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        New Message Board Archives >> 2002 Posts >> New & Confused
        
(Message started by: FransGirl on Nov 6^th, 2002, 1:19am)

Title: New & Confused
Post by FransGirl on Nov 6^th, 2002, 1:19am

I am new here and am very confused. My girlfriend/fiance' is a sufferer of these "Cluster Headaches" She told me about having them but until today I did not see her have one. I couldn't hardly believe it when I saw the pain she was in. She screamed that it hurt and her upper torso came up off the bed...is this normal? Is this the way that all of the other sufferer's are reacting? I couldn't really believe it. I have never seen anyone cry for an hour straight from a headache before. It almost seemed exagerated. And now that I read all of these posts where people are banging their heads into walls or on floors....or with telephone receivers to rid their head of the evil demon that lurks bearing all the pain I could not believe it. I felt helpless seeing her lying there begging for help and yet I could do nothing for her.
Please help me to understand what my have worked for some of you other sufferers to rid the pain or at least ease it....willing to take any and all advice....or remedies....
much appreciation.....
kellie

Title: Re: New & Confused
Post by marty on Nov 6^th, 2002, 1:58am

Hi there Kellie...

Both of you need to read, read and read everything there is on this board. There is a so much information, tips and suggestions - and all of it is valid, since it was put there by CH'rs from all over the world.

The pain from CH is very real - so are the sleepless nights and feelings of being helpless and scared. Do we cry - well at least I do when hit...

My advice to you is: Talk to her about what she wants you to do when she gets hit and what she does not want from you. If you ask her when she is being hit - expect to be insulted or worse.

Take the Cluster Quiz, check out the archives - check it all.

Tell us about what medications she uses, what about emergency blockers like Imitrex etc.

Don't forget to look at the OUCH web page (linked on the left side).

Here you will find some of the greatest people and they will all be here for you when you need them.

You are not alone!

Marty

Title: Re: New & Confused
Post by Ted on Nov 6^th, 2002, 2:00am

They're real. They're as real as you get. If her upper torso came up off the bed then that means she's lying down during it. One of the things we learnn (the hard way) is that lying down makes it hurt more. Have her sit up. Nothing you saw was exagerated. I can't talk for your woman but I don't care if she's someone who whines and seeks attention when a nail breaks. But if she really has clusters, she is not exagerating for a moment. This ain't a "headache." This is evil trying to teach you what evil is. It's molten lava being jackhammered into your fucking head. But it is not a headache, though the name calls it such.
O2 is a good abortive. Verapamil at doses at the very least of 360 (and adding lithium helps) is beneficial. Shrooms don't suck for help either.

Title: Re: New & Confused
Post by Jabeen on Nov 6^th, 2002, 6:15am

Hi! I was married for over 20 years when I first got hit with these things so neither of us were prepared to deal with it. I had 3 children with no anesthsia (11 lb. babies) and that was a cake walk compared to these headaches. My husband had no idea what to do for me-and as the weeks passed, the intensity increased. I was up all night with unreal, unrelenting pain. I was fortunate and found help rather quickly. I didn't realize how "lucky" I was until I came here and read all the horror stories of people that have suffered for decades-day and night. She is not exagerating and she needs support. Good luck-

Title: Re: New & Confused
Post by krashr31 on Nov 6^th, 2002, 7:36am

The best advice i can give is to listen to the above advice. most importantly don't hold her accountable for things she may say during an attack. Most people want to be left alone to deal w/ the pain. you should ask her what she wants you to do before hand so there are no uncomfortable situations. Unfortunately Kellie there is little you can do for her, except being understanding.

Title: Re: New & Confused
Post by Margi on Nov 6^th, 2002, 10:23am

Hi Kellie,
You've sure gotten some good advice here, especially from Marty and Ted. I'm a supporter too and it's absolutely horrific to have to watch and be totally powerless to help. It's a feeling that only other supporters can understand, just as the pain is something only other sufferers can understand. We can't fathom the pain they go thru, but I assure you it's very real.

