Hi,
I have been on vitamin D regimen since may. I thought is was helping but they came back. I am looking for neurologist in the west palm beach FL area that know about CH.
any help would be greatly appreciated.
thanks,
Eric
Eric.Anken@amg.com

I had a doc when I lived in Boca Raton When I get back home I will look up his info for you and post it here Thursday.

Mark.

Thanks Mark

As a group, neurologists have limied education and experience in/with Cluster.
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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.

Sorry for not getting back but I couldn"t find the paper work on that doctor.

Mark.

Hello Eric, I have an amazing Neurologist. He truly cares about his patients with cluster headaches. I can attest to that. His name is Francis Conidi. He has 3 offices; Palm Beach Gardens he is in on Friday, Coral Springs and Port St. Lucie. His practice is called the Florida Center for Headache and Sports Neurology. Phone # (772) 337-7272.
Tell him Ashley sent you. Message me if you have any questions. Francis Conidi, DO - fxneuro.org

If you still need the name of a doctor specializing in treatment of CH's, please PM me and I will send you name and contact info.

-Gregg in Las Vegas

I went by the list that you can get by googling "Recommended Doctor List, Suicide and Crisis Intervention and Family Services (OUCH Committee)."

OUCH helps Cluster Headaches (CH) in particular. I have no doubt my first neurologist was the best in his class at the top university, but I was his first CH patient. If you are tired of getting necessarily drugs and scans, it might be better to go with someone with CH experience. My doctor on that list has seen more than 100 CH patients, and I travel as far as I need to see him. (I do wonder if he is stretching the truth -- there might be a difference between "seen" and "curing".)

That said, he is not perfect. He wrote a prescription for 10 lmin O2, and I am trying to correct that...he says that the GP usually prescribes O2, and his cases tend to be beyond that.

Jordan7815...That list you reference w/ google search is old, w/ very few updates in past several years. If you want better updated list of recommended CH docs, PM me as I did a special project for all 50 states, Canada, & a few miscellaneous countries.

No such thing as cure referring to CH.

Agreed, neurologist or headache specialist or internal medicine...you want somebody with CH knowledge and experience treating CH'ers.

10 lpm is old school o2 education and we've learned not enough flow rate. 15 lpm minimum, 25 lpm to hyperventilate and gain fast abort.

A doctor who "has seen more than 100 CH patients" should be willing to prescribe o2 and not pass the buck to a GP. I feel sorry for those 100+ patients.

PF Wishes  ;)

-Gregg in Las Vegas




jordan7815 wrote on Dec 28^th, 2016 at 9:41am:

I went by the list that you can get by googling "Recommended Doctor List, Suicide and Crisis Intervention and Family Services (OUCH Committee)." OUCH helps Cluster Headaches (CH) in particular. I have no doubt my first neurologist was the best in his class at the top university, but I was his first CH patient. If you are tired of getting necessarily drugs and scans, it might be better to go with someone with CH experience. My doctor on that list has seen more than 100 CH patients, and I travel as far as I need to see him. (I do wonder if he is stretching the truth -- there might be a difference between "seen" and "curing".) That said, he is not perfect. He wrote a prescription for 10 lmin O2, and I am trying to correct that...he says that the GP usually prescribes O2, and his cases tend to be beyond that.

Thank you, I will PM you right away.

I had to fight my family many steps along the way to even see a doctor. The first doctor I saw was walking distance from me, and I was his first CH patient. I had to convince my wife using that list to drive me there, but I admit, I had reservations because I had no idea if the list was any good. He was better than the first doctor for sure, and he spent a good 1 hour with me on a single co-pay. But yes, the O2 is a warning sign.

Please don't misunderstand what I typed. The list is very credible, just not as updated as what I have.

-Gregg in Las Vegas


jordan7815 wrote on Dec 28^th, 2016 at 10:07am:

Thank you, I will PM you right away. I had to fight my family many steps along the way to even see a doctor. The first doctor I saw was walking distance from me, and I was his first CH patient. I had to convince my wife using that list to drive me there, but I admit, I had reservations because I had no idea if the list was any good. He was better than the first doctor for sure, and he spent a good 1 hour with me on a single co-pay. But yes, the O2 is a warning sign.

LasVegas wrote on Dec 28^th, 2016 at 10:11am:

Please don't misunderstand what I typed. The list is very credible, just not as updated as what I have. -Gregg in Las Vegas

Completely agree. I showed the Dr that list, and he knew quite of few of the other doctors, but said one or two have retired. No offense taken. I want a second opinion anyway, and I am at wits-end because that list has only one doctor in my county. I will send you a PM.

Here is your Nassau County and nearby areas list to try Jordan

Seen below are names of doctors, NOT on the list you referenced with your google search.

The following names were each and all recommended from CH sufferers who reside in NY that are members of this website, that were pleased to recommend these doctors familiar with CH treatment. Hope this helps you find somebody in your area of NY that you are comfortable with.

-Gregg in Las Vegas

Bronx
Dr. Brian Grossberg
Montefiore Headache Center

Great Neck-
Dr. Noah Rosen
Cushing Neuroscience Institute

Manhattan-
Dr. Josh Torgovnick

Dr. Bruce Chung
City Care Family Practice

Dr. Lynda Krasenbaum
NY Headache Center

Dr. Michael Heublum

Dr. Susan Broner
Manhattan Headache Clinic

Newburgh-
Dr. John T. Hughes
Cornwall Neurology

Staten Island-
Dr. Steven A. Kullck

Tappan-
Dr. Gregory Taylor
Bon Secours Neurology

Valley Stream-
Dr. Mohammad S. Husain

Westchester-
Dr. Alexander Mauskop
NY Headache Center

Plus all the doctors listed on the outdated list you found with your google search. Good luck!  ;)

-Gregg in Las Vegas

Greg,

Thank you so much for this. I am going to call Dr. Noah Rosen to see if he will take me.

Regards,

Jordan.