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New Message Board Archives >> Jan-Mar 2004 >> Has anyone ever considered...
(Message started by: Carl_D on Jan 17th, 2004, 1:13am)

Title: Has anyone ever considered...
Post by Carl_D on Jan 17th, 2004, 1:13am
Videotaping going through a  cluster attack?
I think being video'd in such a matter would deem far more personal than a porno tape. Make sense?

Peace,
Carl D

Title: Re: Has anyone ever considered...
Post by Kirk on Jan 17th, 2004, 5:48am
Not sure I ever want to watch myself going through it.

TTFN

Title: Re: Has anyone ever considered...
Post by ave on Jan 17th, 2004, 5:51am
Good idea if anybody has the courage.

Personally, I don't have a video camera, nor do I get any heavy attacks (fingers and fungusses crossed).

Otherwise I'd do it like a shot.


Title: Re: Has anyone ever considered...
Post by brain_cramps on Jan 17th, 2004, 8:48am
got a 4hr tape?    ::)

About a year ago, this was discussed.  As far as I know, Jill had volunteered.  What happened after that point, I'm not sure.

grant

Title: Re: Has anyone ever considered...
Post by JDH on Jan 17th, 2004, 10:55am
I can definitely go w/out seeing myself getting hit and I really don't want to see it happen to anyone else again either.
Too painful.

Jim

Title: Re: Has anyone ever considered...
Post by hopefull on Jan 17th, 2004, 5:14pm
while having a 9/10 I tend to get panicy... watching it happen would make it worse I think...cause then not only to  feel it, I would have the visual pic to go along with it in my head......no couldn't do it...now if I didn't see it and it was for educating others.....might work ...I know it freaked out my one friend that saw me....NOW when I tell her I have a Headache she responds very differently to me than before...

Title: Re: Has anyone ever considered...
Post by thomas on Jan 17th, 2004, 6:21pm
thought clusterchuck's kid was workin' on it?

Title: Re: Has anyone ever considered...
Post by Little Deb on Jan 17th, 2004, 9:22pm
I hope I never go into cycle again.  But if I do, I plan on having my attacks taped this time.  I feel it is important for people to see.  And not much bothers me.  I kinda feel like after you have had a room full of people see you give birth, nothing is sacred.  Plus, being a nurse, I have seen it all.  So no biggy to me.  I don't embarrass easily.  I feel it is important if we ever do get media coverage someday.

Little Deb

Title: Re: Has anyone ever considered...
Post by Elaine on Jan 17th, 2004, 9:45pm
I thought about it and when I am getting hit grabing the vido and setting it up never went though my mind.

I came across a christmas vidio from years ag before I found clusterville. My daughter had the bright idea that sleep caused clusters so she and I stayed up all night Christmas eve and watched TV. The next morning we vidio taped us all opening gifts. I got hit. Everything stopped. Everyone went to work doing the only things they knew to do. Make coffee and get ice and sit and watch. My husband looks at me and said. If I could make those damn headaches go away thats what I would give ya for Christmas. Its a pertty good tape. It gets the beginning of a cluster but its turned off before I got to really fighting it. You can tell its bad. I watched it a couple of years ago and had forgotten I had it.

Title: Re: Has anyone ever considered...
Post by BlueMeanie on Jan 18th, 2004, 7:23pm
Why would anyone want to be reminded of such a thing ?

Title: Re: Has anyone ever considered...
Post by Elaine on Jan 18th, 2004, 10:07pm
I don't think any of us do BlueMeanie but man a attack shown on TV on a talk show or on the  news might get clusterheads noticed.

Title: Re: Has anyone ever considered...
Post by ClusterChuck on Jan 19th, 2004, 12:38am
I just found out very recently that back in the stone age, before I was diagnosed, and all the doctors were insisting that it was all a figment of my mind (I was nuts!).  My wife filmed me getting nailed to show the doctors.  They were shocked, when they saw it, and then started to search to find out what was really wrong.  They said that there is no way that can be psychosematic (sp?).

I just found out about that.  I never knew she did it.  I don't know if we still have that tape or not.

And, yes, my son is still planning his film project for school.  He is in the process of getting funding for it.  He still plans on doing it.  He is very excited about it!  He even has plans for entering it into various documentary competions, to get better exposure to it!  If he gets it there, he hopes to get it broadcast.  He has some high hopes, and he can do it too!

Chuck

Title: Re: Has anyone ever considered...
Post by jonny on Jan 19th, 2004, 6:56pm
I dont have a video but I snapped a pic just as I was going kip 10 in a rest area, snapped the pic, dropped the cam and paced around the truck right at the entrance to a Mcdonalds drive thru.....I got some looks ill tell ya......pic shows half my face ready to blow off......fuckin scary

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

Title: Re: Has anyone ever considered...
Post by Turts on Jan 19th, 2004, 7:13pm
I have taken some self photos already.  I had to put the camera against a mirror and line it up with my face to get everything in shot.

