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        New Message Board Archives >> 2004 Posts >> Article in The Times(CH ONSI)
        
(Message started by: pubgirl on Jun 26^th, 2004, 12:43pm)

Title: Article in The Times(CH ONSI)
Post by pubgirl on Jun 26^th, 2004, 12:43pm

For info for interested parties, we managed to get an article about CH in the most prestigious national broadsheet in the UK today.

You could pick holes in it, but it isn't bad at all!
Great publicity too. The calls are already rolling in so we are reaching new people already.

http://www.timesonline.co.uk/newspaper/0,,175-1156815,00.html

Wendy

Title: Re: Article in The Times
Post by UN_SOLVED on Jun 26^th, 2004, 1:15pm

"The area you wish to access is behind registration"

That sux. We gotta register, list our e-mail, and what else ?? Oh yea, be bombarded by spam ...

Thanks anyways

Unsolved

And ya gotta pay to see it ! ::)

Title: Re: Article in The Times
Post by Simon on Jun 26^th, 2004, 1:53pm

In case it continues to prove difficult to reach:

Pain of the brain storm

The thumping agony of cluster headaches is hell to live with, but relief may be on the way, says Meg Carter

It sounds like overkill — to the uninitiated, at least. But an operation to implant under the collarbone a device the size of a computer mouse to lessen chronic head pain is now being offered on the NHS.
It is yet to become widely available, but the procedure will be discussed by medical experts at a conference in London this weekend before an attentive audience: some of the UK’s tens of thousands of sufferers of a little-known chronic condition now widely regarded as one of the most acute known forms of pain: the cluster headache.

If you’ve not heard of cluster headaches, you are not alone. Medical opinion remains divided on their cause, and there is no known cure. Often misdiagnosed, despite being as common as multiple sclerosis, which affects 85,000 sufferers in the UK, cluster headaches can be devastating. The pain can be so acute that women sufferers have described it as worse than childbirth. It has driven others, meanwhile, to consider suicide.

While relief from the pain of an ordinary headache is just a couple of over-the-counter painkillers away, cluster headache sufferers rely on stronger, faster-working prescription drugs, inhaling neat oxygen and, in the most extreme cases, surgery. Even mild sufferers, however, describe cluster headaches as “incapacitating”. And I should know: my husband Martin is one.

Martin’s cluster headaches are typical, affecting just one side of his head around the eye — often accompanied by aching sinuses (associated features others commonly report include eye watering, drooping eyelids and a blocked or runny nose); they last 45-90 minutes but reach full and excruciating force rapidly before eventually ending abruptly; and they occur regularly — at worst, a couple of times every day over a period of weeks or months known as a “cluster bout ”. He can then go for a year or so attack-free.

Martin is lucky: his cluster headaches are not as severe as those suffered by some and he is now on medication to help to manage them. For the London-based film financier Mike Pollock, however, most drugs commonly prescribed to alleviate the symptoms have had little effect. He has had cluster headaches for the past 35 years and is now classified as a chronic sufferer, which means they never go away. “At one time I was having up to 20 cluster headaches a day — the pain is excruciating,” he says.

For years, Pollock suffered daily attacks at around 1.15am, 7.30am, 10am, 2pm and then again at 8.30pm. He tried lifestyle changes — such as no alcohol and avoiding coffee, chocolate and other factors known to trigger migraine — but to no avail. “None of the pain relief I’ve tried has really worked, apart from one particular injection I now have twice daily, and bottled oxygen,” he says. “The injection works quickly — within about ten minutes.”

Together, the injections and oxygen cost £2,000 a month, which is why Pollock turned to surgery last year. He underwent a rare operation, until recently used only for severe migraine sufferers involving the insertion of a battery charger beneath his collarbone.

This delivers an electric charge through fine wires implanted under his scalp to stimulate a part of the brain called the posterior hypothalamus to lessen the pain.

The operation, which in desperation he paid for himself, proved only partially successful. While it reduced significantly the headaches on one side of his head, the bulk of the attacks simply switched to the other.

He underwent a second operation last April — this time on the NHS — in which a second stimulator was connected to treat the other side of his head. It may sound a drastic measure, but Pollock adds: “I couldn’t wait. I was unable to leave the house easily with the bottled oxygen that I needed with me the whole time.”

Almost three months on, and Pollock says his cluster headaches are now significantly improved. “I feel 70 per cent better,” he says. “The only trouble is that while the operation I underwent has been widely used for treating back pain — Jerry Lewis recently had it — and Parkinson’s, it’s still early days for cluster headache treatment. And on evidence so far, it takes far longer for the effect of the operation to kick in.”

(continues...)

