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Title: Educating clinicians Post by Dr._Rob_Supernaw on Aug 29th, 2003, 3:51pm Beginning in January, the doctoral students here at Wingate University in North Carolina (USA) will be asked to network (via e-mail) with real people with real medical challenges -- and we definitely consider cluster headaches a real and significant challenge. What we hope to accomplish is to have our doctoral students who already understand the drugs used to treat conditions, just what it is like to have a medical condition. That is, we wish to have the students understand the human side of medical problems, not just the drug treatments. Would you be willing to carry on an e-mail exchange with one or a team of two of our students? Your identity could be anonymous. And, I guarantee that these students will not ask for any information you feel uncomfortable divulging. It is our belief that these students need to understand the patient's perspective in order to fully understand specific medical conditions such as cluster HA. Thank you for your consideration of this personal request. Please e-mail me if you are interested in helping...- Dr. Robert B. Supernaw (supernaw@wingate.edu) |
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Title: Re: Educating clinicians Post by Cerberus on Aug 29th, 2003, 3:55pm WOW! |
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Title: Re: Educating clinicians Post by forgetfulnot on Aug 29th, 2003, 3:55pm Check your mail Doc! Lee |
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Title: Re: Educating clinicians Post by jonny on Aug 29th, 2003, 3:57pm ROCK ON!!!! Thanks Doc! ;D ....................................jonny |
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Title: Re: Educating clinicians Post by BillyJ. on Aug 29th, 2003, 4:14pm You've got mail. THANK YOU! |
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Title: Re: Educating clinicians Post by Donna on Aug 29th, 2003, 4:26pm Thank you very much for the opportunity to communicate with your students. It is something that we have had a great desire to do for a very long time. I am another who would be happy to receive e-mail, and will send you a note authorizing you to give out my address. Out of curiosity, how did you find our message board, and have you visited our organization's (O.U.C.H.- Organization for the Understanding of Clusterheadaches) site?http://www.clusterheadaches.org It's worth looking at. |
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Title: Re: Educating clinicians Post by Mark C on Aug 29th, 2003, 4:29pm |
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Title: Re: Educating clinicians Post by Patrick_A on Aug 29th, 2003, 4:36pm Yes, count me in! You've got mail! PFDAN, Patrick |
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Title: Re: Educating clinicians Post by Kirk on Aug 29th, 2003, 4:58pm Hell yes absooooooolutly. BUMP TTFN |
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Title: Re: Educating clinicians Post by Linda_Howell on Aug 29th, 2003, 5:07pm Without a doubt Sir. And you're gonna have more mail than you know what to do with. Including mine. Linda Howell |
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Title: Re: Educating clinicians Post by Woobie on Aug 29th, 2003, 5:28pm BUMP!!!!!! ;D ;D!!!!!!!!!!!!!!!! ;D ;D |
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Title: Re: Educating clinicians Post by Cooked Brain on Aug 29th, 2003, 7:04pm BUMP! to the top... |
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Title: Re: Educating clinicians Post by suzy617 on Aug 29th, 2003, 7:18pm You've got mail! Thank you, Susan |
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Title: Re: Educating clinicians Post by ClusterChuck on Aug 29th, 2003, 7:45pm What she said!!! Chuck |
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Title: Re: Educating clinicians Post by Linda_Howell on Aug 29th, 2003, 8:08pm another bump for those who had to work today and may not have seen this........ LindaH |
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Title: Re: Educating clinicians Post by Ree on Aug 29th, 2003, 8:11pm Wow Bring on the questions.........thanks for your interest... Ann Marie "Ree"Theriault supporter of a Cluster Headache sufferer. |
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Title: Re: Educating clinicians Post by andy on Aug 29th, 2003, 8:26pm YES |
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Title: Re: Educating clinicians Post by Ree on Aug 29th, 2003, 8:44pm bump |
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Title: Re: Educating clinicians Post by Patrick_A on Aug 30th, 2003, 5:25am Bump |
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Title: Re: Educating clinicians Post by Woobie on Aug 30th, 2003, 8:36am ;D |
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Title: Re: Educating clinicians Post by taraann on Aug 30th, 2003, 9:12am Count me in |
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Title: Re: Educating clinicians Post by ShariRae on Aug 30th, 2003, 9:34am me toooo.. me toooo |
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Title: Re: Educating clinicians Post by Roxy on Aug 30th, 2003, 11:48am I received a response from the Dr. this morning......anyone else get one? |
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Title: Re: Educating clinicians Post by Prense on Aug 30th, 2003, 11:49am Thanks all for keeping this bumped up, and thanks a ton Doc for taking this approach! Chris |
