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Topic: Daily Mail article on CH (Read 792 times) |
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Mosaicwench
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Daily Mail article on CH
« on: Oct 24th, 2006, 8:35am » |
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http://tinyurl.com/y9fo5a
"Barbara Cullen, 52, suffered from 'cluster headaches' for three years. The pain was so unbearable she considered taking her own life. But a remarkable new treatment has left her virtually pain-free."
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pattik
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Re: Daily Mail article on CH
« Reply #1 on: Oct 24th, 2006, 8:41am » |
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Quote:| All patients with cluster headaches jump at the chance of this operation. And it is wonderful to meet them later and discover their life is pain-free. |
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Huh? 
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JDH
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Re: Daily Mail article on CH
« Reply #2 on: Oct 24th, 2006, 8:47am » |
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No thanks.
Jim
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Charlotte
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Re: Daily Mail article on CH
« Reply #3 on: Oct 24th, 2006, 9:25am » |
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"It seemed to come in waves, and even during a lull it never died away completely."
"Even in between, I still had what most people would describe as a bad headache."
She never had pf time, now she does, so this was a success for her, whether it was ch, hc, cph or another TAC. I hope it works for a long time for her.
(I have heard of the operation and a few people have posted with varrying results.)
"All patients with cluster headaches jump at the chance of this operation. And it is wonderful to meet them later and discover their life is pain-free."
(I don't remember filling out a survey about this.)
Charlotte
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| « Last Edit: Oct 24th, 2006, 9:28am by Charlotte » |
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seasonalboomer
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Re: Daily Mail article on CH
« Reply #4 on: Oct 24th, 2006, 9:42am » |
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I'm pleaed as punch that this lady was helped by this but to infer that CH'ers "jump at the chance to have this surgery" is highly irresponsible and more akin to a paid advertisement than journalism.
Secondly, I may be dim, but when has the hippocampus ever been inferred as the source of our problems?
This article is an example the double-edged sword of getting more attention brought to our affliction. It surely pays to have more people know about CH, but too often they will obfuscate or distort the reality. It would be great if we get only the people that need to know more (doctors and neuro's, employers, family members) and leave the rest.
Scott
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George_J
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Re: Daily Mail article on CH
« Reply #5 on: Oct 24th, 2006, 11:55am » |
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ONS. Others have posted here with varying accounts of success or failure. For some, I suppose, it may be very helpful. I wish them success.
But....no thanks.
"All patients with cluster headaches jump at the chance of this operation."
News to me.
Hippocampus? Eh?
Best,
George
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Ah! The foreigners put on such airs
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The pain they inspire
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It all comes to light in the sheer
Debonair.
(Ellen)
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BarbaraD
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Re: Daily Mail article on CH
« Reply #6 on: Oct 24th, 2006, 1:05pm » |
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NO, all people with CH do NOT jump at a chance for this surgery!!!!!!!!
It should be a LAST RESORT!
I'm happy for the lady, but remarks like that hack me off!
Hugs BD
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fubar
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Re: Daily Mail article on CH
« Reply #7 on: Oct 24th, 2006, 1:09pm » |
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I don't believe the proper term is hippocampus.
It's "School for Hippos"
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mrs mac
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Re: Daily Mail article on CH
« Reply #8 on: Oct 24th, 2006, 1:15pm » |
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i beleive the paper has been contacted and put right on a few things 
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BMoneeTheMoneeMan
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Re: Daily Mail article on CH
« Reply #9 on: Oct 24th, 2006, 1:37pm » |
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Hippocampus.
Damn thats a funny one. That one needs to go in the archives next to the sweat-bands and the dude with the star-trek thingy on his head.
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"Fool me once, shame on, shame on you. Fool - can't get fooled again"
Think of how stupid the average person is, and then realize half the population is stupider than that.
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Kevin_M
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Re: Daily Mail article on CH
« Reply #10 on: Oct 24th, 2006, 2:17pm » |
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A kind of sad part is her doctor couldn't diagnose and a 14 day stay in the hospital couldn't, IV'ing morphine and sending her home with morphine tablets after that, with a neuro referral.
The neuro started her with steriods, but then continued the pain killers with O2, no preventatives, a sure hell.
That seems a low awareness by the doctors of clusters. With that kind of treatment, the procedure would seem perhaps more easily preferable to her.
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| « Last Edit: Oct 24th, 2006, 3:48pm by Kevin_M » |
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Gator
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Re: Daily Mail article on CH
« Reply #11 on: Oct 24th, 2006, 2:44pm » |
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Before y'all go getting too crazy with the hippocampus thing, you should know there really IS a part of the brain called the hippocampus.
Quote:| The hippocampus is a part of the brain located inside the temporal lobe (humans have two hippocampi, one in each side of the brain). It forms a part of the limbic system and plays a part in memory and navigation. The name derives from its curved shape, which supposedly resembles that of a seahorse (Greek: hippocampus). |
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We know (as much as research has shown anyways) that it is the hypothalamus that is the culprit. I bet the reporter just got the terms mixed up. The article should be corrected to reflect the proper terminology.
