Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> What kind of people are we???
        
(Message started by: ExplodingEyeBall on Apr 19^th, 2004, 11:09am)

Title: What kind of people are we???
Post by ExplodingEyeBall on Apr 19^th, 2004, 11:09am

I was wondering if any kind of offical study has ever been done on just what kind of people suffer from CH's.

I'm not just talking about the age/race/region thing.

I'm talking more about what kind of people we really are.

I know that we ALL have something in common just by the fact that we have all looked here for advice. There has to be some other common tie. We all probably have something else in common that is either causing the HA's or a common trait that is caused as a result of them.

I'd like to see any study that explores how many CH sufferers are.......

Left/Right handed
Musicians/Artists/Teachers/Etc..
Computer Geeks/Scientists/Cops/Fire Fighters/Etc..
Criminals/Nut Cases(My wife would put me here)/ADHD/ADD/Etc..
Pedophiles/Arsonists/Murderes/Etc..
How many have had traumatic experiences as a child???..Death of a loved one/Sexual abuse/Other physical abuse/Etc..
Get the picture???

I know that it would be asking a lot to get people to be totally honest about some of these things but it would be really interesting if to see the results of a very in depth study on this and see where I fit in.

If anybody knows of a good source to see this kind of info, could you please let me know?

If not, I know that there has to be at least one person here that does this kind of work (research/statistics) for a living. Put together a questionairre and post it here for everybody to see until we come up with what we consider a good set of data.

Have somebody do the numbers (A moderator here just for the sake of anonimity???) and post the results.

Just an idea.... I have these sometimes at precisely 1:44 A.M. when I have nothing better to do except beat my head against the wall.

Title: Re: What kind of people are we???
Post by HypnoticFreddy on Apr 19^th, 2004, 11:56am

Oh man, this topic will get the cluster snobs on the prowl. Over the years this question has been posted a lot.

I see you are new and I will be nice.

Especially about the right handed vs. left handed thing.
That question gets asked a lot and a lot of people grind thier teeth and tell you to read the archives. So, read the archives.

However, whether we are murderers, and arsonists, pedophiles, and such, thats a new one. I don't know any correlation between murders and CHs, but thats just me.

I started a fire in 4th grade and the fire trucks came. So maybe that is why I get them. I played with fireworks in junior high school too. But that was just a phase.

I don't know. This may start some funky postings.

In all seriousness. Read through some of the old threads in the archives. There does not seem to be many traits other than the 75% man thing (I believe). I also read that many cluster heads have some sort of grumpy face?? I am not sure.

-Scott

Title: Re: What kind of people are we???
Post by ExplodingEyeBall on Apr 19^th, 2004, 12:09pm

I want to apologize if anybody was offended by the Pedophile/Murderer/Arsonist part of my post. I admit that I started some fires when I was younger.

These were only included by me for the sake of including defferent traits that people may have. The more data you have in a study like this, the more precise your results can be.

I did say that this would be hard to analyze (Did I spell that right?) because people wouldn't want to talk about it and it's none of my business. That's why this would have to kept anonymous.

I have just done a lot of looking around and have found no studies that go into these areas. I think it would be interesting to see the results of this kind of a study.

BTW... I am new here and I will check the archives.

Title: Re: What kind of people are we???
Post by Superpain on Apr 19^th, 2004, 4:14pm

Hey! I started a few fires as a kid too! Maybe we're on to something here!

Shit... I'm gonna be really pissed if that's why I have clusters! >:(

Title: Re: What kind of people are we???
Post by Karla on Apr 19^th, 2004, 5:35pm

There are a couple of surveys on links off the main message board that answer these kind of questions.

Title: Re: What kind of people are we???
Post by HypnoticFreddy on Apr 19^th, 2004, 8:03pm

As a newbie, don't EVER feel embarassed or whatever about posting. There are people who have posted 8000+ times on here. They understand.

Keep reading, and you'll get a good feel.

Feel well.

-Scott

Title: Re: What kind of people are we???
Post by miapet on Apr 19^th, 2004, 8:37pm

Just as an fyi . . .as a former social worker (worked with at-risk-youth), and now, as a person who works with emotionally disturbed youth . . .children who light fires generally have a common issue even if they don't remember the issue conciously. Notice: the key word is generally.
miapet

modification: fires that are not the random *oops*

Title: Re: What kind of people are we???
Post by HypnoticFreddy on Apr 19^th, 2004, 9:13pm

I was a total pyro!