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Title: Re: Educating clinicians Post by suzy617 on Aug 30th, 2003, 12:15pm Yes Roxy, I also received a response from the Doctor. :) suzy |
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Title: Re: Educating clinicians Post by Tim_w on Aug 30th, 2003, 12:44pm COOL!!!!!!!!!!!!!!! Iam In Tim_w |
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Title: Re: Educating clinicians Post by judyw on Aug 30th, 2003, 1:03pm Thanks for the chance, you will be receiving more mail than you think... :D judyw |
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Title: Re: Educating clinicians Post by StanTheMan on Aug 30th, 2003, 1:32pm BUMP! ABSOLUTELY!!! :D StanTheMan |
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Title: Re: Educating clinicians Post by forgetfulnot on Aug 30th, 2003, 1:50pm on 08/30/03 at 11:48:10, Roxy wrote:
Yep, I got one too. Lee |
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Title: Re: Educating clinicians Post by Giovanni on Aug 30th, 2003, 3:45pm A doctor of pharmacology diagnosed my cluster headaches during my four years in clinical trials for various statin drugs for lowering LDL. He quickly referred me to a specialist, neurologist, who specialized in headaches. I am extremely appreciative, in hindsight, for this quick diagnosis especially after reading about the misdiagnosis of my cluster-buddies here on this message board. A lot of you have gone years with no real help/understanding and misdiagnosis from health care professionals. We all should strive for all people in the health industry to understand what we go through in order that more effective drugs are developed. We really do appreciate your interest, doctor. ;D |
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Title: Re: Educating clinicians Post by Linda_Howell on Aug 30th, 2003, 4:05pm I got my response too and I'm really looking forward to talking with his students. In fact I'll clear up my very busy schedule (lol) for a month if that's what it takes. LindaH |
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Title: Re: Educating clinicians Post by eyes_afire on Aug 30th, 2003, 4:58pm This is great! No doubt my email is forthcoming. Although I'm well controlled with verapamil, it is a constant battle. Dr Robert Supernaw, thank you for promoting this exchange. This is a nice opportunity to promote understanding of cluster headaches and is mutually beneficial for all involved. --- Steve |
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Title: Re: Educating clinicians Post by J.ten_Dam on Aug 30th, 2003, 5:18pm Bump ;D :Dam I glad I checked out the message board tonight. I would like to be counted in but I live in holland. REgards Joke |
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Title: Re: Educating clinicians Post by Charlie on Aug 30th, 2003, 8:28pm A very nice opportunity. I'd be glad to add to the exhange. Perhaps my being 57 and free of this horror for 12 years would be of interest. Charlie. |
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Title: Re: Educating clinicians Post by totka on Aug 30th, 2003, 8:42pm +1 totka |
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Title: Re: Educating clinicians Post by Callico_Kid on Aug 30th, 2003, 11:57pm I'm IN!!! Glad I finally got my 'puter fixed, or I'd have missed this one! jc |
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Title: Re: Educating clinicians Post by Woobie on Aug 31st, 2003, 6:54am ;D ;D |
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Title: Re: Educating clinicians Post by Carl_D on Aug 31st, 2003, 7:04am SIGN ME UP!!!!!!!!!!! 16 year Cluster war veterean; the last 5 1/2 years chronic. Anything I can do to contribute to the medical community count me in. C. Franklin Daniels |
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Title: it's not just a headache Post by rumplestiltskin on Aug 31st, 2003, 8:43am Quote:
yup Quote:
Make sure y'all e-mail him...not just post it here. Quote from his response....seems we have a heavy-hitter's attention...yea baby! Quote:
rumpleBUMPskin |
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Title: Re: Educating clinicians Post by eyes_afire on Aug 31st, 2003, 9:16am Den's right. Send the email. How bad do we hate cluster headaches? Now's the chance to have a voice. --- Steve |
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Title: Re: Educating clinicians Post by andy on Aug 31st, 2003, 9:22am This is a Good thing. I got my reply yesterday. I cant wait to put them students in our shoes ...........andy |
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Title: Re: Educating clinicians Post by Leesa on Aug 31st, 2003, 9:42am Thanks doc!!!! You got mail!!!! BUMP!!!! ;D ;D |
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Title: Re: Educating clinicians Post by godsjoy on Aug 31st, 2003, 3:31pm Yippeeeeeeeeeeeee!!!!! Oh yes......So happy to hear of the interest and I'll be checking my e-mail for a response ........I'm 49 years old with clusters for 14 years......trying to hang in there this last (I hope and pray) part of the cycle.....It was under control for a little bit when I "think" verapamil kicked in.....but they seem to want to kick my head in again...."IF" the cycle is the same.....I should only have 3 more weeks left....I usually go for about 12 weeks tops......Oh...PLEASE GOD? Bless you, Karen in Dallas, TX |
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Title: Re: Educating clinicians Post by Miklos on Sep 1st, 2003, 9:45am Sent my e-mail as well. |
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Title: Re: Educating clinicians Post by taraann on Sep 1st, 2003, 12:59pm I got my reply within a few hours of emailing Dr. Supernaw! |
