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Topic: headache clinics (Read 351 times) |
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Grandma_Dizzie
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headache clinics
« on: Jun 9th, 2006, 1:03am » |
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Does anyone know anything about - or had any experience with the Diamond Headache Clinic? My husband has had cluster headaches for 17 years -and he had been chronic for probably the last 10. Right now he is getting relief from using Verapamil (acutally he has to use the name brand Calan, cause Verapamil quit working) and Depakote - and for that we are grateful. All our friends keep telling us about things they read about, or heard about from others, and the Diamond Headache Clinic came up as a place that "cured" someone.
Any insight or input on this would be gratefully appreciated! Thanks... 
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BarbaraD
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Hugs to ya
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Re: headache clinics
« Reply #1 on: Jun 9th, 2006, 7:25am » |
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So far there is NO cure for CH. Some people outgrow them - some go into remission for a long period (we're always on the lookout for the next one to hit - even in remission).
For a while the Diamond HC was sounding like it was interested in CH, but lately it's been migraines as usual.
One thing some of us old timers here have established is that what works for one don't necessarily work for another. Each of us have to find our "coctail" that works for us. It's trial and error at best. And then when it quits working - we're back to sqaure one.
Glad your hubby has found something to help him. Verap works for a lot of people here.
We've compiled a list of docs (over the years) that have a knowledge of CH -- look on the left for the link. And read everything you can on this site.
Hugs BD
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What don't kill ya, Makes ya stonger!
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Bob_Johnson
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Re: headache clinics
« Reply #2 on: Jun 9th, 2006, 7:41am » |
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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/physicians/ 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.
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Bob Johnson
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Redd
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Re: headache clinics
« Reply #3 on: Jun 9th, 2006, 7:48am » |
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Sufferer recommended Doctors list from O.U.C.H.
http://www.ouch-us.org/chgeneral/doctors.htm
Wishing you the very best of luck in finding a good Doctor in your area. Interview them, and if you aren't comfortable, keep looking. You and your hubby are your own best advocates.
Pegg
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Grandma_Dizzie
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Re: headache clinics
« Reply #4 on: Jun 9th, 2006, 7:31pm » |
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Thanks everyone for the input. We do have a doctor, and he is pretty good. He has worked hard over the years getting my husband on the right "cocktail" - but I was just wondering if anyone had an experience with the Diamond Headache Clinic specifically.
You guys probably all get the same kind of stuff from frirends and family, "I know someone who was cured, or I just read about this new wonderful treatment that cures headaches" - whatever! Someone is trying to convince us that the Diamond Clinic is "THE" place to go, and I figured the best place to check this out is with all of you! Even though I only post once or twice every couple of years, I have used this site as a source of info, comfort, and comic relief, as the wife of a guy who has suffered long and hard with CH - since 1989.
Thanks!
Grandma Dizzie
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Kris_in_SJ
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Re: headache clinics
« Reply #5 on: Jun 9th, 2006, 7:49pm » |
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Hi and Welcome,
You might try a message to Michael "Unsolved" if he doesn't come along. I believe he has experience there.
Best of Luck - and thank you for being such a good supporter.
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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maffumatt
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I went to a specialist and I learned my GP knows more about clusters than they did. Put the word specialist in front of their name and they think they'r God, you know knothing about your condition and your GP is a country bumbkin. I won't waste my money again, I found a Dr. that listens to me, I believe he actualy cares, and to me that is alot.
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LadyC
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Re: headache clinics
« Reply #7 on: Jun 20th, 2006, 4:19pm » |
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I did not have a good experience with the Diamond Headache Clinic. I found them hard to reach, something that is very important when you're taking 10 different medications that are making you sick.
Also, they did prescribe oxygen, but not with a non-rebreather mask, so needless to say it did no good. They did not prescribe imitrex even though it was available at the time. My local family doctor gave it to me for the first time. It is the only thing that works for me.
My insurance company paid them thousands and thousands of dollars and at the end I was treated with sarcasm and disrespect.
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unsolved1
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Yes, I have plenty of expereince with the Diamond Headache Clinic. My doc is Dr. Merle Diamond, but I've met most of the main docs. There standard treatment for trying to bust a cluster cycle is the Histamine Desensitization treatment. It's an 11-day inpatient stay at St. Joseph Hospital. They just went smoke-free and the food stinks ... but they claim pretty good success for stopping or helping a cluster cycles.
I also know the docs at MHNI. I usually see Dr. Todd Rozen. I've also met Dr. Saper and Dr. Rogers among others. They use a different approach but they also have an inpatient program and claims of success.
If you have any specific questions about either ... just ask.
But, if you are having success with the Calan, why mess with it ? imo
Goodluck
UNsolved
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