We had a neighborhood pyro gang. We did the whole dog shit in a bag, ring the door bell thing. Then we got into Raid can-torches. Then we found an antique shop that sold fireworks to minors. In upstate NY where DOT class 3 fireworks are illegal. I remember as a 7th grader riding my bike 5 miles to this old store and asking all nervoulsy if the guy had any firecrackers. He moved a phonebook, and said, "I got some smokers!" He had smoke bombs, and bottle-rockets. We had to pay $0.15/bottle-rocket. That was 1985. We were getting just slightly ripped off.

We then found some kids whose parents didn't mind if they mail-ordered $900 worth of fireworks for themselves and all the neighborhood kids. That is when the fun began. Bottle rocket guns.

I like explosives. Rockets. I built Estes rockets. I also dismantled their engines. Saw one go ablaze in poor Billy Chergosky's face. Ah, the hair-burn. Oh, and M-80's. Had to go to Chinatown, NYC for that. That was serious. Had the whole f'n neighborhood rocking! Sure way to get cops to come.

I think Def Leppord said it best, "I'm a pyromaniac!"

-Scott

Title: Re: What kind of people are we???
Post by UN_SOLVED on Apr 19^th, 2004, 11:37pm

After reading this post, I think i'll light a cig ;;D

Unsolved

Title: Re: What kind of people are we???
Post by ExplodingEyeBall on Apr 20^th, 2004, 9:28am

I guess the main reason that I started this post in the first place is that I don't think I'ver ever met someone else who has cluster headaches and I'd like to just find out a little more about this group of people.

A lot of people I talk to claim that they get the worst headaches.
When I tell someone about the problems I'm having they always reply with 'Oh Yeah, I get migraines somtimes too. You just have to find a quiet place and lay still'. Is it OK to strangle people who say stuff like that???

Also: In all fairness to my first question here on this topic, here is who I am.

41 years old.
Left handed.
Musician-Self taught on guitar and drums 32 year vet.

Current work - Computer geek- maintain 450 computer systems for the County Library Hardware/Software/Security/Programming

1 very old felony record (1980)- B&E looking for cash to buy more beer. Have since learned to maintain when using alchohol.

Arsonist?-Used to catch the woods on fire, burn model cars, garbage cans, etc... (I think it's a little boy thing if you ask me.)

ADHD/ADD? I'm the poster child for adults with ADHD.

Traumatic experience - sexually abused at age 10

Hobbies/Likes? My wife and my 3 year old daughter, Music, Computers, Nascar racing, Church, Camping, Reading, Movies (Not neccesarily in that order.)

OK. That is who I am. If nobody else wants to divulge, that is fine. I just wanted to show that I would be willing to go with something like this. If I ever find a picture of me that doesn't scare small children, I may post it.

miapet.. Do I sound like one of your children?? Sexual abuse... fires???

Well... Thanks everybody for not flaming me when I asked an old question and helping me instead. It's time for me to get some work done.

Pat

Title: Re: What kind of people are we???
Post by floridian on Apr 20^th, 2004, 9:47am

One study found no psychological difference between clusterheads and other headache sufferers. That study also compared photographs of cluster/non-cluster faces, and found that the mid-face height tended to be different in clusterheads. ;;D

Another study comparing clusterheads to other headache sufferers found we have the largest percent of people that were abnormal, and the largest percent of people that were (apparently) psychologically balanced. (I think each group was 15 or 20% of the total).

Another study found that we are more anxiety prone and less socialized- ie, more loners, and rated high on the hostility index (no shit, professor!). No relationship between handedness and clusters found in this study.

A fourth study looked at the results of Jungian/Myers-Briggs personality and headaches. About 3/4 of men with clusters fell into the "sensing" category - this is almost identical to the personality profile of women with migraines. We got male migraines! Let the flames begin!! ;)

Title: Re: What kind of people are we???
Post by Bob P on Apr 20^th, 2004, 10:03am

http://www.clusterheadaches.org/library/general/lifestyle.htm

Title: Re: What kind of people are we???
Post by ExplodingEyeBall on Apr 20^th, 2004, 10:08am

on 04/20/04 at 10:03:33, Bob P wrote:

http://www.clusterheadaches.org/library/general/lifestyle.htm

Thanks Bob.

