Hi All,
I have not visited this site in about six years but I wanted to pass along something that has really helped me that might help other women CH sufferers.  I had CH's from 1998 until 2005 averaging six weeks per year.  The two exceptions were 2001, the year I quit smoking (my cycle lasted twelve weeks - go figure) and the year I was pregnant I did not cycle at all.  They began immediately after my son's birth.  I did all the standard treatments, was hospitalized for IV treatment, alternative, botox, blah blah.  Well in 2005 when I lived in VA I went to the Portsmith Naval Hsp Headache Center and the doctor suggested that I take the birth control pill CONTINUOUSLY completely stopping my periods and fooling my body into thinking it was pregnant all the time.  Her logic was that since that was the only time I didn't have headaches maybe it would work.  I thought it was the stupidest idea I had ever heard and a total waste of my time.  My frustration level was high and I remember actually being angry.  But the next five years were Cluster free.  I went off the pill last November to see what would happen and my cycle began three weeks ago.  I am having one CH around midnight and one around 2 in the afternoon consistently.  I went back on the pill but it has not ended this cycle.  I do believe it will keep me back in remission when this cycle is over though.  Also, I took the pill during my CH years and it did not help. The only time it helped was when I took it EVERY DAY completely stopping my periods.  Taking it normally did nothing.  Right now I am using the Sumavel Dosepro which works great but I'd rather have the needles so I can split the dose but my insurance won't pay for those.  Anyway, I don't know if this will help anyone but it has changed my life. 

Probably won't work for me... ;)....but that's great news! And I hear you on those suma pro injectors, they're a whisker pricey.

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If you have not already read it, check out this link on oxygen. For me, and for many, it's just about as fast as the injections, my aborts run about 6-8 minutes, and averages a couple bucks per abort. Much cheaper, no side effects, and very effective. Certainly worth a shot.

Hoping the beast is retired quickly!

Joe

Thanks for your well wishes. :)
I took Tylenol PM last night and had my first uninterrupted nights sleep in a few weeks.  Maybe it interrupted my REM sleep or something.  I hate being woken up with them so much more than I even remembered.  Longest I've had to wait for the Sumavel to work is 12 minutes and that was because I didn't get out of bed at the first sign when I woke up...tried to convince myself it wasn't really happening-lol.   I didn't have much success with oxygen, took too long for me and it seemed like they just got postponed for a while.  I'm planning on going into remission again after this-I will stay on the pill until I'm 90!  Right now I have eight shots.  Life is good.
I'm glad that oxygen is working for you.

One other suggestion for the night time hits is melatonin, an OTC sleep aid, start with 10 mg about 30 minutes before bedtime. Many can avoid the night time terrors with melatonin. Some combine equal amounts of slow release and standard release, ie 5 mg of each, to get them thru the whole night. Wishing you a decent nights sleep!

Joe

Your doctor's approach is quite interesting.  I don't recall ever having seen it here before, although other women have stated that they did not get hit during pregnancy.  It's an off-label use of birth-control pills, sure, but many of the treatments we receive are off-label. 

Thanks for passing this on.  Adding to the sum-total of knowledge and experience here is valuable, and much appreciated.  :)

All the best,

George

That's great news that this is working for you. I'd like to hear from other women on our board who either may or may not have had the same experience while using birth control pills. What say you ladies? Has either being pregnant or taking BC pills helped stop/prevent/alter your CH experience? Blessings. lance

Thank for the suggestions.  I really appreciate all of them.

When I think back to the being hospitilized with IV treatments like fire up my veins and all the other horrible treatments I tried and and the constant frustrations with insurance and trying to make shots last and all the many other things you all know about so I won't bore you with...I am AMAZED and grateful that something as simple as continuous birth control worked.  I really am.  I should have posted it sooner but at least I can be sure of what I am posting since I waited.  I remember something about the hypopthalamus and hormones.  I know it won't work for the men but maybe it will give another doctor another "stupid" idea. :)))  I love it when people prove me wrong.