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        New Message Board Archives >> 2002 Posts >> Part One...AMAZING CLUSTER SECRETS
        
(Message started by: Kenn on Oct 29^th, 2002, 1:08am)

Title: Part One...AMAZING CLUSTER SECRETS
Post by Kenn on Oct 29^th, 2002, 1:08am

I guess I haven't posted anything since the new board took effect. And I've only been able to do a surface scan of the messages every few weeks, so I'm a wee bit behind. Basically, I'm wanting to say 'Hi' and try to catch up a little.

Also, several of you have sent emails asking about the "AMAZING CLUSTER SECRETS" project I began maybe three or four years ago. What I did was ditch the whole thing, partly because I got too far into the depressions to give a rip. I think I would choose to suffer from CH's over clinical depression, hard as that choice would be. At least, CH goes and comes, while deep, long-term, suicidal depression is just continual hell!

Anyway, if any of you are still interested I might give it another shot and maybe get the info together again for posting here.

Just to let you know, the number one amazing Clusterhead secret remains the same as it was four or five years ago. But the explanations and understanding of it has changed significantly.
Originally, AMAZING CLUSTER HEADACHE SECRETS, NUMBER ONE went: [/b]In general, it can be said that the longer one has suffered from Cluster Headaches, the more that person will resist a cure.[b]

I know that some of you have discussed this either with me or online as a result of Flash's post maybe two years ago. There may have been other investigations into this topic about which I am unaware.
However, this first topic is true IN GENERAL.
Here are two of the reasons why:
For a human being to live for a long time with this kind of torture and still remain a functioning member of society ("functioning" may be a stretch of the term for some of us) the sufferer must develop what are often very sophisticated techniques for survival.
After years of perfecting these techniques, the entire lifestyle becomes geared to survival of CH's through the use of the creative methods we adopt, often at the cost of whatever stands in the way. That's why such a high divorce rate and high jobless rate. That's why such a high suicide rate. That's why - when you tell a Clusterhead about a promising new treatment he or she will almost always have a sudden surge of mixed reactions deep inside. "If the new treatment works...how will I still maintain my hard-earned way of coping with life?"

When Flash first posted the general drift from AMAZING SECRETS...he reported (from his perspective) what he saw in the report I sent him. We saw this first topic as a way for Clusterheads to explain their failures and societal dysfunctions..."I'm a failure because these headaches have wrecked my life, and that's the only reason!"
Society and family and loved ones too often miss the fact that anyone who has survived very long with these headaches is heroic! Failure is in the eye of the beholder...whether that perception comes from others or straight from the Clusterhead! We measure our self-worth against others. But they would likely not trade places with us if they really new what it takes to deal with this kind of life. It is an incredibly complex lifestyle. There are almost infinite little edges to it, countless little geometric patterns which must be meticulously arranged inside the mind, the body, the spirit. It takes a long time to compose and perfect it, and anything which threatens to overturn it can bring serious inner turmoil.

So, we must protect what we worked hard to build --
a life which orbits around a most unusual, frightening and potentially deadly malady.

There is much more to this #1 SECRET than I've mentioned here. For instance, a second reason it is true is; we know that many people who have undergone systematic, long-term torture at the hands of some brutal regime or institution have developed a psychological need for the pain, itself...they actually become addicted to it.
Far from being a convenient explanation for the behavior of most of us Clusterheads, this fact serves to further complicate an already existing mass of unfathomable data, most notably by being ignored and unaddressed.

But I'll have to save further elaboration for later.
What I'm hoping for is a nut-busting, mind-wrenching honesty from my fellow C-Heads, partly in an attempt to renew or to at least recognize the value we have as individual human beings, and partly to just stop the phoniness we generate. Rather than misfits and oddities, we are really treasures of knowledge and wisdom in the areas of survival, of coping, of the art of living a difficult life. At least, we SHOULD be masters of those things. We need to begin to see past the smoke that we, ourselves, have helped create with our guilt and excuses and bitching and moaning and thinking we are less human than others. You know...stuff like that.
__________________

This very first topic has about a million little flips and nuances to it. Please don't form assumptions about my intent in posting this or any subsequent topics, nor about any potential motives other than the search for truth.
If there is Truth, let that be the goal.

I don't think I will post the next one until you want it or until I get out of the home.
Wait a sec!!! I'm trying to get INTO the home, if I'm not mistaken.
So hard to remember sometimes....

