Hi. My name is Steve, and after remission, my clusters are back worse than ever before. Just seeking some help. You can email me at: svladoiu@sbcglobal.net
I've had CH my entire adult life. It's been in remission for about a year and a half, but this time I'm getting 4 or 5 a night instead of 2 or 3. In this time, I got a new doctor over a year ago and told her I suffer from them. Last week I tried getting a hold of her but she never returned my calls. Finally, yesterday I got a hold of her nurse and told her about my CH and need, immediately, my usual prednisone for a couple weeks to stop them. My doctor refused to write a script without seeing me first and told me she was going on vacation for several days to make an appointment. I told her it couldn't wait, but she refused. I thought doctors took a vow to help and stop pain/suffering? Making me wait is the worst form of torture you can do to anyone. I wouldn't wish CH's on my worst enemy. But her non-caring and lack of understanding makes me want to sue!! I am so pissed off right now, and want her to experience what she is making me go through, but there's no way to inflict on her what she has done to me. Any ideas? Please help me get through this!! There's NOTHING I can do to stop them at night but ride them out, and it's wearing me thin very fast! I just want that quack to burn for this!!!

I know how irritating it is to have the WRONG doctor!! You have to find a new one - check for doctors who are knowledgeable about CH because most of them don't have a clue.  Call up the places on these sites and get a referral to someone in your area.  I had a NEUROLOGIST, of all things, who accused me of lying when I said they woke me up and when I said they were only on one side.  Then he laughed at me for wondering if these would cause any permanent damage (He is the one who diagnosed CH for me!), although I had never heard of CH before (after having them for 4 years).  Another doctor told me I was still having them because I wasn't doing my shoulder exercises.  So get the right doctor and get on some oxygen right away!  What a pig you got!

I've been riding them for 31 years, one thing I've learned is no matter how long I've been in remission, I have 02, some abortives, and a stash of prednisone to get me through to my first appointment! Does sound like time for a new doctor. These things are too damned difficult to have a doctor who treats them lightly.

Have you already tried the energy drinks and taking melatonin before bedtime?

Joe

a doctor who understands what CH is, will always help you immediately!!!  your doc sounds like a quack.   even if you go to a family doc and tell them your story, they shouldnt have a  problem giving you your pred.   I know how frustrating doctors can be.  People need to stand up to them, and let them remember  that they are working for you, not the other way around.  we are paying them for a service, not really different than you would pay a mechanic or electrician to do a job.  they walk around like they are God on earth or something, and most of them arent worth crap!!!

sorry I didnt mean to rant on and on.

good luck
chrisw >:( >:(

i gave up on doctors years ago. it's too damn expencive. anything other than ch i'll go but in the age of the information highway i'd rather deal with the headaches  on my own.

btw where ya from steve?