This is getting closer to what I was looking for.

Title: Re: What kind of people are we???
Post by thomas on Apr 20^th, 2004, 10:24am

According to Rock_Lobster this is me

on 04/19/04 at 22:11:08, Rock_Lobster wrote:

He is chock-full of fine qualities, ie:

Handsome (assuming that is him and not the milkman in his little icon)
Gentleman
Sharp Dresser
Porn Star
Shitload of Zomig stashed away
Can fix shit
His room at the convention is already paid for

;;D ;;D

Title: Re: What kind of people are we???
Post by sandie99 on Apr 20^th, 2004, 10:52am

Well, here's one music-loving, media-stydying, right-handed brunette, who loves sitcoms, has a gift of writing stuff of her own (novel lives in plans) and has been bullied in school by 3 different group of being short (I'm 4ft 11 at 24), had a difficoult relationship with my dominating mum and lost my father who was also a close friend at 17. That's my story. ;;D

Title: Re: What kind of people are we???
Post by HypnoticFreddy on Apr 20^th, 2004, 11:44am

Seriously, didn't some literature once say that cluster heads had a rough face or a chunky face, or a tough face or something like that? I thought I remembered reading that.

Me, I got one Fugly looking face.

I got hit with the ugly stick 50 times when I was born.

Plus, I have this total fear of sock puppets and clowns. Totally frightening.

-Scott

Title: Re: What kind of people are we???
Post by ExplodingEyeBall on Apr 20^th, 2004, 12:18pm

My wife has told me on many occasions that I look like I'm pissed off about something.

Title: Re: What kind of people are we???
Post by thomas on Apr 20^th, 2004, 12:20pm

on 04/20/04 at 12:18:04, ExplodingEyeBall wrote:

My wife has told me on many occasions that I look like I'm pissed off about something.

I always look like I'm ready to ripp someone's head off. lol ;;D

Title: Re: What kind of people are we???
Post by Racer1_NC on Apr 20^th, 2004, 2:08pm

on 04/20/04 at 12:20:24, thomas wrote:

I always look like I'm ready to ripp someone's head off. lol ;;D

I dunno Thomas......to me you always look like you had just finished ripping someone's head off. ;;D ;;D ;;D There is a difference ya know. ;;D

Title: Re: What kind of people are we???
Post by Superpain on Apr 20^th, 2004, 2:19pm

on 04/20/04 at 12:18:04, ExplodingEyeBall wrote:

My wife has told me on many occasions that I look like I'm pissed off about something.

EVERYBODY says that about me... >:(

Title: Re: What kind of people are we???
Post by ExplodingEyeBall on Apr 20^th, 2004, 2:43pm

You know... Looking like that comes in pretty handy sometimes when you find yourself in some undesirable situations.

People who may like to give other people a hard time have a tendancy to leave you alone if you look like your going to have them for a snack if they get in your way.

I think it helped stop us from getting jumped after a Bulls game one night.

I'm glad that some people don't realize that the dude that looks like he's pissed off is really a pretty nice guy and happens to be in a wonderful mood.

Title: Re: What kind of people are we???
Post by ExplodingEyeBall on Apr 20^th, 2004, 2:49pm

OK.

Here's who I really am.

I am trying to insert a picture here and I don't have a clue if it will work.

I'm just a computer geek. I'm to to message boards and not familiar with how to do this.

http://c:\meandmykramer.jpg

Title: Re: What kind of people are we???
Post by ExplodingEyeBall on Apr 20^th, 2004, 3:02pm

OK.

I'm officially embarrassed. I can't even link a picture into a message.

I'll find a way eventually.

In the mean time just think...Incredibely handsome, young looking, dark haired, Irish guy with a lot of charm and looks..... Who am I kidding? Think overweight, 40ish, Dark haired Irish guy with a head as big as a bowling ball.

Title: Re: What kind of people are we???
Post by Redd715 on Apr 20^th, 2004, 3:12pm

Hey I can't seem to get pictures to go in here either...

