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Edna
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CH- topic of speech
« on: Oct 10th, 2004, 12:19pm »
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Hey gang,
 
My daughter Kali, is having to write a speech for her college speech class. She has chosen the topic of Cluster Headaches. It has to include at least 3 points...so I'm asking for help here.
 
What do you guys would think the 3 most important topics to touch on??
 
I've already advised her that I think one should certainly be, the misdiagnosis of ch.
 
Open to any and all suggestions.
 
AND......not to worry.....I've already warned her....NO talk about how nutty we really all are!!   Roll Eyes
 
thanks ahead of time,
EDNA
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Re: CH- topic of speech
« Reply #1 on: Oct 10th, 2004, 12:24pm »
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1) Only men get CH.
2) Women don't get CH.
3) Women get Meegraines!
 
........................alley Grin
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Re: CH- topic of speech
« Reply #2 on: Oct 10th, 2004, 12:42pm »
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Hi Edna (and Kali  Smiley),
 
I think a breakdown like this may work:
 
1.  Physical manifestation:  The pain and all the symptoms.  This article would be an excellent guide to make sure all the facts and points are made:
http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498& ;Section=Feature
 
2.  The non-physical stuff:  the day-to-day mindset of the clusterhead.  The thoughts, concerns, and daily life.
 
3.  Misdiagnosis, insurance stuff, ER's and docs, medical research and future stuff.
 
You can further break down those 3 points as needed, but I think those are the 3 biggies.
 
Thank you, Kali  Kiss for thinking of us
 
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Re: CH- topic of speech
« Reply #3 on: Oct 10th, 2004, 12:44pm »
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    1)   lack of predictablity
 
 
   2)  lack of public / doctor support
 
   3) cost of care/ pain management
 
   4) missing work / social events/ negative affects
 
   5)  turning to _____ for relief
 
   6)  bonds the link sufferers and supporters together
 
   7) Internet as a life saver....
 
 
Do any of these topics help ya?
 
Hope she learns a lot through the research....
hope she never suffers these.... either....
 
huggers!
TJ
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Re: CH- topic of speech
« Reply #4 on: Oct 10th, 2004, 1:04pm »
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How it can break you physically, emotionally and financially!
« Last Edit: Oct 10th, 2004, 1:36pm by jonny » IP Logged
Charlie
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Re: CH- topic of speech
« Reply #5 on: Oct 10th, 2004, 3:33pm »
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Nice idea and I know Kail will do just fine.  
 
My idea is for you to go to Simon's letter and scroll down and around. Making people understand that is has nothing to do with "headaches," is important.  
 
http://www.clusterheadaches.org.uk/home/index.cfm?
 
The lack of good medication.  
 
Getting others to understand why you go though such contortions and rituals when attacked.  
 
Good luck folks and see you soon on MSN.
 
Charlie
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catlind
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Re: CH- topic of speech
« Reply #6 on: Oct 10th, 2004, 6:21pm »
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A young man sits in the corner with a gun in his hand...his eye is swollen and tears fall in torrents...he can only breathe partially because his nasal passage has gone from running to completely congested...his head is badly bruised from repeatedly smashing it against the cold hard concrete block wall...exhaustion has washed over him like a cresting tidal wave...the pain has finally abated and although he's sure blood is pouring from his eye and temple, he knows that's not really the case.  His thoughts come in flashes as he relives the days, months and years that he has dealt with this exquisite and perfect pain...he can no longer deal with it, the pain is beyond anything he can imagine, it's taken away his entire life, the people he loves, the things he enjoys...there is no cure...well maybe there is...just one......
 
And the gun goes off...
 
Judges, members of the audience, and fellow orators....
 
I have just described some of the things a cluster headache sufferer goes through, and how it ends for some.  
 
blah blah blah fill in the rest Wink
 
Cat
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Re: CH- topic of speech
« Reply #7 on: Oct 10th, 2004, 8:09pm »
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What a great opportunity to educate a few more people!
 
I like the idea of starting with a dramatic story.  She shouldn't have any trouble finding one of those.  
 
The high points are actually pretty hard to pick out, but here are my thoughts ...
 
- Lack of knowledge (even by medical professionals) leading to misdiagnosis, often for many years.  This should definitely include more than a mention on the fact that "women don't get clusters!"
 
- Physical differentiation of clusters and other types of "headaches."  Personally, I feel the word "headache" should not even be attached to the disease.  Anyone who's had a cluster attack knows it's not a headache.
 
- The ways we all react differently to various treatments.  there isn't just one med ... one pill ... etc. that all sufferers can vouch for and find comfort in.  It's an ongoing battle to find a cure or standard treatment for a horrible and debilitating disease.
 
Good luck, Kali!
 
Kris
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Re: CH- topic of speech
« Reply #8 on: Oct 11th, 2004, 6:15am »
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Cat - Pretty dramatic intro.  Nice writing skills.
 
You have more suggestions here than you might know what to do with.  I would only suggest that you touch on the alienation felt by clusterheads.  How no one really understands what it is or feels like to live with the beast.  How idiots suggest that it is e-numbers in your diet or just a headache.  How many clusterheads have never met another sufferer, and how places like this community can be a God-send for many of us.  
 
All that may fit into the category of "emotional pain."
 
Casey
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Re: CH- topic of speech
« Reply #9 on: Oct 11th, 2004, 9:58am »
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1. Physical and mental toll.
 