I've seen my husband run a table saw thru a finger and blow it off like it was nothing, even WHILE he was getting stitched up. But a cluster? takes him to his knees, honey. These clusterheads are the toughest people on the face of this planet. They have to be.

So, yes, by all means, believe her when she says she is in violent pain because she really is. Ask her (when she's not in pain - if you do when she's getting 'hit' be prepared to not like her response) what she wants you to do for her. Does she want you to bring her an ice pack (frozen peas or corn also help)? A glass of cold water? Rub her shoulders?

The biggest gift you can give her is to sit her down here and let her read what other folks just like her go thru. It helps us all, sufferers and supporters, to know we're not alone with this beast. Keep talking, Kellie and feel free to post over at the Supporters' Forum too. Lots of us here understand what YOU are going thru during cluster attacks, too.

Title: Re: New & Confused
Post by echo on Nov 6^th, 2002, 10:51am

Can't add much to what has already been typed. Will chime in with "It's not an act". Give her space, give her support, give her water, give her O2. The two of you need to sit down and discuss your supportive options.

Title: Re: New & Confused
Post by David Shea on Nov 6^th, 2002, 4:02pm

Frans girl,
Yes the pain is very real, Will bring A big man to his knees. See A neurologist, study the medical infomation here, in all probabilty you will have to educate the people you are seeking help from.
I've just left the Neuroligist office one hour ago.
My doctor was familia with CH, SOME ARE NOT.
WELCOME!
David

Title: Re: New & Confused
Post by Linda T on Nov 6^th, 2002, 4:13pm

Dear Kellie: yup, they're real. I agree that you should talk to her about how she needs your support. I prefer to be left alone but that's not for everyone.

There are alot of tips on this board to help ease the pain - you can read all about them. But to give you some ideas - I prefer a really hot shower. If I can get into the shower fast enough it will abort the ch. Some people prefer icepacks or anything really cold. Caffeine (hot and lots of it) works for some. Excercise, moving around, anything strenous, works for some. Lying down - not good. Before I knew better I used to lie down and sometimes I would get hit for 2 or more hours. Now I move around alot and it seems to pass quicker.

Good luck and keep us posted.

Wishing you all PFDAN always, Linda T

Title: Re: New & Confused
Post by eyes_afire on Nov 6^th, 2002, 5:38pm

Hi Kellie. Unfortunately, it's true. These things are tormenting beyond belief. Ted's advice is right on. A good neuro who will go to bat for you is helpful as well.

Title: Re: New & Confused
Post by Mark C on Nov 6^th, 2002, 6:21pm

Even I have to agree with Ted on this one, langauge is a barrier when attempting to describe to pain of CH. Hell I enjoy a "regular" headache, just for fun. The group of folks here are amazing, varied, but amazing. I like the term "Clusteropolis". Its all here.
Kellie, I attached a link with some good support info, check it out along with as much of this site and the OUCH site as you can stand. Help is here. Good luck.
Mark

http://www.clusterheadaches.org/family/fam_tips.htm

Title: Re: New & Confused
Post by Ree on Nov 6^th, 2002, 8:22pm

JUST BE THERE... I told someone that said they have never witnessed one last night the first time I saw one I wanted to run for the f'n hills... Very descriptive Ted... it was painful to read that... Good luck Kellie and keep coming here we have a board for supporters too... ree

Title: Re: New & Confused
Post by Charlie on Nov 6^th, 2002, 8:46pm

Believe everything she tells you. There is nothing with which to compare cluster headache pain. It's pain magnified and she is not exaggerating. In fact it's so bad that even she cannot express its severity. It's worse. The only thing about CH is that it isn't fatal.

Ted & company said it all.

Charlie

Title: Re: New & Confused
Post by Drk^Angel on Nov 7^th, 2002, 2:23pm

Welcome to the board! Sorry that the beast is crushing your sufferer's cranium in the gravitational force between two colliding stars, and roasting it in the supernova it creates. Good luck!

PFDAN.................................. Drk^Angel