I'm currently going through the process of being diagnosed with CH my Dr. Is 99% that's what going on. I have dealt with this horrible illness since grade school. However I have always been told that it was was sinus issue or infection. I have noticed the older I get the worst the symptoms become. I have sever nausea with my CHs...this is a painful and awful illness. Although it is nice to be able to have others who understand the pain that we go through.  My family seem to think I could just take Advil ..Tylenol etc and be fine but they have no ideal. So I hope I can learn from you all...

Hello CH30,

Welcome. Hopefully your diagnosis will be complete soon and you can start to treat the problem.

In the meantime, have a good read here about the D3 Regimen. You will find it in the Medications and Treatments section, under the thread "123 days pain free...". There's a lot of reading, but well worth it.

Then Ask questions.

With regard to your family not understanding, the fact is they can't "fully" understand, but to help them get a better handle on what life is like for you, you might ask them to read the following:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It might help.

Keep well and remember, someone is here 24/7 - 365. Plenty of experience to draw on.

Peter.

Hi CH30 and welcome,
It's always best to check in with a Headache Specialist for a proper diagnosis! Doctors and neuros have little experience in this field, in the meantime take the cluster quiz it will help answer some of your ??? the link is to your left on this page.

Hoppy

Your story is all too common around here. The major barriers to getting effective treatment are: most docs have little/no good training in dealtig with complex headache disorders.

And this is a far more complex area of medicine than most folks recognize. There are dozens of disorders which appear to be Cluster but which are not headache disorders.

Need is to find a sharp doc, a headache specialist, if at all possible.
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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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.