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New to any form of help but not CH's (Read 727 times)
BiNaRyGoD
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New to any form of help but not CH's
Dec 9th, 2010 at 8:38pm
 
Hello everyone,
I was diagnosed with cluster headaches at age 18. Was haveing them since I was 16. Ive been battleing the monster for 20 years with absolutly no medical help except for the initial tests and diagnoses. I never realized there was so much help and support out there!! Im actually amazed at reading some of the posts cause in a sad way its like reading pages out of my life! My cycles are a little odd... I go a year to 2 years with nothing and then one day it hits and I have them anywhere from 2 weeks to 3 months. When im in a cycle I have the shadow pains constantly! The full show happens 4 to 5 times a day. Like everyone else those times are marked with hardly any sleep and all kinds of horror stories. I get the droopy tearing eye and the congestion on the affected side. Honestly have only ever had them on one side!!! So enough about me!!

This is the good part!!! Being that ive never used any prescribed medications (except for some pills the gave me 20 years ago) or O2 i've learned many different techniques and over the counter things that help! Granted some of these things dont work all the time, but I've amassed so many different things i can do ,that I can usually find something to stop the demon. It does nothing for prevention but beggars cant be choosers. I wont lie, every once in a great while ill go to the E.R. and get a shot. But in 20 years i can count the times on one hand. Im very glad to have found this group and am currently in a cycle.... Im researching the things im reading here and plan to combine my tricks with published ones!!!! Im excited!!! I really hope I can post usefull things in the future for everyone to benefit from! I really dont think anyone without CH could ever possibly comprehend the utter hell of an attack. Well thats alot to say but I promise you will be hearing more from me!
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bonkers
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Re: New to any form of help but not CH's
Reply #1 - Dec 9th, 2010 at 11:13pm
 
I'm curious to hear what you've found on your own that's effective against your headaches. After you've learned what's here that's new to you, there are some other things that many are having success with on Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.
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Excessive sorrow laughs. Excessive joy weeps.
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Mike NZ
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Oxygen rocks! D3 too!


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Re: New to any form of help but not CH's
Reply #2 - Dec 9th, 2010 at 11:21pm
 
An interesting first post.

I'd certainly give oxygen a go as when used at a high flow rate with a non-rebreather mask you can kill a CH in 6-8 minutes. Read up about it on the link on the left. It's simply amazing how well oxygen can work.

When you get a cycle starting using a prevent can stop a lot of the CHs from even happening (the rest you kill off with oxygen). Ask your doctor about a prednisione taper which will work well and also start something like verapamil, topomax or lithium. By the time the taper is done you'll be on an effective dose of the other drug.

Imitrex injectables also work well to kill CHs, but they aren't cheap.

For night time hits (if you get them), try taking melatonin. People report that 9mg or so a night helps a lot.

Energy drinks, like Red Bull, with caffeine and taurine, can help with shadows and to lessen the intensity / duration of an attack.

Please let us know what you've been using. Maybe we can all learn something too.
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wimsey1
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Re: New to any form of help but not CH's
Reply #3 - Dec 10th, 2010 at 7:06am
 
Quote:
Being that ive never used any prescribed medications (except for some pills the gave me 20 years ago) or O2 i've learned many different techniques and over the counter things that help!


Hmmm...I think I can name that tune; maybe the lyrics are different.
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Guiseppi
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Re: New to any form of help but not CH's
Reply #4 - Dec 10th, 2010 at 7:29am
 
Welcome to the board, great find for a CH'er as you won't find more information, or real time experience with CH anywhere. Read the oxygen info tab on the left. slight variations on HOW you use oxygen will dramatically increase the speed and effectiveness of your aborts.

Glad you found us, hope we can help lessen the pain.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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