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

Hey Mike,

Welcome aboard.  When you get in to see the neurologist and the discussions about medications come up, have a printed copy of the following link with you.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This is the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.  The team of neurologists on the taskforce that developed these recommendations rank among the top specialists in the world treating cluster headache sufferers.  They see more CH'ers in a week than the average neurologist sees in a lifetime.

Take care and please keep us posted when you've had your appointment with the neurologist.

V/R, Batch

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

Hey Mike, Welcome aboard.  When you get in to see the neurologist and the discussions about medications come up, have a printed copy of the following link with you. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE This is the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.  The team of neurologists on the taskforce that developed these recommendations rank among the top specialists in the world treating cluster headache sufferers.  They see more CH'ers in a week than the average neurologist sees in a lifetime. Take care and please keep us posted when you've had your appointment with the neurologist. V/R, Batch

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... [smiley=bow.gif] [smiley=bow.gif] [smiley=bow.gif]

.... 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

It's not uncommon (in fact it is quite usual) for CHs to interrupt us in REM sleep. Don't know why they like REM but they do. And yes, it seems as if your CHs are morphing into a more aggressive routine. So you need to be more aggressive. Batch's file is great. I would encourage you to consider the trex injections over the pill form. Trex works faster, and if you use the trex tip at the left of this page, you can double or triple a 6mg dose pen and stretch it out. You do need a preventative as listed in the file. Be aware that many of us need much higher than label use doses. Verapamil is rarely given above 240mg/day. That is just a starting point for most of us. For us, the range you encounter goes as high as 960mg/day. I take 640mg for relief. You also want to explore the 100% high flow O2. Some docs are still prejudiced against O2, but I gotta tell it literally saved my life. 100% O2, flow rate at or above 25lpm, and a good nonrebreather mask. Couple that with an energy drink that has at least 1000mg taurine, and you're aborting a hit in under five minutes (2-3 minutes for me). Keep us informed of what happens and ask any questions you need. Blessings. lance

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!