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Topic: Anyone else in Australia? (Read 3484 times) |
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AussieBrian
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Re: Anyone else in Australia?
« Reply #125 on: Oct 8th, 2005, 8:15am » |
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Worst of it is that I can't even blame Paul-bloody-Pero!
Unless, of course, the attachment to his last email contained some time-release capsule cleverly designed by Muslim males aged 17 to 40.
Now hear this, Paul. It's not gunna help! I'll still be there December and it's still my first shout. So bloody there, HA!
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LV
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Re: Anyone else in Australia?
« Reply #126 on: Oct 10th, 2005, 4:46pm » |
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Hi paul
Live in Sydney
am also trying to locate oxygen supplier which is really difficult, have asked pharmacies and doctors but no luck
so if you have any luck please let me know
I have managed to track down an oxygen supplier of cannisters for consumer usage. Here is the referral I have no idea if they are any good
http://www.ogo.com.au/
I have asked them to contact meand if they are any good will let you know
all the best
Lv
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AussieBrian
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Re: Anyone else in Australia?
« Reply #127 on: Oct 12th, 2005, 3:27am » |
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G'day, LV, and welcome to the cluster-go-round. Bit of a rough mob here but they mostly behave when it matters.
Regarding O2, it's not just a problem in Oz. Our friends all over the world go through just what we do and none of us know why. The good news is that Barry-T-Coles over in Westralia now has all the good gen on how to lay hands on it relatively easily.
Send him a PM soonest and otherwise stay in touch.
Cheers and beers,
Brian up north.
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paul_pero
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Re: Anyone else in Australia?
« Reply #128 on: Nov 8th, 2005, 5:19am » |
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I'M Back.
Still PF  and hope you are too Jacqs. Its so good to hear you are PF. Hope you are enjoying life to the fullest again.
Welcome to all the new guys. I'll PM you LV and let you know who to speak to for O2 in Sydney.
Brian has worked out my secret plan to wreak havoc around the world. So I'll have to have a drink instead now.
Cheers
Paul
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Barry_T_Coles
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Re: Anyone else in Australia?
« Reply #129 on: Nov 8th, 2005, 7:03pm » |
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Hi Paul
Good to see you postin again and that you are still pain free.
Regards
Barry
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LV
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Re: Anyone else in Australia?
« Reply #130 on: Nov 8th, 2005, 7:19pm » |
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HI Paul
Welcome to the club of misdiagnosis, I was misdiagnosed for 15 years
I also have had little luck with obtaining Oxygen in Australia
I have however started using liquid oxygen. Best to get it from health shops
All the best
L
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Barry_T_Coles
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Re: Anyone else in Australia?
« Reply #131 on: Nov 9th, 2005, 10:07pm » |
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It's off to the head doctor I go.
Got an appointment with a Nuro in Perth Monday next week, fly out Sunday night but dont know when i'll be coming back home, just gonna have to suck & see.
I really am hoping the Nuro has half the smarts my GP has.
Gona be of line for a while see ya when I get back.
Regards
Barry
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AussieBrian
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Re: Anyone else in Australia?
« Reply #132 on: Nov 9th, 2005, 10:43pm » |
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Barry, good luck with the neuro. You'll be going in this time with all the info gleaned from here so only good can come out of it.
Just wish we knew where Jacqs is just now because by my reckoning she should be around Perth-vegas.
All the best,
Brian.
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paul_pero
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Re: Anyone else in Australia?
« Reply #133 on: Nov 17th, 2005, 4:47am » |
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Barry, good luck with neuro. Hope its worth the flight to perth. at least you get to see the city lights  how are your ha at the moment or are you pf?
LV do you find the liquid o2 works?
Brian i'm having a beer for the socceroos tonight. hope you'll join me. 
Cheers
Paul
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AussieBrian
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Re: Anyone else in Australia?
« Reply #134 on: Nov 17th, 2005, 6:15am » |
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Paul, backing the Socceroos regardless but would love to see it on TV.
It's bucketting rain here just now, we need it desperately, and oddly enough the tellie's gone down while my internet is still alive. It's usually the other way round.
We're really hoping it's an early start to the wet season, rather than October storms come late, because it's dry up this way. Bloody dry. Water's turned on at 7 until 8 each morning, then again for an hour each evening. This'll refill our tanks, at least.
Go the Roos!!!!!
Brian.
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paul_pero
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Re: Anyone else in Australia?
« Reply #135 on: Nov 24th, 2005, 6:53am » |
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Brian,
At least you can swim in the ocean and dondge the crocs and sharks otherwise you would smell awful, but then again since i havn't met you yet, you might still smell!
Enjoy your holidays.