As I have posted earlier, the shadows are startin to roll in and Im begin to batton down the hatches in anticipation for the next round.

This time round I will be getting a camera set up in my room, so every night I take footage of what happens. The moments before waking to see if sleep becomes restless or if sponteneous waking with HA.

Then I was going to get my sister to tape the dancing around the house, before the last minute desperate dive into the 2am shower.

Then depending on the KIP the headbanging on the shower tiles and the punching of the head, right through to the exhausted collapse on the bed, half naked, dripping in water with the fan on full blast.

Should make for some interesting viewing.

Ever since coming to CH.com and OUCH have become very interested in the science of the CH.

Have always been interested in how my eyes look and the swelling of the face while in an attack and how the seem to dissapear holding the beasts hand as he is beaten


Turts




Title: Re: Has anyone ever considered...
Post by thomas on Jan 22nd, 2004, 5:18pm
Thought the beast was comin' back two nights ago, melatonin knocked his ass back down though..... was lookin' for a vid camera though......

Title: Re: Has anyone ever considered...
Post by Carl_D on Jan 22nd, 2004, 11:08pm
The reason I mentioned this is, sure - we all know what it's like to suffer a CH, and we all know how frustrated, angry, despondent we can get during an episode. However, it would definitely be an excellent teaching tool for both the medical comunity and the unknowing public.
I remember JD said he was wanting to make a CH documentary. Why not show people 'why' you can't lie down during an attack.
I have fantasized about my book being turned into a movie long before Jonny mentioned it. That would both be a success for me as a writer, and thus would launch my career.
For me to sell the rights to have the movie made though, I want some directive input; as far as filming scenes of Wyatt in an attack. That is my only stipulation. (Thinking of sending a manuscript once it is finished to both Lawrence Kasdan.)

Once again I have marked a deadline for "Snapped" to be finished, and if I continue at the rate I am now going..it wil be inked by spring. I also hope to have it edited by then too. After that, I wil be seeking champions to help with the initial pressing - a limited edition, while I shop it to both agents and publishers. Anyone know of an 'in' who might be able to help?
With some of the embittered failures I have had lately - would be nice to succeed with someone for the CH comunity.

Peace,
Carl D

Title: Re: Has anyone ever considered...
Post by RichardN on Jan 22nd, 2004, 11:50pm
 I can do a Kip 0 - 9 in about 1 1/2 min.  Narrative required.   Acting, you know.  Clusters are in my resume, and probably cost me the best shot at stardom I'll ever have.  You see, after getting the director call back for this major role, when asked (by the director) about the clusters, I had to go on and on about the help available for this god-awful condition and my relief from the symptoms.  I also wanted to give my character clusters......would have worked.   Had a really rotten December/xmas season..............why?  The role was THE bad guy in COLD MOUNTAIN.  The pay all the bills/build a new house job of a lifetime.  A month in Romania (there's no snow in the Carolinas in Sept.).  

  Sorry..........had to get that off my chest.

    Richard

Title: Re: Has anyone ever considered...
Post by Carl_D on Jan 23rd, 2004, 2:15am
I can relate bigtime Richard. I have lost many-a-job, been kicked out of bands I formed, you name it.
The bigtime shot it cost me hurt badly. In September of '98, I was offered th position of lead guitarist for a prominent metal band called "Anthrax." The bitch of it was, I became chronic in February of '98 with clusters, and it cost me the gig. That hurt me more than anyone around me knew. I just shrugged it off while inside I was choking.
People around me cannot relate to what I have been through with CH, and that is probably why I vent here instead of to everyone else. CH.Com is my refuge!

Peace,
Carl D

Title: Re: Has anyone ever considered...
Post by Timmi on Jan 23rd, 2004, 2:40am
I've seen myself in the mirror durring a CH.It ain't pretty. :o

Title: Re: Has anyone ever considered...
Post by jminmilwaukee on Jan 23rd, 2004, 4:39am
Although not scientific and I know its been said before...Watch the movie PI if you have the nuts.

Closest thing I have ever seen to clusters, scary as hell to watch the main actor get hit....too close to home.

Anyone I have know personally who is REALY interested in what it is I used to go through gets the PI recommendation. Of course they all then look at me in a "strange" way after viewing the video.

jmin

Title: Re: Has anyone ever considered...
Post by Turts on Jan 23rd, 2004, 5:37am
As i posted earlier, I am keen and willing to tape an attack, I have a natural interest in it anyway.

Also I work for the biggest print co. in Australasia. We have brother companies in Publishing. I could start to spread the work and try find a door in.

Have you ever heard of Griffin Press. We have associations with them also.

I'll try and help...


Turts



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