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MAGNUM (www.migraines.org)


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Are you other migraine sufferers familiar with this web site?

It's excellent. Here's a link...MAGNUM: MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was created to bring public awareness utilizing the electronic, print and artistic mediums, to the fact that Migraine is a true biologic neurological disease, to assist Migraine sufferers, their families, and coworkers, and to help improve the quality of life of Migraine sufferers worldwide.

The About Page is obviously a good place to start, if you've never been here.

The UK counterpart seems more easily navigated, and even though they ask for membership fees, there is a boatload of free info, including a cool pdf diary under Site Index and the horizontal menu and the top, which when you mouseover brings up a menu--all accessible, that I tried, without membership.

Link: Migraines.org.uk

FWIW, fellow migraineurs. We might not get any relief in this life time, but we got a cool label!

S9

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I have actually seen that site, yes. There is a section that talks about myths and headaches and migraines. [a couple of the things are a teeny bit off, but more just very heavily worded or not noting something, I guess, to drive a couple points home than being wrong or invalid. And not anything huge. Just from what I could tell from when i was looking around. I did like it then.]

And migraineurs is a word that is actually used fairly often. Now if they can come up with something other than 'those who suffer from headache disorders', we'd be 'in business.'

...

oh, and from the World Health Organization:

Headache disorders and public health

While those suffering from headache disorders bear much of the burden, they do not carry it all. Because headache disorders are most troublesome in the productive years (late teens to 50s), estimates of their financial cost to society

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And migraineurs is a word that is actually used fairly often. Now if they can come up with something other than 'those who suffer from headache disorders', we'd be 'in business.'
Oh yah, I call myself a "Migramanure". The label does nothing for me, just fix the fucking thing. 45 y.o. now, started at 12. <heavy sigh>
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Are you other migraine sufferers familiar with this web site?

It's excellent. Here's a link...MAGNUM: MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was

<{POST_SNAPBACK}>

Hmm, browses around it, the most useful thing I found on it was a reference to IHS classification.

Googling on that rapidly brought me to...

International Headache Society

Careful reading of that made it clear that I have been misdiagnosed as having tension headaches, when in fact, by IHSII they are clearly Migraine without Aura.

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Are you other migraine sufferers familiar with this web site?

It's excellent. Here's a link...MAGNUM: MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was

<{POST_SNAPBACK}>

Hmm, browses around it, the most useful thing I found on it was a reference to IHS classification.

Googling on that rapidly brought me to...

International Headache Society

Careful reading of that made it clear that I have been misdiagnosed as having tension headaches, when in fact, by IHSII they are clearly Migraine without Aura.

<{POST_SNAPBACK}>

Let me put it another way, I thought it was better than most migraine info links for laypeople or patients, and one of the better things about this site is that the links go in a multitude of directions.

I found it a couple of years ago, and it's still pretty much the same--but where it can take you is vast and informative (IMO).

YMMV...I saw that page you reference also, it looked pretty good too.

I was just in *migraine* mode and thought I would share it. Actually I was looking for good art by migraine sufferers, but as with everything else, the freebies are going by the way side--even to look at them. But I understand.

I saw an exhibit one time and it was so moving. Of course being a chronic migraine sufferer forever, I could relate to the images of pain. I wish I could express them as well!

S9

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When I was first diagnoses with migraines, I discovered the MAGNUM site and found it to be pretty informative.

I just wish somebody would invent a virtual reality migraine simulation for non-migraineurs who think a migraine is just a headache! I don't think I've ever had "regular" head pain. I get migraines or ice-pick headaches. OTC meds never work.

I must say, however, that WB and Topamax have helped prevent major migraines from erupting.

dianebea

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I must say, however, that WB and Topamax have helped prevent major migraines from erupting.

dianebea

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Lucky for you, Topamax made me stoooooooooooooooooopid-er! I'm giving calcium channel blockers another go. x'ing fingers.

S9

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  • 2 weeks later...

Are you other migraine sufferers familiar with this web site?

It's excellent. Here's a link...MAGNUM: MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was

<{POST_SNAPBACK}>

Hmm, browses around it, the most useful thing I found on it was a reference to IHS classification.

Googling on that rapidly brought me to...

International Headache Society

Careful reading of that made it clear that I have been misdiagnosed as having tension headaches, when in fact, by IHSII they are clearly Migraine without Aura.

<{POST_SNAPBACK}>

I found it a couple of years ago, and it's still pretty much the same--but where it can take you is vast and informative (IMO).

YMMV...I saw that page you reference also, it looked pretty good too.

<{POST_SNAPBACK}>

Anyhoo thanks for the post, it has been useful.

It got me looking into the subject again, (that and the fact the headaches have been killing me once or twice a week). Since the IHS  classification was so absolutely clear on the subject my problem was migraine not tension headaches I resolve to tackle the doctors again.

In fact since it disagreed with the previous "official diagnosis" I started to do a critical analysis of the IHS vs the bunch of doctors who had diagnosed me previously.

At the time of the original misdiagnosis the web wasn't so big, so I just had things like the fact that the docs were registered practioners and the medical insurance paid for them to go on.

Now a decade later I have the web, and googling around I found the first set of doctors web site. Oh dear. They have Bad Words like "patented" and "proprietary" and "revolutionary". Googling further, yes, the head doc has some published papers in supposedly reputable journals. His revolutionary finding has a citation count of zero.

The references to IHS look a little better.

So anyhoo, I resolved to ignore the official Docs diagnosis and head back to my local GP.

I tell him the tale, I tell him I read there are new migraine medicines available, I don't trust the previous diagnosis and I would like to try one of the new migraine medicines.

The GP was somewhat shirty and put out. He clearly doesn't like his patients reading things on the 'net and questioning the Lord  High Register Doctors Opinion. "So I expect the 'net told you to ask for Immigril?", growls the GP. "Dunno", sayeth I, "I didn't bother to read about that, I figured that's your department!"

So that's what he prescribed, generic name is Sumatriptan.

And lo and behold, a couple of weeks later and a couple of headaches later I can say...

It WORKS!

Takes about 45 minutes to and hour to work, but it does!

Feels weird, I can feel I'm still sick down under there somewhere, but somethings blocking it.

I also got a book out of the library on the subject, basically its the book behind / assocation with that MAGNUM web site. Quite useful.

Moral of Story: Don't trust everything you read on the web. Read critically, check references, AND SUBJECT THE #$%@#$!  DOCS TO THE SAME SCRUTINY!

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