PF days to all of you, by my reconing I've got another 6 to 10 months before the beast comes back to visit, so I enjoy everyday whilst he can't find me.
Paul
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E-Double
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Re: Anyone else in Australia?
« Reply #136 on: Jan 6th, 2006, 2:57pm » |
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Bumped for the new Aussies
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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AussieBrian
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Re: Anyone else in Australia?
« Reply #137 on: Jan 6th, 2006, 5:51pm » |
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on Jan 6th, 2006, 2:57pm, E-Double wrote:| Bumped for the new Aussies |
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Good onya, EE. Australia's a big place (same size as mainland US) and it's easy for us to feel a little remote from each other, given the tyranny of distance.
Interestingly we suffer all the same problems as do our friends overseas - misdiagnoses, can't get O2, Immegran is unaffordable, doctor thinks we're druggies and so it goes on.
Fortunately we have a little cartel of our own compliments of the PM system within ch.com and we really do use it a lot. Dunno where we'd be without it, in fact, and I'm putting DJ up for Australian of the Year Award.
To all our Aussies and our Kiwi mates across the ditch, here's cheers to the new year. And to our friends around the world, door's open. No need to knock.
Good health,
Brian.
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Barry_T_Coles
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Re: Anyone else in Australia?
« Reply #138 on: Jan 7th, 2006, 9:21pm » |
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on Jan 6th, 2006, 5:51pm, AussieBrian wrote:
Good onya, EE. Australia's a big place (same size as mainland US) and it's easy for us to feel a little remote from each other, given the tyranny of distance.
Interestingly we suffer all the same problems as do our friends overseas - misdiagnoses, can't get O2, Immegran is unaffordable, doctor thinks we're druggies and so it goes on.
Fortunately we have a little cartel of our own compliments of the PM system within ch.com and we really do use it a lot. Dunno where we'd be without it, in fact, and I'm putting DJ up for Australian of the Year Award.
To all our Aussies and our Kiwi mates across the ditch, here's cheers to the new year. And to our friends around the world, door's open. No need to knock.
Good health,
Brian.
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Ditto
And if the front door's locked just walk round the back thats where you'le find me havin a beer.
Barry
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
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AllanP
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Re: Anyone else in Australia?
« Reply #139 on: Jan 9th, 2006, 6:11am » |
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It's obvious there are quite a few of us. I know how good it was to meet other Chers. Anyone up for an Aussie get together somewhere. Easy to organise and could be great. I'm still meeting people who are undiagnosed and isolated with bastard Drs. What do you think??? Possible?? Helpful?? Let me know.
I have read and researched CH a lot. I went to theUS in 2000 for the Lasw Vegas conf. It was good to meet others.
You are not alone!!
Cheers
AllanP
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| « Last Edit: Jan 10th, 2006, 11:24pm by AllanP » |
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John_Townsend
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Re: Anyone else in Australia?
« Reply #140 on: Jan 9th, 2006, 11:19am » |
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G'Day All
Well got my oxygen, its the bloody best thing ever 5 - 10 mins and the bastards gone. You little ripper!!!!
John
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Kate in Oz
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Re: Anyone else in Australia?
« Reply #141 on: Jan 10th, 2006, 4:22am » |
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That's great news John Makes life so much more bareable knowing you've got something that's gonna do the trick.
Wishin' you all pfdan,
Kate
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loki
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Re: Anyone else in Australia?
« Reply #142 on: Jan 10th, 2006, 5:35pm » |
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hi evrybody........i have had a headache rightside since 23/12/05 and have been told it mayb a cluster headache ........is there any1 in ADELAIDE , SOUTH AUSTRALIA that i wd be able 2 chat 2? my email is loki4now@hotmail.com .........its all new 2 me so hoping someone can help a little .........cheers 
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AussieBrian
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Re: Anyone else in Australia?
« Reply #143 on: Jan 10th, 2006, 8:08pm » |
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G'day Loki, and welcome. As it happens I'm some distance from Adelaide, about as far as you can get without leaving the country, but given the marvels of modern science and ch.com we might as well be sitting in the same pub.
Sorry to hear your not real comfortable just now but your best bet is to go straight to the 'Cluster Quiz' on the left. That'll give a good indication of whether it's really clusters and we all hope you fail the test miserably.
Either way, there's tons of excellent info here and people world-wide who'll happily help you every inch of the way in finding what it really is.
Let us know how you get on and feel free it PM any one of us anytime. Our only concern just now is you.
Cheers and beers,
Brian up north.
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Barry_T_Coles
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Re: Anyone else in Australia?
« Reply #144 on: Jan 12th, 2006, 3:39am » |
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Hi Allan P, John Townsend & Loki.