Best way to reach me is email:
KennGilson@AOL.com

Love as always,
Kenn

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by 2E2D on Oct 29^th, 2002, 1:21am

I just want to say before anyone begins to assume anything... This is not the same Kenn as me. The last thing I would need right now is to be blamed for this BS. Thank you.

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Mark C on Oct 29^th, 2002, 2:09am

I think your safe DA, I can tell its not you ;D

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Ted on Oct 29^th, 2002, 2:35am

Hi Kenn. Holy shit, don't you ever shut up? :-)
I completely disagree with you and I quit reading your book halfway through. But I disagree that we give up and say "no" to treatments as a survival technique. We say it because we want to see why it's not spam. We want to see why, let's say LSD or shrooms work whereas X doesn't. we know why X doesn't. After any beneficial reaction it depletes serotonin. We know why Shrooms and LSD work. It mimics it close enough. We aren't a bunch of naysayers. We're a bunch of people who if you dare to say you have an answer, well, you better be able to really have an answer. Because we have no time to fuck around with people who have an answer for $9.95.
By the way, I don't remember you. I remember people coming to the old board promising relief if someone would IM them but not put the "cure" up for general discussion. Were you one of them?
More importantly, I think you're dorkangel. LOL

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Marc on Oct 29^th, 2002, 10:02am

I clearly remember Flash's post that Kenn is talking about. I remember thinking "what a bunch of BS".

But on re-reading it later, some (repeat some) of it was plausible for a few (repeat few) people.

To me, the biggest problem was applying the ideas to all of us! Sorry Bub, it just don't work that way, so back to my original opinion - Bullshit!

Marc

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Bob P on Oct 29^th, 2002, 11:19am

Perhaps it's the longer you have CH, the more knowledgable you are of the conditon, and the more leary you are of claimed cures (especially since there is no cure).

Being stung (having a claimed treatment fail) cause one to become more cautious the next time we reach into the beehive.

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by don on Oct 29^th, 2002, 1:21pm

Heres some nut busting, mind wrenching honesty.

You are out of your fucking mind!

Quote:

In general, it can be said that the longer one has suffered from Cluster Headaches, the more that person will resist a cure.

Bull shit. Offer any sufferer here a bonefide proven cure and they will take it.

Quote:

That's why such a high divorce rate and high jobless rate. That's why such a high suicide rate.

Where you getting your facts from. Suicide rate is not high and the divorce rate is high CH or not. I dont witness any high jobless rate amonf CHers. In fact we work harder to maintain employment.

Quote:

That's why - when you tell a Clusterhead about a promising new treatment he or she will almost always have a sudden surge of mixed reactions deep inside.

Name the clusterhead that replied that way. Or are you generalizing your own opinion.

Quote:

stop the phoniness we generate

The only phoniness I see here is you. You seem to have convinced yourself that you are some sort of credentialed researcher. Are you? What are they?

You are generating a physical biological malfunction into a mental health issue. Are you qualified to do that ? I doubt it!

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by David Shea on Oct 29^th, 2002, 1:58pm

I had to read it three times because I could not belive I
was reading this bullshit...
I have never seen a nuro. and cannot say what my pain
is for sure. If I use the culster quiz as a Diagnosis, I'm
A clusterhead. Like I said in my pervious Post I have
been pain free for 6yrs. I'm now 47yrs. old. The pain
I had at 20yrs and 25 yrs. and all the other yrs. was not
from a tumor or sinus or pintch nerve. This fall my next
8 to 10 weeks will be complete hell. I left my work in
Nigeria early Oct. looking forward to 60days off. My time
would be consumed by Golf, travel and Friends.
Now this pain has me injailed in my home, for however
long cannot be said.. This guy should get a "Life"...
I question If he is looking for the ability to take a life....

Bob P. I viewed your video, Another's this morning and
wanted you to know I have the utmost RESPECT for you
and your work here God BLESS YOU!!

I have an appointment with a nuro. next week and after
everything I've read and viewed here I'm parying I'm
not a clusterhead..

God bless you all.
David

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by jonny on Oct 29^th, 2002, 3:49pm

Well, I guess I'll chime in now.

Hi Kenn, how ya doing Bro?, long time no see.

Im done.

....................jonny

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Ueli on Oct 29^th, 2002, 4:17pm

Quote:

In general, it can be said that the longer one has suffered from Cluster Headaches, the more that person will resist a cure.

