Hi and Welcome

Yes, we really do understand CH as we either get it ourselves or support someone with it.

Doctor problems seems to be something that affect most of us as CH knowledge is a rare thing even amongst too many neurologists. Where are you in the world? There may be someone who can suggest a good doctor or two for you.

You said you've tried "everything". It's possible that what didn't work once will now work, possibly using a higher dose or just due to the way that CH seems to change over time.

For oxygen, how were you using it? There is a load on info on the oxygen link on the left. Using a high flow rate makes a huge difference. For some people who don't get results at say 10lpm get amazing results at 25lpm and the right mask (non-rebreather) is important too.

Also have a look at the topic - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or - where people have been getting great results from vitamin D3.

And keep reading like mad. You'll find so much here from our collected experiences of dealing with CH.

If you are planning to stay here, please:

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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Your experience reinforces to much of what we know: must have a doc with knowledge/skill dealing with complex headache disorders. So,

LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Print the PDF file, below, both for your info and as a tool to use with ANY doc you see  to discuss treatment options.
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Until lyou get set with a good doc, suggest you avoid the temptation to try a variety of treatments for jumping about will only confound any doc's efforts to get an effective treatment package into operation. I.E., you need a good leader.

Patience is the single best survival skill as you enter into this phase of getting a doc and working thru options.

As Joe pointed out, some of us (I'm one) required a combination of verapamil and lithium. And as Mike pointed out, at much higher doses than the label calls for. The O2 is something you really must explore. My first round of it was with a nasal canula at 10lpm...useless. It wasn't until I found here the proper flow and equipment that I discovered how effective high flow O2 can be. There are a lot of myths out there in the medical community concerning O2 but they are just that, myths. We've also found coupling O2 with a full bottle of energy drink (Red Bull, Monster, Rock Star) can make a huge difference in the O2's already effectiveness. Read on, and ask questions. God bless. lance