My Christmas Day was spent with my O2 tank. I missed the "family" gathering cause I woke up with Mr. Demon and he visited all day (guess he was lonesome).

Anyhow, had a bunch converge on me for the New Year (Mr. D  went away, so it was fun). Had the whole gang out there for dinner and was giving my sister-in-law the tour of the house (she's a PHd and Knows I have "headaches" but in her "organized" world everything has a "solution".). Anyhow we got to my bedroom and she saw the O2 set up and the extra tanks (ok so I'm not real neat - they're everywhere).

She looked "shocked" and asked, "Are you on Oxygen?" I told her it was my pain med. She looked even more confused and repeated, "Pain medicine?" For the first time I got to give her a speil on CH and I THINK I got thru that these are not "Take an aspirin and call me in the morning" headaches. I can't take a pain pill and get better... blah blah blah... These are "suicide" headaches and have to be treated unconventionally. She got real interested in the research. But the thing is -- she finally understood that when I skip a "family" thing - it has a REASON!

The funny thing is, she said what "everyone" says, "but you Look fine". Of course I do -- I'm NOT having a headache right NOW!

I just wish there was some "easy" way to explain this malady so's people could understand, but I guess we'll just keep on trying and they'll just keep on telling us we "look" fine and what's the problem.

Hugs BD

Barb,
My husband was just recently diagnosed, should've been properly diagnosed YEARS ago! He always would tell me in the mornings that he woke with a headache again. I would just think...okay headache, we have all had a headache. He never told me how intense the headaches were so I never thought anything more. Then came the diagnosis and I had never heard of such a thing...cluster headaches, what is that?

So being the curious George that I am, I started digging in and thank God for the Internet, full of information!! BUT the turning point of how I found out how serious his condition is, was when I watched Chuck's UTUBE video when he was getting his hit. I pulled my husband into the den and had him watch with me, I asked "Is this what you go through" and stated "that is exactly what I go through". My heart just broke for him AND the man I was watching on the video!! Tears and more tears!!

These are NOT headaches; headaches don't cause this much pain! I think they need to find a new name for this, something other than HEADACHE!! I believe that is why people, such as your relative, take it so mildly and sluff it off as "everyone gets a headache".

My advise is to have them watch the video and if they don't understand after that, then they are just BLIND!!

I have had our sons, my mother and my brother view the link and now they have the understanding as well! Next on my list is Joe's Dad but I have to wait until he visits us, he does not have a computer. When I have talked to his Dad, he is concerned but says things like, but its a headache...there goes that statement again and again IT IS NOT A HEADACHE...CHANGE THE NAME, PLEASE!!! I must have said that a hundred times just last night when Joe and I were talking!!

Take care and my thoughts and prayers are with you and everyone who suffers!
Monica, Supporter

Chuck,
You are an amazing person to have put yourself in a position to help your fellow sufferers and yourself! I did say when I watched the video, "God Bless him for video taping his attack, or else I would have never know the extent of this disease". Lots of love goes out to you!! My eyes are wide open now!!
Monica

ClusterChuck wrote on Jan 4^th, 2009 at 9:58am:

Monica, I've not seen the video, but I have seen Chuck have one (or several for that matter) first hand and it is an eye opener. The best one he ever did (he wasn't such a camera hog then) was at a wonderful dinner back in Nashville. We were all having such a great time and he wasn't getting his attention, so he just had a CH in the middle of everything.

Now you wanna know how to shake up a restaurant in a hurry. Looking back we all "laugh" about it today. At the time Luke took care of Chuck (called the hotel to for someone to bring his O2) and the rest of us just kept on eating, drinking and visiting (ignoring the old bat). People in the restaurant were ready to throw stones at the rest of us for not "doing something". Svenn (or Charlie) explained to the next table folks what was going on (after they threatened us) and they finally settled down.

You just can't take Chuckles anywhere nice and not show him the proper amount of attention!

All kidding aside - the video will open some eyes and if anyone can watch Chuck having a hit and not be moved - there is something wrong with them. And you're right - the word "headache" does NOT describe what we go thru.

Since I was diagnosed (back in the stone age) we've come a long way in getting the word out, but we're still in the dark as far as people knowing what we have or understanding even a little that what we have is BAD. But at least we have each other now (and that's a BIGGIE - trust me) so we're getting there...

Hugs BD

The beast visited me too on Christmas. I just went and hid in one of my Great Aunt's back rooms. Sorry to hear the bastard visited you too!

I have a bit of the opposite problem with my family. They know how severe this disease is. They know how much I'm hurting. On top of it, they do worry that I might kill myself because of it. I wish if nothing else, I'd kept the suicide headache part to myself. My Aunt is mentally ill, and she is now freaking out that without a car to get me to the ER during as severe hit I might end up killing myself. :/ So for me it's more of a curse... It hurts them so much worse knowing that it breaks ME... Expecially with all that I've been through already... It's tearing them all apart.

I've never really gotten the chance to hide my hits. If someone hears me scream, it's generally something they HAVE to check out. (The docs wouldn't have it any other way, I'm too accident prone.)

So, usually at least once during a severe hit, every household member has to see why I'm screaming. My room is RIGHT by the bathroom.

On top of that, after hurricane Ike hit and we had to evacuate, I was in a house, then a HOTEL full of people. No way to go into any room without someone being there.

The nice thing? All of the kids just assumed that whatever I was doing was normal. It didn't weird them out any. It really doesn't, they just get concerned and want reassurance that it WILL get better. They also wouldn't bother me during one. I'm babysitting on a daily basis for my cousin, and both of the kids, a 1 year old, and a 4 year old, seem to have picked up not to mess with me during it... Now after one, when I go to try to sleep from exhaustion, I'm of course fair game.

So, since I don't like to be touched during hits, my Mom mentioned this to my neurologist... How if someone goes to comfort me I cringe away.

His response was "I wouldn't want to be touched either!"

My pets also have gotten to where they don't mess with me, but the really WEIRD thing? Is one of my dogs will whine if she notices my left eye is shut. Let's say I pass through the room to go get an energy drink... The dog will immidiately start whining, before anyone else has saw that I have a cluster. One of my friends suggested I may be putting off a scent that they're picking up on that warns them not to mess with me.

I had a seizure dog when I had seizures, she was untrained, but would freak out before one, then put her body across mine during one. Dogs being able to smell something like that is nothing new to me. I think in this case though it's just that she notices my left eye closed or me grabbing my head and knows what it means.

Mystina

ETA: Sanna, the energy drinks being medicine, I told that to little Jose. He saw me chugging one during a cluster and asked what it was. I told him it was a drink for big people, but it helped my eye to feel better.

He informed me he did not want to be a big person... XD

I agree about the headaches being not the best word to use. (Un)luckily, most of my family and friends know very well how a migraine feels like, so they relate the attacks to that. It's not the same, but it's same enough for them. And they do get migraines bad enough to incapacitate them. The family from my father's side, on the other hand, has trigeminal neuralgias passing down the line. I don't have that much contact with them, though.

Usually when I try to describe the stuff to new people, I use the words "Horton's neuralgia". They always go like "???" at first but at least don't relate it to normal headaches.

Also, I'm sorry that you guys had to get visited on the holidays too. It's difficult to deal with the pain, but another thing altogether to deal with the social issues caused by CH...

- Best regards and PFDAN,
Rosa