Hi all!

I have had episodic clusters since 2001 but I think I have now turned chronic. My last episodic term was July (normal episodic term for me lasting 3-4 months) of 2012 and they never really went away. From shadows to a Kip of 2-4 lasting only 5-15 minutes during the year and now they are back to full blown since about two months ago. I have gone back on the full regimen of 40-60mg of Prednisone, 120mg of Verapamil and O2 daily. I have also started 10,000 IU of D3 supps daily to see if it will help.

I didn't finish my Paramedic schooling because of this rotten ba$t#&d and now fear that I will not be able to work ANYWHERE anymore. When I have to drop what I'm doing every 2-3 hours for a half hour to an hour (no O2 available but on the meds) the employers tend to get a little irked. I have been asked to leave three jobs because of CH's.

My question is...Is there anyone who has gotten disability, S.S.I., etc. due to this affliction and not being able to get through a workday? Is it a "recognized" disease?

Thanks for the help!
Billy

To the best of my knowledge this is not a "recognized" disease, if by that you mean is it on the list of accepted disabilities. You can search the site for posts, there have been a few. The outlook, at least without a good lawyer, is not good as far as I've been able to tell. And yup, your verapamil is extremely low. 480mg is about the usual starting point for relief. blessings. lance

It's hard to believe some of the things that qualify as "disabling" by the SSA. I went to their "Blue Book" and am researching for something that might relate to CH. Surely there has to be something.

When experts suggest "the disease is the most painful condition known to medical science" ... there has to be some kind of relief ... especially from a program to which we have all contributed to and virtually OWN!

I'll continue my research and get back to the group.

Red

I guess my first question is how good a job is your neuro doing? Do you need a new set of eyes on your disorder?

I would also work on having O2 at work if possible.

My CH skyrocketed when I was in nursing school (I'm also a paramedic). I was having 4-5 a night aborted with O2, each one harder to abort the the previous. Verapamil is my best friend now.  I almost never get daytime headaches. I also went years and years without diagnosis and had to experiment with treatments and remedies (no triptans, no verapamil). So I know a few tricks that help in a pinch. I think your challenge will result in your being more resourceful, certainly starting with better pharmaceutical control because, as someone else noted, your verapamil dose could be raised to see if that does the trick.