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        Cluster Headache Help and Support >> Cluster Headache Specific >> Help for a Cluster Sufferer
        
(Message started by: Holly on Mar 16^th, 2008, 11:50pm)

Title: Help for a Cluster Sufferer
Post by Holly on Mar 16^th, 2008, 11:50pm

My best friend has suffered from cluster headaches for the past 15 years. He takes preventative and abortive drugs for them. O2 was not very effective for him unfortunately. When in a bad cycle, his doctor give him Prednisone. This typically helps ends the cycle for two months. ...Sometimes longer...sometimes shorter. This last cycle, he took the prednisone as usual, but ended up in the hospital ICU. They believe he has some type of brain swelling. They have administered a steroid iv which has reduced he swelling and brought him out of the coma like state the swelling caused.
My question is has anyone else had any brain swelling ? He also had a optical neuritis about a year ago, with no known cause or answer. Just a little concerned because he seems to had a few odd neurological issues in this past year and the only thing we know for certain is he suffers from cluster headaches.
Also if anyone can recommend a neurologist in the NY/NJ Metro area?

I truly appreciate any feedback. Thanks!

Title: Re: Help for a Cluster Sufferer
Post by DennisM1045 on Mar 17^th, 2008, 8:33am

Thank you Holly for reaching out for your friend. It is supporters like you that make a huge difference in our lives.

Unfortunately I don't have anything other than a bucket full of good vibes to send out to my cluster cousin. Please tell him I'm pulling for him. Also mention that he really should check in with the family here once he's on his feet again.

-Dennis-

Title: Re: Help for a Cluster Sufferer
Post by Bob_Johnson on Mar 17^th, 2008, 8:43am

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. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; 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.

Title: Re: Help for a Cluster Sufferer
Post by lionsound on Mar 17^th, 2008, 9:53am

I see Dr. Sheftell at the New England Center for Headache in Stamford, CT. He is a headache specialist.
203-968-1799
I do not know if he is taking new patients or not, but maybe you could ask for a referral to a neurologist closer to you.
It sounds to me like your friend needs follow up care soon and that he may need more than one kind of speciality neurologist.

I'm sorry he is hurting.Thank you for supporting and helping him!
may you both be well and Pain free!