Title: Re: Article in The Times
Post by Simon on Jun 26^th, 2004, 1:54pm

(remainder)

Cluster headaches have been known for centuries. “You can find clear-cut descriptions of them in 17th-century literature. But only since 1988 has there been a universally agreed diagnosis for them, and until 1998 they were thought to be the result of swollen blood vessels at the base of the brain,” says Peter Goadsby, the professor of clinical neurology at University College London and a leading expert on the condition. He will present the latest findings on treatments and diagnoses at this weekend’s conference, which is being staged by the aptly named patient support group Ouch (the Organisation for the Understanding of Cluster Headaches).

“They are now generally regarded as a disorder of the posterior hypothalamus which becomes abnormally active during an attack,” Professor Goadsby says. This understanding has led to two treatments for chronic sufferers. The more extreme involves deep brain implants to control the condition through brain stimulation.

This requires the insertion of an electrode into the brain. The other is the operation undergone by Pollock “It would, of course, be nice to find a way that is less invasive,” Professor Goadsby observes with some understatement.

With no known cure, managing the condition is a constant challenge. As the pain can be so severe, ordinary painkillers are usually ineffective — and too slowly absorbed to provide pain relief quickly enough — so sprays and injections are usually prescribed. Drugs are also available to shorten the length of an attack during a cluster headache bout.

Most sufferers take other precautions, too, such as avoiding alcohol, warm stuffy environments and solvents — each of which can trigger attacks.

“While not every GP may diagnose the symptoms correctly the first time that they are presented with them, awareness of the condition is growing,” Professor Goadsby says. “Informed support — such as that provided by Ouch — and sharing experiences are extremely useful for all sufferers.”

For more information about cluster headaches, contact the Organisation for the Understanding of Cluster Headaches (Ouch UK), 0161-272 1702; or e-mail info@ouchuk.org

(ends)

Dolly

Title: Re: Article in The Times
Post by fubar on Jun 26^th, 2004, 2:02pm

85,000 sufferers in the UK? WOW! That sounds like a lot!

Great article. I'd still rather 'read' page 3.

-Fu

Title: Re: Article in The Times
Post by jonny on Jun 26^th, 2004, 2:05pm

on 06/26/04 at 13:53:08, Simon wrote:

. But an operation to implant under the collarbone a device the size of a computer mouse to lessen chronic head pain is now being offered on the NHS.

Any chance I can get that implanted under my mule to make it even bigger than it is? ;;D

...................................jonny

Title: Re: Article in The Times
Post by pubgirl on Jun 26^th, 2004, 2:19pm

Hi,
Sorry folks.

I had no idea you had to register, I'm not registered and haven't paid anything and went straight to it, so no clue why that is [smiley=huh.gif]

Wendy

Title: Re: Article in The Times
Post by Charlie on Jun 26^th, 2004, 4:24pm

Quote:

The operation, which in desperation he paid for himself, proved only partially successful. While it reduced significantly the headaches on one side of his head, the bulk of the attacks simply switched to the other

What kind of horror is this thing? I don't believe in Satanic evil but maybe there is some kind of rogue alien buzzing around the planet keeping track of clusterheads. Unreal.

Great article and thanks Simon. No problem Wendy. I'm signed up for the NY Times and Washington Post. So far, I've stuck to the Guardian on your side of the pond though.

Charlie

Title: Re: Article in The Times
Post by pubgirl on Jun 26^th, 2004, 4:31pm

Hi Charlie

Long time no speak.
Mike is experiencing some much more promising results now he has had both sides done and the operation is some time ago (a few weeks now). There is some inference that scar tissue has to form around the electrodes to hold them firm.
He is certainly experiencing less frequent and less painful attacks than for many, many years. Long may it continue Mike!

Wendy

P.S. Charlie, how would I have guessed about the Guardian ;;D Left Wing rag ;;D
Has good information though and I was brought up in a Guardian reading household

Title: Re: Article in The Times
Post by UN_SOLVED on Jun 26^th, 2004, 5:45pm

on 06/26/04 at 13:53:08, Simon wrote:

This is why I had the "Bi-lateral ONSI" ... (the first) ... it didn't stop the one's on either side ?? I'd still be willing to be the first one here (in the US) to try this operation (bi-laterally of course) ;;D

Unsolved (Still waiting on government red=tape approval)

Title: Re: Article in The Times
Post by Filbert on Jun 26^th, 2004, 8:48pm

UN SOLVED It does seemed to have helped Mike after a while-really hope you get some relief soon- you deserve it!!
Simon- great that you took the time to write all that thanks!!
Fubar its thought that 85000 is a considerable underestimate of the the UK numbers- I hope I'm wrong on that!!

Cheers Filbert

Title: Re: Article in The Times
Post by Charlie on Jun 26^th, 2004, 9:02pm

Very cool Wendy.

About time you get a break.

Thinking of one for epilepsy. Not sure though.

Charlie