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????

I have no idea what you are talking about.

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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check this out.....

That's not a cure. It's a treatment.

well if it stops the pain then it sounds like a cure to me!!!!!

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.

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. 

It eas cool to see Dr Manjit Matharu in the video. He was one of our speakers in Atlanta last summer.

well its a step closer so im happy in the knowledge that there are people out there trying to help us. :)

Well that we can agree on. :)

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.

well its a step closer so im happy in the knowledge that there are people out there trying to help us. :)

:) Wishing Pain Free times for all.

Brew wrote on Dec 16^th, 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

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.

yes me too....ive never heard or seen anything on tv regarding CH....

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!!!!!!!!!!

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.

thanks for the tip.

Brew wrote on Dec 17^th, 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?  ;)  lance

wimsey1 wrote on Dec 17^th, 2010 at 7:50am:

Feelin' the Christmas cheer?  ;)

Hardly. ;)

wimsey1 merry xmas mate all the best to you :)

mightymeated wrote on Dec 17^th, 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.

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 

mightymeated wrote on Dec 17^th, 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.

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

mightymeated wrote on Dec 17^th, 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

And I in turn, don't like your ATTITUDE... In your first post you stated:
hi everyone!

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


No, you don't say that you have found a cure, but you do state that someone else has.. Voicing your opinions are a lot different than; what do you think about the new cure for CH???
, that is a statement...

And you are dead wrong... if you think: {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} no one on this board can tell you what you can and can't write... THEY R CALLED MODERATORS...

One thing you have right... She is not the voice of all suffers, but she's a darn good representative of this family.  The only thing she was doing was offering you some sound advice if you want to be a part of this family and not upset or offend people.

You may not be new to CH's, but you are new to this board and she was only sharing the house rules with you.

Peace & Blessings
LadyLuv

ps.  no one has privileges on here its not a prison you know. were all equal on here with the same condition. regardless of HOW MANY POSTS. you only have this many posts because you keep having a pop at people. i suppose it a quicker way of increasing your posts so you can earn so called "privileges"

Do you see that little "ignore" button under each person's profile picture? Feel free to use it.

I will be.

definition of the word CURE,....

"Something that corrects or relieves a harmful or disturbing situation"

so in other words a treatment, medicine or therapy that totally alleviates the pain for good or RELIEVES IT!!!

which is something that everyone who sufferers with this should be grateful of...instead of having a pop at the messenger regards...

Brew wrote on Dec 17^th, 2010 at 10:33am:

Do you see that little "ignore" button under each person's profile picture? Feel free to use it. I will be.

feel free  ;)

mightymeated wrote on Dec 17^th, 2010 at 10:37am:

definition of the word CURE,.... "Something that corrects or relieves a harmful or disturbing situation"

That's one definition. Look deeper, little grasshopper.

Oh, here's one:

"A complete or permanent solution or remedy."

You really need to learn how to pick your battles.

BACK TO THE TOPIC

Any sort of brain surgery that's touted for CH's scares me.  Maybe I feel this way because I'm episodic?  Besides, a 6 in 10 success rate does not equal 100%.  To me, it would probably not be worth it when there are many lesser invasive treatments I have yet to try... :-/

Brew wrote on Dec 17^th, 2010 at 10:50am:

mightymeated wrote on Dec 17th, 2010 at 10:37am: definition of the word CURE,.... "Something that corrects or relieves a harmful or disturbing situation" That's one definition. Look deeper, little grasshopper. Oh, here's one: "A complete or permanent solution or remedy." You really need to learn how to pick your battles.

thats not the point there are 5 definitions of the word cure so i can use any 1 of them. this wasnt intended as a battle you just dont want to admit that a cure can also mean alleviate the pain for good or RELIEVE IT!!! if your so upset  about this get in touch with the bbc news and sort it out with them for false advertising...also i think you should use that ignore button  :-X

Melissa wrote on Dec 17^th, 2010 at 10:53am:

BACK TO THE TOPIC Any sort of brain surgery that's touted for CH's scares me.  Maybe I feel this way because I'm episodic?  Besides, a 6 in 10 success rate does not equal 100%.  To me, it would probably not be worth it when there are many lesser invasive treatments I have yet to try... :-/

thanks for getting us back to the topic. yes i agree with you i wouldn't have this as my first choice either....

:-X

Brew wrote on Dec 17^th, 2010 at 11:02am:

:-X

;)

If this thread is going to go down as who gets in the last word, you're going to see it locked up quickly.

Keep it civil and try to stay on topic.  That goes for everyone.

Thank you.

Melissa wrote on Dec 17^th, 2010 at 11:12am:

If this thread is going to go down as who gets in the last word, you're going to see it locked up quickly. Keep it civil and try to stay on topic.  That goes for everyone. Thank you.

i totally agree alls i wanted was peoples opinions on this new ch  PAIN RELIEF.  i didnt mean to offend anyone i was just passing on some new information.......so what do people think about it.....

