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...

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.   ;D Unless of course they do have it too.
Maz.

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...

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 !)

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.

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  :P )

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..  :-*

I just tell people I have a neurological condition that causes severe pain in my head at frequent intervals. 

Jerry

I've met you Barb and the bluntness of your comments shows that you have very little TAC!

:) Bob.. Maybe I should learn to pronounce the BIG words.. And I love you too -- How's that for TAC.. :-*

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.

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.

"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".

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!".

Now that's funny Tim.. gotta remember that one..  :) :-*

Barb, go rent Blue Collar Comedy Tour Rides Again. You'll love it.