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Posts posted by alleyoop
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People With 'Invisible Disabilities' Fight For Understanding
http://www.npr.org/2015/03/08/391517412/people-with-invisible-disabilities-fight-for-understanding
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Great find mate, and also great to see you back on the boards!!
Bob
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Jerry, no, I didn't miss the excellent effort put forth by you and others on Wikipedia about CH. I need to go there and see for myself the progress made. But it'll have to wait till later. I am covered up with too much right now.
And I agree that the quote Ajax pulled from the site is just a rephrasing of what Godsby quoted. Maybe someone will come up with a definitive quote from a knowledgeable and reliable source.
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Sorry, but I don't put much stock in Wikipedia since anyone can edit it.
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Goadsby: “probably the worst pain that humans experience”Also Goadsby, in a medical journal (with a co-author): "It is an excruciating syndrome and is probably one of the most painful conditions known to mankind."Also Goadsby, also with a co-author, also in medical journal: "Few, if any, medical disorders are more painful than cluster headache."Â
Thanks for the quotes and the links CHf!
But that word "probably" sticks in my craw. And "Few, if any, medical disorders are more painful than cluster headache." is still not the definitive definition that I have heard touted so many times.
I tried googleing "the most painful condition known to man" and got the Goadsby quotes, along with some links to things like "Ten most painful conditions", "Seven most painful conditions" & "Fourteen most painful conditions", in which all but one put CH at the top. The one that didn't put shingles as the most painful with CH second.
No where could I find a credible doctor or researcher that made that absolutely strong statement.
The phrase is bandied about so much that to me, it is concerning.
Bobb
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Does anyone know where and if this was actually published?
It would be nice to be able to quote it word for word, and back it up with a link or reference.
I know that I had a problem with the wording when I first saw it. I thought that instead of it reading, "The worst pain known to man", it should read, "The most intense pain known to man."
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if clusters were to last days weeks or months at a time i doubt very much anyone could stand it.
I stood it for 7 yrs, and others have stood it for much longer.
But I have been episodic for about 8 yrs now, and my remission periods seem to get longer and longer.
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Ketamine has been discussed quite extensively on these boards as an option for CH, mostly by Ricardo. Use the search box to find these discussions.
alley
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The deadline for endorsements is midnight Jan 31, 2015, so this is your last chance!
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A - 7:00-9:00 AM
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Very thoughtfully and well written article. Thanks MG!!
Thought:
Is there such a thing as an addictive personality :-?, and how does this question relate to the article? :-/
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shopon,
You may want to start your own thread on either the 'general board' or 'share your busting stories'. Please give as much of your history with CH as possible, and feel free to ask any questions you may have.
I also recommend starting with reading the numbered posts on the 'Clusterbusters Files' board. There is a LOT of info to be gleaned there.
Welcome,
alley
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Although it's been a while since hearing from your Mom, Rock is a long time member of this forum.
Tell her to pop in once in a while.
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Way to go DD!!!
[smiley=thumbsup.gif] [smiley=thumbsup.gif] [smiley=thumbsup.gif]
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People don't march off into harms way behind just anybody Bob, thank you for your tireless work and dedication as well.
[smiley=thumbsup.gif] [smiley=thumbsup.gif] [smiley=thumbsup.gif]
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Job well done J!!  [smiley=thumbsup.gif]
(That thumb should be green!)
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Wishing all of you a Very Merry Christmas!
And may the spirit of Christmas -- the giving, the fellowship and worship follow each of you throughout a PF 2015.
Bob Bowling Ho Ho Ho ;D ;D ;D
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Here's another about coping with the holidays with a chronic condition:
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Toni,
If you will go to the top of this page and click on the "User CP" tab, it will take you to your control panel.
On the far left top, you'll see three tabs. Click on the "Profile" tab. This will open the Profile page.
Look to your left and you will see several options. Click on "Contact Information". At this point, you'll probably have to re-enter your password. After doing so, you'll be on the Contact Information page.
At the very top, you'll see your email address. Just under that, you'll see "Hide Email From Public?". Make sure that a check mark is in the box if you don't want the public to see your email addy.
alley
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Not the expert but know a few things about such matters...
The guest thing just counts how many times an unregistered person hits the site. Could be the same person 168 times, or even some members not signing in.
The limiting areas to members is good to keep the rif-raf out, as most who come here accidentally, or are not serious CH people won't bother to take the 30 seconds it takes to perform a completely anonymous sign up. BUT, most importantly, it keeps the search engines out of the more private stuff. Those search engines will bring in god knows who looking for what.
I may be wrong, but that would be my answer.
I think you pretty much encapsulated it in a nutshell diamondmaker.
Prescription Testosterone Warning
in Research & Scientific News
Posted
FDA Concludes Testosterone Use May Increase Risk of Cardiovascular Events
http://www.docguide.com/fda-concludes-testosterone-use-may-increase-risk-cardiovascular-events?hash=2c7a2c89&eid=43942&alrhash=4056c4-4c0904a24167eb750bb2fe10b105968b