I had hoped to put one in my profile so at least a face can go with the name...no such luck...lol.

I think this is some conspiracy...lol.

Title: Re: What kind of people are we???
Post by ExplodingEyeBall on Apr 20^th, 2004, 3:34pm

OK.

Maybe it will work this time.

If it doesn't, just go with the last description.

http://www.lakeco.lib.in.us/images/meandmykramer.jpg

Title: Re: What kind of people are we???
Post by notseinfeld on Apr 20^th, 2004, 3:49pm

Lemme see this picture thing:

http://dlehman.home.mindspring.com/clustergif/davidmexzoom.jpg

Title: Re: What kind of people are we???
Post by notseinfeld on Apr 20^th, 2004, 3:51pm

Nahright---I'll make it smaller next time.

Title: Re: What kind of people are we???
Post by Redd715 on Apr 20^th, 2004, 3:54pm

How the F*CK do you do that?

Grrrrrrrrrr!!!!!!!!!!

Title: Re: What kind of people are we???
Post by Redd715 on Apr 20^th, 2004, 3:57pm

By the way notsienfeld, you are a cute young thing. Love the tan.

Title: Re: What kind of people are we???
Post by ExplodingEyeBall on Apr 20^th, 2004, 4:12pm

on 04/20/04 at 15:54:52, Redd715 wrote:

How the F*CK do you do that?

Grrrrrrrrrr!!!!!!!!!!

First, put a picture on a web server some where. I work in the I.T. department at the Library. I just copied my picture to our web server.

Next, click the 4th icon from the left in the bottom row of YABBC tags.

Now, put the URL for your picture in between the two image tags that were put in.

Title: Re: What kind of people are we???
Post by Redd715 on Apr 20^th, 2004, 4:18pm

Ok...so there is no way to post directly from my hard drive? That sort of stinks...but I suppose if I have to I have to...

I'll play around and see if I can pick it up maybe from some other places I've posted.

Title: Re: What kind of people are we???
Post by notseinfeld on Apr 20^th, 2004, 4:20pm

redd--I'm blushing ;)

Posting the pic--a piece of cake--here's how:

You'll need your picture somewhere on web, i.e. at an address such as www.mysite.com/redd.jpg.

After it's up, just use the picture above (yabbc tabs) to insert image and put the address between the tags. You can also email notseinfeld@mindspring.com and I'll post it for ya.

Title: Re: What kind of people are we???
Post by Redd715 on Apr 20^th, 2004, 4:21pm

Ok....gonna try this and see if it works...

http://groups.msn.com/Brokenheartsrecoveryroom/mypic.msnw?action=ShowPhoto&PhotoID=5968

If you can see this...this is me...

Title: Re: What kind of people are we???
Post by Redd715 on Apr 20^th, 2004, 4:23pm

>:( That obviously didn't work!

Title: Re: What kind of people are we???
Post by notseinfeld on Apr 20^th, 2004, 4:23pm

I see ya red but not on the cluster site here. Apparently msn doesn't like 3rd party viewing.

Title: Re: What kind of people are we???
Post by notseinfeld on Apr 20^th, 2004, 4:25pm

Ok everyone---Here's Redd !

http://dlehman.home.mindspring.com/clustergif/sweet2.jpg

Title: Re: What kind of people are we???
Post by Redd715 on Apr 20^th, 2004, 4:29pm

I know what you did....now don't you go snooping around that place ya hear me? LMAO

Title: Re: What kind of people are we???
Post by ExplodingEyeBall on Apr 20^th, 2004, 4:31pm

I knew that there had to be something behind the 'Redd' part of Redd715s user name.

My wife is a red head. A hair color often copied but never matched.

Title: Re: What kind of people are we???
Post by Redd715 on Apr 20^th, 2004, 4:45pm

My former co-workers coined that nickname for me a long time ago...I never heard my given name at work for oh....the last 4 months I worked there before I moved back to WI. It's nice..I like it...

Title: Re: What kind of people are we???
Post by tgz23 on May 1^st, 2004, 8:17pm

;;D I think CHer's are way smarter than the average bear. Yeah that's it.

