Hi!  I am curious of opinions of specialists in Indiana or the surrounding areas.  I am willing to drive out of state:)  I am willing to travel to IL, OH, MI, and KY:)  What has been your experience or do you see one that you feel has been helpful? I have seen a neurologist here, but clusters were definitely not his specialty. Thanks!

Hey Matilda,

Sorry to hear your BF is still having problems.  I've read your earlier post.  The anti-inflammatory regimen with 10,000 IU/day vitamin D3 works well with verapamil. 

If this vitamin D3 regimen is not resulting in a significant reduction in the frequency, severity and duration of your BF's CH, there's likely a comorbid condition interfering with the vitamin D3 preventative effect.

I and several other CHers have tried taking Benadryl (Diphenhydramine HCL) and found it jump started the anti-inflammatory regimen well enough to get us back to a pain free state.  I take a 25 mg of Benadryl in the morning with breakfast and anoter 25 mg tablet with the evening meal.  Tell you BF not to drive while taking Benadryl, it will make him drowsy.  If he needs to drive during the day, taking 50 mg with the evening meal is just as effective

If taking 25 mg Benadryl twice a day doesn't stop my CH, I titrate the dose up to 50 mg in the morning, 25 mg with lunch and 50 mg in the evening.  I also increase the vitamin D3 dose to 50,000 IU/day for a few days then drop back to the 10,000 IU/day maintenance dose.

Regarding a good headache physician...  Someone will come along with a good suggestion for a neurologist in your area.  If not, the Michigan Headache & Neurological Institute (MHNI) in Ann Arbor, MI has a staff of neurologists who are experts in treating cluster headache. 

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Take care and please keep us posted.

V/R, Batch

Glad that you are seeking a good headache doc. Most Neuros have meager training with headache. This issue is compounded by the fact that there are a multitude of disorders which mimic Cluster but are not headache disorders. Only a sharp doc appreciates this and treats accordingly.
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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.

...one month later feels like eternity when battling the beast, better late than never...have you found knowledgeable doctors in your area?

If you still need recommendations, please PM me and will provide you names/contact info of several recommended doctors from your area.

PF Wishes ;)

-Gregg in Las Vegas

Hi. Sending this via PM and also publicly on the thread you started on the message board as backup to ensure you get this info.

Sorry to read the Beast has gotten a hold of you. It will get easier, keep that in mind. the more knowledge you have, the easier you will cope. Family and friends will not understand, just ask they are supportive. I've been suffering since age 11 as an episodic sufferer and am now 48 yrs old, and consider myself an expert patient as I have learned over the years trial and error and have gained all my knowledge from this website since joining in 1999. By no means do I know everything, but I have enough knowledge that I can confidently share this advice to follow...

Good to read you have been intact with Batch who is a personal friend of mine that I have met several times in person and trust his vitamin regimen as do hundreds of other CH sufferers.

You mention Topomax and reluctance to try. Topomox is a good preventative med when prescribed accordingly that works for some that swear by it moreso than other Preventative treatments such as the most common, Verpapamil. Be aware of side effects as you may not think clearly all the time.

Prednisone taper is a great short cut to relief but often when discontinued comes back with a vengeance. Is it worth it to take Pred? to each their own? Risk vs Reward!

Verapamil at high doses, the high doses that often require an EKG above 480mg daily, is something that has reported to work for most reducing the frequency of attacks and intensity of each attack.

O2 with a NON-rebreather mask at flow rates of at least 25 lpm hyperventilating the o2 is the best, safest, least expensive abort. tough to carry around 02 all day but people do it with smaller containers. I recommend a mumbo jumbo bottle to keep at home to avoid less hassle of refills at welder supply store. If no prescription available, do what I and many others do is buy welders o2, just don't tell them it's fro breathing. It is safe and the same exact 2 they weld buildings. If it was not safe those building would be crashing to the ground.

The NON rebreather mask can be obtained from the CH.com store (tab left side of your screen and have it shipped next day) and the regulator can be purchased at a place like Harbor Freight Tools. O2 bottle, bigger the better, can be purchased at most welder supply stores. You probably have been advised on all this, but there's some ammo for thought.

As for doctors in Indiana...I am originally from MI and lived downtown Chgo my college years, and recently visited Indianapolis to have lunch at Aristocrat, and of course I admire VP Mike Pence, so I have a heart here for you that I normally would not take the time...

...about 3 years ago I compiled a nationwide extensive research study contacting every CH sufferer on this website, about 8,000 or 9,000 emails....asking those afflicted by CH's if they have a doctor near where they live if they could recommend...the following are doctors in the Indiana area you may consider contacting, all of them were recommended from CH sufferers from this website, the location where they last were known to have worked,,,,keep in mind some may have retired, moved locations, etc but this is as good as it gets...feel free to keep in contact, I am willing and able to help.

-Gregg in Las Vegas

Indiana-
Evansville - Dr. Roderick Warren/St. Mary's Hospital

Indy- Dr. Robert Alonso/IU Health Physicians Neurology

Jeffersonville - Dr. Michael G. Cassaro

Merrillville - Dr. Kathryn A Hanlon/Northern Indiana Neurological

Merrillville - Dr. Larry Salberg/Northern Indiana Neurological

Munster - Dr. Sanjeen Maniar

New Albany - Dr. Joseph F. Seipel

END OF MY INDIANA LIST
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Depending which way you ant to travel from Indiana, I have doctors I can recommend from the same research study located in nearby states of Illinois Michigan, Kentucky, Ohio, and W. Virginia.

For starters, go get O2, and stock up on some Red Bull energy drinks and slam on as fast as possible at onset of attack, it has been known to help abort, certainly relieve intensity. 

Don't be shy to ask questions. Absolutely no shame. We all here on this site understand what you are going through. You may feel alone, and me be alone at the moment within your home, but you have an army of sufferers that are very willing to help you get through this and become knowledgeable to deal with this. I do not check the message boards more than every couple months as I have not been in cycle in many years, but if you PM, which you did, I will get it via email and can usually respond within a day or so. Hang in there. This will get easier. ;)

-Gregg in Las Vegas