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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Hello New to the board

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Hello New to the board (Read 738 times)

dino6130

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Hello New to the board
Jun 25^th, 2013 at 11:45pm

Hi everyone,

I am not chronic and my heart goes out to those of you who are. It has been years since my last episode and I have recently started another. Just a little history...

When I was a young child (I am 40 now) I would get the headaches so my parents took me to the doctor. This was in the late 70's early 80's. All I remember is them sticking wires to my head and monitoring me through different phases. I was diagnosed with epilepsy. I had never had nor have I ever had a seizure. I do not think this was a correct diagnosis. They gave me some medication, not sure what it was, the headaches went away and again no seizure whatsoever. I dismissed the epilepsy. Years went by and the headache returned. I dealt with it. About 5 years ago they were severe enough for me to go to the doctor again. It was behind my left eye as a very searing pain which also caused my eye to water. The neurologist diagnosed it as cluster headaches. He gave me some imitrex, and some sort of steroid. None of those really did much. After about 2-3 weeks the headache subsided.

Last Sunday I woke up to an external pain on the left side of my head above my ear. I knew it was starting again. I was with my new girlfriend and informed her of the disorder. Throughout the day the headaches got more severe. This one is different though. It is not a constant pain, it is more of a quick jolting pain that lasts about 1/2 to 2 seconds and happens about every couple of minutes. The pain has now moved behind my left eye again. In a way I am glad it is not the constant 20-30 minute pain, but at least those weren't as constant as this one. I hope it goes away soon.

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Hoppy

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LAUGHTER IS THE BEST MEDICINE

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Perth WA
Gender: male

Re: Hello New to the board
Reply #1 - Jun 26^th, 2013 at 12:58am

G'day Dino,
Sorry to hear your suffering again.The thing is, with this
disease, you never can tell when the Beast will raise his
ugly head again. I think your best plan of attack would
be to check in with your neuro to make sure nothing else
is wrong. If all ok other than CH's, then check out the
oxygen info on the left of this page, also look into the
Vitamin D3 Regime, also on this site, it's getting good
results in treating CH's.

Hoppy.

« Last Edit: Jun 26^th, 2013 at 1:11am by Hoppy »

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wimsey1

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MA
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Re: Hello New to the board
Reply #2 - Jun 27^th, 2013 at 8:50am

Dino, I know exactly what you're talking about. I call those things "warning jabs." Not sure what they are, truthfully, but I know a full on attack is just around the corner. Could be you're gearing up for a full cycle. Hoppy gave you good advice. Stock up on your weapons (abortives and preventatives), see your neuro, and prepare to go to war if necessary. Blessings. lance

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Bob Johnson

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Re: Hello New to the board
Reply #3 - Jun 27^th, 2013 at 9:39am

Very short, stabbing pain suggests this not Cluster. The failure of the earlier use of imitex and steroid also suggests another disorder.

MOST neurologists lack training & experience with complex headache disorders. Suggest you see if a headache specialist is available.
----
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

; On-line screen to find a physician.

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

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

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.

Bob Johnson

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