Because the longer one has suffered from Cluster Headaches the longer one knows there is no "cure" and the more snake oil advertisement one has come across.

Quote:

That's why such a high divorce rate and high jobless rate. That's why such a high suicide rate.

This knowledge must come from his data base of 290 CH patients.

Quote:

That's why - when you tell a Clusterhead about a promising new treatment he or she will almost always have a sudden surge of mixed reactions deep inside.

At least my reactions are not mixed when I hear about a treatment with Chinese hanky panky, needle work enhanced Reiki (Quote Kenn: "acupuncture -- usually one treatment helps"). A new treatment should fulfill a minimum of reasonable criteria and not only be promising (money for the quack).
If your "AMAZING CLUSTER SECRETS" contain the secrets of ancient shamans and other psycho babble, please spare us.

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by SteveY on Oct 29^th, 2002, 5:39pm

Kenn,

I'm not quite sure what you are trying to say here.

Are you saying CH'ers manifest CH to avoid the reponsibilities of life?

Or are we weak people that can't cope with life, so somehow induce the pain to opt out?

Depression, an awful condition which you would choose over CH, can't say never had it, apart from begging to die when the full force of a CH hits.

Or are you just a complete thingy trying to sell a book to vulnerable people?

I smell a rat, or a snake?

Steve

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by SteveY on Oct 29^th, 2002, 5:43pm

My last post.

I did not say are you just a complete thingy? thingy?

I said thingy.

Is it censored?

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by SteveY on Oct 29^th, 2002, 5:46pm

I am sorry for wasting MB space here, but my word has turned into thingy again.

What words can you use, and what words turn into thingy when you post?

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Slammy on Oct 29^th, 2002, 6:01pm

Steve,

playing with your "thingy" too much will lead to blindness, don'tcha know? ;D

Slammy 8)

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by jonny on Oct 29^th, 2002, 6:29pm

Steve Dude,

Add a space between.....A-s-s-h-o-l-e

Thats how to beat the censore ;D

..................jonny

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by 2late on Oct 29^th, 2002, 6:38pm

steve, my wife uses the word thingy, knock that shit off & quit wasting space.......LOL .........2late

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by SteveY on Oct 29^th, 2002, 6:52pm

T W A T :o

Thanks Jonny ;D

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Charlie on Oct 29^th, 2002, 7:08pm

What a bunch of rectal apertures

Ashwholes.

Charlie

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Charlie on Oct 29^th, 2002, 7:21pm

I don't know, Kenn.

One thing I do know is that there is no evidence that CHers are more suicidal than anyone else. I also don't think there is anything so ethereal about our handling of this thing. I think most of us give even questionable methods a chance. We don't always talk about it. Just because you haven't painted yourself blue, pranced around a campfire playing the lyre, and chanting to the earth goddess, Gaia, doesn't mean CHers aren't receptive to new ideas. I don't think there are nuances to this kind of pain either. It just hurts like hell.

Charlie

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by BobG on Oct 29^th, 2002, 9:17pm

Ueli quoted Kenn up above about accupuncture...

Here's another quote from Kenn "So...with the right acupuncturist and/or the right chiropractor, you will find relief (if that's what you really want.)"

Please note the last six words.

And, IMHO The letter is very general. Substitute the words cancer, tuberculosis, lupus, hepatitis, the common cold, herpes, or any other disease and you get the same psychobabble. It's a one-size-fits-all amazing secret.

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Drk^Angel on Oct 29^th, 2002, 9:23pm

Kenn... You're a disgrace to the name. I should beat ya stupid with my keyboard, but I see that someone has already beat me to it.

Drk^Angel

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Charlie on Oct 29^th, 2002, 10:04pm

Somehow I missed the accupunture and Chiropractic stuff. Oops. Here goes:

Nobody will find serious relief for anything from this stuff. Accupuncture never seems to go away. Chiropractors may make you feel better for a time but then a back rub is nice They do not cure anything.

What's next? Psychic surgery or aroma therapy? This stuff is for people who have a fear of anything clinical. Do yourself a favor and find an MD.

Charlie

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Linda_Howell on Oct 30^th, 2002, 1:27am

He has two brains.
One is lost
And the other is out looking for it.

Linda H

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by don on Oct 30^th, 2002, 12:55pm

Quote:

"So...with the right acupuncturist and/or the right chiropractor, you will find relief (if that's what you really want.)"

