I have spent some time on the net and have been unsuccessful in trying to find numbers.

1)  I am curious how many people with our condition have actually taken their lives?
I wonder how often it(suicide) happens, what percent of us actually decide to make that horrible decision?(we lost another one last Sunday, is anyone keeping track?)

2)  I also wonder how many(percent) of us have experienced some form of trauma to the head/neck prior to having this condition?(an article on OUCH was vague when it said that "many" had reported prior injury)

Knowing how many have taken their lives would be a relatively meaningless statistic since estimates vary greatly on how many people actually have it. There are many who are misdiagnosed, and many more who go undiagnosed.

And the ones who do commit suicide are only the ones we hear about.

Also there is the unknown factors that may have inflenced rash decisions.

seaworthy wrote on May 24^th, 2010 at 7:59am:

Also there is the unknown factors that may have inflenced rash decisions.

You are most correct, mr. Don.

I think statistics related to suicide, no matter what the cause, are difficult to compile, given the stigma associated with the act. I had a friend whose ex husband had cluster headaches and committed suicide off cycle. She said it was depression...

That's probably the more critical factor...on or off cycle, depression. There have been several threads about the depression that can accompany a condition like this, and how important it is that it be treated along with the CH.

The head trauma thing is just as tough. Every male I know can recall at leaat one time when, while doing something incredibly foolish, they suffered some degree of head trauma!  ;D Jumping off the house using a sheet as a parachute, any number of bicycle, skate board etc. accidents. So then the stats would have to be adjusted for degree of trauma.

Joe

As a survivor of 2 suicide attempts on Jan 15th and Feb 6th of 1998, I guess I need to add my 2 cents worth on the first question in this thread.....

I was in the longest, most intense cycle I had ever experienced, 10 plus hits every 24 hours, forcing myself not to sleep every other nite in an attempt to avoid some of the nitetime hits, I knew about and had experienced the relief of Imitrex but couldn't afford it, didn't know about O2 yet, and the net was still fairly new and I had limited access to it (this board was a few months away from being founded so I'm not sure that would have made a difference anyway).

As far as the VA's pscych folks were concerned, mine was a classic case of Viet Nam era PTSD and severe depression exacerbated by alcohol and drug abuse. 

It is true that I had struggled with PTSD and depression for many years, had used a lot of drugs for a lot of years but had walked away from the lifestyle 15 years prior to that (other than the occasional toke), and although I did drink in excess at times, I certainly hadn't had any in several months at the time since it is an almost instant trigger for me "in cycle"

So, while I will agree that the depression and exhaustion contributed to my making the decision to seek a permanent solution to a tempory problem, I had struggled with depression and PTSD for many years before CH but it never made me want to kill myself to make it go away!!!!

As to the second question....can't help ya there....I'm too damned hardheaded for it to even be a possibility that head trauma was a factor for me!!

DD

How many have committed suicide only because of cluster headaches? My best guess would be zero. IMHO there would have to be a lot more than just clusters in a person's life for a person to commit suicide.
I think it is time to kill the term “suicide headaches” when referring to cluster headaches. It just ain’t true. CH’s have also been referred to a “executive headaches” but I have seen very few executives here and those that are here have never blamed their career as a cause of their headaches. It’s time to kill that term also.

Quote:

“executive headaches”

Never heard that one before.

We all know that a sudden release from stress is a trigger for many. Executives work under extreme pressure so when the big deal finally went through, or they went on leave and suddenly there's no worries, Bang! That's when the monster would hit and the reason for the term.

'Holiday' headaches has also been a popular description at different times and I wish I could remember which esteemed victim of ch.com carried the tag "Stay stressed. Don't sleep. Never, ever relax!"

Thanks, AussieB. I've never been call esteemed before.  :)

I'd guess the term "Suicide headache", is reference to more how the though occurs to you, rather then actually drives you to commit suicide. I've never been in so much pain that I put Death as a potential resolution, other then my worst CH's. Plus I can see someone pleading to a Dr that if they were to suffer from the pain forever, they'd rather die. Mainly to convey the severity and desperation.

Now, I can see if I had chronic CH, and went days and days with non-stop agony, it might drive me to some extreme. I think I'd smash my head open before I'd choose to die though.

I've always thought about if trepanation (ancient brain-surgery START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) was due to CH. Its believed they did it, in the Stone-age, assuming evil spirits were in their head. A.K.A the Demon.  :-?
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Just a thought.

PlayDoh wrote on May 31^st, 2010 at 7:28pm:

I'd guess the term "Suicide headache", is reference to more how the though occurs to you, rather then actually drives you to commit suicide. I've never been in so much pain that I put Death as a potential resolution, other then my worst CH's. Plus I can see someone pleading to a Dr that if they were to suffer from the pain forever, they'd rather die. Mainly to convey the severity and desperation. Now, I can see if I had chronic CH, and went days and days with non-stop agony, it might drive me to some extreme. I think I'd smash my head open before I'd choose to die though.

Don't make the mistake of saying that "because it applies to me, it applies to everyone else." Others have, indeed, taken their own lives due to this condition. Most recently on May 16, 2010. Will was 24:

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Play Doh....read that article...drilling a hole in your head to let the demon out. During acute attacks that's exactly what the sensation is, if I could just open the skull and let the demon out the pain would stop....wild! ;)

Joe

Ok what's wrong with you people?

the first time I read stories HERE in THIS site was years ago in an internet cafe and burst right there into tears that finally there are others too!I can speak with them about it!
Did you have any different reaction or absorbed that and forget already about it?

we are 7000 members registered here.I can't even imagine how bigger is the actual number.

