I'm new (and addicted to) this board (hey, got to do something while I'm avoiding sleep and I've watched every movie in my house 4 times now (except Blue Velvet -- Dennis Hopper just hits WAY too close to home)). 

This is probably old hat and been done but I'm curious -- how do you d 8-)escribe your CH to friends/family/co-workers/guy you pass on the street as you're pacing up and down it at 3:30 a.m.?  Obviously, we all know NOT to say "I have a headache" because of the utterly ridiculous things you will hear.  So, I want to hear what you guys say.  Funny, serious, whatever.  Usually I just say "shut up and leave me alone" but I've noticed a dearth of friends in my life and this may be a cause so I'm looking for a new phrase.  I'm not looking for one to engender sympathy, just one that answers the question of why I look like hell during the day following a bad night without a lot of the blah, blah.

We've been debating that one for years and years.. "brain seizure"?

I got hit at a restaurant in San Antonio on the Riverwalk one night and my meds were at the hotel (about 100 miles away - ok about 10 blocks). I guess I looked SO bad and crazy walking back to the hotel that people were actually getting off the sidewalk to avoid me :) but no one asked me what was wrong (good thing). When I got back to the hotel NO ONE would even get in the elevator with me (I really looked like a crazy woman). By the time the people I was with caught up with me - I had taken my meds and had gotten over the pain and was about half normal... They told me I scared the S*&T out of them.

And you just haven't lived till you see Chuckles get hit in the middle of a crowded restaurant in Nashville. The other 10 or so of us just went right on with our rat-killing while he went thru the dance - the rest of the restaurant was in total shock and thought we were a-holes, but ... he got over it and picked up his drink and told a joke and we got on with the night...

There just ain't no explaining to people who don't have these things... EVERYONE has had a headache and they take an aspirin and it goes away - it's just that simple - NOTHING can be as bad as we say it is...

I got hit during an IRS audit and the damn auditor told me "My son has those and he just soaks his feet in hot water - you should do that!" I threw a file at her and told her to go to hell. And later got her butt fired for giving out med. advice.

But I guess what I'm trying to say is - don't really look for understanding - it just ain't there.  :-*

Try throwing this:

It's a vascular disorder affecting the Trigeminal nerve path brought on by a defective hypothalamus.

It sends them scurrying for a dictionary and gets them outta your face. ;)

Joe

[quote author=597A786F6969650A0 link=1330760399/2#2 date=1330784774]Try throwing this:

It's a vascular disorder affecting the Trigeminal nerve path brought on by a defective hypothalamus.

Joe, I'm not sure I could say this mouthful after an all-nighter.  I think it might come out as "vast seminal hippo." Which might be interpeted as I had a really good night. 

Joe, I'm not sure I could say this mouthful after an all-nighter.  I think it might come out as "vast seminal hippo." Which might be interpeted as I had a really good night. 
Back to top    ;D ;D

I don't care who ya are...that thar is funny!!!

Tell 'em to look it up on Youtube. Those who do stay remarkably quiet afterwards.

I normally call it a "cluster attack".  When they want to know what that is I describe it as a neurological attack similar to a brain freeze in which you continue drinking a Slushie as fast as you can for 30 mins or so.  That is the closest thing I can think of that anyone will relate to.  I rarely call it a headache, except with people who know what I have and go through.

Jerry

Kristie wrote on Mar 3^rd, 2012 at 3:29pm:

[quote author=597A786F6969650A0 link=1330760399/2#2 date=1330784774]Try throwing this: It's a vascular disorder affecting the Trigeminal nerve path brought on by a defective hypothalamus. Joe, I'm not sure I could say this mouthful after an all-nighter.  I think it might come out as "vast seminal hippo." Which might be interpeted as I had a really good night.

I love your sense of humor!  That will keep you going. 

jerry

"the doctor said it was just cluster headaches.  thats a relief, because all this time i was rolling around screaming because i thought someone was trying to rip my eye out from the inside"

my dentist was wondering why i had no wear marks on my molars and yet i was still shattering them.  i mentioned the headaches causing me to crack my teeth at times.  he sugested a night guard, i explained cluster headaches.  he pulled out his smart phone and looked it up on the spot.  all he said was "ouch..."

i like my dentist.  he always askes how my headaches have been lately before he does anything, just so he can be ready for me to get hit if im in the chair.

I had forgotten the brain freeze one jerry, I liked that. A brain freeze that just keeps building! :o

Joe

...used to go to great lengths to "explain"...no one got it...how could they?...there is nothing to relate.

Most disappointing was sharing Simon's excruciatingly apt letter...surely that would do it! Nope....never received a single comment after presenting the letter. They didn't know what to say...they didn't get it...still.

...now...I simply say...you know me, you know my personality, you know my attitude...when it is dramatically different.... it's because I'm hurting...and hurting BAD! It's a "headache" pain I cannot describe...and THAT is what it does.

Some still don't get it...and actually don't care...or don't care enough to "try" and understand. Others...it's good enough for them...if Jon says so.... "I don't get it, but I SEE."

It's the best I can do...and I stopped worrying about it years ago. What I do worry about is presenting the real me...sans ch (which is something I have, NOT something I am)...accept me for that..or not, your choice.

Best,

Jon

And that is why we love you Jon!

Somehow, once back from the Chicago conference last September, the subject came up with one of my bosses, so I sent him a link to the footage of Chuck from the Nashville convention.  I knew there were no words I could have uttered that would do justice to our pain. 

He said something like..."He really looks to be in a lot of pain. I'm sure you don't get them that bad." 

"Yes, sometimes I do." 

"well just don't let it happen during work hours.  You'd scare the customers."

I just sat there thinking to myself..."Ya think?!!?!?!?"

I think I'm a lucky one in having a manager who also gets CHs. He of course just gets it.

One of my developers has seen me with a K7. When I explained how that is fairly mild compared to what it can be like he gets it.

But for others, they simply don't have any experience to compare it to to enable them to understand.

Redd wrote on Mar 4^th, 2012 at 3:18pm:

Somehow, once back from the Chicago conference last September, the subject came up with one of my bosses, so I sent him a link to the footage of Chuck from the Nashville convention.  I knew there were no words I could have uttered that would do justice to our pain.  He said something like..."He really looks to be in a lot of pain. I'm sure you don't get them that bad."  "Yes, sometimes I do."  "well just don't let it happen during work hours.  You'd scare the customers." I just sat there thinking to myself..."Ya think?!!?!?!?"

Now that's support for ya! I gotta admit, the thing that's on my mind the most is, gee, what will the neighbors think?

I've huffed O2 in some of the strangest of places, most often a bathroom or a closet, but mostly parked somewhere in my car. And not once, while I've been huffin away, has anyone even asked if I was alright. We must look pretty weird. Blessings. lance

We must look pretty weird

Red, droopy eye, snotty nose, head bent sideways and forward, shoulders hunched.......hmmm...... ;D ;D

Joe