dont you hate it when this decease/illness is referred to as a headache out of ignorance to its severity.
to class it as a mere headache is to describe the titanic as a canoe and the pacific ocean as a pool of water.
Migrainous neuralgia.....i dno longer question why me ...my only question is anything unregarding to the condition itself due to the fact that no one really knows much about it other than its title or the pain described by association with the sufferer...
i have given up hope in the sense of my naive way of thinking e.g  i hope i don't get them this year,,,,i hope it wont last long....i hope this is the last one...merely my point is this what will be will be im not suggesting we give up hope on / in life because the fact of the matter is if you suffer from Migrainous neuralgia (c.h) then you realise how wonderful and precious life actually is .
when you go through what we go through those hours,days,weeks,months or if your fortunate years of remission are priceless ...you really do appreciate life more .and if you don't you haven't suffered enough....
i hope everyone is ok and dealing with it the best way they can ....if anyone needs to talk ...im here in the same sense as when i need to talk i hope you are there ...
adam

You've certainly hit the nail on the thumb there, Adam, and surely we appreciate life more as a result of this nightmare. (Live between the hits, live between the hits.)

So many people go day after day, month after month, needing something spectacular just to make them crack a smile. A rock concert, top class exam results, free dinner and drinks or winning the lottery.

For us it's simply a quiet night's sleep, a pain-free day, and all our friends are joining us in the happy dance!

Sure, we're easily pleased, but I'd never try to explain it outside of ch.com.

you got that right Brian....you only become aware of the darkness once you have seen the light ....

We've had various attempts in the past to rename our beastie friend. Calling it a headache does such a disservice to us who suffer, and makes it even harder to explain. My daughter has a genetic disease called Tuberous Sclerosis. Not too long ago the name was changed to Tuberous Sclerosis Complex, because it manifests in so many ways. How do you get a disease name changed? I think we should go for it. blessings. lance

And in an effort to try and laugh between the hits, could we borrow a page from Calvin and Hobbes and call it "Horrendous Trigeminal Kablooie"?

Jeffire wrote on Dec 14^th, 2012 at 10:13am:

And in an effort to try and laugh between the hits, could we borrow a page from Calvin and Hobbes and call it "Horrendous Trigeminal Kablooie"?

Anything Calvin says is okay in my book! ;D

Joe

For me its the mental aspect that comes with these bundles of joy that causes so much havoc in my life. I know that when my cycles are in season, that I WILL be dealing with these damned things daily and sometimes on a multiple basis. I manage to remain pretty strong until after my 5th beast of my cycle and then I find myself having to damn near sedate myself to fall asleep. After getting hit at night, sleep is merely a concept. I struggle and struggle with the fear of my next attack. You guys that manahge to stay strong through your entire cycles are "super-human" in my books. Between the anticipation of my next attack and the growing guilt I feel because of my CH's toll on my family, I find it harder and harder to stay positive during my cycles. My supporters are truely stronger than I am to be seemingly resilient during season. I try my best to remember that these are moderately short in duration(as compared to migraines) by their klp level's are unmatched in that sense, and also I try to remember that you can't die from them either.all of this is very difficult for me to remember when I'm walking the beast. What is everyone's methods to maintain their sanity?

Tim, you make a good point. Many of us with CH, especially after many years or a chronic cycle, become quite adept at hiding our pain and fatigue. In a way, that does us a disservice because an "outsider" looking in may incorrectly assume that CH is not as bad as it is. I've become better at accurately explaining my current pain levels, instead of politely brushing off inquiries with "oh, it's uh, not too bad. I guess."

Of COURSE it's bad. Really bad pain! But now, I just calmly explain that yes, when it's happening, it is literally the worst pain you could experience. But I also reassure them by saying something like "but hey, at least it will be over soon and I'll be a happy guy then. Promise." This seems to let them know the severity of my condition, without overstating it to the point that my listener can't begin to empathize. If that makes sense.

the thing is sometimes i would like those that take c.h lightly ..i would like to posses my buddy at the tip of my finger and when they play c.h down , i could therefore touch there heads and let them play with my buddy for a minute or 2 lol ...no i wouldnt really i wouldnt wish my buddy on my worst enemy ...i written a song that describe the alienistic character of my feelings towards c.h and it is as follows...
My coldest winters are felt in the summer heat.
A hot day in December im exposed tryna catch a breeze.
Cloudless skies still im immersed on dry land.
The ground i walk upon at times like quick sand.
It slowly pervades as my barricades disinclined.
Nothing left to say when its out of sight out of mind.
I stay eager for the fray like an axe to the grind.
Then we split and part ways a new path i must find.

keep calm carry on through our burdened load my friends ...trials and tribulations and indeed we are tested more than most but less than some ...we are here when we need each other ...stay strong