Hi,

I first left a message last week looking for information for my husband who was diagnosed 3 years ago at the age of 55.   Now he's got them back after a 3 year remission.   Some of you thought might he have "cluster-like headaches" not CH.

Been doing some reading, and I think he has SUNCT instead of CH.   He has so many of the Cranial Autonomic signs associated with SUNCT.  eyes tearing, droopy eyelids, stabbing pains lasting almost all day and throught the night.   

We have an appt with Dr. Mark Stillman at the Cleveland Clinic on Friday.  His original appt. was with another neurosurgeon.     Dr. Stillman was recommended on this website, that's why I sought him out.

Another thing I found is Dr. Stillman wrote an article in 2006 re: low testosterone levels and had good results in his study of 9 peope.   7 males and 2 females.   7 in remission.    My husband is on heart meds and has to take viagra.  LOL

Also, I've often thought he has Sleep Apnea too and will ask for a sleep study too.   I read somewhere on the internet that could be a cause of CH too. 

I know you all know more than I do.  But this is what I'm reading.  I have a notebook I'm taking to the doctor to get some answers.  Just thought I'd update everyone.   Hopefully will get some good answers come Friday.

Susan D

Hi Susan, my name is Matt and I do have SUNCT and was diagnosed about six years ago but have been suffering off and on well mostly on for about ten years now and would be glad to talk to you about your husband to see if he does have SUNCT. I have only met two other people on-line that have SUNCT so it is very rare. Contact me through a PM or check yours I will give you my email in it so you can email me directly if you like.

Matt