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Topic: New, but not uninitiated to the beast... (Read 911 times) |
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Robaird
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New, but not uninitiated to the beast...
« on: Feb 17th, 2008, 6:07pm » |
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Hello and thanks for reading this. I don't want to give you a bio, however I'm kinda relieved to find this place. Looks clean, and the residents seem reasonably sane, all things considered
I'm an ex-pat Kiwi living in China. Suffered episodic CH for 22 years, 18 of which I had no idea wtf was wrong due to persistent misdiagnosis and ignorance. I finally figured it out for myself (with a little help from a US neurosurgeon) after eliminating the obvious, like insanity.
I'm entering my cycle, got the shadows to prove it, and was wondering if anyone had any resources for obtaining O2 and NRB's in China. Problem is, here the doctors have little or no grasp of the condition and the language barrier doesn't allow me to make reasonable entreaties with any confidence. I mean, I know what I need but it's hard to get the goods from the uninitiated in a foreign country where TCM (traditional Chinese medicine) is the modus operandi. Most of the drugs I need are unobtainable where I live, so I make up cocktails with whatever is on offer.
But most importantly, I'm just looking for a support network, so bear with me.
I recently got married to a wonderful Chinese woman, and as pathetic as it may sound, I gave her plenty of advance warning (a pre-nuptial of sorts) about the debilitating affliction we sufferers must endure, in order that she be prepared for the inevitable: you know what i mean - the screaming, writhing, isolating, blubbering, frantic, thread-baring, "just shoot me-fying" agony of an 8 week long/22 monthly bout with the devil incarnate. She's yet to go through one of these fuckers, and I'm dreading it, although she's been nothing but supportive to date. However, I know what I'm like (intolerable) and it plain scares the be-Jesus outta me.
I guess agony loves company, so, anyway, thanks for reading this diatribe and if anyone has advice on the afore-mentioned resource(s), I'd be forever beholden.
Xie Xie and thanks... Rob Baird
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Writhing on floors is "wasteful" during a nightime hit, according to my wife; she'd rather see all that expended energy put to better use, bless her! If she only knew...
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George_J
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Re: New, but not uninitiated to the beast...
« Reply #1 on: Feb 17th, 2008, 8:36pm » |
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"Lasciate ogni sperenza, voi ch'entrate." Dante, eh? Very appropriate.
Nevertheless, you need not abandon all hope. Perhaps one of us can get you squared away, or you can resolve the impasse yourself.
Can you order items from ebay or elsewhere for shipment to China? If so, the oxygen regulators and masks that we need are regularly available. Obtaining welding oxygen should not be impossible where you are--so it isn't inconceivable that the problem might be easily solved. It won't be oxygen that has been prescribed for you, but it will certainly work.
Please see Pete (Batch's) post on the "Helpful Hints" thread that is sticky-locked at the top of the Cluster Headache Specific board. You'll see a list of the parts you need for a proper oxygen setup, along with photographs.
All the best, and welcome to our odd little village.
George
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| « Last Edit: Feb 17th, 2008, 8:47pm by George_J » |
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Guiseppi
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Re: New, but not uninitiated to the beast...
« Reply #2 on: Feb 17th, 2008, 9:45pm » |
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I have no help for you. Just love and understanding, welcome to the board. Glad you found us.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Batch
New Board Old Timer
FOX 2 - Check 6
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Re: New, but not uninitiated to the beast...
« Reply #3 on: Feb 17th, 2008, 10:50pm » |
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Rob,
It shouldn't come as a surprise, but a good number of the 0 to 15 LPM and 0 to 25 LPM constant flow O2 "click selectable" regulators found on the Internet are made in China along with the common E-size O2 cylinders. It shouldn't take more than a few minutes on the Internet to find a manufacturer there in China near you.
I would go for the 0-25 LPM O2 regulator unless they have some that have a higher selectable flow rate. Obtaining medical grade oxygen may be a bit more challenging, but doable, and if all else fails, there should be ample supplies of welder's O2 with all the industrial activity. Just get a new or very clean O2 cylinder…
Your wife should be able to help with the local sales offices as well as track down a source for the O2 cylinders and non-rebreather masks once you’ve located them on the Internet.
I've seen sites for Chinese firms that manufacture O2 regulators so will run a few searches. Where in China do you live?
Take care and hang in there. We'll work something out.
V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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Linda_Howell
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Hearing is one thing. Listening is another.
  
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Re: New, but not uninitiated to the beast...
« Reply #4 on: Feb 18th, 2008, 12:05am » |
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Quote:| But most importantly, I'm just looking for a support network, |
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THIS.....we can help you with.
Welcome to our "family" and any and all that we can do for you that is within our power we will do.
We are not reasonably sane though, so throw that idea right out of your head.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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AussieBrian
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Got beer?
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Re: New, but not uninitiated to the beast...
