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        New Message Board Archives >> Jul-Sep 2003 >> help my friend to understand
        
(Message started by: nasus on Aug 21^st, 2003, 4:08pm)

Title: help my friend to understand
Post by nasus on Aug 21^st, 2003, 4:08pm

hey!
i would like for y'all to do something for me...

describe what you go thru during an attack and any experiences you had with people who didn't understand

also, for supporters, write of the sacrifices you may have had to make to help with the person are caring for

thank ya
sue:^)

Title: Re: help my friend to understand
Post by Cooked Brain on Aug 21^st, 2003, 6:31pm

if banging your head on the walls, crying and tearing out your hair doesn't tell the story nothing will...

Title: Re: help my friend to understand
Post by ShariRae on Aug 21^st, 2003, 7:21pm

They aint called suicide headaches for nuttin :(
Is a sad fact....

Shari

Title: Re: help my friend to understand
Post by Miss_Deleny on Aug 21^st, 2003, 7:22pm

Best advice I can give you is have your friend come here and look around. My man has CH and I knew they were BAD but until I came here and looked around, I didn't realize how bad they could actually get. :'( He hasnt had them so bad that he bangs his head against the wall but he said that he has thought about it a time or two. :'( This site and the links to the left would most likely help alot more than trying to get everyone to describe what its like. They helped me understand alot better.

~April~

Title: Re: help my friend to understand
Post by Cooked Brain on Aug 21^st, 2003, 7:28pm

not to forget the swearing, the cursing, the begging, the rolling over the floor, squeezing your head, the despare, the anger, the FURY you have against the beast :'(

it's not easy, but we get by, being strong is part of the deal...

Title: [url][/url]Re: help my friend to understand
Post by JDH on Aug 21^st, 2003, 8:55pm

Without getting into the gory details of personal experience, like breaking your hand punching the wall or beating your head on the tile floor or sticking your head in the snow looking like a total idiot, I like to show people this
http://www.ouch-uk.org/ch/note_colleagues.cfm
to help them understand what it's all about.

Jim

Title: Re: help my friend to understand
Post by Melissa on Aug 21^st, 2003, 9:07pm

well, my attacks usually wake me from sleep, and the first thing I notice is my right nasal passage running and feeling like someone shoved dry ice up it. Then the pain intensifies. The only way i can describe the pain, is like having a foot tall gargoyle with long sharp pointy teeth slowly gnawing away at my temple while he stabs me slowly with a twisted claw into my eye socket, eyebrow and upper jaw. It stays this way for approx. 50min, then like instant relief, it's gone.

As for people who don't understand, I usually try to explain it to them, and when they still don't get it, I pretty much let it go. It's a complicated condition, and you can get oxygen depleted just trying to get it through their heads! ;)

Hope this helps!

:)mel

Title: Re: help my friend to understand
Post by ksmiggy on Aug 21^st, 2003, 9:33pm

I think my worst experience was, getting an attack in the town centre, staggering along the road, opening half an eye for a split second,not quite sure where i was heading, hearing people comment how digusting it was to be that drunk that early, fortunatly a friend saw me, guided me to a bench, stayed with me, but wasn't nice hearing the comments, assumptions, just wanted to start screaming that i wasn't drunk and needed help, didn't have the energy or see the point though.

Title: The Pain Is All
Post by rumplestiltskin on Aug 21^st, 2003, 9:54pm

Posted by Dennis O'C (209.34.0.48) on February 05, 2000 at 04:22:30:

In Reply to: Weekend Topic begins! posted by Mrs. Holloman on February 04,
2000 at 07:37:23:

If you don¹t get a clear picture of a Cluster Headache from what I am about
to say...I¹ll understand. Before I had one I would certainly never have
believed that pain like this was possible to have...and live through.

At the Cluster Headache¹s height, my whole being, body, mind, and soul are
filled with a seemingly endless, helpless, desperate, cry of "NOOOO" as if
at once I had lost my child, my wife, and all my loved ones because of some
stupid accident that I had caused. This desperate moment may last over an
hour for me. Not that I am responsible for the pain in any way...I¹m just
trying to describe the depth of despair my Psyche reaches.

THE PAIN IS ALL...The worst toothache of my life grew and festered while I
was in jail. Days and nights of unmedicated, unrelenting ever sharper
blinding pain, the begging to the uncaring guards, the banging of my head
against wall, bed frame, and bars finally culminated in my being strip
searched, shackled and transported like a rabid dog to a room with a chair
to which I was handcuffed...arms and legs....no anesthesia.