Please understand, we don't know you yet- there is always going to be a settling in time to establish senses of humor, vernacular, general grouchiness but good intentions, etc etc from both sides of this meet and greet.

An explanation that the word "cure" is used by many disingenious folks who slink on the board so it sometimes gets folks backs up isn't anyone accusing you of the same. It's just an explanation as to how things work 'round these here parts! The proper response to that is not to defend one tiny vocabulary word to the ends of the earth, it's "oh sorry, didn't realize, no biggie, I get it now"

As to "getting back to the topic"- it has been discussed before on various other posts I believe, so not everyone is going to chime in to rehash it. But there is a lot of good info on those posts so I'd suggest reading up on them.

Sixty percent is failure.

         Potter

Potter wrote on Dec 17^th, 2010 at 11:30am:

Sixty percent is failure.          Potter

????????????????????????????

Yes Bex started a post just before you with the info on the Clusterheadache Specific board without the pissing contest.

My 2 cents is this: I would ONLY go this route if I was chronic and had exhausted every other less invasive procedure before I would pay that enormous price and have an operation that delved into my brain.

Having said that, if nothing else worked and my quality of life was non-existant, than I would think about it.

Like I said on the other thread, I am glad that clusterheadaches was mentioned in such a large venue. Many people have learned about clusterheadaches after this report.

PS Like Melissa said, the pissing contest will stop or we will only be discussing this on the other thread.

mightymeated wrote on Dec 17^th, 2010 at 11:35am:

Potter wrote on Dec 17th, 2010 at 11:30am: Sixty percent is failure.          Potter ????????????????????????????

Six of ten =60%  Pretty poor odds for brain surgery.

          Potter

I've been chronic for now going on 7 yrs. and it's been almost 5 yrs that I am 99.999% med free.

I live a functional life and I don't belittle anyone's pain.

I think any information that is reported is awesome;however, for me it's not a cure until something provided that completely wipes them out.

Something would not only have to be utilized to alleviate pain but to completely prevent it from happening again.

With the data that is suggested in the report, I am cured because I have had relief and live a pretty normal life.

I still deal with it everyday but it is no longer a pathological entity as it does not interfere with my livelihood.

No one is implanting anything in my head.

NOW if I had New Daily Persistent Headache like our beloved Carrie then I too would because there is NO relief for that kid. NONE. Not a break not a lapse. It may ebb from a 10 to a 8 all day long everyday. One day she woke up with a headache that never went away! and she also has cluster.

mightymeated wrote on Dec 17^th, 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

Then why is this thread called "A CURE AT LAST!!!"  You contradict yourself.

I will count you as one of those that just doesn't get the nuances of complex communication and employ the handy dandy ignore button.

Mosaicwench wrote on Dec 17^th, 2010 at 11:56am:

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 Then why is this thread called "A CURE AT LAST!!!"  You contradict yourself. I will count you as one of those that just doesn't get the nuances of complex communication and employ the handy dandy ignore button.

me too  ;)

I am one of those in constant pain but it is SUNCT not CH as many of you that know me are aware and this cycle is going to be two years old next month and yes I am about ready to let someone take a drill to my head. I just started having electro shock treatments to test and see if this kind of surgery would be an option for me so I really appreciate the link to this article since it is very close to what they would do to me if I respond well to the tests they are doing. Cure no, a chance at possibly getting back most of my life yes.
Let’s try to remember he was not trying to sell anything just passing on information for us to digest and I think he is very clear by now about the down side to saying the word cure.

BigMatt wrote on Dec 17^th, 2010 at 12:20pm:

I am one of those in constant pain but it is SUNCT not CH as many of you that know me are aware and this cycle is going to be two years old next month and yes I am about ready to let someone take a drill to my head. I just started having electro shock treatments to test and see if this kind of surgery would be an option for me so I really appreciate the link to this article since it is very close to what they would do to me if I respond well to the tests they are doing. Cure no, a chance at possibly getting back most of my life yes. Let’s try to remember he was not trying to sell anything just passing on information for us to digest and I think he is very clear by now about the down side to saying the word cure.

thanks mat. thanks very much for setting things straight and good luck with your electro shock treatment. and im glad the article was some help to you. kind regards :)

Carrie spoke at our last convention and she was extremely good.  Carrie also had migraines.  During this time, she completed her undergraduate degee and became a neonate nurse and is now working on her Masters' degree in nursing and bioethics (I believe).

She is and should be an inspiration to all!

Carolyn

The word:"cure" is something that runs up a lot of flags here. It's not your fault though.

The C word is most often used by cranks or quaks daring us to join in their fun, usually at a price. "Treatment" is better. The medical profession rarely calls their success a cure.

Charlie

ive been here a while, and I found a cure













for gas!

its the release valve between the flaps. ;D :o 8-) ;D ;D

The goat has spoken.

oh by the way thanks for the info and i will be watching to see if they perfect or abandond it.

Have a Merry CHristmas.