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Title: Re: Educating clinicians Post by Jayne on Sep 1st, 2003, 1:06pm Yes I couldn't beleive how fast he replied!! |
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Title: Re: Educating clinicians Post by Donna on Sep 1st, 2003, 4:54pm Got mine today. The good doc works on weekends and holidays! |
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Title: Re: Educating clinicians Post by StanTheMan on Sep 1st, 2003, 5:46pm Got my reply this morning! I'm excited! Hope and pray this leads to bigger and better things from the medical community! Regards to all on the board! Be well. StanTheMan :D |
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Title: Re: Educating clinicians Post by judyw on Sep 1st, 2003, 7:57pm Thanks, Dr Rob...mail received and will await furthur correspondence...appreciate the opportunity to assist in furthuring CH awareness... judyw |
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Title: Re: Educating clinicians Post by ShariRae on Sep 1st, 2003, 8:33pm still awaiting a reply to my email heres hopin :) Shari |
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Title: Re: Educating clinicians Post by ozzman on Sep 2nd, 2003, 9:21am Sent mine |
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Title: Re: Educating clinicians Post by Linda T on Sep 2nd, 2003, 2:39pm My e-mails in, got my reply - can't wait to get started. Linda T |
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Title: Re: Educating clinicians Post by Teach on Sep 2nd, 2003, 2:58pm Im IN!!!!!!!!...........Teach |
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Title: Re: Educating clinicians Post by katethecelt on Sep 2nd, 2003, 11:02pm I would not pass up a chance like this to help. ANYTHING to beat the Beast! Kate |
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Title: Re: Educating clinicians Post by zanychef on Sep 3rd, 2003, 7:45am count me in too ;D |
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Title: Educated clinicians Post by Mr.Happy on Sep 8th, 2003, 11:51am Pardon me for not being the _Trusting Type_.....but this whole thing with Dr. Rob sounded just a Tad too good to be true, falling on us like it did out of the blue. Soooooo......... I just got off the fone w/Dr. Rob. This thing is A-100% All American God's Own Gospel true fact. He was AMAZED at the response......well over 60 people will be involved. Send in your request, if you haven't done so. The really wry twist is _HE_ wasn't sure if he'd get honest responses from some filthy message board on the internet. Heh. Wonder if he has any friends in the field that might want to prod and poke some Clusties too. Wry indeed, RJ |
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Title: Re: Educating clinicians Post by surfshi on Sep 8th, 2003, 11:51pm thats the way educate educate check the mail and let me know...SURF |
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Title: Re: Educating clinicians Post by tsayswhy on Sep 8th, 2003, 11:56pm me too!!!!tari |
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Title: Re: Educating clinicians Post by ShariRae on Sep 9th, 2003, 7:47pm I got my email today..yayyyyyyyyyyy!! I cant wait to get started....hopefully some REAL understanding for us from the medical community... Shari |
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Title: Re: Educating clinicians Post by cootie on Sep 9th, 2003, 8:12pm I'm jus a supporter here but this is one big step fer Clusterheadism........I jus wanted ta say I am impressed ! Thanks to the doc ! Pam that supports a suffer'r PS: BUMP !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! |
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Title: Re: Educating clinicians Post by Charlie on Sep 9th, 2003, 8:49pm Yeah, I got an email today from these people asking what other stuff has been bugging me over the years and how it and the therapy might have affected my Ch. I'll have to give them my history. My suggestion is that when you do this, pare it down as much as you can. Give them both barrels about drugs, and the trouble we have with HMOs but be reasonably sober about it. I'd also get in how other neurological problems seem to get faster and fuller attention, at least at first. I really think epilepsy, for instance, being common gets much better attention. After all, they can actually do something about it. Just come ideas from MOC |
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Title: Re: Educating clinicians Post by Mark C on Sep 9th, 2003, 8:51pm FUCKENEH! |
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Title: Re: Educating clinicians Post by nancyc on Sep 9th, 2003, 9:23pm I heard from them twice so far...asking about anyother health problems besides clusters, etc....told them about my TMJ...they said the project is to start in January..I cant wait...and they are in NC too....yeah, for us Southerners LOL...smiles,nancyc |
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Title: Re: Educating clinicians Post by Mr.Happy on Sep 9th, 2003, 9:49pm Gee Nanc, all they asked me this time was a "list of any other medical conditions for which you are currently receiving care." Great for me......25 words or less. It's great they're serious about this. Seems they tried the same approach at _THIS_ (http://www.e-health-questions.info/html/board/index.php/action=replyquote&forum=diabetes&mid=268&realm=$realm) site. No telling how many other places they visited. Glad we fit the bill. Ever forward, RJ |
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