Just checking in to say hi. So, yeah, 35 years I've had this disorder, 28 years with no diagnosis, and getting what I need is still hard at times. Hopefully my new oxygen supplier works out better than the last one.

I have good success with verapamil, what a god send. I go off it every 2 weeks to see if the episode has ended (the two 10/10 attacks last night kinda suggest they haven't) and give my bowels a chance to work again.

Anyhow, I'm one of the lucky ones who has successful prophylactic treatment. In 2-4 weeks my episode will end and hopefully I won't have another until Fall of 2016.

Interesting that one of my sons has an episodic neurological illness primarily involving left trigeminal neuralgia (my CH are right sided).

OMG the side effects of Verapamil are a bit much so every day certainly isn't worth it to me.

Usually I can go off the verapamil after 4 weeks. The rest of the year I have a nice level of amnesia. Except I have been having a second, shorter episode a couple of months later. But still, I love my 9/10 months off verapamil.

Thanks for the tip anyhow. It's so nice to come on here and read/hear sensible thoughts!

Still waiting for oxygen. Orders were phoned in almost 2 weeks ago. I guess it's coming Friday. There are a few things I'd change about the world, and one would be quicker oxygen for CH!!