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        New Message Board Archives >> 2002 Posts >> Ideas & suggestions wanted
        
(Message started by: Peppermint on Nov 3^rd, 2002, 1:12pm)

Title: Ideas & suggestions wanted
Post by Peppermint on Nov 3^rd, 2002, 1:12pm

Hi..
I did not want to post about this and have been going about it quietly but I'm having trouble getting feedback. I have a contact who I've been speaking to about doing a documentary on Cluster Headaches. I have a few ideas written down, one response with ideas...Thank you Don.. and some others are pending responses.
If there were a long documentary, say 1 hour, what would be the critical things you'd want the world to know about Clusters? What would you like to see? What are the issues you believe are at the forefront of dealing with Clusters?.. family, supporters, meds, insurance, doctors, lack of information - specific points to make regarding these issues. What is important to show? Also, how do you feel about a project like this being done?
I need to put this together (a one-pager) sooner rather than later so as the interest in doing this project doesn't die. I don't know if it will come to fruition but the idea has been verbally proposed, its just a matter of following through so that it doesn't get put on a shelf, and then pushing forward.
Ok. I'd like to hear from as many people as possible. Your input is critical and I don't think it would be as credible for me to do pursue this without your input...email me or post here.. I look forward to hearing from you.
Also
BobP.. where can I get that documentary that was presented in Vancouver that you spoke of ...the 1/2 hr documentary?... I'd like to see it as well. Thanks..
Peppermint.

Title: Re: Ideas & suggestions wanted
Post by BobG on Nov 3^rd, 2002, 1:24pm

Was it the one made by Aki Peterson?

Click on this (you can't see the video but can read the script)

http://www.clusterheadaches.com/wwwboard/messages2/133743.html

Title: Re: Ideas & suggestions wanted
Post by Bob P on Nov 3^rd, 2002, 1:34pm

You can also go to the "Where We Live" page and do a search for Aki. I think he is in New York.

Title: Re: Ideas & suggestions wanted
Post by domm on Nov 3^rd, 2002, 2:07pm

The whole concept of "orphan diseases" could be brought up highlighting cluster headaches as an example of one of the more horrendous ones.
just a thought
domm

Title: Re: Ideas & suggestions wanted
Post by OneEyeBlind on Nov 3^rd, 2002, 2:18pm

Nice suggeston Domm. Let them know that we might be a small percentage of the population but are suffering greatly. I think the idea also of insurance coverage needs to be addressed ... the whole point being we are being given meds under the guise of being migrainers but really need more meds less frequently .... how we have to "stock up" is ridiculous !!!! The suicide headache (hate to say it) would be a good plug.

Title: Re: Ideas & suggestions wanted
Post by David Shea on Nov 3^rd, 2002, 4:37pm

The insurance issues, The medical field as A hole lack
of knowlege, And the sufferers seach and battle to find
treatment for Ch are inportant topics to be address.
David

Title: Re: Ideas & suggestions wanted
Post by catlind on Nov 3^rd, 2002, 5:26pm

I don't know if this will be of any help at all, but discovery health ran a feature awhile back (maybe a year ago) on headaches, and they covered cluster headaches. The link below is discovery health channel cluster headaches.

http://health.discovery.com/diseasesandcond/encyclopedia/565.html

http://health.discovery.com/convergence/headaches/cluster/cluster.html

Cat

Title: Re: Ideas & suggestions wanted
Post by David Shea on Nov 3^rd, 2002, 6:14pm

Cat,
Thanks for that post, I've added that to my favorities.
Something useful from this chat. Way to go!
I was going to look up the term Horners syndrom.
( I think that is what it was called or was it condition)
any way do you know the meaning of this term.
I guess it has to do with the eye swelling and tearing.
I'll have my retna check up monday and I wanted to
look this term over first. Maybe I'll wait a while and see if anyone post here the meaning.
Thanks again
David

Title: Re: Ideas & suggestions wanted
Post by Peppermint on Nov 4^th, 2002, 2:50pm

Thank you all for your responses and the links BobG and Catlind.
I have received several other responses, though, I'm sure I need more feedback. BobP, thanks for your input and guidance.

ANY commentary or suggestions regarding this project is needed...and is appreciated from ALL.

Thanks,
Peppermint ;)

Title: Re: Ideas & suggestions wanted
Post by 9erfan on Nov 4^th, 2002, 2:59pm

Pep-
I would like to see a big part of a documentary like that to be about the lack of knowledge in the medical community; the frustration that we suffer when going to Dr's; how we are mis-diagnosed for many years prior to getting our true diagnois; how EVEN neurologists don't understand cluster headaches; how MOST DR's will try to talk us out of the idea that we have clusters; how we are mis-treated in ER's because the nurses & dr's think we have migraines, etc.
I guess I've made my point. ::)

Title: Re: Ideas & suggestions wanted
Post by OneEyeBlind on Nov 4^th, 2002, 4:19pm

How about using some of the stuff right off the message board here. Ya know, suicide posts and the way we all come together .... Newcomers, posting their desperation at not being able to find help ??? Just a thought ... I'm not a writer but I could write a book on the stuff I have read and cried about here !!! People just reaching out. Guess our GURU knew what he was doing when he set up this board .... giving us all a lifeline !!!!!