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Charlotte
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Re: Daily Mail article on CH
« Reply #12 on: Oct 24th, 2006, 3:17pm » |
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Doesn't the hippocampus have to do with memory? And isn't ther hypothalamus slightly lower down in the brain, but really close considering?
I think he misread his release.
c
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| « Last Edit: Oct 24th, 2006, 3:21pm by Charlotte » |
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Brew
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Re: Daily Mail article on CH
« Reply #13 on: Oct 24th, 2006, 3:20pm » |
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I think the author meant hippopotamus:
I'd have a huge headache if I had one of these big guys stuck in my head.
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Turts
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Re: Daily Mail article on CH
« Reply #14 on: Oct 24th, 2006, 4:21pm » |
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Quote:I don't believe the proper term is hippocampus.
It's "School for Hippos" |
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I miss read it as hippicampus.
I thought it was the part of the brain responsible for all that grass smokin free lovin stuff back in the seventies.
Turts
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'I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Lewis Carroll)
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Gator
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Re: Daily Mail article on CH
« Reply #15 on: Oct 24th, 2006, 4:37pm » |
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on Oct 24th, 2006, 3:17pm, Charlotte wrote:Doesn't the hippocampus have to do with memory? And isn't ther hypothalamus slightly lower down in the brain, but really close considering?
I think he misread his release.
c |
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Yes, the hippocampus deals with learning and memory. It is one of the first areas of the brain affected when a person develops Alzheimers.
The hypothalamus is located deep in the brain and is responsible for regulating automatic activities of the body, such as sleep, hunger, thirst, body temperature, and sexual activity.
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pubgirl
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Re: Daily Mail article on CH
« Reply #16 on: Oct 24th, 2006, 8:22pm » |
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Mrs Mac is right.
OUCH UK has formally written to The Daily Mail to point out all the many errors (almost everything in it is wrong)and to clearly state how misleading the article is
What a bloody shame of a missed awarenes raising opportunity on many levels, The Daily Mail has huge readership here.
God save us from shoddy journalists
W
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Jonny
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Re: Daily Mail article on CH
« Reply #17 on: Oct 24th, 2006, 8:27pm » |
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Whats sad Wendy is that the daily mail didnt know the wealth of knowledge they have right the in OUCH/UK.
But, they do now!!!!! 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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chewy
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Re: Daily Mail article on CH
« Reply #18 on: Oct 24th, 2006, 8:33pm » |
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Quote:OUCH UK has formally written to The Daily Mail to point out all the many errors (almost everything in it is wrong)and to clearly state how misleading the article is
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Will OUCH/UK push for a retraction ?
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Brew
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Re: Daily Mail article on CH
« Reply #19 on: Oct 24th, 2006, 8:46pm » |
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on Oct 24th, 2006, 8:22pm, pubgirl wrote:| God save us from shoddy journalists |
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Good f'n luck on that front.
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pubgirl
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Re: Daily Mail article on CH
« Reply #20 on: Oct 24th, 2006, 8:53pm » |
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Chewy, I'm not sure but I would expect so as they are very angry about it, mainly because it gives so much false hope (our ONSI results here for CH aren't great at all- so far no-one who has had it is pain free I'm afraid) They are also angry as we have a very close relationship with Queen Square and find it impossible to believe that if the journalist actually talked to people there that they wouldn't have referred them to OUCH UK.
We could have reached thousands of sufferers via that article and had our Helpline number in etc etc.
I think to date the Mail has said they will be talking to the journalist concerned. The chances of column inches in a National newspaper being given to a retraction are slim to nil I would have thought - it takes £million threatened law suits to get that, not moral justice sadly.
W
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pubgirl
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Re: Daily Mail article on CH
« Reply #21 on: Oct 24th, 2006, 9:14pm » |
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P.S.
Did you see on the link that you can comment on the article?
W the B
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catlind
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Re: Daily Mail article on CH
« Reply #22 on: Oct 24th, 2006, 9:15pm » |
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Perhaps enough public outcry may make them rethink their article and print another article with accurate information. A retraction is unlikely as Wendy said, but I know I sent an email outlining Prof. Goadsby and OUCH UK as resources.
Maybe just maybe if enough people write letters (emails) to the paper with a wealth of factual information and sources for obtaining further information they will run another feature with some accurate informtaion in it.
Cat
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thomas
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Re: Daily Mail article on CH
« Reply #23 on: Oct 24th, 2006, 9:18pm » |
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on Oct 24th, 2006, 9:15pm, catlind wrote:Perhaps enough public outcry may make them rethink their article and print another article with accurate information. A retraction is unlikely as Wendy said, but I know I sent an email outlining Prof. Goadsby and OUCH UK as resources.
Maybe just maybe if enough people write letters (emails) to the paper with a wealth of factual information and sources for obtaining further information they will run another feature with some accurate informtaion in it.
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Great idea, I can think of another target for this type of campaign.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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catlind
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Re: Daily Mail article on CH
« Reply #24 on: Oct 24th, 2006, 9:27pm » |
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Have an email address Thomas? I'd be happy to write a letter to the men's mag about your article
Guess I'm just in that kind of mood these days hehe.
Time to kick a$$ and take names, shoot first ask questions later.
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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