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        New Message Board Archives >> Jan-Mar 2003 >> re: CH and CPH
        
(Message started by: juvy on Mar 3^rd, 2003, 7:21am)

Title: re: CH and CPH
Post by juvy on Mar 3^rd, 2003, 7:21am

Hello Everyone,

I once posted a long time ago under the Nickname Juvember (for some reason i can't access that account anymore). At that time my Neuro was pretty much clueless. (in my opinion he still is). He assumed i had CH. So i found a home here until i realized my symptoms weren't the same as CH and thus left to wander through life searching.

My question is, is this board CH only or can someone with CPH join?

I've tried to find other chats/Messageboards for CPHers but alas i can't find one that works. I was finally diagnosed with CPH in December and that was just because Indomethacin works on my head pains.

So if i don't belong here, but some of you have a suggestion as to where i can go, i'd greatly appreciate it.

Cheers,
Juvy aka Juvember

Title: Re: CH and CPH
Post by Bob P on Mar 3^rd, 2003, 9:02am

Said it before and I'll say it again. Anyone who has these kinds of headaches and doesn't try indomethacin on the chance that it may be CPH (especially the ladies since CPH is more of a female disorder) is NUTS!

Title: Re: CH and CPH
Post by eyes_afire on Mar 3^rd, 2003, 6:33pm

Hi Juvy. I'm so glad you found some relief :). Sorry, I don't know of any CPH message boards. I think CPH is rare also.

Title: Re: CH and CPH
Post by tanner on Mar 3^rd, 2003, 10:14pm

hi juvy, wow 52 reads and no one seems to want to answer your question!

well i will since i am no one special here and have nothing to lose. (what are they gonna do give me headaches)

in my own humble opinion you definately belong here. i mean you are a member of the "why me" pain family ain'tcha. you are an obvious supporter of clusterheads and i just know you are going to head on over and join OUCH maybe even buy a shirt or two (just add a P in there and your good to go.

seriously i can't imagine how support and cooperation between chronic pain sufferers can be a bad thing.

hi there, i'm tim

Title: Re: CH and CPH
Post by Frank on Mar 3^rd, 2003, 10:37pm

I agree... What tanner said :)

Title: Re: CH and CPH
Post by Charlie on Mar 3^rd, 2003, 11:24pm

As far as I'm concerned you're welcome. Anyone with some kind of nasty paiin syndrome needs a place to unwind.

Stick around and contribute. You might learn someting good here and so might we.

Charlie

Title: Re: CH and CPH
Post by juvy on Mar 4^th, 2003, 1:02am

In that case, I'll stick around until i'm booted out the door. ;) Guess I should give more vital info about myself.

Name: April
Age: 24
Fiance: Santosh
Sex: Female

I've been suffering from CPH now for about 3 years. I wasn't diagnosed until December 2002, when the Indomethacin Retard 75 gave some relief. Last February the Neuro thought i had CH so i've done a lot of research; although i will still like to do more.
I've found that mint tea helps with the frustration and relaxes my scalp when the skin gets tight from the pain in my head. I usually use it in combintion with my Orca tape. (before Indomethacin, it kept me from killing those around me who asked if i had a headache and would i like some aspirin).
I have been diagnosed with very slight arterial brain damage to the right lobe of my brain. (just proves something my brother has been trying to tell me for years :P) Neuro doesn't think it's too serious.
I also suffer from insomnia which they at first thought was causing my head pain.

I have 5 brothers and one Sister, 3 nephews and one niece. My sister and mother suffer from migrains. My neice who is 8, suffers from epilespy, CVS (Chronic Vomiting Syndrome), and i think she may have CPH as well.

Pet wise i have a rabbit, Tyke, two turtles, male-Junior, Female-Little Bitch (LB), and two bottom feeders Marge and Homer.

And thats probably more info then most of you wanted :)

Cheers,
April

Title: Re: CH and CPH
Post by eileen on Mar 4^th, 2003, 7:41pm

??? May sound stupid but what does CPH stand for???

Eileen

Title: Re: CH and CPH
Post by jonny on Mar 4^th, 2003, 7:51pm

April,

Most people think I run people off that dont have CH and I do for the most part cause they dont belong here.

CPH is a part of the CH family so it looks like you are a part of this family, just do me a favor and help out anyone that shows up here with CPH. It would mean alot to them.

Welcome to the family, April.

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

Title: Re: CH and CPH
Post by Donna on Mar 4^th, 2003, 8:12pm

neener, neener, neener, jonnys getting mellow. :-*

Title: Re: CH and CPH
Post by Ueli on Mar 4^th, 2003, 8:43pm

I am somewhat opposed to Tanner, Frank and Charlie; this message board is not intended as catch-all for every case of head- or other pain. :o

However, I'm with jonny, welcome April :)

For Eileen: CPH stands for "Chronic Paroxysmal Hemicrania" something similar to CH, with shorter but more numerous attacks. Sometimes the difference is so vague that even specialists like Dr. Kudrow are not sure which to diagnose.

PFNADs
Ueli

Title: Re: CH and CPH
Post by Donna on Mar 4^th, 2003, 9:03pm

I would like to welcome April, too, and feel as Ueli does about this board being restricted to CH (& CPh) as to do otherwise would be defeating our purpose here.

