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        New Message Board Archives >> 2004 Posts >> DOCUMENTARY - 
        
(Message started by: justin on Mar 7^th, 2004, 1:49pm)

Title: DOCUMENTARY -
Post by justin on Mar 7^th, 2004, 1:49pm

Hello Everyone,

As some of you know I am working on making a documentary about people with clusterheadaches. I have high hopes for this project in many ways. When completed, the film will be entered in dozens of film festivals all over the world and bring attention to this condition. Also I want this film to bring hope and inspiration to people with clusterheadaches and other conditions that make daily life difficult. So many of you have helped me with my struggle and the amazing family that has been born out of this message board is a story that should be told. I know a lot of you have told your amazing stories of courage on this site and now I am looking for you to share them on camera. I am looking for 5-10 people to highlight in this film, but I will be attending the conference this year. I still need to get in touch with the organizers to get permission to film there. But I will be looking for a lot more people to talk to there as well. Also my neurologist, the amazing, Dr. Lawrence Newman, has agreed to be interviewed and assist me with this.

Email me if you are interested in participating in the documentary. I am located in NYC so I would especially like to hear from NYC clusterheads. Email me and write a paragraph or so about why you would make such an interesting subject. Let me know the status of your condition, i.e. chronic/episodic/how long, in remession?

The Documentary Treatment, or summary, is posted below. Please ignor my other postings on the board that say DOCUMENTARY Treatment PT 1, 2, 3. Sorry I didn't think to put it all in one thread. But it's all here now. It is subject to change slightly depending the amount and type of subjects we find.

Thanks

all the best, justin

justin.ott@verizon.net
IM: jdo201

Title: Re: DOCUMENTARY Treatment pt1
Post by justin on Mar 7^th, 2004, 2:28pm

ACT I

Introduction and definition of Cluster Headaches. Here we will detail and explain the condition and how it affects people physically.

A cluster headache occurs when the brain sends a signal to the body to start sending blood to the vessels in the head. Blood is sent in massive excess and the vessels swell to an enormous size. They press up against and all but crush one of two trigeminal nerves. Trigeminal nerves are the main nerves in the head, one on the left side and one on the right, which spread from behind the eye to the jaw and lower neck. Oftentimes only one trigeminal nerve is aggravated so sufferers often feel pain consistently only on one side or the other. The pain is so intense that sufferers have described it as being worse than childbirth or more excruciating than a broken bone. The condition has been poorly named because cluster headaches are really not like normal headaches. When a cluster headache sufferer has to explain their condition and they use the term headache the seriousness of their condition is often dismissed.

Although there is no known cause or cure for Cluster Headaches, there are many theories as to why they occur. Studies have shown positive triggers -- ranging from specific kinds of food to disturbances in the patterns of the biological clock -- that will cause a Cluster Headache attack.

Cluster Headaches and migraines share some common characteristics, which makes it possible to treat with preventative medication. Many of the same drugs used to treat migraines have been used to effectively treat Clusters. However, while millions of Americans suffer from migraines a very few experience the pain of a cluster attack. It is estimated that only .07% of Americans have been diagnosed with the condition leaving 99.93% of the public to never understand what the pain is like. When preventative medication doesn’t work there are a few different abortive medications that can be used to subdue a cluster attack ranging from injection forms of the drug Imitrex to breathing pure Oxygen.

Because Cluster Headaches are so rare and difficult to understand, many primary health care providers are unaware of the condition and thousands of people go misdiagnosed every year. Even neurologists have misdiagnosed the Cluster Headaches condition. Some doctors, including neurologists, refuse to treat Cluster Headaches because they do not know how. This might seem cruel, but it is a far better thing to pass patients on to someone who may be able to help their patients than to treat them incorrectly, which also happens frequently. This introduction will include some brief explanations from neurologists who are well educated about cluster headaches, and possibly some who aren’t so knowledgeable.

Title: Re: DOCUMENTARY Pt. 2
Post by justin on Mar 7^th, 2004, 2:29pm

ACT 2

Introductions of people living with the Cluster Headache condition. We open on someone welcoming everyone to this year’s International Cluster Headache Convention. Every year “clusterheads”, as they have been known to refer to themselves, gather at a different location in North America. The convention is a well-oiled machine in its fifth year, and features prominent neurologists, medical researchers, representatives from pharmaceutical companies, and other speakers who present the latest research and information on medication. It is a great benefit to the sufferers of Cluster Headaches to hear this information and use it to help control their condition. But it is equally or more important for clusterheads to meet face-to-face and realize that they are not alone. They offer incredible support to each other and sometimes can mean the difference between life and death: there have been documented suicides by Cluster Headache sufferers; people who were desperately trying to escape their pain.

Through interviews and coverage of events over the weekend of this convention, we will reveal the emotional and psychological impacts that Cluster Headaches can have on sufferers and their family and friends.

Clusterheads and their daily life. In this section we will visit some of the people who live daily with Cluster Headaches.

Some have been in remission for years. Others have a few cycles a year lasting anywhere from two to six weeks. And others suffer daily with one to eight attacks a day, each of which lasts roughly an hour. We want to show how this condition can affect every aspect of daily life from career, to family, to relationship. We also want to talk about the struggles people have with health insurance and finding funding to pay for their medication.

