Click this link to read a post I like on the clusterheadaches.com message board...

Lenny

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why do we
Oct 13^th, 2012 at 10:40am

For myself...every time that i hear of someone referring to our condition as a "headache" it bothers me...that's why i stopped trying to explain or discuss my condition with anyone the past couple of decades or so...now i often see of suffers posting of their "headaches"...i call them ATTACKS...i guess i'm getting worked up for tonight...i will be going to a surprise party tonight and there will be many asking me about my "headache" and of course giving me advice of how they deal with theirs Angry

...i sure wish the medical community would change the name of our disorder...

i like the name "Brain Seizure Syndrome" b.s.s. for short

...bet you ll never hear of someone telling you that they get those and this it what they do for theirs...as long as we have the name "headache" it will always thrown in there as a headache...now if you really care about this country and where we are heading,please don't forget to vote for this name change next month Grin

...

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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead

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Kevin_M

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Re: why do we
Reply #1 - Oct 13^th, 2012 at 7:26pm

Quote:

i like the name "Brain Seizure Syndrome"

Social advice: Get some oil in your diet, your idiot light's probably been on. Ever try natural fish oil?

Quote:

vote for this name change next month

International candidates:

Irish: Me Head O'F%ck.
French: My Head she's la boombala
Canadian: My Head's not polite ey
Chinese: My Head's under Buddha's butt.
German: Mine Head das fukenachen
English: Me bloomin' 'ead's effen full monty arse over elbow

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Charlie CH.com Alumnus Offline Happy to be here Posts: 18971 Jamestown, NY Gender:	Re: why do we Reply #2 - Oct 13^th, 2012 at 7:41pm Like Kev.....good stuff by the way..... "Brain Seizure Syndrome" ain't easy for someone like me. Come to think of it, even epileptics screw around with this stuff but they usually go the other way. It hasn't been very helpful in any event. Charlie
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Lenny

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Re: why do we
Reply #3 - Oct 13^th, 2012 at 9:00pm

Kevin_M wrote on Oct 13^th, 2012 at 7:26pm:

Quote:

i like the name "Brain Seizure Syndrome"

Social advice: Get some oil in your diet, your idiot light's probably been on. Ever try natural fish oil?

Quote:

vote for this name change next month

International candidates:

Irish: Me Head O'F%ck.
French: My Head she's la boombala
Canadian: My Head's not polite ey
Chinese: My Head's under Buddha's butt.
German: Mine Head das fukenachen
English: Me bloomin' 'ead's effen full monty arse over elbow

Just to clarify,that i had no idea that there is a condition with this name Embarrassed

:-[ i do apologize to anyone who might have a loved one with this condition..something that came to my mind (as i was typing)...whats with the hostility there...after all the tigers won...no need to play tough guy and insult...thanks for the social advice,i'll try to use it this evening

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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead

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Kevin_M

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Re: why do we
Reply #4 - Oct 13^th, 2012 at 9:47pm

Quote:

i will be going to a surprise party tonight and there will be many asking me about my "headache" and of course giving me advice of how they deal with theirs

I was only making up some useless social advice we usually get for clusters. Some of it being dumbeth as Charlie would say, but nothing directed from me to you.

I never thought of actual seizures until Charlie posted, I thought of an engine seizing up with no oil, like...

Quote:

something that came to my mind (as i was typing)...

The other candidates for clusters was me just carrying on, and on, and on.

Yeah, the headache name has kind of stuck. It's the ache part that's understated. We identify with the intense pain that's referred to as a head-ache. No, I don't use ache to describe it, either.

Quote:

the tigers won...

Was hoping Baltimore would be next, our old arch enemy of the 60's during the Earl Weaver coaching days. Wink

Next domestic candidate:

Yankee: My head's going, going, it's gone, outa here.

edit: the Tigers make it a successful hunt and prowl another night in NY. If you can make it there, you can eat anywhere...

No insult intended, Len, I just liked your post.

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« Last Edit: Oct 14^th, 2012 at 7:55am by Kevin_M »

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Charlie

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Re: why do we
Reply #5 - Oct 14^th, 2012 at 1:04pm

I may be clumsy but I try not to be nasty. Sorry if I sounded that way.

I'm just upset at weaker new descriptions for types of epileptic seizures. Somehow "Complex Partial Seizures" sounds strange to me. Too complex. Somehow "Tonic Clonic" doesn't hit home as hard as "Grand Mal."

