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through the family album


Mad6string
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I've been digging a whole lot in my families medical history and asking all if they know of anyone in our family who had clusters, diagnosed or not. So far, everybody is telling me that nobody has had it but me. No brothers or sisters have it yet either. Does this mean I'm the first? Since I can't have children, does it end with me? Everybody is telling me that they have never seen anybody with "headaches" as bad as me. Is it possible that a bad head injury at the age of 3 caused them for me. Any insight would be helpful.

Mad6string

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I am also the only one I know in my family and relatives that has CH. I don´t know why I got it, I never had any injury or anything. It just came when I was in my late 20s.

Also curious if most of you are healthy and well besides CH? I am never sick, never have a cold, bad stomach or anything. The only thing I have is CH (periodic).

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Hi Mad6string,

My husband has 3 siblings and none of them have it.  As far as he knows, there is no one else in the family who has had it.

I don't know about the head injury.  I've wondered the same thing.  He had a bad car accident as a teenager and hit his head on the windshield.  Another head injury while running with a dog.  He fell and was knocked unconscious. 

Lee Ann

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I developed episodic CH at 19 years old, that makes it 35 years of CH now. 

No family history of headaches at all, not even my twin brother (fraternal).

Personally, I don't put much stock in the head trauma theory, as I suspect if these were caused by injury alone there would be a much higher incidence.  But that is just my opinion.

Rather than look for a cause, I try and look for answers.  ;-)

There are reports out there of a slightly increased occurrence rate for our children but if I recall it is not that much greater than the rarity this condition is.   That said, all too often I worry they could.  I can only hope these never happen with my kids or any other person.  But the possibility that they could develop these is one of the driving forces behind my involvement with clusterbusters.

best wishes to all.

FG

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About 10% of people with clusters have some family history of clusters.

Compare that to the general population of somewhere around .3 to .5 percent.

Looking at it the other way, 9 out of 10 of us are the only member in the family that ever had clusters.

So, it seems that if someone in the family has them, it's more likely that they'll show up again than in the general population, but, what part of that may be from genetics and/or environmental factors, who knows.

Bobw

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I have two younger brothers diagnosed ECH.  I was diagnosed CCH from day 1. 

I can remember my paternal grandmother tying cayenne peppers around her head for her "headaches. She was never diagnosed to my knowledge.

I have two grown daughters, neither of which have shown any signs of CH to date.

Just from what I know about my family's health history, I think it is very possible that CH has a genetic component, skipping generations within our family.

To me, this is a big motivational factor for my involvement, not only with Clusterbusters, but also with research on any treatment or hopeful cure.

Bobb

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My wife watched Bob Wold's video with me last night as I try to educate her on what I am doing as I attempt my first bust, first comment she made was when he said that a child of a CHer would have a 10% greater chance of getting them than the general population. Once I explained the enormously low % of people diagnosed her fears were eased. I think any of us that are parents or hope to be pray we don't pass this on and if we do that Mr. Wold's tremendous efforts on our behalf bears the fruit we all wish for, legal clusterbusting without experimenting on ourselves.

David

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I have read / heard mention before of these skipping a generation to occur in the descendents

There has been mention of my paternal grandmother having excruciating pacing type headaches. She and all her children have gone so cant verify.

I have 7 siblings and none have CH other than myself.

One of my sons has developed severe headaches a few years back that sound similar of CH which I have not yet witnessed. His description is close to CH. Hopefully something else. They come and then gone. He's too busy like most at 21 to get them checked out

I have had these 35 years since 17. the year prior to onset was laid up for a month with severe neck injuries.

Coincidence, dont know, but I'm sure most of us try to reason the cause.

Maybe its genetic. Maybe an injury. Maybe its just fate.

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There are 11 kids in all. Some of my fathers, some my mothers, and I am the only one of my mother and father together. I don't think that has anything to do with it but, it is weird. They had 1 kid in a 2 year, fucked up relationship and I turned out fucked up. I think it's punishment for being that bastards son! I'm part of his stupidity. Sorry to rant, I'm hurting again. :-[

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Yall might remember from my first post here, that my father, and his father both had/have this fuckin headache. Not really sure when they (figured out) my grandad had em. Might have been after dad got diagnosed.  Grandads just stopped at age 60. never had another.  Dads cronic. Still battling the beast. I've never heard of anyone else in the family having ch.  I sure hope my lil one doesnt get ch.

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