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a cure at last!!! (Read 4844 times)
mightymeated
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a cure at last!!!
Dec 16th, 2010 at 2:32pm
 
hi everyone!

what do you think about the new cure for CH???

do you think it will work???

does anyone have more info on it, as ive only just heard about it????
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Jimi
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Re: a cure at last!!!
Reply #1 - Dec 16th, 2010 at 2:42pm
 
I have no idea what you are talking about.
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mightymeated
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Re: a cure at last!!!
Reply #2 - Dec 16th, 2010 at 2:54pm
 
hi firstly are you in the uk or usa.

im in the uk and it was just on the news that there is a cure for ch sufferers. apparently they have to put a electro chip in your brain that stops the pain in that area of the brain.
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Re: a cure at last!!!
Reply #3 - Dec 16th, 2010 at 2:58pm
 
That's not a cure. It's a treatment.
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mightymeated
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Re: a cure at last!!!
Reply #4 - Dec 16th, 2010 at 3:06pm
 
well if it stops the pain then it sounds like a cure to me!!!!!
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Re: a cure at last!!!
Reply #5 - Dec 16th, 2010 at 3:15pm
 
Quote:
About six in ten have experienced significant improvement.


That is a quote from the article. It seems like another tool that helps. What will be interesting will be to see if they come back.

Tests involving studies using 02 say the same. Tests involving studies using Imigram injectors show the same things.

Cure no.......another bullet in the gun....yes.
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Re: a cure at last!!!
Reply #6 - Dec 16th, 2010 at 3:16pm
 
Quote:
About 80 patients worldwide have had deep brain stimulation for cluster headaches. About six in ten have experienced significant improvement.

"Significant improvement" does not sound promising.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Jimi
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Re: a cure at last!!!
Reply #7 - Dec 16th, 2010 at 3:20pm
 
It eas cool to see Dr Manjit Matharu in the video. He was one of our speakers in Atlanta last summer.
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mightymeated
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Re: a cure at last!!!
Reply #8 - Dec 16th, 2010 at 3:28pm
 
well its a step closer so im happy in the knowledge that there are people out there trying to help us. Smiley
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Re: a cure at last!!!
Reply #9 - Dec 16th, 2010 at 3:36pm
 
Well that we can agree on. Smiley
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Re: a cure at last!!!
Reply #10 - Dec 16th, 2010 at 3:42pm
 
You guys wrecked my " under 10 posts . . ." speech.  AND he has 11 posts and was talking about a cure.  I was revving up good . . . . .

(((((sigh))))) . . .slinking back to my cave.
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Re: a cure at last!!!
Reply #11 - Dec 16th, 2010 at 5:28pm
 
well its a step closer so im happy in the knowledge that there are people out there trying to help us. Smiley

Smiley Wishing Pain Free times for all.
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Re: a cure at last!!!
Reply #12 - Dec 16th, 2010 at 7:14pm
 
Brew wrote on Dec 16th, 2010 at 2:58pm:
That's not a cure. It's a treatment.



Absolutely agreed.  It is one of many treatments available to cluster headache sufferers.  Frankly, I think I would try every single treatment I could find before I would allow anybody to "mess with my brain".  Any type of surgery, implant, radio waves, tin hats would be my absolute last resort.

There are a huge and wide assortment of treatments available that are proven to help, none of which are a cure.  Neither is this "treatment" a cure.

Just my 2 cents.

Sandy
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Re: a cure at last!!!
Reply #13 - Dec 17th, 2010 at 12:40am
 
This was just on the TVNZ news here in New Zealand with a segment from the BBC film plus a few comments from the newsreaders before and after. This is the first time I've ever seen CHs even mentioned on TV.
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mightymeated
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Re: a cure at last!!!
Reply #14 - Dec 17th, 2010 at 5:02am
 
yes me too....ive never heard or seen anything on tv regarding CH....
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mightymeated
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Re: a cure at last!!!
Reply #15 - Dec 17th, 2010 at 6:53am
 
Mosaicwench. i might only have 12 posts but i been a ch sufferer for 18 years now so yes anything new is hope for anyone no matter how many posts you have done!!!!!!!!!!
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Reply #16 - Dec 17th, 2010 at 7:24am
 
You'll find that people get a little bit sensitive around here when you come in, guns a-blazin', using the "c" word.

