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Cluster Headache Help and Support >> Cluster Headache Specific >> 35 years and counting
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Message started by maryo on Nov 13th, 2015 at 9:25pm

Title: 35 years and counting
Post by maryo on Nov 13th, 2015 at 9:25pm
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).

Title: Re: 35 years and counting
Post by Bob Johnson on Nov 14th, 2015 at 9:37am
Folks who have short breaks between cycles often stay on their Veap. 100% of the time. Consider this approach vs. being every watchful and anticipating.

Title: Re: 35 years and counting
Post by maryo on Nov 24th, 2015 at 7:24pm
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!!

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