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adamski

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THE DEMONS GRIP
Nov 12^th, 2010 at 1:08am

ive been suffering these now for 4 to 5 years and i just got diagnosed 2 weeks ago...ive just woke up an hour ago im sooo tired but im glad because theres nothing worse than to be waken up by it ....at least i have a fighting chance now .....im slowly starting to understand that no 1 knows apart from those that do know...what its like ...i get mine periodically once a year lasting up to 3 months but i count myself lucky now as i know there are people that suffer from it all year round ..my heart goes out to you all ...any one want to talk about it ..i am hear and for certain i do as no 1 understands where im commin from ...

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ADA

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George

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Re: THE DEMONS GRIP
Reply #1 - Nov 12^th, 2010 at 1:28am

'Evening. (Well, it is here, anyway.)

Welcome.

Sorry to hear that it took you several years to be diagnosed. Unfortunately, that's fairly typical. Many doctors never see a CH patient, and few know anything about the condition. Have you seen a neurologist specializing in headache yet? He or she may be able to discuss treatment options with you that could help reduce the impact of CH on your life.

And that's really what it's all about. There's no cure for the thing, only palliative treatment. Some treatments are better than others. Some will work for you, and some won't. Getting a handle on it doesn't often happen overnight.

Be sure to take a good look around, paying particular attention to the "oxygen info" link to your left. 100% oxygen at high flow rates with the proper mask is the single best abortive in our arsenal, has few if any side effects, and is far cheaper than some of the pharmaceuticals available to stop an attack.

I'm sure others will be along to discuss preventives--medications that can reduce the number of attacks within a cycle.

We'll be around to help in any way we can, and will try to answer any questions you might have.

Meantime--again, welcome. Welcome home.

Best wishes,

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Kate in Oz

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Re: THE DEMONS GRIP
Reply #2 - Nov 12^th, 2010 at 2:04am

Hi,

Just wanted to say hi and I'm glad that you found us - there is so much info here that can really make a difference to how you cope. Let us know what you're using as an abortive etc - there might be something we can suggest that will make a difference.

Personally I use oxygen and nothing else these days. Having said that - when I first tried 02 many years ago I didn't find that it helped much at all.... so its been a long time of trial and error and now find that I can abort a hit (I get mostly nighttime ones) in around 10 mins.

Stick around and if you have any questions, please ask!!

Wishin you all the best,

Kate

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« Last Edit: Nov 12^th, 2010 at 2:05am by Kate in Oz »

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adamski

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Re: THE DEMONS GRIP
Reply #3 - Nov 12^th, 2010 at 2:10am

THANK YOU GEORGE
N YEAH 1OO% OXY HELPED SOOO MUCH @ THE HOSPITAL IF I CAN CATCH IT IN TIME WHEN I GET (SHADOWS) THEN I CAN KIND OF COPE ...ITS MAINLY WHEN THE ALARM BELLS ARE RINGING @ DAFT OCLOCK IN THE MORNING ...AN IM IN A FULL BLOWN ATTACK ITS HARD ..THANK YOU AGAIN GEORGE ......
ADAM
P.S A RECPTIONIST @ MY DOCTORS SAID TO ME YESTERDAY (U DO KNOW UR NOT SUPPOSED TO USE THE HOSPITAL FOR HEADACHES) RIGHT THERE N THEN I WANTED TO GIVE HER A TASTER LOL ...I KNOW ITS NOT HER FAULT AS THOSE WHO DONT SUFFER DONT REALLY HAVE A CLUE ........

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ADA

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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: THE DEMONS GRIP Reply #4 - Nov 12^th, 2010 at 2:17am I've never liked calling the thing a "headache". It doesn't begin to describe it. Best, George
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adamski CH.com Junior Offline THANK YOU CH.com! Posts: 44 uk Gender:	Re: THE DEMONS GRIP Reply #5 - Nov 12^th, 2010 at 2:22am aint that the truth ......... thanks again george
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JustNotRight

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since 2005 aka GingerS224

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Re: THE DEMONS GRIP
Reply #6 - Nov 12^th, 2010 at 6:42am

Welcome Adamned 1 !

Glad you found us but sorry you had too.

Quote:

P.S A RECPTIONIST @ MY DOCTORS SAID TO ME YESTERDAY (U DO KNOW UR NOT SUPPOSED TO USE THE HOSPITAL FOR HEADACHES

This definitely falls under the heading of Stupid $hit people say! Angry

We've all heard things like this and not just from medical staff Roll Eyes

Glad you have O2 and finally have a name for this beast!

Wishing you PF Days and Nights!
Ging...

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Guiseppi

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Re: THE DEMONS GRIP
Reply #7 - Nov 12^th, 2010 at 8:59am

So glad you found us. You'll find your best bet is arming yourself with knowledge from this site, and becoming your own best advocate. You'll want to get a home oxygen set up. On cycle there is a rigged e-tank leaning against my bed. That way when the nite time terrors come I can be on the 02 immeditely.

Read some of the posts on melatonin. An over the counter supplement which helps many avoid the nite time hits. Start with 9 mg 30 minutes before bedtime. May have to adjust up but give it a few days to see how it works.

Welcome home, we'll never tell you to shut up and take an aspirin! Wink

Joe

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

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Chris H CH.com Sponsor Offline CH with CH Posts: 130 Gender:	Re: THE DEMONS GRIP Reply #8 - Nov 12^th, 2010 at 9:40am Welcome! Another Manchester United fan? -Chris
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George

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Re: THE DEMONS GRIP
Reply #9 - Nov 12^th, 2010 at 9:50am

Chris H wrote on Nov 12^th, 2010 at 9:40am:

Welcome! Another Manchester United fan? -Chris

Could be, I suppose--although I just made an assumption that Adam was from:

"Manchester England, England. Across the Atlantic Sea." Wink

How are you today, Adam? Better, I hope. For whatever reason, this thing always seems and feels worse at O'Dark-Thirty in the stinkin' morning.

Best,

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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