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Standing in for my brother.


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Hello,

My name is Scott, I go by WFOUNLIM, you figure it out.

I don't suffer from these headaches.  I have no idea of the pain involved,except thru my younger brother, Paul.  He's been suffering with what he says is Post Herpatic Trigeminal Neuralgia. This has been going on since around 1990. 

I spoke with him one night and his pain made me cry.  He's kinda gotten use to it...the steel claw that attacks his head, my friend he calls it.  A demon from hell more like.

He's tried just about every drug the Drs. will prescribe.  He says he can deal with the pain, if they would give him something to sleep, old school stuff, not that crap they advertise on T.V. all the time.  You just can't get a Dr. to prescribe the stuff that works.  I spoke with one of my Drs. at the V.A., head doc, and she said that they "didn't prescribe the older medications, barbiturates, because they AREN'T THE STANDARD OF CARE."  I asked her if the standard of care was allowing someone to blow his .........! I just got up and walked out.  Never went back.

I first saw information about I guess y'all call it busting, on the Nat Geo Channel.  In the day I called it a weekend.  I guess I'll have to get the info to my brother cause he's a caveman,  no cable, no computer, no cell phone or beeper.

So I'm his link to the WWW.  He say he don't need any of those things, esp. a cell phone, when he's off work he's off!

His job doesn't help, he's the main mechanic for a golf course.  Fuel, exhaust and whatever fumes plus lots of pollen.

Any help y'all can give me would be much appreciated.  H's in VA and I'm deep in the heart of...... where certain things I really don't want to talk about.  Penalties up to life.

Have a pain free day and if any of you need intercessory prayer for a really bad one, I'll pray for you.  I could use to get busted but not for the same reason 8-)

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Hey Scott.  It's very good of you to care so much for your brother.  Many of us here know the pain of seeing a loved one suffer so much.

I don't know whether busting would work for TN.  Maybe others do. I don't recall anyone here with that condition.  We did have a fellow with postherpetic head pain of a different form (hemicrania continua), and busting wasn't the answer for him.

BUT about 95 percent of people here had some form of misdiagnosis, often for years, before it was realized that they had CH.  My daughter was misdiagnosed for years as having TN (the "funny" -- not really funny at all -- thing about it is that a diagnosis will often tend to stick even if the symptoms don't match it).  The "claw" and the "demon" sound like they could be CH. So somehow getting a better diagnosis might lead to different treatment.  Maybe you could look at this wikipedia page and ask him about the symptoms: http://en.wikipedia.org/wiki/Cluster_headache

TN, as I understand it, has quite different symptoms.  I did a lot of reading about TN when that was my daughter's diagnosis (it's one of the ways we figured out that she didn't have TN), and there seem to be a lot of potentially helpful treatments for it . . . but that's an issue that's really outside our scope.

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Hey Scott,

What CHf just said. To the letter.  :)

Plus I'll just reiterate how good I think it is that you're looking out for your brother like this, and how much I admire that.

I think I've figured out WFOUNLIM:

"What the fudge, oh you never liked it much"  :D

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No WFOUNLIM is a tag I gave myself when I had a computer business.  The name was PC's Unlimited and I was WFO, because I was w...f......o... !  Hanging with the wrong people doing the wrong things.  Cost me a lot, too much marriage, the business, more than I wanted to give.  You would expect more from an Army Capt. Aviator, Helicopter Pilot.  I should have.  Oh well, live and learn.  Got divorced, closed the business, went to see a woman in N.W. Montana and then spent a year taking care of my father before he died, at home in bed, surrounded by family and friend! Not in a !#$ hospital like the D....A...doctor wanted.

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Hi Scott,

Good on ya for taking care of your brother. I don't know what, if any, of the things discussed here would be helpful for him, but since he doesn't seem to be getting much help from his doctors, I don't see how it could hurt to give some of them a try.

RC seeds are cheap, safe and readily available. Read enough about them in the ClusteBuster Files so you know what you're doing and give 'em a shot. You got nuthin' to lose and they just might help. Same with the D3 regimen; it can't hurt and could help. And see what you can do to get your brother a referral to a headache specialist. You don't say where you live but take a look here: http://www.ouch-us.org/chgeneral/doctors.htm and see if you can find someone near you. Mention Indomethacin to his doctor. If it makes his headache go away, he doesn't have cluster headaches. The first, most important, thing is to get an accurate diagnosis. I wish you luck.

Ron

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