Callico wrote on Dec 10^th, 2009 at 8:32pm:



Jerry...my deep admiration for you (and Chuck, Tony and others), while never in doubt, is confirmed. I can count on ONE hand the number of people who have seen me hit...not one of them by choice.

During a bad hit I feel so weak, and helpless, and vulnerable, and yet cognizant of the helpless feeling the viewer must have....that I cannot bear to even contemplate "being witnessed".

What you did makes so much sense to me I cannot argue it....and still, I don't have the guts to do it.

Best,

Jon

I had friend that was getting upset that I wasn't doing things with her  right now.  I took the advice of everyone here and asked her to watch the video of an attack.  That was enough for her.  She now understands, better, my not wanting to be around people for fear of getting hit.

PF wishes to all,

Jeannie

Funny thing is that a close friend saw a video of Chuck getting hit on the National Geo special and asked if he was acting.  The friend suggested the pain seemed almost too intense to be real.  Since I have witnessed Chuck getting hit live in person, I could reassure my friend that it was indeed that real.

I don't often feel misunderstood but rarely ever UNDERSTOOD.  Except around other CHers!

I think its a great idea to rename this syndrome " hypothallmic trigeminal exruciation disorder

Hmmm......you may have something there!!

Joe

We all deal with CH in our own way. Those of us who are chronic seem to take a different attitude toward it.

Me, I live each hour and make wise cracks. It hurts too bad to cry. And NO, I really don't like to be around people when I'm getting hit, but if it happens I don't apologize or even try to explain - I have an illness that I can't help and to hell with what they think (ok so it's taken years to build up to that point of not caring).

Yesterday I was at LAX in the middle of a crowd and got hit (oh I was alone). Not a real good place to get hit, but.... I got to to the ticket counter and requested a wheel chair (I couldn't see too well). The ticket agent looked at me and asked if I was ok - I know I gave her a really strange look and politely asked, "Do I look ok?" I got the wheel chair, go thru security with little hassel and got to my gate (I'd popped my cafergot and it was kicking in by then). THere was a Starbucks by the gate and I got some nice coffee down me and for once no one tried to talk to me. I was almost normal by the time they called my flight.

What I'm getting at is WE ARE SURVIVORS and can do about what we need to do and we (over the years) build up a tolerance to what other people think. When you're new to CH, there's a tendency to feel a shame (for some reason), but over the years that goes away (or it seems to for chronics).

I think it's kinda like the 5 stages of grief... denial....thru acceptance. Once you reach the acceptance stage - then it just doesn't matter what anyone thinks anymore.

At least that's how it's worked for me. But then again, we're all different.

Hugs BD

saxman wrote on Jan 7^th, 2010 at 1:29am:




Yep, everyone knows you as this can't be arsed by anything kinda guy, you're strong and young and can't be stopped by anything. The world is yours and you know it, and everyone else does as well.
However, suddenly two years have passed without you EVER being sick, and suddenly the world comes crashing down on you like a ton of bricks. How to explain that? How to make people understand you will not be able to function somewhere between 7 to 9 weeks? How?

Yep I'm frustrated, can you tell? As an episodic we crush everything, untill we are being hit. How stupid is that, in your collegues eyes. Nothing's ever wrong with the guy, he is a waltz. Suddenly, nothing of him for two months????



Yeah, explain that. And the term Clusterheadache (headache) won't do.

As Barbara said we all have to deal with our CH in our own way. So far I remain eposodic although I never know how long or when the cycles will appear.  I too am fortunate that I don't feel misunderstood but I must say except for my dear loving wife and two adult sons no one has actually seen me with a 8-9kip hit.  At work I have been fortunate to catch the hits early before they kip up and abort with O2.  When in high cycle such as now I really can't be out much socially because I am going to get hit often and don't want to run the risk of putting other people in an uncomfortable situation, because if I do get the high kip sometimes as hard as I try I do get a bit weird so I follow what I believe is the path of least resistance for all and just avoid the situation and mostly stay at home except for work and Church.  I have tried going to diner and movies, but all to no avail as I have gotten hit as I am not on a schedule of when the hits will come.  I don't want to use the triptans, although zomig does work for me so I just follow this path.  We do have friends over and if the beast visits then I can ease back to my bedroom and hit the O2 and hope he will stay away for while.  I don't try to explain much to other people because how could they possibly understand?  It is similar to Kohlberg's Stages of Moral Development in that he says there are 6 Stages of Moral Development and if you are at say level 2 you cannot comprehend anything at a higher level. Therefore someone that is not a Clusterhead cannot possibly comprehend what we experience, regardless or how we describe our pain etc. as they are not capable of understanding, it is not that they do not want to they just are not capable of understanding all they can equate it to is something they themselves have experienced which is why so many people will say "yeah I know what you are going though I used to have migraines" or "yeah I used to or yeah I have real bad sinus headaches".  To them those are really bad and they are trying to empathize with us, but many or most of us have had those and that pain does not scratch the surface to CH so it just ires us to no end.  So in the end it really is just better, in my opinion, except for those really close to you not to even attempt to explain the pain other than the print out available on this site.  On well that is my $.50 on the subject and I wish all as many PF days and the beast will allow.