Title: Re: What kind of people are we???
Post by Melissa on May 2^nd, 2004, 10:46am

notseinfeld, I agree with Redd, you are a cutie!

and Redd, omg you are beautiful!

You guys should send your pics to Bob P. so he can put them up on the clusterhead picture page!!

:)mel

Title: Re: What kind of people are we???
Post by Rock_Lobster on May 2^nd, 2004, 11:23am

on 05/02/04 at 10:46:11, Melissa wrote:

and Redd, omg you are beautiful!

:)mel

Agreed.

Bathe her. Bring her to me.

Rock

Title: Re: What kind of people are we???
Post by dgiordano on May 2^nd, 2004, 5:07pm

with reference to "what kind of people are we"

if you have done any research on cluster headaches you'll see that they reside in the hypothalmus. this explains why they occur at the same time of the day because the hypothalmus is responsible for our biological clock. the hypothalmus is also responsible for the release of testosterone which explains why clusters are more prevelant in men than women.

i have noticed with my headaches, a link between testosterone fluctuations, either increase or decrease. after a testosterone release (sex or masterbation) a headache comes shortly after. in addition, whenever i eat higher fatty meals, percentage of diet not total grams, trigger my headaches. an increase in testosterone occurs typically when fats are above 30% of your meal. basically, during the cluster season, any activity to the hypothalmus can trigger the headaches.

medical books will use the all to common causes of everything, smoking, alcohol, and stress. these triggers, first of all are too broad to satisfy me. second, if these were the triggers, theoritically i should trigger a headache all 20 times that i smoke.

it seems to me that we are people with irregular testosterone levels, which is also supported by my ability to gain and lose muscle mass as i like too.

please take a look at your own link between test. and your headaches and email me to let me know what you come up with. a problem this bad has a definitive cause. because of how few of us there are out there, it doesn't appear as if we'll ever get the attention we need from medical professionals. we'll have to solve this puzzle together.

Title: Re: What kind of people are we???
Post by AlienSpaceBabe on May 3^rd, 2004, 3:41pm

on 04/19/04 at 11:56:10, HypnoticFreddy wrote:

In all seriousness... There does not seem to be many traits other than the 75% man thing (I believe). I also read that many cluster heads have some sort of grumpy face?? I am not sure.

-Scott

So.... I'm a "75% male" female with a grumpy face? hmmm... seem to be missing a few body parts, then
:o

As for the list:
Not a murderer or anything else like that.... a righty.... and, oddly, highly logical while also quite creative and very emotional... (hmmm.... maybe I am part male?!)

Title: Re: What kind of people are we???
Post by Redd715 on May 3^rd, 2004, 4:00pm

on 05/02/04 at 10:46:11, Melissa wrote:

You guys should send your pics to Bob P. so he can put them up on the clusterhead picture page!!

I didn't know there was a cluster head Picture page... :-/

Title: Re: What kind of people are we???
Post by Melissa on May 3^rd, 2004, 4:58pm

on 05/03/04 at 16:00:47, Redd715 wrote:

I didn't know there was a cluster head Picture page... :-/

Yup, right here: http://www.pahlow.net/ch/clusterheads.htm

At the bottom of the page is the email address to send your picture.

:)mel

Title: Re: What kind of people are we???
Post by kolinshaw on May 3^rd, 2004, 7:23pm

Kudrow has done these studies and from memory he said CH suffers had "leonine" appearance, multi-furrowed browline and a thick dermis..?Kol

Title: Re: What kind of people are we???
Post by BlueMeanie on May 4^th, 2004, 6:45pm

I never caught anything on fire. Not sure, but there could be a couple of axe murderer's here. :-[

Title: Re: What kind of people are we???
Post by thomas on May 5^th, 2004, 9:33am

on 05/03/04 at 19:23:06, kolinshaw wrote:

a thick dermis..?Kol

::) :-X

Title: Re: What kind of people are we???
Post by Woobie on May 7^th, 2004, 11:49pm

on 05/02/04 at 11:23:12, Rock_Lobster wrote:

Agreed.

Bathe her. Bring her to me.

Rock

OMG!!! LMAO!!! That was funny!!!!!!!!!!!! [smiley=crackup.gif]

Ramon always looks pissed off too...........

and i think that clusterheads are the best kind of people... they are funny, they are giving, they are caring, they are smart........they are the bestest people in the whhhhhooooooooooooole world.