2. Quality of Life.
 
3. Social affect. (family, work etc.)
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Re: CH- topic of speech
« Reply #10 on: Oct 12th, 2004, 8:36am »
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It hurts, docs don't know that much, finding the right meds is hard...
 
Tell Kali: Good luck for the speech!
 
 
Best wishes,
sandie99
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Re: CH- topic of speech
« Reply #11 on: Oct 12th, 2004, 8:46am »
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What a great topic. I am thinking, Wow, what if this speech touches someone in her class or someone of her classmates relatives that may have CH and not  no or understand what they have. A perfect window of opportunity to help other people.
Good luck
 
Ruth
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TomM
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Re: CH- topic of speech
« Reply #12 on: Oct 12th, 2004, 8:52am »
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on Oct 10th, 2004, 6:21pm, catlind wrote:
A young man sits in the corner with a gun in his hand...his eye is swollen and tears fall in torrents...he can only breathe partially because his nasal passage has gone from running to completely congested...his head is badly bruised from repeatedly smashing it against the cold hard concrete block wall...exhaustion has washed over him like a cresting tidal wave...the pain has finally abated and although he's sure blood is pouring from his eye and temple, he knows that's not really the case.  His thoughts come in flashes as he relives the days, months and years that he has dealt with this exquisite and perfect pain...he can no longer deal with it, the pain is beyond anything he can imagine, it's taken away his entire life, the people he loves, the things he enjoys...there is no cure...well maybe there is...just one......
 
And the gun goes off...
 
Judges, members of the audience, and fellow orators....
 
I have just described some of the things a cluster headache sufferer goes through, and how it ends for some.  
 
blah blah blah fill in the rest Wink
 
Cat

Been there up until the part where the gun goes off. How many of us have been there? I suspect more than 90%. It's chilling to see that in print. Thank you, Cat.
Back to the oringinal thread...
Start off with that story Cat wrote. Then describe the "Why so desparate?" syndrome. End with "And the cycle continues..."
TomM
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Re: CH- topic of speech
« Reply #13 on: Oct 12th, 2004, 9:42am »
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I've sat on the edge of the bed with a loaded .38 in my mouth and the hammer cocked back, finger on the trigger. I still consider it on almost a daily basis, when I'm in cycle. I've also stood on the very edge of the roof of a 24-story building and thought, Just one little step... One foot in front of the other, stepping off into empty space...
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Re: CH- topic of speech
« Reply #14 on: Oct 12th, 2004, 10:46am »
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It's usually on the highway if I'm being hit nastily...
Just veer to the left into the oncoming truck and it'll all be over.  
Never gonna happen though.
I LOVE LIFE and it goes away as quick as it came.
TMI?
What Tom's about to say has a big part in it too.
« Last Edit: Oct 12th, 2004, 12:36pm by vig » IP Logged


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TomM
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Re: CH- topic of speech
« Reply #15 on: Oct 12th, 2004, 12:32pm »
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You know what keeps me going? The pain I feel everytime I go to a funneral. I remind myself of the pain I feel and think of the pain I would inflict upon those I leave behind if I did that. So far, it's worked.
 
Sometimes my Catholic rationalization skills come in handy.  Smiley
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Edna
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Re: CH- topic of speech
« Reply #16 on: Oct 15th, 2004, 8:28am »
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Hey Hey, speak took 7 minutes and 58 seconds.  limit was 7 minutes......butttttttttt
 
She still made two A's on it.
 
Happened that a fellow student knew someone who had those kinds of headaches, and had lots of questions during her question and answer session afterwards.
 
Thought it would be a written speech, but it wasn't.....I was going to put up a copy for you all to read.........all she had was an outline and had to go from there.  
 
So thank you ALL for your input, it helped Kali tremendously.
 
And for next project, she's going to help my youngest son Jake with an upcoming research project for his high school English class. He needs a good grade.  
 
Dang, ch is good for something   Undecided
 
OH and btw...........she gave reference sites for anyone interested to come check us out.
 
Bravo Kali, thanks for helping spread the word.
 
pf wishes,
EDNA
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Re: CH- topic of speech
« Reply #17 on: Oct 15th, 2004, 8:31am »
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Grin Cheesy Grin
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Re: CH- topic of speech
« Reply #18 on: Oct 15th, 2004, 8:58am »
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BRAVO!! Congratulations and thanks to Kali!  Smiley  
sayyes
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Tom K
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Re: CH- topic of speech
« Reply #19 on: Oct 15th, 2004, 11:57am »
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on Oct 10th, 2004, 12:42pm, eyes_afire wrote:
Hi Edna (and Kali  Smiley),
 
I think a breakdown like this may work:
 
1.  Physical manifestation:  The pain and all the symptoms.  This article would be an excellent guide to make sure all the facts and points are made:
http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498& ;Section=Feature
 
2.  The non-physical stuff:  the day-to-day mindset of the clusterhead.  The thoughts, concerns, and daily life.
 
3.  Misdiagnosis, insurance stuff, ER's and docs, medical research and future stuff.
 
You can further break down those 3 points as needed, but I think those are the 3 biggies.
 
Thank you, Kali  Kiss for thinking of us
 
--- Steve

 
That could work out to a whole Phd thesis, on part 3 alone.  I agree with Charlie, go the it's not just a headache route.
 
T
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