I've been one of the lucky ones, compared to many of you. My CH has been relatively mild and predictable. I've had some Kip 10's but only for short bursts, and controllable with O2 and Sumavel. My cycles were always predicable (spring and fall). This year, however, I had an early, short cycle in October. I was happy. Then, in December, I had an "out of cycle" cycle, that came on strong, so I immediately started Topomax, which has been very effective for me. I also started my usual regimen of running, O2, Sumavel, Cambia, Clonazapam (when needed), Aspirin (it does work for me) and Red Bull. I have to say, I'm at 200mg Topomax, often do 2 shots of Sumavel with a Cambia chaser, hit 20oz Red Bulls and am downing pills like a drug addict, and I have Ch 18  hours a day. I can't even lay down at night. I can't sleep on my right side, i wake up in horrible pain at 2-3 AM, I see bright flashes when I do, like lightning, sometimes fire (I think it's my mind changing the flashes into different visual auras). I think my CH has hit a new level of severity. I have an appt with my headache specialist in March, but of course my wife is pushing for me to go earlier. Not sure what to do. I haven't had this much pain. Of course I rationally know it's CH, but my family keeps wondering "is this a brain tumor, or something worse" (my uncle just died of a stroke a few months ago).

Just ranting and raving, and any advice or feedback would be appreciated.

I agree with your wife.  Don't wait til March for appointment and go earlier.

Hope you get relief soon! ;)

-Gregg in Las Vegas

Quote:

I think my CH has hit a new level of severity.

I wouldn't wait at all due to this. Abrupt changes, severe changes, weird changes to your HA and CH should be seen by your neuro or HA doc ASAP. While it may just be the beast changing course again, it could also signal something else, a new condition, medical emergency, or something else.

Also, remember that what worked last cycle may not work this one. The beast morphs on us all, and what works one day may not the next.

Good luck with your appointment and PFDAN to you

-Matt

My appt is March 6. I just called and got put on the "cancellation list". They are pretty good about that. They will call as soon as they get a cancellation. They often squeeze you in on an early 8:45 appt or something. Let's hope. This is the worst it's been in the 2 years since diagnosis and the 5 years or so since I've been getting the headaches.

That's still a long wait.  Are there any other qualified doctors nearby?  How far are you willing to travel of the doctor had an appt available tomorrow?  Just food for thought.

Good Luck Mike ;)

-Gregg in Las Vegas

He has been my doc for over 2 years. He knows my history, and there are no other headache specialists in the area. I already travel 40 miles to see him. I would rather wait, even if it means waiting a few days.

Got an appointment for Tuesday (tomorrow) at 245. Got a cancellation. I knew they'd come through. They always do. He's one of the few doctors in my 41 years on this earth that has always come through. I'll keep you all posted. Thanks for your help and support.

Great news, Mike ;)

Good Luck!

-Gregg in Las Vegas