And be extreme careful as we are using the -we- in every sentence.Don't take it for granted as at the same time i don't even dare to think how many are out there who just say
- I..
and possibly don't even  spell it out anymore due to misunderstanding and whatever the ciscumstances of their life might be.
Life can't be put alltogether in our own thick little head


Now imagine for just a sec
that you don't have a few hundred or thousand comments of your own here,you never in fact register here.

fun aint' huh?

what?energy drinks?imigran?o2 at 25 ml with non rebreather mask?venting?you wanna get it out of your chest?clusterbuster?supporter's corner?meetings and gatherings?

GOT IT?

How the hell do we want the medical world to understand better if we are arrogant ourselves?

Now i ll just shut the f#%K up
for the black and white picture of that fine young man
24 years old who doesn't exist among us anymore.

with all the respect

What the hell are you talking about black? I just went back and read all these post and I can't see what in the world got your panties in a wad.

No one was being disrespectful and were just putting their thoughts down.

Chill out. >:(

ok whatever.
sorry for my behavior.Chilled out already

just wanted to make a point.


Quote:

I think it is time to kill the term “suicide headaches” when referring to cluster headaches. It just ain’t true

that maybe this is completely in the wrong direction.
and that maybe yes people have committed suicide due to repeative nature of ch which affects the way an individual may not be able to come in good terms due to thousand reasons his own life with the world.
If we take it literally yes no one of us committed suicide the first time we reached a Kip 10,so whats the fuss with the term?
But i guess there is much more than this...as i said in the previous post,with just that simple example,how much would things be different for you if you just didn't have access to internet and never met another clusterhead in your life?
Is it not true that more than half of clusterheads have thought at least once about suicide?not even tried to committed,just thought.
Isn't this good enough for keeping with the term and getting even higher the alert?
1.000.000 people affected only on the U.S.A. right?and the world is much much bigger..


Just My humble opinion

I agree with you on that point black.  While suicide can be the results of cumulative things pushing them over the top, I know of 2 people on this board that was just about to do it. One already had the date set and the way it was going to happen. And he says it was due to the continuous pain which I am sure created depression and hopelessness. I have no probelm with the term "suicide headache).

Sorry Bob  :-*

BobG wrote on May 24^th, 2010 at 11:52am:

I think it is time to kill the term “suicide headaches” when referring to cluster headaches. It just ain’t true.

When you are being hit 8 times a day, day in, day out and your entire life disintegrates before your eyes, solely to revolve around the next hit, a permanent end to the pain can be a tempting thought. One that I am certain many CCHers have. "Suicide Headaches" - You bet!

...having experienced multiple physical injuries, illnesses, psychological traumas, and life stresses in general...I can say I have NEVER contemplated suicide for any of them....with ONE exception!

That would be CH. That I would NEVER do it does not negate the fact I have thought about it. "Suicide headache" about sums up what I think of CH...nothing has ever compared.

I am reminded of a post by Barb upon meeting a new doc (and I apologize ahead of time if I get this wrong).
He asked several questions...one of which was something like "have you ever considered taking your own life because of these?" She answered "yes"...he said..."If you had answered "no" we would be having a different conversation".

Best,

Jon

There were times I wanted to overdose because the pain was so bad.  At the time, I was just thinking more pills = possible relief and wasn't thinking of the consequences or just didn't care because of the horrid pain.  I called my mother in the middle of the night one night and told her that if she didn't take me to the ER, I was going to keep taking pills until I felt better.  Only during a CH have I EVER felt this way. 

The head injury thing is interesting.  I suffered one with loss of consciousness around the time I just began walking.  My headaches started at age 15, just to throw that in there.

Well, I can honestly say this... I have have been honest about this with my wife. I can't talk about it with anyone else where I live so it's kinda a relief to get it off my chest.
Being able to do this is a sort of mental support that outwheighs a degree of shame that I feel.
I'm pretty sure I won't personally meet many of you so no offense but that's why I feel I can talk about it  :P

The first and second time I got a CH cycle it was awful, very scary and the pain was unlike anything else I had ever experienced before. The first time I can remember I cried like a baby due to this incredible pain, just begging to make it stop. It was just overwhelming.

If there would have been a railroad next to our house, it would not have costed me a second thought to jump under the next train. The irony is... there actually was a railroad pretty close by but during an attack I just couldn't bring up the effort to go there, although I would've so loved to end it.

Seriously, that was the only thing I was thinking about then.
After getting diagnosed, getting meds, imitrex, lots of talking with my wife and getting through more attacks with her help, I've learned to sit them out. My wife has definately been my biggest help and support. I seriously can not imagine how I would cope with this without her.

It's frikking torture, this CH curse, no one will convince me otherwise, but I can manage and even though the thought of the railroad still comes to mind sometimes, I never actively pursue it. I've won from it, at least that's what I can say now. On the other hand... I've only had 4 cycles so far... and they didn't even last THAT long... 2-3 weeks... makes me wonder how strong I actually am.

But all in all, I do believe I've won. I know things can get worse but I won't think about that. My last cycle's gone for about a week or three, topamax side effects are wearing off so I feel happy again. And even though my last cycle was far worse and I've had much more trouble during the first week, 1,5 week after the cycle than before... mentally I have coped with it much better than I ever have.

So I believe CH can strike you down like a hammer on a nail. But with support and love, courage and willpower I also believe you can be the stronger one.

*runs away quickly before having any second thoughts about this post*