Welcome to the board, I’m in Karratha in the North West of W.A.
Probably as far away as AussieBrian.
Been off the waves for a few days with a little wind problem so I missed your first post on this thread.
Loki I’m an expat crow eater home town Peterborough, lived in Adelaide for about 10 years at Seaton on the Grange Road.
Lookin forward to hearing more from you.
Kind Regards
Barry
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
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aussiegirl
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Re: Anyone else in Australia?
« Reply #145 on: Jan 13th, 2006, 7:18am » |
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Hi there,
I am new to this forum but was actually diagnosed with CH during my first cycle 20yrs ago at age 18. I have had annual episodic cycles until 6yrs ago. During that time I have tried different meds that worked for one or two cycles then it stopped working and had to try others until something worked. Was PF for 6 yrs until last Sunday 8 Jan 06.
Found out about how to obtain O2 in Australia from BOC Gas.
First obtain letter from doctor stating medical requirement for O2.
Second: Register with OxyCare Australia phone: 1800 050 999 then Fax them the letter you obtained from your doctor: Fax No. 1800 624 149;
Third: Go to your local supplier of Oxygen - BOC or other, they should call Oxycare on 1800 050 999 to verify your registration.
After verification you should have no problem with them supplying you with O2.
If you have private medical cover you can submit your rental of tank/regulator and refill receipts from the provider together with the letter from the doctor to your private health care company and they will provide a % rebate.
Good luck
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AussieBrian
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Re: Anyone else in Australia?
« Reply #146 on: Jan 13th, 2006, 8:05am » |
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Thanks for that, AussieGirl. You've neatly summed up the way we've all been chased around the bush trying to get access to the simplest and most effective treatment available. There isn't even side-effects, unless you pull up at half-time to light a cigarette!
Our CH friends around the world will tell you they have the same garbage to contend with, but we've an ace up our sleeve. Barry in Karatha has found a couple of ways to cut the red tape and even though his feet are still a bit wet after Cyclone Clare I'm sure he'll find the time to give you the good gen.
Been getting any rain down your way? Our wet season up north is looking pretty good so far and it's such a treat to see the place green again. The drought's gotta end soon or we'll be using VB in place of shampoo.
Keep smiling, if only to leave them guessing what you've been up to,
Brian way up north.
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aussiegirl
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Re: Anyone else in Australia?
« Reply #147 on: Jan 13th, 2006, 10:12pm » |
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Hey Brian
The whole neighbourhood would see you light up that cig if you had your O2 going full bore.
I gave up the cigs 7 years ago and was wondering if that might have helped me have those 6yrs PF.
Had a bad night last night, (glass of wine after dinner - bad decision) feel like I've been hit by a truck today and my 3 & 5yr old sons don't understand why mummy doesn't want to play.
We've just had a week of rain down here but it is very hot and sunny again today. Had a real scorcher 45 on new year's day which has left everyone's gardens sunburnt. We've been pretty lucky here in Nowra that we haven't been subjected to the water restrictions that are in effect throughout a lot of Australia.
It is a great day for a swim so I might try to keep my boys busy in the pool.
Wishing everyone a PF weekend.
Kathleen
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AussieBrian
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Re: Anyone else in Australia?
« Reply #148 on: Jan 13th, 2006, 11:58pm » |
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on Jan 13th, 2006, 10:12pm, aussiegirl wrote:| It is a great day for a swim so I might try to keep my boys busy in the pool. |
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You've obviously learned the most important lesson there is in dealing with this horror - life goes on regardless. To do anything less would make you victim, not victor, and the beast would have claimed another soul.
KATHLEEN ROCKS!!! WOOOOOHOOOOO!
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saintlexical
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Re: Anyone else in Australia?
« Reply #149 on: Jan 14th, 2006, 2:25am » |
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Hello everyone,
Just thought I would write a quick hello, just been diagnosed last week with CH but talking to the doctor I remembered that over 10 years ago I had experienced the exact kind of pain that I have now. I took every over the counter medication I could get my hands on and most prescription pain killers but none of them had even the slightest effect. It lasted for several weeks then one day the doctor prescribed Imigran, I went home and following a 30 minute nap one afternoon was gone and stayed gone for 10 years.
I never took the Imigran.
I was told that it is possible to be in remission for years at a time, as many as 20.
All I can say is that after reading the forums for a bit I am in awe of the chronic sufferers' ability to continue in the face of such adversity. It saddens me to know that there are so many out there but it has instilled in me a profound respect for all of you. I'm not sure I could handle it.
I think I'm going to suggest that children ask Santa to bring, beauty pageant contestants wish for, politicians use their toll road kickbacks for all of us to have endless PFDANs.
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