Hello,

My name is Joe and I'm a cluserhead. I am 34 and was officially diagnosed with ch last week. I've been suffering with headaches since I was 15 (listed as a migraine sufferer).

My PCP  recently re-evaluated my symptoms and sent me to a new neurologist where my headaches were reclassified.

As a "migraine" patient, I've been through several preventatives such as Topamax, Effexor, Nortyptoline and others I don't remember. As  for abortives I've taken Imatrix, Relpax, and Maxalt. I'm sure there are more in both categories but can't think of them.

I've got a CPAP I wear nightly because a doctor had prescribed it as a preventative for the headaches (no sleep apnea, possibly a misguided shot at increasing airflow instead of O2)?

To further complicate my case, I've had my upper jaw reattached after a nasty break and had brain surgery to treat an unruptured aneurysm. Luckily, I live in Phoenix and had access to Barrow Neuro for the procedure.

I'm not sure what else to add at this point but plan to become an active member on CH.com and the forums.

Wishing the best to all,

Joe

The recurring problem: unskilled docs when it comes to treating orphan disorders. Make the investment:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. 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.

3.  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.

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

5. 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.

6. 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.

Cup O Joe wrote on Oct 22^nd, 2012 at 1:32pm:


This is a pretty powerful pain that makes a person wonder just what the heck was that and what's going on, this certainly is not normal and feels serious.  Going undiagnosed is worrying, getting this identified is a first step for correctly treating it, very true what you said.  I'd imagine in some ways it's a relief in that you can begin to take steps in the right direction now to manage it and not let it have get the opportunity interfere with life, or rankle as little as possible.

As Don has referred to, this site is here for you, it helps, so ask any questions.  The oxygen he mentions is an ace for aborting hits, a good first step. 

I hope what you are using now is helping.  Look around and you'll find what works for others as well as many tips that are off-the-shelf that you can do for yourself.  Our buddy board is clusterbusters, an alternative, which has an excellent record with clusters.  Batch dude has a D3 vitamin preventive regimen that gets results.  There are many other tips like Red Bull and other power drinks that can provide important help for unexpected situations.

Aborting and preventing are the main two applications.  Preventing is not foolproof, so effective abortives are necessary to have.  Check around and just ask. 

Glad to have you aboard and welcome.