Really want relief? Oh hell no!

I want to continue my little life time drama of pain that urges me to destroy all living creatures in a 50 yard radius.

I want to continue to see the Acupuncturist and have numerous little needles inserted in my face.

Most of all... I want to continue doing buisness with Home Depot buying spackle to fill the holes in the wall placed there by my cranium.

Relief? Oh hell no!

I haven't seen a request for Part 2 so spare us.

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by 9erfan on Oct 30^th, 2002, 7:53pm

I've never "resisted a cure"...I just don't believe that there is one! If you (or anyone) could prove to me that they had a "cure", I would be all over it. Even though I don't believe that there is any hope for my h/a's I still continue to try things that are recommended on this board.
I don't believe that the suicide rate is higher in clusterheads (unless the clusterhead lives in Seattle). ::)
As far as depression goes, I've had it....thanks to these damn h/a's everyday for almost 2 years!

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by David Shea on Oct 30^th, 2002, 8:17pm

9erfan,
Clusters and depression go hand n hand.....
Can any one delete this topic?????????
Saints Fan........

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Lori on Oct 31^st, 2002, 2:31am

What your post stated doesn't seem to fit CHers. I think you are off base on this one. I'm not an expert, but from what I have observed, these CHers don't fit your profile at all.

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by jimbo on Oct 31^st, 2002, 9:17am

Your village called, Their IDIOT is missing!

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by 9erfan on Oct 31^st, 2002, 10:19am

David,

SaintsFan?? Ugh! You're killin me! ;D
Although I am a fan of Aaron Brooks, he's the QB on my Fantasy Team!

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Tim_w on Oct 31^st, 2002, 5:58pm

First Kenn I think you are so dumb you think a baseball couch has wheels! You cant have C/H people with C/H are not that damn stupid ! I went to a pain clinic where they do acupuncture. they let me fill out all the paper work, and then said OH you get cluster headaches we cant help you ! As for depresstion , who wouldnt get depressed when you are afraid to go to sleep! Ill shut up now. Tim W

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Elizabeth on Oct 31^st, 2002, 6:25pm

on 10/29/02 at 01:08:26, Kenn wrote:

I got too far into the depressions to give a rip.... At least, CH goes and comes, while deep, long-term, suicidal depression is just continual hell!

and I'd pick depression over CH.
Better to cry for no reason than to cry while in pain.

and as so many of us have been told time and again:
"just pull yourself up by the bootstraps, you lazy bum!"
there's nothing like a know-nothing's advice to drive you over the edge....

on 10/29/02 at 01:08:26, Kenn wrote:

...the entire lifestyle becomes geared to survival of CH's through the use of the creative methods we adopt, often at the cost of whatever stands in the way. That's why such a high divorce rate...

me? I got divorced because he was an abusive not a very nice person, not because of my CH.

on 10/29/02 at 01:08:26, Kenn wrote:

We saw this first topic as a way for Clusterheads to explain their failures and societal dysfunctions..."I'm a failure because these headaches have wrecked my life, and that's the only reason!"

Failure: nonperformance of something that is due, required or expected; defect or fault; shortcoming; deficient or lacking.

To fail is to never try....

My opinion on your post? Only a jackass would blame the sufferer.

Lizzie

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Jabeen on Oct 31^st, 2002, 7:00pm

I feel like I am really missing the boat on this one-all's I know is if a cure came along, I doubt there would be anyone that wouldn't do it. I wouold definitely prefer PFDAN forever! :) :) :)

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by paul_b on Oct 31^st, 2002, 7:02pm

This post read like a DEPRESSED person explaining how he is working through his own life. It don't fit me baby. Try another avenue to explain your behavior.

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Lapsi_Harmaahapsi on Nov 1^st, 2002, 12:24am

Quote:

I think I would choose to suffer from CH's over clinical depression, hard as that choice would be. At least, CH goes and comes, while deep, long-term, suicidal depression is just continual hell!

You know they have pills for that kind of thing? Worked for me; I'm a shiny & happy person now.
My advice for you is to find a good shrink. If you really WANT help..?

Title: Re: Part One...AMAZING CLUSTER SECRETS
Post by Linda_Howell on Nov 1^st, 2002, 12:30am

I am so tired of seeing this post way up at the top of the postings.........

Can we now put a sock in it????????????

Linda Howell