Posted by Yazz on July 06, 1998 at 09:28:23:
In Reply to: Jokes and Prednisone Is There A link And Can We Make $$$ out of it? posted by Laurence, errrrr a.k.a. Laurence on July 06, 1998 at 08:34:11:
Laurence ..aka Laurence ..:)
I've been taking prednisone as an anti inflammatory for the past almost 2 yrs on and off ..and I think that's why my CH was in remission . I stopped taking it back in april or so ..come May 16th BANG !!!!!!..CH on doorstep .
Now ..the purpose of my message is .....
I read on the net that CH is thought to be linked to sleep disorders.
Can we consider sleeping at the wee hours of the morning almost every day .....sleep disorders??
If so .. is this reversible ??
i.e. ..If we try to become good little boys and girls ..by going to bed early ..say ..9 -10 pm ..for months ..in a row ..not drink like fish...and develop a healthy sleeping pattern ..
would that help at all ???...Isn't it better than becoming guinea pricks at the hands of those hack neuros ???...
I'm trying to find answers just like the rest of us .. Unless some serious research is done . w'll never know .
Maybe we don't need the " researchers" to get off their butts and start doing some research of our own for the time being .
It would have to be as organised as possible .
Scientific data , if erroneous , is useless.
But I thought of compiling a collection of information on all the sufferers. Ok hold your horses , I know not many people would be willing to disclose information about themselves for privacy purposes.
On here, the info that is posted is available to every person in this world ( and beyond ) .
But we could arrange it so the information is as least personal as possible .
Social security # are not required :)) ...
Basically a profile of each person .
WE do know that it is a predominently " male " ..." disease " ..prefer to call it " condition " .
But , what else ??..
Maybe we can all try to remember WHEN it first happened ??.. WHAT we were DOING a few nights before or a few MONTHS or YEARS before.
WHAT KIND of Work we are in . NO specifics are required . example . Service sector . etc ...the important factor is WHAT KIND of work conditions.
And so on .
I do not have experience in compiling data . If anyone else on here is accustomed to it .Maybe they can make more suggestions .
This is a thought that I've had for several days now, we have this site and we have each other . WE know the pain is there , we are telling each other what drugs work etc etc ...
So ....any suggestions ??? Or have they already done such a research . and even so .. I doubt they would have access to people from ALL OVER THE WORLD !!!!!!
p.s. Last night I felt the buggers coming back ...it's funny ..but now that I know of all the symptoms prior to an attack ( thanks to you all ) I knew what to do .. ( I'm tapering the damned prednisone ) ..I upped my caffeine intake ... had 4 espressos in about 4 hours ...and I could still sleep ...but the pain was gone ....
I was sitting in a riverfront cafe watching the fireworks ...( and watching those nice babes go by ) ... and as the night was getting cooler ...I could just feel my nose beoming stuffy and eventually nose started running ...
Ran back in the car ...and home I was ...in my "safe " haven .
Have a good day all ...
Yazz