Click this link to read a post I like on the clusterheadaches.com message board...

Jaymie

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British Columbia, Canada
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double edged sword. does it bother you?
Apr 13^th, 2014 at 6:49pm

I live in a city of about 80,000 people and since my diagnosis I've encountered over 300 women who "understand what I'm going through" because they get them too. Yet somehow none of the Drs in the ER had ever whitenessed one prior to any of the times I went in and none of the GPs in my Drs office have encountered them before me.
I'm wondering if this is why the local neurologist snapped and yelled at me when I suggested I think it might be cluster headaches?..
Why it took 9 months, a trip to Vancouver, a team of neurologists, a mri, 3CT scans and an e.e.g. week, just for the Drs to say "yes you're having cluster headaches every 12 hours."
The internet world of self-diagnosis is a double edged sword. Without the information I found on the internet I wouldn't have been able to ask the drs to look into it further. Yet so many people read a Wikipedia article and decide they have it on the spot. Without this, people who legitimately have the problem in question wouldn't have to spend months just trying to get drs to consider it as a potential problem without having to eliminate all other possible problems before considering it.
How do you deal with all the "oh hunny, I know exacly how you feel! I get migraines and cluster headaches."?
I just smile and nod but there's got to be something better...

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maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: double edged sword. does it bother you? Reply #1 - Apr 13^th, 2014 at 7:00pm Hi Jaymie Tell them you have trigeminal autonomic cephalgia (the medical term for CH). They won't say they have it too because they won't know what it is. Unless of course they do have it too. Maz.
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Jaymie CH.com Newbie Offline Punk Rock MacGyver, Nerd Ectraordinaire. Posts: 14 British Columbia, Canada Gender:	Re: double edged sword. does it bother you? Reply #2 - Apr 13^th, 2014 at 7:41pm Beautiful. If only it didn't somehow make me the bad guy to not want to respond when everyone asks why a "young person" is packing an o2 tank. Small cities have an odd lack of personal boundaries. Or maybe its a northern thing...
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shortstraw CH.com Junior Offline 02 blows - thankfully Posts: 78 Perth Western Australia Gender:	Re: double edged sword. does it bother you? Reply #3 - Apr 13^th, 2014 at 10:15pm Hi Jaymie Avoid referring to them as "headaches" because everyone has had headaches. CH's are much more than headaches. As Maz said, baffle them with medical terms (plus it makes you sound smart !)
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Mike NZ

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Re: double edged sword. does it bother you?
Reply #4 - Apr 14^th, 2014 at 12:54am

maz wrote on Apr 13^th, 2014 at 7:00pm:

Tell them you have trigeminal autonomic cephalgia (the medical term for CH).

Trigeminal autonomic cephalgia (TAC) is a grouping of headache types that includes CHs along with several other similar types. Included as TACs are cluster headache, paroxysmal hemicrania, SUNCT and hemicrania continua.

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Quote:

1. Trigeminal autonomic cephalgias (TACs) are headaches/facial pains classified together based on:

a suspected common pathophysiology involving the trigeminovascular system, the trigeminoparasympathetic reflex and centres controlling circadian rhythms;

a similar clinical presentation of trigeminal pain, and autonomic activation.

2. There is much overlap in the diagnostic features of individual TACs.

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BarbaraD

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Hugs to ya

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Re: double edged sword. does it bother you?
Reply #5 - Apr 15^th, 2014 at 8:50am

That's wonderful.. I no longer have Cluster Headaches.. I have TAC (can't pronounce the other words). I'm really serious.. This just sounds so much better (or worse depending on how you look at it Tongue

)

But it will stop a lot of "Oh I had one of those one time..."

Maybe if we'd start popping that on a few doctors they'd go "look it up" and get a clue. It's worth a try.. Kiss

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What don't kill ya, Makes ya stronger!

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: double edged sword. does it bother you? Reply #6 - Apr 17^th, 2014 at 7:21pm I just tell people I have a neurological condition that causes severe pain in my head at frequent intervals. Jerry
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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: double edged sword. does it bother you? Reply #7 - Apr 18^th, 2014 at 7:21am I've met you Barb and the bluntness of your comments shows that you have very little TAC!
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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: double edged sword. does it bother you? Reply #8 - Apr 18^th, 2014 at 8:11am Bob.. Maybe I should learn to pronounce the BIG words.. And I love you too -- How's that for TAC..
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Charlotte

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Re: double edged sword. does it bother you?
Reply #9 - Apr 18^th, 2014 at 10:55pm

No, it doesn't bother me that anytime I say I have cluster headaches, people start talking about migraine. I explain it this way, "Cluster headache is to migraine what concentrated frozen orange juice is to orange juice.)

The sad thing is, the last time someone I knew said she went through the same thing I did, when she got it checked out, she had a pituitary tumor. After that was treated and shrunk and she had some wonderful pain free time, she later got a bacterial infection in her brain.

When I went back to visit my old job, she was off at the time but back to work part-time.

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« Last Edit: Apr 18^th, 2014 at 11:00pm by Charlotte »

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dauber

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Re: double edged sword. does it bother you?
Reply #10 - May 20^th, 2014 at 6:44am

Yes I too have experienced similar problems with a cyberchondriac niece and a hypochondriac brother. In both instances I told them to see the help of a neurologist preferably one that specializes in headaches. I know their circumstances well enough to suspect they don't have Ch and that they most likely suffer from "me too" syndrome instead.

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Tim in Texas CH.com Junior Offline I Love CH.com! Posts: 92 Kerrville Texas Gender:	Re: double edged sword. does it bother you? Reply #11 - Jun 8^th, 2014 at 10:29am "Cyberchondriac" Love It! Never heard that term before but I knew right away what it meant. Yeah I get a lot of the "me too" reaponses from people at my old job. Usually followed by "infact I'm having one right now and you see ME at work".
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Tim in Texas

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Re: double edged sword. does it bother you?
Reply #12 - Jun 8^th, 2014 at 10:42am

A quick joke by Jeff Foxworthy on the "me too" ailment.

"My wife and I were watching Dateline one night and they were doing a segment over a disease. I looked over at my wife and she was crying. With a blanket clentched in her hands and pulled to her eyes, she wails out......I have That! I have every one of those symptoms! I turned and looked at her and told her.......YOU DO NOT HAVE TESTICULAR CANCER! You don't even have TESTICULARS!".

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: double edged sword. does it bother you? Reply #13 - Jun 8^th, 2014 at 10:55am Now that's funny Tim.. gotta remember that one..
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Tim in Texas CH.com Junior Offline I Love CH.com! Posts: 92 Kerrville Texas Gender:	Re: double edged sword. does it bother you? Reply #14 - Jun 8^th, 2014 at 11:22am Barb, go rent Blue Collar Comedy Tour Rides Again. You'll love it.
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