I know it doesn't belong here but it's a gripe of mine.

I hope this doesn't happen to CH is all.

Charlie

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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: why do we Reply #6 - Oct 14^th, 2012 at 4:28pm Vig used to call it "Pain Seizures" ....I always thought that fit better than anything...
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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: why do we Reply #7 - Oct 18^th, 2012 at 2:28am Personally, I have Cephelagia of the Right Temporal Region of the Head. Either that or I just call it Chronic CH attacks. I rarely use the work Headache when discussing it with people. JErry
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Beth E

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Re: why do we
Reply #8 - Oct 18^th, 2012 at 5:23pm

We cringe when people ask about the "headaches" too. We get lots of advise, and people telling us the best home remedies and such. We have tried many of them especially at the beginning when a sure diagnosis hadn't happened yet. I mean, even putting banana peelings on the forehead and temples on the bared skinned areas. We were desperate! I have even corrected Drs. out loud when they ask my husband, "so you have a headache huh?" My immediate reply is: "He has a Cluster attack" sometimes I use "hit". I tell friends, have you ever just been doing whatever, only to be suddenly hit on the side of the head by a baseball bat by a major leaguer? Yep...that's how ya know one is coming! (Don't ignore the little voices saying "batter, batter, swing batter, batter!")

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Callico

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Re: why do we
Reply #9 - Oct 18^th, 2012 at 6:13pm

I know we all try to avoid being seen getting hit, and I do so as well as much as possible. However, I have been observed a few times by some friends who "got it" afterward. They should have seen me with a K8 instead of only a K7! Since having been seen a couple of times I have found myself much less likely to hide unless it is getting way up there on the meter. It has been a good opportunity to educate on the difference between CH and a HA, even a migraine. NO, I am NOT belittling migraines. I know that has been done in the past on this board, but never by me. I know what migraines are, and they are debilitating and extremely painful. Just different. Pain is pain.

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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AubanBird

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Re: why do we
Reply #10 - Oct 19^th, 2012 at 2:06am

my squad leader used to think of them as "headaches" when i would tell him about them.

then he saw me go through a bad hit in iraq, during which i shattered two teeth by grinding.

after the hit i remember sitting on the ground out side my CHU. my squad leader asked me if that was my "headaches".

i said "yes, cluster headaches"

his response: "by headache, you mean freaky teeth shattering eye torture. got it."

that was one of only a couple bad ones while i was in iraq.

i have nice shiny gold crowns on four of me molars and some invisible veneers on the fronts now. Cool

gotta love the armys free dental.

i kinda like the name he gave them.

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AussieBrian

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Re: why do we
Reply #11 - Oct 19^th, 2012 at 3:43am

Beth E wrote on Oct 18^th, 2012 at 5:23pm:

We cringe when people ask about the "headaches" too. We get lots of advise, and people telling us the best home remedies and such.

It's worthwhile visiting the CH Specific board, page 34, and looking at a thread called " Dopiest responses to CH."

Even if you don't take a smile with you, it's likely you'll bring one back.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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duff CH.com Newbie Offline I Love CH.com! Posts: 3	Re: why do we Reply #12 - Oct 19^th, 2012 at 11:57am I totally agree, these should be called B.S.S. Headache does not describe it. I also have people asking me about the headaches, they have no way of knowing what it's like.
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Beth E

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Re: why do we
Reply #13 - Oct 19^th, 2012 at 12:35pm

It's worthwhile visiting the CH Specific board, page 34, and looking at a thread called " Dopiest responses to CH."

Thanks for this! When you think you are alone in this condition...I can see you all have got it! (unfortunatley) The Amish here told us about the banana peel. We have done diets to illiminate hard aged cheeses, yellow and red dies, chocolates, caffiene, green vegetables....lately newest ER Dr. we have never met before suggested a gluten free diet and no milk. We have been fairly lucky that most of our family members don't try to remedy the condition. Its difficult enough when others try to. But that thread made me laugh! We can all surely relate! I don't suffer and don't wish too!

My hubby is strong and can handle pain. I have seen him with a fractured vertebra...didn't even think it could be because he was so in control. He has had hernia's and surgeries, lacerations requiring repairs....no big deal where others would be on extreme pain meds! Up and around in less time than quoted...but this condition has disabled him! This has caused him to cry out for something, anything...of which nothing really works except practicaly leathal doses of something that would comatose most. And if he gets that, he is still walking, talking and moving on his own!!

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