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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> advice?
        
(Message started by: retrosniffles on Oct 2^nd, 2007, 12:13pm)

Title: advice?
Post by retrosniffles on Oct 2^nd, 2007, 12:13pm

Hi, my name is Sean.
I have had these things for 5 years, always diagnosed as sinus problems. I found this site after reading about clusters on wikipedia and furthur searching. (yay!) I have tried things like sinus buster, but i might as well eat a ball of wasabi (which i also tried). It was like having a stomach ache and getting my toe stomped on as a cure. I tried kudzu and that did dampen them a bit but still hurts. Other homeopathic remedies didn't fair too well either.
Now, for my questions. How do you talk to a doctor so he will believe that this isn't sinus or something else? What kind of doctor should I talk too to get oxygen or something that might work?

Thanks. I'm glad to find people that know what it's like. Most people tell me that i can't be feeling too bad or think I just have a low pain tolerance. I beg to differ.

Title: Re: advice?
Post by seasonalboomer on Oct 2^nd, 2007, 12:19pm

Get a referral to a nuerologist who is familiar with other Cluster Headache patients - that way you can rule out potential other issues. Then the neuro should be able to get you a prescription for Imitrex and Oxygen and an appropriate preventive.

Most GP's aren't familiar enough and unless you have a great relationship with your GP they imply won't go off your word, from internet research to prescribe for you.

Good luck!

Scott

Title: Re: advice?
Post by Sometimes on Oct 2^nd, 2007, 12:20pm

Hello Sean,

Here is a good site to start out with: http://www.ouch-us.org/chinfo1.htm

On there is also a list of sufferer recommended doctors listed by state AND a colleges letter to help explain just what it is you are going through. Read through it and it just might help to give it to your doctor to help them understand.

A gp (general practioner) or neuro can prescribe oxygen, it's just getting a good one who's willing to be open minded. :-/

Take care!

Title: Re: advice?
Post by retrosniffles on Oct 2^nd, 2007, 12:27pm

Hey, thanks. I guess I can stop going to those ear, nose, throat docs.
One more question, how much does oxygen usually run? I have insurance but if it's not covered, is it really expensive?

Thanks again.

I think I'm only episodic for a month or two a year. I just started getting these again yesterday. I don't know how some of the chronic people can handle this year round.

Title: Re: advice?
Post by seasonalboomer on Oct 2^nd, 2007, 12:39pm

If you can get an ear eye nose guy to buy into the CH diagnosis you can see if they'll go laong and prescribe. Print off the stuff from the site and take it to them and maybe they'll help you out.

As for O2 costs -- I'm episodic two times a year. I keep tanks year round and I think it runs me aroud $50/month and it includes my refills. They don't run through my insurance - I just pay for them.

Chonics, form what I understand, get through them just like you and me -- one hit at a time and live between the hits.

Scott

Title: Re: advice?
Post by Bob_Johnson on Oct 3^rd, 2007, 8:21am

A useful screening tool when you see a doc: Share this article with him and if you get get some recognition of the meds and agreement on their value with CH you may have found someone to work with.

http://www.plainboard.com/ch/chtherapy.pdf

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)