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Cluster headache survival guide (Read 2220 times)

AubanBird

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Cluster headache survival guide
Aug 16^th, 2018 at 7:19pm

Is there anything like the title suggests out already?

I am working with my unit to improve our medical and embedded behavioral health staffs knowledge on cluster headaches, and i want to put together a basic pamphlet that that they could give to anyone diagnosed with cluster headaches. Basically, a lot of information and references to point them in the right direction if they want to dig into more information.

I would have them direct soldiers to me personally, but they cannot do that because i have not yet gained an accredited status as a health care provider or affiliate.

What kind of recources are already available? As it is, i have met four people in the army who suffer from cluster headaches, and i met two of them at the dentists office, before they were professionally diagnosed.

Before our neurologists on fort bragg got way to busy to take new patients, they used to tell me that they saw more cluster headache sufferers than they expected. My guess is its because of all the weird ways that multiple hard hits to the head can damage the brain.

Hell, they think that i am probably suffering from chronic traumatic brain injuries myself. If i can help just one soldier see that life is not a complete crap hole because of this affliction, its would be worth it.

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jon019 CH.com Alumnus Offline "Ya gotta believe!" Posts: 1656 USA Gender:	Re: Cluster headache survival guide Reply #1 - Aug 16^th, 2018 at 8:01pm YUP!!! AB...a referral to ch.com...or clusterbusters.org...saved a lotta folks...me included...no military bureaucracy involved...……..YOU KNOW! Best Jon
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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Cluster headache survival guide Reply #2 - Aug 16^th, 2018 at 11:49pm Nice thought, AB, and it would have to include a copy of "Letter to Employer and Colleagues". The thread is at the top of the Newbies' board and, while the link no longer works, good ol' MikeNZ has printed it in full at the bottom of page 4 so it can easily be copied and pasted. All the best, Brian.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

Mike NZ

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Re: Cluster headache survival guide
Reply #3 - Aug 17^th, 2018 at 7:24pm

I'm not aware of a survival guide, other than joining us here on the forums. But I realise that this isn't for everyone and with the increasing numbers of people with CH in the military there is most likely a link to head injuries and thus a need to help them learn faster how to get on top and in control of the beast.

I'd be more than happy to assist in putting together a guide.

What would be useful is to split it into sections:

Main section - CH info for all, no matter where in the world, covering things like what is CH, getting diagnosed, preventives, abortives, overview of current research, etc.
Country specific sections - there can often be significant differences on a per country basis, so for the US this would include things like dealing with health insurance, for the UK it would include the HOOF form for getting home oxygen on the NHS, etc.
Additional sections could then be situational specific, e.g. US military

This would mean that most people would get all they need from the combination of the main section and a country specific one. But for people visiting a country, e.g. for a holiday, they'd just need to get the section for the country they are visiting.

This could work quite well as a wiki, so people can build it up over time, keeping it up to date, etc.

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AubanBird

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Re: Cluster headache survival guide
Reply #4 - Aug 17^th, 2018 at 9:08pm

That's pretty much what i was thinking. For the us military specific stuff, ill work with our health care professionals to develop it. Ill include things i have learned as well, like how to get a battalion physicians assistant to take you seriously at sick call. There are a few key phrases that will get a soldier referred to a specialist pretty quickly. One is "i cant sleep". For some reason, the army takes that really seriously.

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Esheel31

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Re: Cluster headache survival guide
Reply #5 - Aug 19^th, 2018 at 8:41am

First of all,I want to think you for your service.
I grew up not far from Bragg and “Fayettenam.”
I recently spoke with an army friend of mine who talked about the neurological testing the military is doing now to study the effects of CTE and concussion in men not only returning from the front,but men who are subjected to the constant rigors of drills and exercises.(i.e. artillery drills,live fire drills....)
He said it comes from a broader range study on PTSD.
I’ve often been told and read,(sorry,no link.)that most sufferers have sustained some type of head trauma to the CH affected area at some point in their lives.
Not sure how true that is,but in my case I was knocked off of a 6 ft ladder at work one day from a blow to the right side of my head.
Right over my eye.
2 years later,the clusters started.

Long story short,I wish you good luck in your efforts.
Being a soldier can be stressful enough.
You shouldn’t have to deal with this crap on top of that.

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Payg

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Re: Cluster headache survival guide
Reply #6 - Aug 21^st, 2018 at 9:27pm

Hi AubanBird,
I would love to see a prelim copy of this "survival guide" as would most others on this site I would think. I'm sure we could have some helpful suggestions as well.

I personally carry my "medical" bag with me everywhere which has two printouts from the web on CH--just in case I run into a new doctor that has no clue. A shorter, more concise version would definitely be welcome and make my bag much lighter.

BTW--I'm about 1 hour south and west of Fort Bragg. Hi Neighbor! Smiley

I just recently visited the Target on Skibo Road while on a Sunday excursion with the husband. It had been a while since I was up your way. To be honest, we got a little lost because the roads had changed so much. We should maybe get out more, huh?

Good luck with writing your "survival guide". I think it's an excellent idea! Smiley

PF Wishes,
Payg

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