Stick around. You'll learn a thing or two.
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mightymeated
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Reply #17 - Dec 17th, 2010 at 7:50am
 
thanks for the tip.
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Re: a cure at last!!!
Reply #18 - Dec 17th, 2010 at 7:50am
 
Brew wrote on Dec 17th, 2010 at 7:24am:
You'll find that people get a little bit sensitive around here when you come in, guns a-blazin', using the "c" word.

Stick around. You'll learn a thing or two.


Why Brew, that was positively positive for you. Feelin' the Christmas cheer?  Wink  lance
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Re: a cure at last!!!
Reply #19 - Dec 17th, 2010 at 8:00am
 
wimsey1 wrote on Dec 17th, 2010 at 7:50am:
Feelin' the Christmas cheer?  Wink

Hardly. Wink
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mightymeated
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Re: a cure at last!!!
Reply #20 - Dec 17th, 2010 at 8:19am
 
wimsey1 merry xmas mate all the best to you Smiley
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Re: a cure at last!!!
Reply #21 - Dec 17th, 2010 at 9:30am
 
mightymeated wrote on Dec 17th, 2010 at 6:53am:
Mosaicwench. i might only have 12 posts but i been a ch sufferer for 18 years now so yes anything new is hope for anyone no matter how many posts you have done!!!!!!!!!!


Perhaps you are unaware that this board gets two or three snake oil salesmen a year who tout their pepper nose spray or pepper enemas or pepper whatever as "CURES". 

Recently we had one mildly amusing specimen who came onto the board
advocating being stoned into oblivion and rubbing ones temples as a "CURE." He even had the gaul to tell us we could feel free to donate our life savings to him for this important breakthrough. . . . .

The word "CURE" is a trigger that's bound to bring out the worst in most of us.  We will defend our sufferers and support them without end rather than have them fall for every cockamamie "CURE" that comes along.  And that being said, we will also defend against the PERSON who claims to have a "CURE".

If I haven't made it clear enough, I will tell you we are a close knit group who truly care for one another and the board as a whole.  We are sufferers or supporters who have fought this evil affliction for decades.  We fight it together.  And we fight hard against misinformation and false hope of a "CURE."

You'll NEVER see a member here with a thousand posts, or 5 thousand posts, or 10 thousand posts, suddenly start posting about a CURE.  Feel free to post information about any new treatment you've found, but stay away from the word "CURE."  You'll be welcomed with open arms and be better off in the long run.
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mightymeated
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Re: a cure at last!!!
Reply #22 - Dec 17th, 2010 at 9:55am
 
first of all i dont like your attitude. i am not a sales man i have not asked for any money and i have not said i have found a cure so get off your high horse alls  i have done is passed on some info that was published on tv news.  i have fought this evil affliction myself for 18 painful years so this alone gives me the right to voice my opinions. ps i will use any word that i feel fit dont tell me what i can and cant write you are not the voice of all sufferers!!!!!!!!!!!!!!!!!!!!!!!!!!!10 posts or 3000 posts
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Re: a cure at last!!!
Reply #23 - Dec 17th, 2010 at 10:04am
 
mightymeated wrote on Dec 17th, 2010 at 9:55am:
first of all i dont like your attitude. i am not a sales man i have not asked for any money and i have not said i have found a cure so get off your high horse alls  i have done is passed on some info that was published on tv news.  i have fought this evil affliction myself for 18 painful years so this alone gives me the right to voice my opinions. ps i will use any word that i feel fit dont tell me what i can and cant write you are not the voice of all sufferers!!!!!!!!!!!!!!!!!!!!!!!!!!!10 posts or 3000 posts 

The only thing you're being accused of is improperly using the word "cure." Look it up. And while you're at it, look up the word "treatment."

You're the one who needs to get off your high horse, pal.

P.S. - You don't have any rights around here. You only have privileges, and privileges are earned. Take it down a notch.
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mightymeated
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Re: a cure at last!!!
Reply #24 - Dec 17th, 2010 at 10:19am
 
oh i see so this is how it works then the people with the most posts are the bosses. i think not PAL your pain is no worse than mine. so your not better than me in anyway. every one is saying that i have said i have found a cure so i will say it again  I HAVE NOT FOUND A CURE!!!!!!!!!!!!!!!!! so get of my case. im going by whats being said on British tv...improperly using the word "cure.".....once again i did not say i had a cure so take it down a notch your self
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