Title: Re: Ideas & suggestions wanted
Post by jonny on Nov 4^th, 2002, 4:28pm

Check the guestbook.

....................jonny

Title: Re: Ideas & suggestions wanted
Post by BobG on Nov 4^th, 2002, 4:47pm

David Shea...........This is from webMD.

Synonyms
Bernard-Horner Syndrome
Oculosympathetic Palsy

Horner's Syndrome is a rare disorder that consists of extreme contraction of the pupil of the eye (miosis), drooping of the upper eyelid (ptosis), absence of sweating of the face (anhidrosis), and sinking of the eyeball into the bony cavity that protects the eye (enophthalmos). The exact cause of Horner’s Syndrome is not known.

Title: Re: Ideas & suggestions wanted
Post by marty on Nov 4^th, 2002, 6:01pm

Hi Peppermint

The pain issue with CH is of trememdous importance but as a close "runner up", the fear of going to sleep - knowing that it will only bring on another attack. The sleep deprivasion that brings a person suffering from CH into dangerous thought patterns while constantly worrying about the supply of emergency medications running out, since there is a limit on what the insurance companies will pay for/allow.

The stress that it causes on immediate family and friends - and how that stress is multiplied on the sufferer since he/she believes that he/she is the cause, even if others close by don't see it that way.

The mental aspect as it applies to a CH sufferer is important since CH, to a non CH'r, may seem like a severe headache - that's all, and when it subsides it is gone - end of story... Well, that is not the way it works, is it? Try two months straight with only 1 or 2 hours sleep per night... Try to live the life of a "Chronic"..

Peppermint, this is a good idea and I really hope that you can get it done for all of us that fight the beast. I have a feeling that it will become a very emotional experience to see a show like the one you are working on.

Marty

Title: Re: Ideas & suggestions wanted
Post by Lori on Nov 5^th, 2002, 2:11am

I think all the issues are important and hope they all can be covered in some manner. Thanks for doing this. :)

Title: Re: Ideas & suggestions wanted
Post by Peppermint on Nov 5^th, 2002, 4:07pm

;)
Thank you all for your responses. I'd put together another reply here but lost it for some reason ???
I am trying to include as much as I can for the intial presentation....thanks for the links posted, your emails... etc.
I'll let you all know how it goes. I hope I don't disappoint.

In the meantime... please continue to send any suggestions you might have - my email address is at the link to the left under my name... peppermint2867@yahoo.com
Thanks everybody.

Title: Re: Ideas & suggestions wanted
Post by Jabeen on Nov 5^th, 2002, 8:16pm

Hi! I don't want to be redundant but I concur with all these posts-especially 9erfan's about the frustration with the medical community. Many of us were textbook cases and yet dr after dr. misdiagnose.

Title: Re: Ideas & suggestions wanted
Post by Peppermint on Nov 8^th, 2002, 9:41am

Sorry people... Just one more shot at this... My email has been very quiet .... anyone ??? What matters to YOU most.

BTW.. I still have time.

just mint

Title: Re: Ideas & suggestions wanted
Post by NotH20 on Nov 8^th, 2002, 9:58am

Check your mail Mint.... :)

Mia

Title: Re: Ideas & suggestions wanted
Post by Peppermint on Nov 8^th, 2002, 10:31am

Thank you for the email Mia.. ;) ...great feedback.

Title: Re: Ideas & suggestions wanted
Post by Peppermint on Nov 8^th, 2002, 4:01pm

Hey KOP.. !! Glad to see you... its been a while.... how have you been ??? Hope you're PF.
Thanks for the candy... I love it.. :-*
I think you are right....everything related to this project carries so much weight, and I appreciate your input.
I'm just trying to be concise and play the game that needs to be played in order to push forward. :)
Here's one for you.. http://www.headachesupportgroups.com/echat43/feet.gif
;)
Peppermint

Title: Re: Ideas & suggestions wanted
Post by Linda T on Nov 8^th, 2002, 7:31pm

I think that an important point to make is the clusterheads are NOT MIGRAINERS. It appears to me that the problems we have getting meds or getting insurance coverage for meds is that we get treated as migrainers. I once heard somewhere that the standard box of nine 50mg imitrex pills is what the insurance co deems necessary for a migrainer for 1 month. A box of nine pills lasts me about 4 days.

I think that we need to be put into our own catagory so far as the medical community and insurance co's are concerned. That's a step in the right direction.

Sorry if I'm redundant!

Good luck. Linda T

Title: Re: Ideas & suggestions wanted
Post by cerebus1968 on Nov 8^th, 2002, 8:15pm

I personally ...and i know my wife is as well , appalled by the misdiagnosis of CH by doctors the avg. being 6.6 years i believe, very important. And to add to this topic definately get the word out on exactly how painfull it is maybe a short video of someone having one that oughtta be graphic enough for most people i would think. great idea for exposure on the CH battle though.
Capt. Brown