What's it going to take?

[jms]

As a mother who has to watch her son suffer so much pain I am wondering what is it going to take before we find a cure. What can I do? Who can I write to? I read the Facebook pages and see so many others who are victims of this condition, either directly as a CH sufferer or a caregiver of someone. There's got to be something we can do instead of watching helplessly and waiting for the time to pass. I am open to any and all suggestions. I know I must sound like a broken record to many who have asked the same question. But with the internet and social media, maybe there is a way we can rally together and prod the powers that be to step up the research. Thanks for any feedback you care to share.

[CHfather]

Over the past three days the annual "Headache on the Hill" event took place, in which people with CH and other "headache" conditions advocated with members of the Senate and the House. The folks who do that deserve the highest praise and gratitude from us.  Beyond that, I don't know what else you can realistically do.

 

There is some promising research being done by drug companies on CGRPs. http://www.webmd.com/migraines-headaches/news/20150618/new-drugs-might-prevent-migraines-before-they-start  Although the research is focused on migraines, some top CH experts think these drugs will help prevent CH attacks, too.

 

Meanwhile . . . Is your son using all the best anti-CH resources -- oxygen, the D3 regimen, energy drinks, maybe some pharmas for prevention and aborting . . . busting?

[weatherman]

jms,

 

Firstly, let me congratulate you for being a supporter.  You are NOT a broken record and are NOT alone.  Many CH sufferers have lost relationships because spouses and/or family members do not understand, cope well or take the time to learn how agonizing this condition is.  It takes a very strong person to watch another suffer these attacks .... I can't watch it myself and certainly can't imagine seeing it happen to a loved one.  Just having someone to care is HUGE in assisting your son deal with his predicament.  We can all relate to the benefits of nurturing family, and tell awful stories of the ones who don't.

 

What will it take to find a cure?  That's the $64 question.  It boils down to money and awareness.  CH is a rather rare and misdiagnosed affliction and those of us who have it will hide from public view, as the outcome from enduring "these suicide headaches" is not pretty.  Western medicine (and most of it's Doctors) do not understand the nature of CH, so its causes, cures and treatment range from bizarre to mundane.  There are countless afflictions that compete for medical exploration .... someday, a really rich and famous doctor will encounter CH, dedicate his life to a cure, then this will all be ancient news.

 

This group (Clusterbusters);  created and lead by our biggest hero Bob Wold, was formed to integrate information on treatment from actual sufferers that modern medicine has avoided.  Big Pharma is profit-driven and there are just not enough of us to justify the expense of research and manufacturing drugs.  Big Medicine is not really interested either.  More Clusterheads have found relief (myself included) by the knowledge gained from this group than many other standard treatments with drugs, etc.

 

Several things you can easily do.  First, get your son to try any and/or all of the methods that have actually worked.  CHfather's advice above is spot on good stuff.  Try anything and if it doesn't work, try something else.  Keep at it and surely your son will get some relief.  Abortives such as oxygen for a current attack work excellent, and should be easily obtained .... and there's NO side effects!  Busting is best for controlling the intensity and duration of a cycle, if he's Episodic.  Chronics like me bust regularly several times a year.

 

Second:  Support Tyler Mann's documentary film, now in the creation progress.  Support the Clusterbusters in awareness.  Attend a Conference if possible ... it's AMAZING.  You will be acknowledged and gain so much information.  Our members use "Citizen Science" to experiment with treatments, then pass along the results, often with tremendous benefits to sufferers.

 

We are currently our biggest advocate, but that is hopefully changing.  Momentum is gathering on research for treatments.  Awareness is increasing and more famous people are coming forward with this condition.  Progress is glacially slow on concrete developments .... that's why we need each other.

 

Give your son a hug, oxygen bottles and keep asking questions.  There is relief.

Wishing him Pain Free Days.....

 

weatherman

[spiny]

Welcome jms!!

 

Weatherman has done a fantastic job with his post, covering many things for you.

 

Remember, supporters are our hero's. I can't think of a tougher job out there.   

[jms]

Thanks very much for the replies. I really appreciate this forum for the support and information from you all. Regarding a cure, I understand the part about the drug companies and profits - that there aren't enough numbers to make the research and development worthwhile. And I know that CH is considered "rare". But sometimes it's not the amount of people involved but the loudness of the voice that gets attention. I would like to attend the "Headache on the Hill" next year.I think weatherman is spot on when he says "someday, a really rich and famous doctor will encounter CH, dedicate his life to a cure, then this will all be ancient news". Until then we will keep battling the beast. It's been 14 years so far. O2 has been a blessing and we've dabbled in some other busting techniques and continue with narcotics for pain. Most of the other prescribed medicines were no help at all and may have actually caused more CH. It seemed like he was chronic when he was taking all the triptans. Since we quit those he is now episodic. Thanks again for your support.