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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Please Help! - Newspaper Article
        
(Message started by: RevDeFord on Oct 2^nd, 2002, 7:37am)

Title: Please Help! - Newspaper Article
Post by RevDeFord on Oct 2^nd, 2002, 7:37am

Fellow Clusterheads. One of the main plights of our malady is the lack of education that is out there. People who have migraines think they have clusters, doctors have no clue, and many out there who have clusters are feeling helpless because they think there is noone else that is suffering like they are. That is where you come in.

I have a good relationship with the editor of our local rag. I want to take him information and have him publish an article about clusters. The cool thing about it is, if it is a good article, it might be picked up by the parent company, Freedom Communications, which owns hundreds of papers across the country.

Here is what I need. There is ton of information on this site, but I need something more concise to spark his interest so he doesn't have to read through loads of material before making a decision to proceed.

I need one or two line statements describing clusters and what you go through. Some examples are:

1)Pain that has been compared to child birth
2)Totally different than migraines
3)Head banging and constant motion during an attack is common
4)Episodic clusters normally last 6-8 weeks and occur mostly during change in environment or seasons.
5)As many as 70% of those who have clusters commit suicide - a quote that I can't verify but was told to me by the doctor that diagnosed me.
6)Most doctor's are uninformed about cluster headaches and thus often times misdiagnose.
7)Cluster Headaches are not merely headaches that come in clusters but rather are specific periods of intense pain in the head that last from 15 minutes to 2 hours and may occur 1-10 times in a 24 hour period.

etc.

These are some examples of what I need. I would do more, but I am trying to balance my time between to many irons in the fire. If you have some of these, I will cut and paste them into one document to present to the editor. And, if he writes the article, I will be sure to make it available to everyone.

Title: Re: Please Help! - Newspaper Article
Post by Riccardo on Oct 2^nd, 2002, 8:02am

OOOOPSS
first a correction:

5) As many as 70% of those who have clusters commit suicide

May be 70% have THOUGHT to commit suicide. Otherwise..... GLAXO bankrupted... ;D

7) The IHS statements define that also an attack every 2 days may be a CH . Until 8 per days.

****************************
Now..... very good idea. Thanks RevDeFord

I would add: (sorry for my English)

- CH affects 7 people every 1000, and one fifth are women. General primary headaches affects 2 people every 10, and four sixth are women. So, a G.P. can statistically see only one patient in his life: it's a rare disease, with few experienced doctors, even neurologists.

- in many Countries, CH is called Suicide Headaches

Ciao and thanks again

Title: Re: Please Help! - Newspaper Article
Post by Ted on Oct 2^nd, 2002, 8:21am

Getting the word out is very important and hopefully the editor will pick up the story on CHs. I'm not sure how a bunch of us writing one or two-line statements saying what you gave as examples would help, as opposed to you just telling/writing it to him (minus the 70 percent kill themselves part. That figure is WAY high). Another option is printing out the first newsletter from the OUCH site and letting him look at it. Pretty much all that info you mentioned is in there and it's not so large where he'd be overwhelmed with lots of reading.

Title: Re: Please Help! - Newspaper Article
Post by Bob P on Oct 2^nd, 2002, 9:07am

From Dr. Goadsby:

"It is an excruciating syndrome and is probably one of the most painful conditions known to mankind, with one female patient describing each attack as being worse than childbirth."

Title: Re: Please Help! - Newspaper Article
Post by Bob P on Oct 2^nd, 2002, 9:11am

Also, I wouldn't promulgate the seasonal conection as there really isn't any. A survey of 11,500 clusterheads says:

Spring (Mar-May) 1617 14%
Summer (Jun-Aug) 1082 9%
Fall (Sep-Nov) 1681 14%
Winter (Dec-Feb) 925 8%
Randomly 4041 35%

Title: Re: Please Help! - Newspaper Article
Post by RevDeFord on Oct 2^nd, 2002, 9:47am

There are 2 reasons why I am asking for assistance.

#1 time - I can cut and paste facts quicker than I can sit there are research all of them and type them out.

#2 - I think it will look better to him if I show that these statements are backed up by cluster sufferers from all over the world.

I will try to find that ouch newsletter. Haven't seen it personally.

Title: Re: Please Help! - Newspaper Article
Post by domm on Oct 2^nd, 2002, 5:15pm

- they are not caused by stress, as is commonly held.
- they are not migraines, they are something entirely different
- they wake people out of a sound sleep, usually associated with REM
- people are willing to undergo all sorts of different surgery in an attempt to stop the pain
- there is no surefire method of treatment that works for everyone.

Title: Re: Please Help! - Newspaper Article
Post by NancyMcFree on Oct 3^rd, 2002, 6:27pm

Who is currently writing the newletter ... could we ask them to do a "special editorial" for the newpaper to print ????? Just a thought.

Title: Re: Please Help! - Newspaper Article
Post by Not4Hire on Oct 3^rd, 2002, 9:55pm

......nance.

if ya had read the newsletter.....ya would know...right?

if ya go to the OUCH site........y'all would find that out.....

...the newsletter is written by the *general wad* here and YOU can be a writer....if ya want......

.....i'm blonde......and I found it....... WTF???

Title: Re: Please Help! - Newspaper Article
Post by Ted on Oct 3^rd, 2002, 10:05pm

on 10/03/02 at 21:55:43, Not4Hire wrote:

LOL Not

Title: Re: Please Help! - Newspaper Article
Post by kim on Oct 3^rd, 2002, 10:17pm

LOL - hooplalaa! I be reedehead - just blew a headachde outa me arse..................whatto Doooooooooooooo................GIMMEABREAK! ;)

Title: Re: Please Help! - Newspaper Article
Post by NancyMcFree on Oct 3^rd, 2002, 11:28pm

OMG, I am soooo sorry you guys. I didn't know I had to join OUCH before I became a member of this board. Do I have to join Elaines MB too? Let me know what the rules are. That way I can make sure I follow them. Not that I wouldn't want to be part of OUCH, after all, its in my best interest; but I didn't realize it was a pre-requisite and I had to know all about it before getting here.

Crap, call me a blond !!!!!!! Crap, call me new .... still in my first cluster and having fun with it ..... can barely make my way here .... now I gotta do a bunch of other stuff too before I can post again ????? Shittttttttttt. Life just ain't fair !!!!!

Let me know the rules.

Title: Re: Please Help! - Newspaper Article
Post by paul_b on Oct 4^th, 2002, 1:38am

Rules are fun to break. Distracts from the pain. Remember, we CHers are a unique group with highly active brains ;D ;D ;D OUCH, that hurt :).

Title: Re: Please Help! - Newspaper Article
Post by Drk^Angel on Oct 6^th, 2002, 4:39am

I swear... I've been bitin' my tongue, and not saying anything about all thia BS for a while, but if I read one more of Nancy's overblown, sarcastic, complaintive rants again, I'm gonna shoot myself.

Drk^Angel

Title: Re: Please Help! - Newspaper Article
Post by Axis on Oct 6^th, 2002, 11:59am

Hands DRK a gun loaded with Trex ;D

Title: Re: Please Help! - Newspaper Article
Post by Drk^Angel on Oct 6^th, 2002, 10:57pm

Ewwwwwww... Trex... Ya can keep it... LOL

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