;;D

Title: Re: What kind of people are we???
Post by Wendy1 on May 13^th, 2004, 10:11pm

I guess I would ask the question, not as to what are we.... but to what we have or don't have that 'normal' (i.e. ppl who do not experience clusters) ppl have or don't have....

And that is where our answer lies to a cure.

Why should this be so damn hard to figure out. There have been some really defining studies about the malfunctioned hypo. Circadia Rythym. Etc.

Why can't someone figure out which one of these is causing the blood vessel to swell and push on the nerve. They can fix trigeminal neurolgia, why can't they fix us.

Umm... just venting..... Thanks!

Title: Re: What kind of people are we???
Post by pain-in-the-head on May 16^th, 2004, 8:05am

I do know one thing that we all have incommon...a sense of humor! Some wild posts!
In one of my many books that describe Cluster Headaches is as follows:
-affect 1% of the population
-most sufferers are tall men who smoke and drink a lot
-hazel or blue eyes
-rugged facial features
-coarse-textured, orange-peel-type skin (what does that mean?)

Well, I am a 31 year women with blue eyes and I hope I don't have a rugged face!

All I know is when I get the "cluster", I want to die.

One of the hardest thing is watching people watch me!
If you are not a sufferer then they don't get it! Not their fault! They feel so helpless, which they are!

I have tried everything from frozen peas on my neck to a cold cloth on my forehead and a blowdryer on the top of my head. I have been to the hospital several times as I thought I was for sure going to die! the last time was Friday morning and they gave me an IV drip. He said it may break the cycle...it didnt!

Although illegal, POT is supposed to work to at least mask the pain!

Your fellow sufferer!

Title: Re: What kind of people are we???
Post by BobG on May 16^th, 2004, 4:37pm

on 05/16/04 at 08:05:40, pain-in-the-head wrote:

I do know one thing that we all have incommon...a sense of humor! Some wild posts!
In one of my many books that describe Cluster Headaches is as follows:
Your book is way out of date. Chuck it out the window.

-affect 1% of the population
Actually it is less than 1%. Closer to .01%

-most sufferers are tall men who smoke and drink a lot
Not true. We come in all shapes and sizes, some smoke, some used to, some never have. Same with drinking.

-hazel or blue eyes
Also not true. We have the most beautiful eyes of all colors.

-rugged facial features
Nope. Maybe some do but it would be rare.

-coarse-textured, orange-peel-type skin (what does that mean?)
Nope again. We just have normal skin.

Well, I am a 31 year women with blue eyes and I hope I don't have a rugged face!
You don't. You look very pretty and not a day over 21.

All I know is when I get the "cluster", I want to die.
You're not the only one to feel that. But, please don't.

the last time was Friday morning and they gave me an IV drip. He said it may break the cycle...it didnt!
He probably should have given you Imitrex to abort the pain and then started a preventative program.

Although illegal, POT is supposed to work to at least mask the pain!
Pot WILL NOT help with cluster pain. It will most likely make it worse. And if you get arrested you'll have you cluster attacks in jail. That's not a good situation to be in.

Welcome to the board. Tell us some more about you.

Title: Re: What kind of people are we???
Post by mynm156 on May 16^th, 2004, 4:59pm

Im a really nice guy until the BEAST comes a knocking!! Then I kind of turn into this venom spiting, lasers from my eyes kind of get the fuck out of my way between me and the medicine cabinet. Oh and my wife has learned that if I am on the floor bashing my brain into little pieces that it probably not a goodtime to say ANYTHING.

GOOD VIBES ALL

MYNM156

Title: Re: What kind of people are we???
Post by Wendy1 on May 17^th, 2004, 10:44pm

I was once called a 'Brave Person' from an ER doc. It was nice to actually have a medical person acknowledge our pain, however, I cried....

I don't want to be a 'Brave' person... I don't want to have Clusters. I don't feel brave. I feel helpless, weak, frustrated with Clusters.

I have to vent because I think I feel a cycle coming on and I turn into this ugly, mean person..... that has a hard time dealing with life knowing that this beast who controls my every move is looming.....