Imitrex is one the few medications that will abort a full-blown Cluster Headache attack within minutes. Unfortunately, the drug can run as much as $500 for a month’s supply without insurance. This “month’s” supply is a formulary that the insurance companies have decided is an acceptable amount in the treatment of migraines, not Clusters. Many insurance companies don’t recognize Cluster Headaches as a “known condition” because of the lack of knowledge about them, or lack of proof of what causes the painful attacks. The supply they designate as a month’s worth could be anywhere from four to twelve shots. With two shots a day being the maximum amount of Imitrex one can take, if a cluster headaches sufferer were to have two attacks a day they would run out of Imitrex before the month was halfway over.

We will also look at some people who have done all they can to help, including supporters on the message boards and the people that run these very educational and helpful websites. The Organization for Understanding Cluster Headaches (OUCH) operates one particularly informative site at www.clusterheadaches.org. Clusterheadaches.com has the largest source of information available and hosts a very busy message board. We will also meet and talk to the family and supporters of people with this condition to find out how their spouse or friend’s condition affects them. The connections made on these message boards and websites are very strong and create a community that is very supportive of everyone within it. With interviews and surveillance footage of these clusterheads we will get a better understanding of what it means to live with Cluster Headaches.

Title: Re: DOCUMENTARY Pt. 3
Post by justin on Mar 7^th, 2004, 2:30pm

ACT 3

Conclusion and looking to the future. Every year more and more research is being done about Cluster Headaches as awareness about the condition and its seriousness grows. For example, thirty years ago there were no abortive medications such as Imitrex. Suffering through an attack was the only option for victims of Cluster Headaches. Now there are virtually dozens of drug combinations being used to treat millions of people worldwide.

We want this documentary to accomplish several things. The first is to educate the general public and thereby increase awareness. Most people do not understand what a Cluster Headache entails, which leads to frustrating and embarrassing situations for Cluster Headache sufferers. The worst thing a clusterhead can hear after telling his boss that he is having a Cluster Headache and needs to go home is “Just take a couple Aspirin, you’ll be fine”.

In addition, we want doctors and insurance companies to recognize this condition. We have heard many stories of people suffering for years because they mistakenly believed that their pain was caused by sinus problems, or another erroneous diagnosis. Drug companies need to realize that even if they can’t make as much of a profit on Cluster Headache sufferers as they would on migraine sufferers, they need to demonstrate compassion and provide affordable drugs that work. It is their responsibility to fund and conduct research.

It is our goal to use this documentary to give hope to all sorts of people with chronic pain. The experiences of people who experience Cluster Headaches are particularly inspiring, because they demonstrate that no matter how dismal it seems, we have people to support and help us. Dark days will be followed by hope for the future and pain-free days ahead.

Send comments to justin.ott@verizon.net

thanks for reading

j

Title: Re: DOCUMENTARY -
Post by jonny on Mar 7^th, 2004, 2:55pm

ROCK-N-ROLL....Justin!!!!!

Now everyone hit this thread or ill kill you......LOL ;;D

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

Title: Re: DOCUMENTARY -
Post by M.R. on Mar 7^th, 2004, 5:08pm

Justin

If you can pull this off.....you have any support that I can give you. I have seen other attempts at this, but this is the best, most concise attempt. You go dude.

Mike

Title: Re: DOCUMENTARY -
Post by BarbaraD on Mar 7^th, 2004, 5:18pm

Sounds like what we've been needing. Justin you're a genius (even related to Chuck). Your Dad would be a good subject for chronics....

Keep up the good work. Look forward to meeting you at convention...

Hugs BD

Title: Re: DOCUMENTARY -
Post by KarynG on Mar 7^th, 2004, 8:20pm

THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Title: Re: DOCUMENTARY -
Post by ClusterChuck on Mar 7^th, 2004, 9:14pm

Please note, Justin is NOT my son ... Or at least, not that I know of!!! heehee ...

My son, Adam, is also working on a documetary on cluster headaches. Justin and Adam are not working together on this. They are each doing their own project. There is enough out there for two or more of these.

Good luck on your film, Justin. I look forward to seeing it! I think you are further along than Adam is. Feel free to contact me if I can be of any help to you.

Good luck!
Chuck

Title: Re: DOCUMENTARY -
Post by bobkip on Mar 7^th, 2004, 10:44pm

While I'd love to participate in the highlight but S. Florida is a bit far from NYC. Keep up the good work.
Kip

Title: Re: DOCUMENTARY -
Post by David A on Mar 7^th, 2004, 10:59pm

I am a newbee around here but I will participate in any way possible ----

Do ya think you could slam Glaxco in your doc for the cost of Trex [smiley=huh.gif]... or at least try to find out why it cost so much. >:(

thanks
dave

Title: Re: DOCUMENTARY -
Post by thomas on Mar 8^th, 2004, 6:08pm

Hell, I'll volunteer to be in both of 'em. I just love breaking cameras. lol.

Title: Re: DOCUMENTARY -
Post by Tiannia on Mar 8^th, 2004, 6:31pm

I'd be happy to help. But Vegas is a ways away from NY. :(

Anyway please make sure you bring up the issues that women with CH have in getting help and treatment because it is considered a man's disease.

You have a great outline there. Very clear idea of what you want to precent. Also are you going to try and show an actual attack? And when discussing the med or lack of meds we can get, how some clusterheads resort to using welders O2 to get some relief?

Just brainstorming...

Tiannia

Title: Re: DOCUMENTARY -
Post by kissmyglass on Mar 8^th, 2004, 8:58pm

I'm 45 minutes from NYC & will do anything I can to help.

Kev