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        New Message Board Archives >> Jul-Sep 2003 >> all different
        
(Message started by: hopefull on Jul 21^st, 2003, 10:41am)

Title: all different
Post by hopefull on Jul 21^st, 2003, 10:41am

It was my understanding no 2 persons cluster headaches were the same...in duration or cycle but that we all here have them in some form or the other and we all agree they are devistating ...I've had a headache of some form or another everyday since I was 18 now I'm 46...I'm very surprised at what I see as non-supporting messages thrown back and forth...does it realy matter ....that we aren't all the same or handle it the same... but that we understand one another...sometimes all someone in pain needs is ..."I understand what your feelling hang in there"

Title: Re: all different
Post by stuey on Jul 21^st, 2003, 12:16pm

Hopefull this is just my feeling but I will share it. CH may vary in duration of attack, season, intensity, etc., there are certain characteristics that CH sufferers all share that are unique to CH sufferers. Migraines are not CHs. An attack once a week is not a CH. CHs wake you from your deepest sleep, and follow you around daily. I don't know that people here are unsupportive, just perhaps feel that some people who come here are not CH sufferers. If you take the test and do not have the common denominators then you don't have CHs. And there are common traits CH have that others do not have. If you have migraines there are sites for migraine sufferers. They are not the same thing. One headache a week does not constitue a CH. It is as if some people want to for some reason say they are CH sufferers when they aren't, for some reason wanting to say their headaches are as devastating as CHs are. The support here is for CH sufferers, not for headaches that every now and then may somehow mimic them. These are my own personal feelings though others may feel differently. And yes to me it does matter.

Title: Re: all different
Post by hopefull on Jul 21^st, 2003, 12:21pm

I've had head aches since 18 and a neuro last month told me they were cluster headachs I had been haveing all these years the MD's just didn't know what they were...so I'm not just someone with a headache!

Title: Re: all different
Post by forgetfulnot on Jul 21^st, 2003, 12:31pm

hopefull said
Quote:

I've had a headache of some form or another everyday since I was 18 now I'm 46.

That don't look like once a week to me. ::)

Lee

Title: Re: all different
Post by stuey on Jul 21^st, 2003, 12:34pm

I'm not doubting you. I just think that everyone seems to want to feel their headaches and the pain they suffer are the most intense. I have had migraines and they are not pleasant but they aren't clusterheadaches. CHs can be differentiated from other headaches because of certain characteristics. If someone doesn't have those traits they don't have CHs. If I have kidney problems I'm not going to go to a liver specialist. This is just my feeling. I don't profess to being the most qualified to speak, just saying how I feel about things.

Title: Re: all different
Post by hopefull on Jul 21^st, 2003, 12:37pm

I guess because i know what i feel like I have an easier time sympathizing with anyone who has a headach of any kind...who knows they might have clusters and the Dr. just isn't educated enough to know it....

Title: Re: all different
Post by stuey on Jul 21^st, 2003, 12:37pm

Wasn't referring to him Lee. It's what I've gathered from many other posts since I've come here. Thanks for pointing that out but I read his post.

Title: Re: all different
Post by hopefull on Jul 21^st, 2003, 12:40pm

If him is me i'm she!

Title: Re: all different
Post by TomM on Jul 21^st, 2003, 12:40pm

So let's name the characteristics:

1) Burning poker in one eye.
2) Nasal congestion.
3) Droopy eye.
4) One side.
5) Intense pain no longer than 3 hours.
6) Cyclic--same time every day for days...weeks...
7) Usually more than one HA per day.
Others?

TomM

Title: Re: all different
Post by stuey on Jul 21^st, 2003, 12:46pm

Forgive me Hopefull didn't know.

Title: Re: all different
Post by hopefull on Jul 21^st, 2003, 12:47pm

mine for the past 2 years seem to never stop completely...It's like an ice pick being driven into my eye and a chisel being pounded into the back of my head with a sledge hammar..my lips go numb my face hurts like hell and my neck gets so tight i can hardly turn my head....and thats just a bad one...not my worst....

Title: Re: all different
Post by hopefull on Jul 21^st, 2003, 12:49pm

*smile* no problem stuey!

Title: Re: all different
Post by cathy on Jul 21^st, 2003, 12:54pm

Stuey, I have to completely disagree with you on one point, when wes had his first cycle of CH he was hit ONCE a week on a Sunday at 10am this went on for 8 weeks, he didn't get hit at night, but he had all the characteristics of clusterheadaches, over the last 5 years his cycles have become more consistent attacks day and night twice a year lasting about 10 weeks. So in my opinion you CAN have a CH once a week, although this may not be common, it most certainly WAS NOT a headache.

Cathy

Title: Re: all different
Post by stuey on Jul 21^st, 2003, 12:54pm

I just hope you find the help you need. A good, understanding, knowledgeable neurologist. I'm on 960 mg of verapamil and 100 mg of Elavil and it's helping me. Pain free for 48 hours. Others are taking verapamil with Lithium, some with neurontin, some take depakote, etc. What works for me might not work for you but I hope you find relief. Great information on the site. I take imitrex or relpax to abort but am interested in the frovatriptan. I am also interested in Topamax which is an anti-seizure but which I hear can also prevent CHs. I didn't mean to sound insensitive if I sounded like that, sorry. Peace. Stuey

Title: Re: all different
Post by stuey on Jul 21^st, 2003, 12:56pm

Cathy I didn't know that. Can say I was wrong if I'm wrong. Stuey

Title: Re: all different
Post by cathy on Jul 21^st, 2003, 1:01pm

Stuey you can say whatever you like, you weren't wrong necessarily just not aware. :)

So go on then say you were wrong... ;D

Hopeful, sorry how rude of me....Hi and welcome PF times to you.

