Fabalicious Posted December 3, 2014 Share Posted December 3, 2014 Quote Link to comment Share on other sites More sharing options...
spiny Posted December 3, 2014 Share Posted December 3, 2014 It is a good video that I have seen before. The statement about the pupil is odd. It may dilate during an attack. I never looked. My understanding is that miosis can, probably always, appear along with the droop (ptosis). That is a contraction of the pupil, not dilation. But the cumulative effect is constriction to the point that it won't dilate, even in the dark. Horners Syndrome. Funny how they always shine a bright light into your eye and move it away and back again in a bright room. The test needs to be done with lower light because that shows the lack of dilation. Two years ago, I purposely turned away to face the darkest side of the room after I asked the Neuro to turn off the light and then asked him to repeat the test. The difference was obvious then. My Ch pupil is permanently constricted to a small degree, even not having a full blown cycle for quite a while now. But, the video is well done news reporting. All the help we can get, right? Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 3, 2014 Share Posted December 3, 2014 Anyone else notice they flashed the Cluster Busters website just past the middle of video!!! J Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted December 3, 2014 Share Posted December 3, 2014 I'll give it an A for raising awareness of CH, and that aspect is a major part of my grading system. Grade C for therapies discussed. It's certainly nice they focus on O2, and flashed ClusterBusters on that laptop. They went and consulted neurologists in order to find out about the the latest treatments, which would make sense you'd think - heck that's what I woulda done if I was them and knew nothing about CH, but CH is an odd case where that is not the best place to find out about the most effective preventative at this time. So they missed a little something (OK a big something), but aside from that, well done IMO. Quote Link to comment Share on other sites More sharing options...
spiny Posted December 3, 2014 Share Posted December 3, 2014 The best I hope for is raising awareness. They mostly miss something. But, I missed the CB blimp!!!!! : Fabac: 'Meddle not in the affairs of dragons, for you are crunchy...and good with ketchup.' I have that bumper sticker on my fridge!!! ;D Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted December 3, 2014 Share Posted December 3, 2014 I agree, good awareness report and great to see the cluster buster flash. Has anyone else heard of, or tried, botox for CH? This is the first time I can recall seeing it mentioned. I know it helps some types of migraines, not my type of course, but some. But, I suppose it's legal and thus safe to talk about. MG Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted December 3, 2014 Share Posted December 3, 2014 Botox has been tried and discussed. Generally dismal, disappointing results for CH, but I don't know if that may have been due to it being used in the standard migraine (wrong) spots? Dan/Hipshot tried the standard Botox treatment with no success. Then he got the doctor to try something different and give him "a BIG shot of Botox in EXACTLY the same spot in my neck where he gives me the nerve block" .....at which point he got relief for 3 weeks. That discussion thread is here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1380388743/3 I know a very hard case chronic CH gal who also suffers from migraines. Botox has helped with her migraines aplenty but hasn't helped with her CH. Quote Link to comment Share on other sites More sharing options...
Fabalicious Posted December 4, 2014 Author Share Posted December 4, 2014 Fabac: 'Meddle not in the affairs of dragons, for you are crunchy...and good with ketchup.' I have that bumper sticker on my fridge!!! Great minds think alike! I agree with your grading system Jeebs. I was just really happy that we are raising awareness, thats half the battle. And good catch J!!! I did not see that the first time! WOOOT GOGO CB! I think what we need for awareness is to find some kind of celebrity that has CH. Going on odds alone there has to be at least one....I just hope its not one of those Kardashians . Although if they actually DID have it and would be willing to do an awareness commercial for us(no charge) that would raise my opinion of the whole family ( not that they are worried about my opinion). Whoever it is probably hides it...like I did for so long...hmmm...ok time to investigate...HUGS! Love y'all! Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 4, 2014 Share Posted December 4, 2014 Fabac, Someone mentioned it some time back but Daniel Radcliffe has CH. http://www.huffingtonpost.co.uk/2014/08/20/daniel-radcliffe-blood-pressure-cluster-headaches_n_5691530.html Someone in the UK should drop in on him. Funny, wouldn't that be awesome to have him onboard with busting J Quote Link to comment Share on other sites More sharing options...
Fabalicious Posted December 4, 2014 Author Share Posted December 4, 2014 HARRY POTTER!!! That would be awesome! Of course I would have to stop giggling and grinning like a loon if I were to ever meet him. ;D Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 4, 2014 Share Posted December 4, 2014 Some other folks we've discussed in the past: Lisa Kudrow is the daughter or granddaughter (I never can get it straight) of cluster headache specialist Dr. Lee Kudrow, who himself has CH. The TV celebrity known as the "Millionaire Matchmaker," Patti Stanger, announced on Bravo TV that she has CH. A guy who once was a very good basketball player for the Bulls and other teams, Kendall Gill, was said to have CH. The late film director and producer Frank Capra had CH. Here's how he described one of his attacks: >>"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. I clutched my head, stumbled out to the broad lawns and over the hedges to the deserted tennis courts and then, there in the dark, I moaned, I panted. Ballooned my cheeks, blew out short bursts of air, licked my hot lips, wiped tears that poured out of my right eye, and clawed at my head trying to uproot the fiendish talons from their iron grip. One racking hour later the talons let go. The paroxysm eased as suddenly as it had convulsed.<< Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted December 4, 2014 Share Posted December 4, 2014 Lisa Kudrow is the daughter or granddaughter... The way I remember it is she is the daughter of (retired) Dr. Kudrow, who has CH, and she is the sister of the currently practicing Dr. Kudrow, who doesn't have CH. Quote Link to comment Share on other sites More sharing options...
Fabalicious Posted December 5, 2014 Author Share Posted December 5, 2014 Broad lawns and tennis courts? I wanna have my attacks where he has his please. OK now I have a list.....I am going to start writing to these people ...if I get a response...I will be referring them to one of our high council so y'all be prepared for an influx of star power. 8-) (riiiiight) Hugs! Love y'all! ;D Quote Link to comment Share on other sites More sharing options...
didgens Posted December 10, 2014 Share Posted December 10, 2014 Dr. Kudrow is my sons doc Quote Link to comment Share on other sites More sharing options...
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