It seems a long journey for me as I imagine it has for most of you.  The way I see it, I've tried the easy answers and now I have to deal with more difficult decisions. 

I've had all of the epidural block treatments I could have.  I've had Low Frequency Radio Wave nerve burn.  Tried just ONE recommended drug (topamax).  Stomach problems put an end to that.  I've purchased Kudzu... nasal pepper spray... lithium orotate (probably not the right kind) so far... nothing.  The new pain specialist prescribed Fioricet.  Forget that... though it does help me get back to sleep after middle of the night visits.  Red Bull  helps with shadows during the day.  It tastes terrible but helps energize me and lifts my spirits some too.

I've started Batch's Vitamin D3 Fish Oil and Calcium Citrate program.  (I plan to stay with this regardless of what else I do) This has did not seem to affect the frequency or duration of the visits from the soul sucker beast ---  YET! 

I have the non re-breathable mask and oxygen with a regulator that goes to 15 and that does help... but only if it run for it immediately and breathe to the point of lightheadedness. 

Now... as many have suggested, I decided to do the NEXT right thing and made an appointment with a neurologist.  Dr. Herrara in Sioux City Iowa  professes to be "A Cluster Headache Specialist"  WOW... how lucky can I be???  I'll believe it when I see it on July 28th.  (he must be good... I had to wait a whole month for an appointment)

Until then I'll make the most of the PF days and do whatever I can to cope with the misery.  Knowing you guys are doing that to makes it seem a lot more do-able. 

I'm so glad I found this board.  I appreciate each of you and I read here every day.

Linda
aka Granny Arizona... but spending the summer in Northwest Iowa where the Missouri river  is making national news. 

No question you're doing the "next right thing!" I hope he actually has a clue about CH. Talk to him about upping the flow rate on the oxygen, people are dramatically cutting their abort times with the higher flow rate regulators, 25 to even 45 LPM.

I'm hopeful he can find somehting to improve the quality of your life. Fingers crossed......

Joe

Granny, I know how frustrating this can be. You've begun to compile a list of what has not worked, or what has worked somewhat. And that's a good thing. Knowing both will help with your appointment. I second what Joe said. I know we are all looking for that magic bullet, and sometimes we find a med combo that seems to work, but O2 aborts and the relief it brings cannot be underestimated. And I still contend that the more and quicker you abort with O2, the less frequent and intense the hits. Just my opinion, but one I think attested to by many here. Good luck and let us know how the visit goes. Blessings. lance