Hello everyone, i found your site by doing a little research online and i'm glad i did.  I have been suffering from what i thought were just really really really bad migraines since i was 20 i'm now 27 and just finally starting to understand that these are not migraines.  It was very hard for me to really even understand what i had or what to do because most of the doctors i would go to would just write it off as migraines and i'd be on my way, but wow as anyone of you can atest these are not migraines.  It so hard to grasp the pain and suffering that these attacks cause unless you've expeirenced them yourself.  SO finally i'm going to see a neurologist soon and i was wondering what kind of treatment is good to talk to the doc. about.  I currently get Imitrex but only 3 months worth at a time, and during a long attack, thats not enough pills and they just dont work fast enough, by the time they hit i'm already so far past the peak of pain.  Should i consider the injections or maybe some kind of blocker?  My CH have just morphed again and now i am experiencing them during my sleep for first time.  Nothing like getting woken up by a hot poker to eyeball at 200 in the morning.  Okay well nice to meet you all, just let me know what treatments work for all of you and ill ask the doc about it.  Thanks a bunch. mike

Batch wrote on Jan 25^th, 2012 at 2:04pm:


THIS post and its site should be a friggin sticky! I have been here 10+ yrs and never saw this link...MY bad. Pete...dang it...

.... your contributions continue to amaze me....and make me EXTREMELY grateful I am a member of THIS family.

I recently commented on the hesitancy, fear, doubt, and intransigence of physicians who will not consider any treatment not "accepted". They got NO excuse given this information....it's "official"......and I encourage any clusterhead meeting a roadblock with their "treating doc" to show 'em this...

Best,

Jon

I'm in the process of trying to force a neurologist referral right now.  I am in the military so i am very thankful that my prescriptions are paid for in full so hopefully i will get a neurologist that has some kind of familiarity with this.  If so, i am going to push for O2 seeing as everyone seems to agree, it is the best method.  When i'm in the middle of my attacks i get 3-4 a day so the imitrex is almost a crappy option because i'm always afraid i'm gonna take too much.  I have 50mg pills right now, its all our pharmecy carries.  It says that i should not take more than 4 a day, does anyone have any experience with taking more than 200mgs a day? i usually just struggle through 1 a day so i can make sure that i can take the pills at night while i'm sleeping.  I have getting CHs for over 6 years and have been to the doctor multiple times(although for the first year i just dealt with it, mistaking it for migrains and downing countless excedrin)It blows my mind that just not for the first time i have ever even heard of CHs.  There were times when i was sure i had a brain tumor and was really just counting my days afraid to go to the doctor because of what the results might reveal.  Finding out about CHs has been a gift! thank you all!