Quote:


maybe he said coke and really meant pepsi

It's not the dumbest thing anyone ever said to me, but it was a thread on these boards, years ago:

Topic was something about how do you cope, what do you do, where do you go, during a hit.  A response was, and I paraphrase,

I mentally go to the beach, where I sit in the hot sun wearing a string bikini, that I really can no longer fit in.  I just close my eyes and take in the heat.

That response received tons of replys, most of which were not very nice. The poster was called a troll.  The poster was called a Meegrainer, and the poster was so denigrated that he/she left the boards in humiiation.

I was that poster.  I posted that back in the summer of 1999 on these boards, prior to having a confirmed diagnosis.  I posted this during the first ever in my life Ch cycle.  I was uninformed, and very naive.  I asked stupid questions, and posted stupid posts.

With a firm diagnosis under my belt, I came back two years later  and two cycles later.  Now, I always give any newbie the benefit of the doubt no matter how uninformed or naive his post may be.

As to my responses now to people's comments,  I just say that I have a malformed hypothalmus that causes the constriction of the blood vessels in my brain.  The only things that can help alleviate the pain are vasoconstrictors, which dilate the blood vessels, etc, etc.

Once you hit the word hypothalmus, then go to vasoconstrictor, they quit listning.

Sandy

You know I don't get comments of 'I've had one of those too'. But I think it's because we mention my other problems first, then clusters later on.

When you tell people all of the other crap you have first that IS life threatening, they don't make comments like that too often. They end up not wanting to say they might have anything remotely like what you have, because the thought freaks them out too bad.

Generally if I tell someone the pain is so bad that it makes me suicidal during the worst parts, they also don't want to think about it. Like I said, it's way too scary to think about something that painful.

Told to me by a "chiropractor"..."your headaches are caused by a past-life experience.  You were defending your home-during the Civil War, and were struck and killed by a blow to the right side of your face."

And how did he know this? I asked. 
His angel-perched in the corner of his room-told him.  I saw no angel, and although I do believe in a spiritual plane not ordinarily visible to us, this was more the ramblings of a quack.

He charged me $50.

Gotta admit-I've gotten alot of milegae on this story though.

"As to my responses now to people's comments,  I just say that I have a malformed hypothalmus that causes the constriction of the blood vessels in my brain.  The only things that can help alleviate the pain are vasoconstrictors, which dilate the blood vessels, etc, etc.
"

Just so you know, it's the other way around; your blodvessels dilates and causes pressure on your trigeminal nerve. Vasoconstrictors helps constrict the vessels back to normal again, taking the pressure off the trigeminal nerve.

Kind of makes you want to stomp on their toes until they cry for ya don't it Chris!

Rolo..

ninja mom wrote on Nov 24^th, 2008 at 2:11am:




LOL!  OMG!  I am totally going to go all Phoebe (from Friends) on the next condescending response to clusters and tell them that my headaches are caused by my past life!  The stupified response will be worth it!

BWAHAHAHAHAAAAAA KATHERINE!!!11!!!1!!  Oh, boy howdy, I can't WAIT until my boyfriend gets diarrhea!!!!    Because yes, after being very supportive for so long, he went and said it- "Have you tried meditation?"     I said, you try and meditate while I kick you in da nuts!!!

And my mom just won't get it....yesterday she gives me this epic speech about how I drink too much caffeine...I say, mom, they are PRESCRIBING ME CAFFEINE!!!!   

Just Plain Carl wrote on Oct 8^th, 2008 at 4:57am:


LOL yes!  I had that response too.  And also "Wow those sound awful- well, if you feel them coming you can take a shot of something hard right?" 

DONT YOU THINK I WOULD HAVE TRIED THAT, GIVEN THE DESCRIPTION OF PAIN YOU JUST HEARD!?!?!

I once had to see a locum GP instead of my own doc to ask for a repeat prescription for O2. He stated to me that
"there is no medical evidence that O2 can treat the pain you say you are in"
I ended up in such a state that I couldn't speak!  My own GP was told the basics of what had happened and he sent a taxi to fetch me to him, he apologised and said that i was never to see another doctor again (what a SAINT) My O2 is now supplied without prescription direct from the gas supplier.
I don't know what happened to the locum doc...

Izzy wrote on Oct 13^th, 2008 at 2:52am:


LOL.. I had something similar happen to me... I used to work in ministry and went into this "healing" prayer session at church and a woman who didn't know me told me that God told her that the reason I have headaches is because I allow the demon who causes them to stay in me. She then followed that up with a bunch of pseudo-spiritual babble taken out of context from the back of our senior pastor's most recent book. She didn't know that I had recently been on staff at his publishing company.  I told her she was wrong, she asked if my head hurt any more. Well, not at that minute it didn't but that's not the way it works!  She took it as proof that she was miss super-divine with a direct path to God.

When I later questioned that and the increasing amount of politics the church was involved in I was accused of losing my faith. I stopped going to that church.

Which is why you gotta try and get to a meet and greet. Imagine meeting 30 of us!!! It's a mind blower. Good job on spreading the word!

Joe