Well here I am, right back where I started.  Im a long-time supporter.  My husband has been a chronic sufferer (2-3 a day) for the last ten years.  He may have had a couple days here or there in the beginning, but he hasnt had any real remission for at least eight years.  We have seen multiple neuros, and he has been on a plethora of meds.  His history is a huge jumbled mess.  Its been an exhausting journey for both of us.  But we're back and ready to fight this thing a little more. 

His current regime is just as much Imitrex as our insurance will allow, along with hot showers & an absurd amount of Redbull.  He has scripts for pills, nasal spray, and injections.  And when those run out, he has a friend who will share their scripts with him.  He also takes Lisinopril for bp.  Out of all the preventatives, anti-anxiety/psychotics, & pain pills, these are the only things that work for him.

We have never tried O2.  This is partially my fault because I wouldnt allow him to have a tank until he quit smoking in bed (please dont judge).  Its also partially due to the fact that none of the neuros we saw would prescribe it.  And once we did get one to prescribe it, she wouldn't prescribe the recommended dose.  Thats about the time we threw our hands up.  HOWEVER, my husband has finally quit smokng in the house, and I am ready to begin the search for a decent cluster doc all over again.      

What do I mean by decent?  I mean a doctor who has actual experience with clusters, not migraine.  One who is open to the idea of prescribing 100% O2, and one who will not even suggest that he come off all his meds and endure a few clusters so they can begin a new experimental drug regime.  There has to be one out there. 

So after my long winded explanation, does anyone have any sugestions?


(After reading the boards today & doing a little research, I will be putting him on 3,000-4,000mg Omega 3 Fish Oil & 10,000 IU D3 - Thanks!) 

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

This is a link to the OUCH recommended doctors, docs others have used that know their stuff. Hope one is near you.

Joe

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. 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.

5. 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.

6. 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.