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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › brand new & glad to have found you!

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brand new & glad to have found you! (Read 1409 times)

jetset363

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southeast wisconsin
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brand new & glad to have found you!
Jul 8^th, 2008 at 2:21pm

where to begin~I was diagnosed with migraines 4 years ago, but that was only after a year of mis-diagnosing and constant pain. Before they would give me any meds I unfortuantely over-medicated myself with OTC pills and did some damage to my liver and kidneys, thanks doc! After being a guine (can't spell) pig they finally put me on Innopran or Inderal and Naproxen. Also sent me to a neuro who was a quack, but the only one in town, who wanted me to learn relaxation, you tell anyone with a headache that bad to learn how to breath and sit quietly! Those meds worked for a couple of years and I took myself off of the meds and was pain free for about a year, and then bam, this February it hit me like a semi. Went back to the dr. they put me back on the 2 meds, which didn't work, so finally after 5 months of intense pain everyday, I went to my mother's dr. who said right off the bat, your not suffering from migraines, you have chronic cluster headaches, and when I read up on them, it is me all the way. She put me on a vitamin regimen, which I think works, and anti-anxiety, from the years of pain, and an anti-depressant, also from the years of pain, and fiornal or fiorcet. She gave me one month of that, and like a miracle, after maybe 7 days of taking it, my pain was gone, amazing and a miracle! She told me I could take up to 6 a day but was only taking 3 a day. Went back to her for a foolow up today and she will not give me anymore, says their addicting and that I now must try a head ache clinic, but in the meantime to continue to take my vitamins and to be prepared because the next 2 weeks will be heck for me! Any thoughts or suggestions would be so appreciated, I'm at my wits end, and ready to lose both my jobs, which I need because I have no health insurance! Please help me.......

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Bob Johnson

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Kennett Square, PA (USA)
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Re: brand new & glad to have found you!
Reply #1 - Jul 8^th, 2008 at 2:44pm

You still don't have an effective doctor! The meds you are using are not appropriate for Cluster headache. To find a good doc:

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Look for "Physician Finder" search box. 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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Look at the list of meds on these two sites and read some of the articles on the Mich. site. Just want you to see what kind of meds are used for CH--but you still need a good doc to diagnosis and treat.

The articles will give good basic information.
------------------------------

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

« Last Edit: Jul 8^th, 2008 at 2:46pm by Bob Johnson »

Bob Johnson

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gizmo CH.com Hall of Famer Offline Posts: 522 Germany Gender:	Re: brand new & glad to have found you! Reply #2 - Jul 8^th, 2008 at 2:49pm Until you found a knowledgeable doc try energy drinks at the first sign of an attack. Ice and cold or hot showers work for some too.
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thebbz Ex Member	Re: brand new & glad to have found you! Reply #3 - Jul 8^th, 2008 at 4:38pm Do check out the links Bob give you. Try 02 if you can. The energy drink trick and work for you, use it in the daytime save the other for night time. Melatonin can work for the night time hits as well. Its over the counter and can help. all the best and dont get discouraged thebb
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Guiseppi

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San Diego to Florida 05-16-2011

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SAN DIEGO, CALIFORNIA USA
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Re: brand new & glad to have found you!
Reply #4 - Jul 8^th, 2008 at 7:43pm

At least they recognized CH, that's a start. But Bob is right, you need a somewhat...well okay a LOT more knowledgeable doc then what you have now. They gave me fiorinal 30 years ago, it did help a little but believe me, the long term effects are worse then the otc meds that have already messed you up. There are FAR better treatments out there if we can just get you to a knowledgeable doc.

As far as the supplements, what were they? Since getting put on a daily regimen of vitamin B-2 and Magnesium, I've had a substantial decrease in number and intensity of attacks. Can't swear that's what caused the relief but I'm still sticking with it. Good luck keep pluggingaway at finding a decent doc, it's so worth the effort.

Guiseppi

"Somebody had to say it" is usually a piss poor excuse to be mean.

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