I can still feel the man¹s knee on my stomach and the pressure of his left
hand covering and roughly pushing unmercifully against my face as the
unyielding tooth refused to be pulled.The muscles of his upper body shook
from the tension as he pulled again and again on that tooth.The pain and
terror and helplessness took me to the edge of consciousness as the molar
finally shattered and each of the three roots were dug from my head. The
man¹s fury and frustration were repeated with each stubborn piece.

When a Cluster peaks, it feels as if not one but each of my teeth and every
root, top and bottom on the left side of my face are once again experiencing
THAT pain...unfortunately so is my eye socket,temple,forehead and even top
of my head...each with it¹s individual spiking...all at the same time.

You probably think that with that much pain I¹d be writhing on the floor,
unable to stand, that I¹d be screaming and crying...you would be right.
DEN

Title: Re: help my friend to understand
Post by Charlie on Aug 21^st, 2003, 10:35pm

Glad you found us but sorry you needed to.

The others have done a terrific job. I'm posting the link to Simon's letter which does a great job describing CH to friends and families. It's definitely worth a look.

http://www.ouch-uk.org/ch/note_colleagues.cfm

Charlie

Title: Re: help my friend to understand
Post by cootie on Aug 21^st, 2003, 11:20pm

sacrifice of as a supporter.........'life as we know it'

Pam that hates change

Title: Re: help my friend to understand
Post by OneEyeBlind on Aug 22^nd, 2003, 9:07pm

It has been long enough for me to forget since I had my last cluster attach. I thank God and this board for getting me through my first cycle. I am praying that I am on the 96 year plan ........... won't have them for another 96 years !!!!!!!!! Let me just say they were painful enough for me to still be around now, when although the clusters ended in October. It's something you never forget, and pray that you never go back to. My heat still breaks with every new post I read on this board. I remember what it was like.

Nan who wants to stay pain free forever !!!!!!!!!

Title: Re: help my friend to understand
Post by Opus on Aug 22^nd, 2003, 9:22pm

I told my friends what I had and what it was like and I never heard from them again.

Guess they thought they could catch it.

Opus/Paul

Title: Re: help my friend to understand
Post by athos12 on Aug 23^rd, 2003, 12:10am

yes were are rather infectious group....

Careful I think that there is a binary agent as well

Title: Re: help my friend to understand
Post by Carl_D on Aug 23^rd, 2003, 12:30am

Lemme see...oh yeah, I remember now...

Beating my head on the floor and screaming violently.
If I had a gun, I'd blow my fucking brains out, not to commit suicide, but just to make it stop. Good thing I don't have a firearm. Wouldn't be my first attempt, but most likely would be my last.

Carl D

Title: Re: help my friend to understand
Post by daveengland on Aug 23^rd, 2003, 5:06pm

i always feel , whenever i'm squeezing and twisting my head,that an extra hand to press the other bits would help,(does that make sense??) ??? ???

oh...and i,d like to put an electric drill through the bit where my jaws come together

...and pull my head as far forward as it will go and just cut it off at the base of my neck

i,d do anything to release the pressure

take care

dave

Title: Re: help my friend to understand
Post by stevegeebe on Aug 23^rd, 2003, 5:37pm

Sue,

I feel that part of the tightness of this group is because we all know exactly what it feels like and have a hard time explaining what we actually go through to others. It's sometimes unexplainable. You usually loose them early in the description.

We all know, and this common experience unites us together like very few things can.

It hurts real bad...real bad.

Steve G

Title: Re: help my friend to understand
Post by daveengland on Aug 23^rd, 2003, 5:44pm

amen to that

and knowing that you're not mad,it is a medical condition that can be defined and treated(yes/no?),and
there are other people go through EXACTLY the same shit as you

you're not alone anymore

PFDAN's to all

dave xxxxxxxxxxxxxxxxx

Title: Re: help my friend to understand
Post by taraann on Aug 23^rd, 2003, 7:02pm

I tend to press the spot with the most pain really hard either with my fingers, with an ice pack or with something close by (example: remote control, phone)...lately most of my pain has been behind my right eye (before the bulk of it was in the back of my head) so not only is my eye all red and droopy from the CH's but it looks like I got punched in the eye (not black and blue but very swollen) and I pace a whole lot or rock my body when in a CH I also tend to stick my head over the a/c.....