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        New Message Board Archives >> Jul-Sep 2003 >> Educating clinicians
        
(Message started by: Dr._Rob_Supernaw on Aug 29th, 2003, 3:51pm)
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)
Title: Re: Educating clinicians
Post by Cerberus on Aug 29th, 2003, 3:55pm
WOW!
Title: Re: Educating clinicians
Post by forgetfulnot on Aug 29th, 2003, 3:55pm
Check your mail Doc!

Lee
Title: Re: Educating clinicians
Post by jonny on Aug 29th, 2003, 3:57pm
ROCK ON!!!!

Thanks Doc! ;D

....................................jonny
Title: Re: Educating clinicians
Post by BillyJ. on Aug 29th, 2003, 4:14pm
You've got mail.
 
THANK YOU!
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.
Title: Re: Educating clinicians
Post by Mark C on Aug 29th, 2003, 4:29pm
Far out!....you've got mail!
Title: Re: Educating clinicians
Post by Patrick_A on Aug 29th, 2003, 4:36pm
Yes, count me in! You've got mail!

PFDAN, Patrick
Title: Re: Educating clinicians
Post by Kirk on Aug 29th, 2003, 4:58pm
Hell yes absooooooolutly.

BUMP



TTFN
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
Title: Re: Educating clinicians
Post by Woobie on Aug 29th, 2003, 5:28pm
BUMP!!!!!! ;D ;D!!!!!!!!!!!!!!!!     ;D ;D
Title: Re: Educating clinicians
Post by Cooked Brain on Aug 29th, 2003, 7:04pm

BUMP!

to the top...
Title: Re: Educating clinicians
Post by suzy617 on Aug 29th, 2003, 7:18pm
You've got mail!

Thank you,
Susan
Title: Re: Educating clinicians
Post by ClusterChuck on Aug 29th, 2003, 7:45pm
What she said!!!
Chuck
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
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.
Title: Re: Educating clinicians
Post by andy on Aug 29th, 2003, 8:26pm
       YES
Title: Re: Educating clinicians
Post by Ree on Aug 29th, 2003, 8:44pm
bump
Title: Re: Educating clinicians
Post by Patrick_A on Aug 30th, 2003, 5:25am
Bump
Title: Re: Educating clinicians
Post by Woobie on Aug 30th, 2003, 8:36am
;D
Title: Re: Educating clinicians
Post by taraann on Aug 30th, 2003, 9:12am
Count me in
Title: Re: Educating clinicians
Post by ShariRae on Aug 30th, 2003, 9:34am
me toooo.. me toooo
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?
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
Title: Re: Educating clinicians
Post by suzy617 on Aug 30th, 2003, 12:15pm
Yes Roxy, I also received a response from the Doctor.  :)

suzy
Title: Re: Educating clinicians
Post by Tim_w on Aug 30th, 2003, 12:44pm
COOL!!!!!!!!!!!!!!! Iam In
Tim_w
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
Title: Re: Educating clinicians
Post by StanTheMan on Aug 30th, 2003, 1:32pm
BUMP!

ABSOLUTELY!!! :D


StanTheMan
Title: Re: Educating clinicians
Post by forgetfulnot on Aug 30th, 2003, 1:50pm

on 08/30/03 at 11:48:10, Roxy wrote:
I received a response from the Dr. this morning......anyone else get one?


Yep, I got one too.

Lee
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
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  
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
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
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.
Title: Re: Educating clinicians
Post by totka on Aug 30th, 2003, 8:42pm
+1
totka
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
Title: Re: Educating clinicians
Post by Woobie on Aug 31st, 2003, 6:54am
;D ;D
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
Title: it's not just a headache
Post by rumplestiltskin on Aug 31st, 2003, 8:43am

Quote:
I received a response from the Dr. this morning......anyone else get one?


yup


Quote:
Count me in


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:
As a Diplomate of the American Academy of Pain Management and as Editor-in-Chief of the American Journal of Pain Management, I know full-well that cluster headache is so much more complex a condition than most generalists understand, and we feel that patients can best educate we professionals on the quality of life issues associated with the condition.


rumpleBUMPskin
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
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
Title: Re: Educating clinicians
Post by Leesa on Aug 31st, 2003, 9:42am
Thanks doc!!!! You got mail!!!!


BUMP!!!!  ;D ;D
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
Title: Re: Educating clinicians
Post by Miklos on Sep 1st, 2003, 9:45am
Sent my e-mail as well.
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!
Title: Re: Educating clinicians
Post by Jayne on Sep 1st, 2003, 1:06pm
Yes I couldn't beleive how fast he replied!!
Title: Re: Educating clinicians
Post by Donna on Sep 1st, 2003, 4:54pm
Got mine today.  The good doc works on weekends and holidays!
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
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
Title: Re: Educating clinicians
Post by ShariRae on Sep 1st, 2003, 8:33pm
still awaiting a reply to my email
heres hopin :)
Shari
Title: Re: Educating clinicians
Post by ozzman on Sep 2nd, 2003, 9:21am
Sent mine
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
Title: Re: Educating clinicians
Post by Teach on Sep 2nd, 2003, 2:58pm
Im IN!!!!!!!!...........Teach
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
Title: Re: Educating clinicians
Post by zanychef on Sep 3rd, 2003, 7:45am
count me in too ;D
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
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
Title: Re: Educating clinicians
Post by tsayswhy on Sep 8th, 2003, 11:56pm
me too!!!!tari
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
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 !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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
Title: Re: Educating clinicians
Post by Mark C on Sep 9th, 2003, 8:51pm
Pardon my French...but....


FUCKENEH!

I feel progress.....a very rare feeling indeed!
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
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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