that what you have is migraines so that you dont have to go into a long explaination of what exactly you do have? So it is easier for people to understand? It has gotten so fustrating for me to have to explain everything and when you do the person looks at you as if you are a crazy person. Especially if it is someone you work with. You dont want them to think you are nuts and you will go off your rocker when you are taking care of a patient or something so i just say that i have really bad migraines. I mean how do you explain things to people? i would rather just explain it that way i guess than get fustrated. I already am fustrated because it seems that nobody understands or seems to care anyway. And i guess thats how people are. If it isnt happenening to them they dont want to understand.
Just venting i guess. Thanks for listening.

I haven't told them I have migraines... but when I'm frustrated like that and they assume I have migraines I don't correct them sometimes.

*edited to add I do have migraines too so that throws another wrench into the whole confusion of the explanation.

Bonnie...No.  I would never tell anyone that.  I say I have a rare neurological condition that is excruciating and has no cure.

    Anyone that really cares about you, will ask more and then you can go into an explanation.  The others....aren't worth the effort because they don't give a damn anyway.  If you are looking for something to an explain to an employer though, I can send you something that will explain it to them. 

   Linda

Nope.

well linda, i never thought of putting it that way. Will try putting it into those terms next time. 
And yes if you could send me something for the employer that would be wonderful. Gonna be looking for a new job when i get to Arizona. WHile my supervisor here has been good about things i am a little nervous about starting a new job. Been thinking about if i should be up front about things or just take things as they come and not say anything.

As for other people and their additude about our condition... Even my best friend just doesnt seem to understand or at least i dont think she does. And i think that if a person doesnt feel what we feel they just cant understand i guess. I get fustrated with my husband too. He tries also but his take on it is that it is just a bad headache and trying to get him to understand that it is more that that is a hard thing to do. I want to go after him with a pen and stick it in his eyeball sometimes when i am having a bad episode so he can feel how i feel. But i wouldnt want to inflict such pain on such a wonderful man!!!!

Try this:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I have two copies at all times in my briefcase.

Quote:

The others....aren't worth the effort because they don't give a damn anyway.

Amen
tachead

Thanks Brew. Gonna make some copies too!!!!

Go to Burger King or 7-Eleven or someplace and get your husband a large Slushie.  Tell him to drink it as fast as he can.  When he starts getting a brain freeze tell him to keep drinking until he has the whole thing gone.  That in my experience is about a level of a K4 to a K 5.  That will give him just a taste of it.

For others that you think might listen after you tell them it is a rare neurological condition give them the Slushie analogy. 

Simon's letter is also very helpful for those who are interested.

Jerry

Thanks Jerry! Gonna do that with him and my son!!!

Tell them to google cluster headache. If they don't know how to read, or don't care to read, then you really don't need to worry about what they think. 8-)

I'd just like to add something to Jerry's slushie anaolgy. After he has that brain freeze...tell him the pain isn't going to go away in a few short mins.  It will last anywhere from 1/2 hr. to 3 hours with an average durastion of 1 and a half hrs.  Jerry put it at a KIP 4 or 5.  A KIP 9 or 10...well, lets just say he'll be rolling on the floor begging  you to put him out of his misery.

Here is what I just recently started to do. Some of my closest friends just didnt get it. In montreal the cold tap water can be verrrrry frigid cold. Even in May.

So I start by telling my friends: "who here thinks they're tough? I get headaches for 1-4 hours. You think you can handle 2-3 min? If youre a man you'll take my test!!"

Thats when testosterone kicks in. I get at least one taker. I take him to the shower. I open the lower faucet to full blast. I ask him how long he thinks he can keep his head there. And then I ask him to prove it. The current record holder lasted 20 seconds. (Its like a kip6-7, its pretty painful) Its a human reaction to back away from pain. I make sure to mention that. Then I tell them "what if you couldnt take your head out?? What would you do?? I put my head in there for 2-3 min repetitions for 30 min during my attacks because IT FEELS GOOD compared to the CH!!!! It relieves my pain.

I've gotten my point across like this, but you need realllllly cold water. Of course you cant do this at work either.

VERRRY SATISFYING!!! EARNED ME ALLOT OF RESPECT AND SYMPATHY. I even stuck my head in there during PF time and outlasted them like crazy because CH has made me into a pain warrior. Wussies!!!  ;D

I have thought about telling people it's a migraine; but never have. As Linda said; if you try to explain, and the person cares; they will ask more questions. Otherwise, it's not worth the effort.

My partner has been very supportive and understanding; and has done far more research into cluster headaches than I have!

The OUCH printout has been very useful, I pass it on to my employers, colleagues and friends. Although people can't really grasp the pain; they at least have an idea of what is happening.