Cathy

Title: Re: all different
Post by hopefull on Jul 21^st, 2003, 1:13pm

Thank You Cathy!...Back at you PF

Title: Re: all different
Post by don on Jul 21^st, 2003, 1:17pm

Quote:

Stuey you can say whatever you like, you weren't wrong necessarily just not aware.

NO, Stuey was wrong and should pay a steep price for not being correct on CH.com

The suggestion box is open.

Stuey your in deep shit.

Quote:

I'm very surprised at what I see as non-supporting messages thrown back and forth

How did you come to that conclusion?

Title: Re: all different
Post by hopefull on Jul 21^st, 2003, 1:24pm

I picked a message up on a surgery and there just seemed to be some negative stuff there...I believe in being able to disagree and still getting along...you know agree to disagree...I just hurt to much most of the time to put any energy into being mean spirited...I don't like to argue...it doesn't make anyone feel better...Make someone laugh or smile....make their day...thats med everyone can use....corny I know but true!

Title: Re: all different
Post by cathy on Jul 21^st, 2003, 1:28pm

???

As for Stuey...
Get Mike_P onto him.... ;D

Cathy

Title: Re: all different
Post by hopefull on Jul 21^st, 2003, 1:29pm

cow?

Title: Re: all different
Post by cathy on Jul 21^st, 2003, 1:33pm

Don wanted a dead cow, sorry another post...don't worry about it... ;D

Cathy

Title: Re: all different
Post by Ted on Jul 21^st, 2003, 1:48pm

on 07/21/03 at 13:24:38, hopefull wrote:

I just read through that thread again and didn't really see anything very negative there. There was questioning of the procedure and a discussion on the dangers of most surgeries for CH. But that happens here often. We're trying to find answers too and if someone mentions a method to us we'll analyze it and question it. If we don't someone can get hurt. And I know if I don't find out answers I may have I wouldn't be willing to try anything new. I didn't see anyone getting negative about the procedure, unless asking questions is negative. Or trying to avoid the "you think you've had it bad?" conversation from setting in is.

Title: Re: all different
Post by hopefull on Jul 21^st, 2003, 1:54pm

asking questions is not negative and i certinly understand willing to do most anything to stop the pain...maybe i was miss reading it...I think we all agree we have it pretty bad...somedays you want everyone out there to know just how bad you feel so you know your not alone...for me if i don't stay focused on the positive I wouldn't be able to be in this world...It's getting harder and harder...

Title: Re: all different
Post by Ted on Jul 21^st, 2003, 1:56pm

We'll try our best to make it easier and easier.

Title: Re: all different
Post by Charlie on Jul 21^st, 2003, 6:06pm

Quote:

I picked a message up on a surgery and there just seemed to be some negative stuff there

Well....The archives are full of cranks, crackpots and larcenous bottom feeders whose surgery ideas are at best, useless, often dangerous and perhaps lethal. We like to get things clear so others don't run off and try something that's a waste of time.

Charlie

Title: Re: all different
Post by homealone on Jul 21^st, 2003, 7:56pm

I understood not everything works for everybody...but what doesn't work for you might work for me...and somethings work some of the time...then you have to change....never-ending story of meds...

Title: Re: all different
Post by forgetfulnot on Jul 22^nd, 2003, 12:40am

forgetfulnot see's no need to finish the thread. Although the original poster had an original idea,

Lee

Title: Re: all different
Post by Ted on Jul 22^nd, 2003, 12:49am

Very true Lee. Except to point out that "Home alone" just said "works for me" and not "works for my daughter."

Title: Re: all different
Post by Kirk on Jul 22^nd, 2003, 1:16am

Him or her?

# /usr/bin/perl -w
/(b | b [b{b^2}] ) -n

To quote Shapespeare.

TTFN

Kirk

Title: Re: all different
Post by Cendie on Jul 22^nd, 2003, 2:58am

I just posted about a Time (Europe) article last november that said docs are starting to redefine what constitutes headache terminology... When you crystallize your thinking about what is, and is not X headache, I think you've accepted the BS the docs have been putting forth for years, if it were up to them, we'd all be in mental wards.

I've been walking around with a headache since the 9th of July. I've had about 48 hours totally pain free since this thing started. I think the base of this headache is migraine, however, it's spawning cluster attacks. I'll just be in pain most of the day and then all the sudden outta nowhere this amplifies to an ungodly degree, the ice pick that has just been quietly resting in my left orbital gets hot and starts stabbing, my nose starts running, my eye starts tearing, and in this moment.. I'd rather be dead, this intensity lasts about half an hour. I know migraine, and this is not a migraine.

I'm sure that doesn't fit into anyone's text book but it's what I'm experiencing, and I'm just here looking for answers, like most of the other newbies.

I know when my boyfriend tells me he has a headache, Sometimes I laugh on the inside and think... you don't know what a headache is... however... he is in pain, it's not my pain, but it is still pain and I try to accomodate him and not patronize him based on my experiences.

I know how easy it is to be mean to people when I'm in pain, and it's even easier to be mean to those anonymous internet people, but you guys are scaring me! ;)