« Reply #5 on: Feb 18th, 2008, 12:52am » |
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on Feb 18th, 2008, 12:05am, Linda_Howell wrote:| We are not reasonably sane though... |
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Well, I am, but watch out for the rest of them 'cos they're like so many possums in a sugar bag. In fact I'm so sane and reasonable I'll even talk to a kiwi but only because he's seen the error of his ways and shifted camp.
First and foremost, many CHeads are reporting amazing relief from this nightmare by posting beer-vouchers to the Boomerang Hotel, Mackay Qld (attn: AB).
In the rare event this doesn't work for you personally, I can only suggest you try it three or four times before deciding it's perhaps not your cure. Otherwise you can have a look at http://mushys.com/kiwi which was put together by our good friend Barry-D-Berserker when he wasn't busy passing water, eating children and attracting cylones.
I'll also PM another raving loony to ensure she sees your post and plight but be warned - she may be related to your darling wife and no good can from this, dear friend. No good at all and we'll all be rooned!
Woe is me!!!
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Annette
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Veni Vidi Velcro
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Re: New, but not uninitiated to the beast...
« Reply #6 on: Feb 18th, 2008, 1:17am » |
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Kung Hei Fat Choi and welcome !
Brian told me to come say hello so here I am ( he is house training me , see ? )
I am an ex Kiwi learning to become a Kanguru and I am half Chinese by blood so it looks like I maybe your distant cousin in laws
My husband has CH and he had a very long 8 months cycle last year which took me by surprise and scared the heck out of me for a while. However, the good people of this board soon put us both on the straight and narrow path and we survived the ride with the beast.
Please tell your wife to come have a chat. I would love to know how things are over there now. Which province do you reside in ? I have planned to travel back there for some time but haven't had a chance, hopefully soon.
However, I do have many connections to the Black Society Hak Sei Hui in Shanghai and maybe able to pull a few strings for you in case of needs 
Choi Kin.
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Mediocrity knows nothing higher than itself; but talent instantly recognizes genius.
Arthur Conan Doyle
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Robaird
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Re: New, but not uninitiated to the beast...
« Reply #7 on: Feb 18th, 2008, 9:29am » |
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Well, I'm overwhelmed already and I'm not easily impressed! Thank you all kindly for the warm welcome. I get that inclusive kinda feeling coming through loud and static free. So once again, my sincerest thanks, ppl!
George, sound advice and I did have a little gander at that when I first discovered this place. It's very sound, practical data and the specs are precisely what I need. And a special "thanks" to the author who posted that, too, btw.
Guiseppe, those sentiments are embraced and I thank you profoundly for them!
Batch, cheers for that. The reg. info I am currently researching and the welding grade O2 is probably going to be the path of least resistance for now (we have heavy industry run amok around here). Awesome!
Linda, you're too cool for school! xxx
Brian: what can be said about you that probably hasn't already been said a million times before? The archetypal Aussie humourist, I see! I assume the Boomerang Hotel either means you keep going back for more, or is some strange homage to our syndrome, eh? I can only infer that if you're in the pub, you're currently out of cycle - so much as a whiff of booze sets me off, mate (not uncommonly, so I have been led to believe) and if that is the case, then all power to you, brother! Vouchers pending!
Annette: ni hao, my adopted countrywoman! Fabulous to see a supporter here and my empathy goes out to your other half. It's saddening to hear of a sufferer who has it as bad as him, and it always humbles me to learn of another human being in a predicament worse than my own. My wife, Zhiping, isn't quite ready for that next step yet, but her referral to this site will be forthcoming: I don't want to freak her out so soon after the honeymoon, if you catch my drift! Incidentally, I'm in Jiangsu Province, near Nanjing. I teach at a university here. Fill me in on this Black Society thing; it sounds thoroughly disreputable (the kind of company I enjoy keeping), but I suspect the name is a little misleading! xie xie for your introduction.
And I look forward to getting to know you all well, for better or for worse, in the near future!
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Writhing on floors is "wasteful" during a nightime hit, according to my wife; she'd rather see all that expended energy put to better use, bless her! If she only knew...
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Batch
New Board Old Timer
FOX 2 - Check 6
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Re: New, but not uninitiated to the beast...
« Reply #8 on: Feb 18th, 2008, 11:13am » |
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Rob,
As you can see from the responses, coming to CH.com has its advantages. I got lucky this morning and got a hit on "madeinchina" so the following link may be worth a look:
http://www.madeinchina.com/trade_product_1/Oxygen-Cylinder.shtml
They appear to have several firms making nearly everything you'll need to build yourself a good oxygen therapy kit including points of contact.
Take care,
V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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Robaird
New Board Newbie
Lasciate ogni sperenza, voi ch'entrate
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Re: New, but not uninitiated to the beast...
« Reply #9 on: Feb 18th, 2008, 11:20am » |
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You bloody legend, Batch!
