Many a year i have suffered in silence, and to the best of my ability i have tried to educate my work mates, but to say i am now fed up with all the feeble comparisons i try to come up with trying to get them to understand the pain that can ensue when the beast is in full flow i took the step of printing loads of info off the web site for them to read.We have 8 people in the warehouse they all got a copy each and to my knowledge only two of them have sat down to read the info, my manager who has yet to pick it up of his desk was talking to me about my CH attacks today and after about 10 minutes he confest to me that he did not need to read it as he gets headacres all the time and all he has to do is lay down in a dark room for an hour and its gone,it was at this point that i resigned myself to the fact that the one person  i needed to understand the most does not give a monkeys,im not sure where to go from here anybody got any suggestions.Im not at the age where i can find a new job and im to young to retire(sadley) so leaving is not an option. I could help him with his headacres but that would be illegal.

Here ya go Frankie.

 
It is known to us as "Simon's Letter"
Simon is a UK CH'er who had the wherewithal to develop this perfect letter.

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Hi Linda
Many thanks for this info,i have allready printed it of and i am planing my next line of attack i wil let youknow how i get on over the next week or two.
Frankie

Good luck Frankie!  Remember to do it one on one. to do otherwise makes you look like a drama queen. ;)  Maybe give two to your boss, one for each eye!   ;D

-P.

Paul98 wrote on Nov 8^th, 2008 at 5:23am:

Good luck Frankie!  Remember to do it one on one. to do otherwise makes you look like a drama queen.

Paul, you KNOW better than that!

I am the Queen around these parts!

LOL

Chuck

What catches your attention more?

I get head aches!      I suffer from a rare Neurological Disorder!

Hi Frankie

Having had to go down the never ending road of explaining my condition to new Supervisors over the past years I have found that there is always that quizzical look from most that says “well doesn’t everyone?”

If I use the phrase “I suffer from a rare Neurological Disorder that affects the hypothalamus at the centre of my brain & one of the symptoms is a condition called Cluster Headaches that causes me severe pain in the effected side of my head.

I usually now have their undivided attention

There will invariably always be the question cant you take a pill to kill the pain?

My answer will always be; I could, once the scientists find out what causes the disorder they will then be able to design a drug that will do that, but until that happens I just have to live with it.

This tact may be too late in your case but may be of use to newcomers in their endeavour to just get on with life.

Cheers
Barry

Luckily I work with good bunch of people.  I made a couple copies of the letter and most everyone read it. (20-25 people).  

Most of them took an interest and had several questions.  Everyday someone asks me how I am doing.

Hope you have similar results.

                                               PFD's On Ya
                                                     JPC

ClusterChuck wrote on Nov 8^th, 2008 at 5:58am:

Paul98 wrote on Nov 8th, 2008 at 5:23am: Good luck Frankie!  Remember to do it one on one. to do otherwise makes you look like a drama queen. Paul, you KNOW better than that! I am the Queen around these parts! LOL Chuck

Sorry Chuckie!  Didn't mean to imply ANYBODY could replace you! :) :-*

-P.

Barry_T_Coles wrote on Nov 10^th, 2008 at 9:53pm:

What catches your attention more? I get head aches!      I suffer from a rare Neurological Disorder! Hi Frankie Having had to go down the never ending road of explaining my condition to new Supervisors over the past years I have found that there is always that quizzical look from most that says “well doesn’t everyone?” If I use the phrase “I suffer from a rare Neurological Disorder that affects the hypothalamus at the centre of my brain & one of the symptoms is a condition called Cluster Headaches that causes me severe pain in the effected side of my head. I usually now have their undivided attention There will invariably always be the question cant you take a pill to kill the pain? My answer will always be; I could, once the scientists find out what causes the disorder they will then be able to design a drug that will do that, but until that happens I just have to live with it. This tact may be too late in your case but may be of use to newcomers in their endeavour to just get on with life. Cheers Barry

Thanks Barry, I just printed this off to have with me. You explained it very well. ;)