I’m still reading through the many comments and advice etc. posted on the boards and so some of the answers I’m seeking may already be here and I just need to find them. However dealing with runaway chronic CH I wanted to go ahead and ask anyway. I’ve been in remission for over 4 years and all previous cycles were once a day or once a week which I could easily deal with using Sumatriptan. I also discovered oxygen near the end of my last cycle and was able to abort after only 5 - 10 min at 7 LPM.
After 4 1/2 years without a single episode I mistakenly assumed I was home free and was absolutely shocked when they resumed as chronic episodes of up to 10 or more a day. I’ve been pouring over the information on o2 and have an unlimited supply and now use a flow meter at 25 lpm and I’m using the specially designed O2 ch non-rebreather mask to great success. The problem is the frequency as most come at night. Using the hyperventilating technique I’m able to abort in usually about 10 minutes but the problem is being woken up every hour or so throughout the night.

I have a good supply of Sumatriptan and multiple o2 bottles both e & c sizes but I’m burning through them. I’m going to start on d3 and was interested in the reports that Melatonin helped. My concern is being so sound asleep that I only wake once the pain is too severe to abort with O2. On the other hand I desperately need to get some sleep. The few times I’ve had to use Sumatriptan at night I found I was able to sleep fairly soundly for a few hours before another attack.

About 2 weeks ago my doc started me on verapamil which I think is helping to tame the beast at least some. I’ve been in Omaha for the past 10 years and wanted to ask what are the best doctors here that are most familiar with CH and what prophylactic meds others have taken that have helped with chronic CH. I’m seeing a neurologist next week with the Nebraska Medical System but have no idea how familiar they may be with this.

Any suggestions as to doctors, meds, vitamins, etc. available in the Omaha area that has helped others with chronic ch would be very welcome. At this point any and all suggestions would be greatly appreciated. With my episodes coming so fast and so frequently I’m almost getting a bit freaked out about going anywhere other than work or home. I’ve seen several post from individuals who have dealt with chronic CH for many years and I would be very interested in how to cope with this.

My thoughts and prayers go out to everyone who is also fighting this.

Ten hits in a night can be devastating, Stg, but as sumatripan seems to be giving you some respite you might consider sumatripan pills as a possible preventive.  They're mostly not used in CH because they are quite slow to kick in but they do last for quite a long time.

Naturally you'd only do it in consultation with your doctor, and you'd also have to balance it out against any sumatripan shots you might want to use, but it's an idea I thought I'd pass on.

As an aside there's also some "cluster-like" headache syndromes which can result in 10-20 hits a day (oh, the joy of multiple headache types) and that might be worth consideration, too.

Please let us know how you're getting on.

We care.