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Title: My news segment did a lot of good.... Post by Jayne on Dec 9th, 2004, 8:43am I have bumped into so many people that know me fleetingly that said they saw my news segment and for the most part it has been a good impact on awareness about out plight. There was this one dopey woman I bumped into and she said "Oh I saw you on the news about your cluster headaches".....she went on "I get those too" "Oh really" I replied"..."Describe to me how you behave when you are in pain" "well I throw up lots, I have to lay down and be real quiet" "Hmmm", me says. "How often do you get these attacks" "Maybe 4 times a month" Well I went on to tell her she does not have CH and she argued with me and stated strongly that she does. So I gave her a long lesson about CH..that lasted for about 10 minutes. She ended with "Well my doc says it's CH" "You need a new doc" I said......AGGGGGGG But for the most part I have had some great responses and people seem to "GET IT" |
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Title: Re: My news segment did a lot of good.... Post by OneEyeBlind on Dec 9th, 2004, 8:46am That's great, Jayne ! Bravo for you getting the word out ! |
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Title: Re: My news segment did a lot of good.... Post by Jeepgun on Dec 9th, 2004, 9:01am Magnificent, Jayne!! Sorry you had to run into someone who insists that they have CH when they don't. BTDT... The wife of a guy I work with has migraines and insists that they are "cluster migraines." ::) |
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Title: Re: My news segment did a lot of good.... Post by sandie99 on Dec 9th, 2004, 10:47am Good for you, Jayne! That woman had a migraine, not CH... |
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Title: Re: My news segment did a lot of good.... Post by marlin on Dec 9th, 2004, 11:10am So, jayne, how do I get to see this news story? Is it an mpeg that I can grab? I'd really like to see it. Thing is... I just plum gave up trying to explain it to casual acquaintances or, worse yet, strangers. I've found it to be a total waste of time -- Tired of the dumbass deer-in-the-headlights slack-jawed gaze I get. Perhaps you have a better approach? See, the problem is you look just fine (most of the time), no tumors or terminal cancer to report... you don't even have a cough so no one can relate except to how they know a HA feels. 3 advils and 5 minutes later they're fine. Oh, last time I checked only 0.1% of the population gets 'em. I've never even met anyone in person that gets CHs and I've been at it 27 years. |
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Title: Re: My news segment did a lot of good.... Post by BarbaraD on Dec 9th, 2004, 11:30am Great job Jayne... I'm surprised you didn't clobber that woman. Marlin - you need to make a meet and greet or a convention. It's an eye opening experience (or eye closing experience with several getting hit). But it's not something you forget. Again - keep up the good work Jayne..... They'll have to pay attention to us someday. Hugs BD |
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Title: Re: My news segment did a lot of good.... Post by Cerberus on Dec 9th, 2004, 1:43pm I too would like a copy... Video format doesn't matter as long as its digital and not a tape. Peace... Ramon |
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Title: Re: My news segment did a lot of good.... Post by Jeepgun on Dec 9th, 2004, 1:54pm Ditto! I wanna see!! |
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Title: Re: My news segment did a lot of good.... Post by nani on Dec 9th, 2004, 2:16pm Quote:
I've heard medical professionals use that phrase! |
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Title: Re: My news segment did a lot of good.... Post by Jeepgun on Dec 9th, 2004, 2:20pm My Vanderbilt-trained neurologist showed me a poster that detailed the signs and symptoms of a cluster headache, and even pointed out to me, "See? The word 'migraine' doesn't appear on this poster anywhere!" THEN, the blithering MORON has the stones to write me a script for Depakote for "cluster migraines." Holy mother of god, I wanted to kick him in the balls repeatedly, until he was curled up on the floor, retching, and screaming for mercy! [smiley=furious.gif] |
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Title: Re: My news segment did a lot of good.... Post by vig on Dec 9th, 2004, 2:21pm Thanks Jayne! Some people will never learn, but I bet the rest all did. |
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Title: Re: My news segment did a lot of good.... Post by BlueMeanie on Dec 9th, 2004, 3:09pm Hi Jayne, I checked the archives at the News station which originally broadcasted your video. Unfortunately, they don't go back that far. Glad your video got some attention. I really thought you did an excellent job. Don't worry about the lady. As you know, you'll never get CH's across to everyone. |
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Title: Re: My news segment did a lot of good.... Post by don on Dec 9th, 2004, 3:38pm The saga of the mis-diagnosis continues. Only now it's the flip side. Used to be CH sufferers being diagnosed with migraines, now its migraine sufferers being diagnosed a clusters. |
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Title: Re: My news segment did a lot of good.... Post by Annette_Emond on Dec 9th, 2004, 10:14pm Ok... I've seen this before and I've never said anything..... Years ago, when I was still using birth control pills, I suffered from "clusters" of Migraines. The doctors used the term cluster migraines. I'm sure that many doctors still do. They were definitely migriane headaches and definitely NOT CLuster Headaches!. But give the poor Migrainers a break! They hurt too. Sometimes in clusters. Annette |
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Title: Re: My news segment did a lot of good.... Post by Jeepgun on Dec 10th, 2004, 9:45am Absolutely, Annette. Pain is pain, no doubt about it. I would never want to experience what migrainers go through! What really sucks is being misdiagnosed as suffering from "cluster migraines," and then given migraine medication, instead of being treated for cluster headaches. :( |
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