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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I'm glad I'm not alone
        
(Message started by: Lietuvos on Jan 29^th, 2006, 12:07pm)

Title: I'm glad I'm not alone
Post by Lietuvos on Jan 29^th, 2006, 12:07pm

I am 35 years old and have suffered with clusters since i was 12. I get them on both sides and sometimes bleed from the nose during the worst of them. My doctor calls them "suicide headaches" since some of the sufferers commit suicide because of the pain. i have tried a gauntlet of meds and even O2 and the only thing that helps is taking a hot shower. Now i understand this means taking 5-6 showers a day, but those of you who suffer would piss on a sparkplug if you thought it would help. My mother used to think i was faking these headaches until, during one episode, the white of my eye turned blood red. I'm sure mine aren't as bad or happen as often as some of yours, but i suffer none the less. I don't make much money, so, frequent doctor visits are not an option.

if anyone has any...and i mean AAANNNYYY...advice on ending the pain sooner please let me know, i don't care how stupid the suggestion sounds, it may help

thank you

p.s. I no longer fear hell, for i have felt the pain of clusters

Title: Re: I'm glad I'm not alone
Post by hutton on Jan 29^th, 2006, 1:52pm

this cycle has almost made me go broke but even so a good doc can be worth it. my advise read all you can and be your own doc just check with a real one to write the script and see if the meds are ok for you i agree hell will be easy

Title: Re: I'm glad I'm not alone
Post by Guiseppi on Jan 29^th, 2006, 10:07pm

You said oxygen didn't work for you. Read the oxygen info on the left. Many people have found when they switched how they used it, it became effective. Heres to hopig you find some thing that works.

Guiseppi

Title: Re: I'm glad I'm not alone
Post by thebbz on Jan 30^th, 2006, 8:28pm

Sorry for your pain. Been to a neuro? What does the whole gammet include? Trex? Was it injection? Sometimes the drug therapy's tried have been tried again and worked. Like the O2 the administration is critical. Trex in pill form is worthless for the most of us.
a bit more information and maybe you can find something besides showers. Caffiene will abort a mild one or delay until larger guns can be brought to bear.
Let us know lots of expierence around here.
jb

Title: Re: I'm glad I'm not alone
Post by BobG on Jan 30^th, 2006, 8:57pm

on 01/29/06 at 12:07:31, Lietuvos wrote:

My doctor calls them "suicide headaches" since some of the sufferers commit suicide because of the pain.

That term 'suicide headache" dates back a long ways. Clusters are also known as "executive headaches".

After 30+ years of suffering clusters and reading this board for about 7 years I have never seen proof that anyone ever committed suicide because of cluster pain.

And the executive term.......some of us may be in the executive ranks but my bet is that most are not.

Old wife’s tales and stereotypes in my opinion.

Title: Re: I'm glad I'm not alone
Post by Dragnlance on Feb 6^th, 2006, 8:17am

Lietuvos,
I am a chronic sufferer. I have had CH for as long as I can remember, I am 42 now. Here are some things that I do for mine.
I also use the hot shower. Sometimes, like last night, I will have the cold water totally off. My wife worries that I will get seriously burned doing this. Red Bull energy drink taken when the beast first starts up, can sometimes shorten that period. I have tried a lot of the other energy drinks with less success. Atomic Fireballs sometimes can distract a little. An herb tea called "ThinkO2" seems to help. Yesterday the monster clawed my brains for 9 straight hours, and the last things I did was drain 3 12 ounce glasses of water in 30 minutes, had a cup of thinko2 and a hot shower. Finally it broke. Since I also am limited on funds, cheap things like this are all I can do for now.
I hope these help you, and thank you for being here!

Title: Re: I'm glad I'm not alone
Post by Richr8 on Feb 6^th, 2006, 4:23pm

if anyone has any...and i mean AAANNNYYY...advice on ending the pain sooner please let me know, i don't care how stupid the suggestion sounds, it may help

Just read, read, read. All of the information is here on this site. If you have specifiec question, just throw them out there and lots of experience folks will jump in to share what has worked for them.