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Writhing on floors is "wasteful" during a nightime hit, according to my wife; she'd rather see all that expended energy put to better use, bless her! If she only knew...
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hotprestwich
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Fuck the devil
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Re: New, but not uninitiated to the beast...
« Reply #10 on: Feb 18th, 2008, 12:44pm » |
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just my 2 cents man,
if all else fails research clusterbusters web-site im pretty sure you will find there drugs of choice in china,
the 02 thing well i live in mexico and i get my 02 from my dive shop, if your near the coast or any dive shops then i bet you could get a 02 fill, remember 02 has to be 100 per cent so dont just get a compressed air fill it wont do anything for you,
its a long shot i know but the regs that come on scuba tanks (demand valves) are great i use them all the time and dont waste a drop of 02, fire station is another option,
and well im sure you know Red-Bull on your side of the world is stronger, well it is in Thailand there very good to abort an oncoming headache, also coffee its great stuff like liquid morphine, good luck
pain free wishes coming your way
Dave
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In heaven there is no beer so why not drink it while we´re here
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Robaird
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Re: New, but not uninitiated to the beast...
« Reply #11 on: Feb 18th, 2008, 1:45pm » |
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Hey, Dave, nice to meet you. That's another avenue, too, mate. Cheers. I'm not coastal, however.
The Red Bull here is muy potente, but I'm not certain if the elusive taurine is contained in the local brew, but trust me, I've got my filthy hooks into the entire stock from the local 7/11 (or its equivalent). I'll post a testimony when the time comes as to its efficacy.
I'm considering purchasing reg and masks from the USA, and simply renting cannisters/bottles here, but I'm concerned about mismatched threading/tapping issues. I just need to take my own advice I give to students and do my damn homework!
Peace...and more peace!
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Writhing on floors is "wasteful" during a nightime hit, according to my wife; she'd rather see all that expended energy put to better use, bless her! If she only knew...
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Robaird
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Re: New, but not uninitiated to the beast...
« Reply #12 on: Feb 18th, 2008, 1:51pm » |
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Oh, yeah, and what's the deal-eo vis a vis the extra-legal pharmacology option? Or is that opening a can of worms?
I got on to reading about psilocybin as not only an abortive, but remission inducer, too...
I was no angel back in the day, so that option intrigues. But believe me, I'm not risking life, liberty and 100RMB bill for the bullet sent to my next-of-kin for a 'shroom fix no matter how desperate I become.
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Writhing on floors is "wasteful" during a nightime hit, according to my wife; she'd rather see all that expended energy put to better use, bless her! If she only knew...
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RichardN
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Re: New, but not uninitiated to the beast...
« Reply #13 on: Feb 20th, 2008, 12:38pm » |
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Hi Rob
Just wanted to add my welcome . . . and hope you get your 02 rig set-up soon. It's my only abortive and I can usually kill him in minutes if used early-on in attack.
One thing that should be available at your local herbalist is kudzu. Do a search for kudzu info on this site. It's my understanding that the Chinese have used kudzu (mainly for migraine, I believe) for centuries, and kudzu supplements seemed to have helped many either stop or abort a cycle. Don't see it mentioned much lately, but might be worth investigating.
Don't discount water therapy (see "water X 3" . . . link on left). I'm convinced this has helped me reduce the frequency/intensity of attacks.
Keep reading, keep asking . . . all here KNOW the beast and truly understand your pain.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Robaird
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Re: New, but not uninitiated to the beast...
« Reply #14 on: Feb 20th, 2008, 4:21pm » |
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Hey there, Richard, and it's a pleasure to "meet" you also!
I've had an enormous amount of assistance in here so far, and I'm more than appreciative! Words really aren't sufficient, actually.
Yeah, the kudzu had me intrigued right from the get-go. I've been spending an unhealthy (?) amount of time in here already researching that, and other so-called alternative meds. The kudzu threads had me hooked. I've already had my wife seeking it out, without any success. From what I gather, it's known locally (or in Pinyin) as "ge gen". Tomorrow, I'm going on a reccy around the city to as many herbalists as I can find (and believe me when I say that there are A LOT!). I like the fact that it's an anti-hypertensive, like verap, too (I have mild hyper tension). The complicated part will be calculating dosage, assuming I can get it. My research has shown that, when available, it comes in a pellet form and/or by sachet. Maybe I'll drink it like tea, in that case!
I also read the H2O x 3 and have started on that, too.
Along with my other preventatives, so far I'm merely shadowing and hit-free!
With Batch's phenomenal assistance, I'm on my way to setting up my first foreign O2 rig! Can't friggin wait!
PF vibes to you! Peace... more peace!
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Writhing on floors is "wasteful" during a nightime hit, according to my wife; she'd rather see all that expended energy put to better use, bless her! If she only knew...
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