3-4 an day and i constantly felt sore on my CH side but my CH side changes every 2-3 weeks from right to left. Weird right !

Joshua wrote on Aug 16^th, 2012 at 7:46am:

So..not shadows..but all day now, my head on the cluster side feels..and it's hard to find the right words.  Sore? The skin on my face and head feel as if it's slightly burned.  I wouldn't call it painful.  Just...there.  Is that what fibromyalgia feels like? Is it the trigiminal nerve just constantly inflamed from the cluster attacks? I'm sure i'm not explaining it right..but if it sounds familiar to anyone, gimme a shout.

i do get that (on average,once a month) kinda feels as if someone burned your face and scalp with a torch (more on the scalp) on the cluster side...i cant remember what my doc called that (many years ago) but always leaves the following day.....Lenny

yup...me too...especially after a particularly nasty round of hits. lance

Thanks all.  Glad it's "normal" - lol.  I feel like I'm in a multi day waiting room, waiting for lithium/verap to kick in. 
.
Thinking about starting another course of prednisone just to hold me over- though I am loath to do that (and everyone that has to interact me would probably agree!)

Hey Joshua,

The burning sensation on your face and skin on the hit site is likely cutaneous allodynia...  another of the constellation of symptoms associated with the cluster headache syndrome.

What's the latest on your 25(OH)D serum concentration?

Take care,

V/R, Batch

Hey Batch-

thanks!  good to know.  I haven't had it tested since a few weeks ago, and it was I believe 128.  I have been taking 20,000 - 25,000 iu's a day since.... but still getting major hits, and have begun lithium. 

Joshua,

You gotta do whatever you need to do to control the beast.  If your 25(OH)D is 128 ng/mL and not 128 nmol/L, there's bound to be another factor involved that's preventing this regimen from being effective in changing your CH patterns for the better... 

A trip to an endocrinologist might be a good idea..

Take care and please keep us posted.

V/R, Batch

Yeah.  I've had my throid and some other levels checked, all normal, but only by my PCP.  Unfortunately, my available time to deal with this is going to go from much to none as I'm starting a new job Monday.  Will fin an endocrinologist this month I hope.