We have a unique malady that needs undivided attention if it is ever to be understood. Our purpose is not due to lack of compassion....we've just worked too hard trying to get cluster headaches recognized...as is in our constitution........go to http://www.clusterheadaches.org and read what we are all about, as well as the first few pages of this site. DJ spells it out pretty clearly.

If you guys want to start a ("for everything") room. you can use mine at http://www.englewoodexpress.com and talk about anything in the world.

Just don't get me shut down, please.

Title: Re: CH and CPH
Post by Frank on Mar 4^th, 2003, 9:10pm

on 03/04/03 at 20:43:51, Ueli wrote:

I am somewhat opposed to Tanner, Frank and Charlie; this message board is not intended as catch-all for every case of head- or other pain. :o

I guess my reply to tanner's post was overly simplistic. I said what I did because as a member here for about three years, I have seen the same question asked a couple of times before... "Should people who have CPH be welcomed to post here?" The consensus of members who posted here at the time was... Yes. Last time I checked, Meegrainers and snake oil salesmen are still not welcomed here though.

Title: Re: CH and CPH
Post by tanner on Mar 4^th, 2003, 10:29pm

sorry ueli,

no actually, i'm not!!!!! i am not about to start playing "MY PAIN IS BIGGER THEN YOUR PAIN".....
DJ, i guess it's your call. if we are looking for answers and research, elitism is no way to get it. i personally think support is support and there is nothing, no less than nothing to be gained from driving anyone away angry or without help.

ueli , is it just my imagination, or do you and i seem at odds with each other?

let me know what we can do about that! tim

Title: Re: CH and CPH
Post by amber on Mar 5^th, 2003, 2:00am

hey there :)
I may be new but I know this much...
CPH is a SUBSET of CH...it's in the same family.

You belong.

'nuff said.

Amber

Title: Re: CH and CPH
Post by amber on Mar 5^th, 2003, 2:00am

subgroup...i meant subgroup...i'm tired *sigh*

Title: Re: CH and CPH
Post by juvy on Mar 5^th, 2003, 5:12am

okay guys/gals,

Thank you for all the support. The best thing to do is let DJ decide. I've read the reasons why he created this site and as much as i hated to bug him; I've sent the matter to him. If this is to remain strictly a CH board then i will stay on as a supporter if you all so wish. Thus helping any CPHers who stray here. I'll then take a chapter out of DJ's book and hopefully within a few months create a CPH message board and information site.

Regardless, as soon as my website is up and running i will have a section on my site devoted to CH and CPH as both have affected my life so much.

So we await DJ.

Cheers,
April

Title: Re: CH and CPH
Post by Donna on Mar 5^th, 2003, 6:56am

DJ made it pretty clear years ago:
http://clusterheadaches.com/

And I think everyone in this thread agreed that CH and CHP were both entitled to be here.

Over the years, we've been over and over this same topic.

Different opinions are what make for good ideas......keep 'em coming. In the end (as he has always done), DJ will have the first and last word.

Title: Re: CH and CPH
Post by TomM on Mar 5^th, 2003, 8:01am

CH, CPH.
George Bush, George DubYaFratBoy Bush.
Dan Quayle, Bright as a Quail.
What's a few letters among friends? I axe you.

Welcome April!
TomM 8)

Title: Re: CH and CPH
Post by woobie on Mar 5^th, 2003, 9:03am

I talked to Juvy in the chat room a couple days ago.. when she first posted this... and what I told her was.. IF she DOES get ousted from here...

HEADACHESUPPORTGROUPS.CoM is for EVERYONE with headaches, and she would be more than welcomed there. There's a place to post things, and a chat room.. so either way.. we can keep in touch with you, Juvy.

And I hope you DO get a website like this going for CPH, Juvy.. YOU GO GIRL!!

Tina :-*

Title: Re: CH and CPH
Post by CHILDINSIDE on Mar 5^th, 2003, 2:25pm

:'( i know not all pains are created equal and all that stuff, but this is not a pissin match as to who is more entitled to be here for their pain. if someone needs my support, for what ever reason, i will be there. besides, that ability to share compassion is what seperates us from the animal (that and fleas). welcome aboard. i am probably a misdiagnosis of ch, and should be cph, but until i know for sure or whatever, pain is pain.
melissa :-*

Title: Re: CH and CPH
Post by Ted on Mar 5^th, 2003, 2:38pm

The general consensus here for years has been this site is for CHs. And since CPH is a close cousin, for CPH sufferers too.
(For those of you who seem to read things to mean its opposite, what that means is this site is exclusively for everyone who doesn't have CH and CPH.)
But, this isn't a place for any type of pain. It's not a site for people with bursting hemorrhoids to discuss their pain or research. It's not a place for people with trigeminal neuralgia to come talk about their pain or research. There are plenty of pain sites that are dealing with all types of pain, or all headaches even. There are plenty that specialize in just migraine or TN. This is the only one that gives us a place to talk and research and not get lost in the shuffle.
Welcome Juvy. As everyone else who posted about whether CPHers are welcome here said, yes you are. Nice meeting you.

Title: Re: CH and CPH
Post by SommelierCH on Mar 5^th, 2003, 6:26pm

The things we do as Clusterheads, to relieve the pain, might be harmful or deadly to other people with different pain. Confusion of our problems and remedies as Clusterheads, with other illnesses will be inevitable, and of no use to either. We are not just a “general support” group, we are a “very specific” pain management clinic.

PFDAN,
David J.