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paul_pero
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Anyone else in Australia?
« on: Jun 19th, 2005, 6:42am » |
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Hi,
I've had ch for 14 years now and only found out what ch are two years ago. Last year I found this site and was sooooo releived!!
However I have tried a few different doctors and no one has yet known much about ch. Today the doctor I went to said he has never heard of oxygen doing anything for ch. Get that! He wanted to give me some codeine.
Is there anyone else in Australia that has been able to get oxygen? I desperately want to try it!! This last couple of nights have been terrible. I'd like to know what needs to be done, do i need a specialist referall?
Thanks
Paul 
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E-Double
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Re: Anyone else in Australia?
« Reply #1 on: Jun 19th, 2005, 9:58am » |
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Quite a few Aussie's....check out the "where we live" hyperlink on the Menu to the left.
also.........
This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
Ask for a script and if needed FIGHT fOR Oxygen...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Educate your doctors!!!
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Gator
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Re: Anyone else in Australia?
« Reply #2 on: Jun 19th, 2005, 7:46pm » |
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Welcome aboard, Paul!
Just to piggyback on what Eric posted, fight for the right flow levels and equipment, too. Try it at the recommended 7 - 10 lpm first, but have a regulator that goes up to 15 lpm just in case you need it. Gotta have the non-rebreather mask, too. Here is a page to print out, along with the awesome stuff Eric gave you, that shows high flow rates are justified.
http://www.chhelp.org/mhni.html
Unfortunately, as Eric said, you will probably have to teach your docs about treating CH. While a lot of things you read here will be personal experience, there are plenty of posts with links to medical research that the doc can read him/herself if s/he is the type that will only accept valid medical research or will only listen to other doctors. You are your own best advocate in your treatment, but you have to have the right info. You'll find it here along with the emotional support you need as well.
Welcome to our little corner of the web.
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paul_pero
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Re: Anyone else in Australia?
« Reply #3 on: Jun 20th, 2005, 6:01am » |
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Thanks e-double and gator!
I was so mad after visiting the last doctor. I'll try another doctor and take info with me.
thanks again
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paul_pero
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Re: Anyone else in Australia?
« Reply #4 on: Jun 25th, 2005, 7:13am » |
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Hi
Just an update.
Have organised oxygen with BOC gas, just need to get a prescription from a doctor.
The situation with doctors where I live is attrocious. The earliest I could see a doctor is Monday. Most doctors in the area have closed their books to new patients, so I guess I have to wait to see my new doctor. I'm not leaving this doctor without a prescription. I've got plenty of info now to take to them.
Had a killer HA today at 5pm. The first in this cluster that hasn't hit me during the night.
Paul
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Kiwiinoz58
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Re: Anyone else in Australia?
« Reply #5 on: Jun 25th, 2005, 7:57pm » |
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Hi Paul,
I live in Ceduna the far west coast of Sth Aust. Before I moved here I was in Adelaide and had a bit of trouble finding someone to even admit I had a serious problem. My neuro is pretty good but not terribly well informed. He put me in hospital for a week to try different meds but only gave the oxygen a short try a couple of times. On here I learned of the success people have with it so am trying to get it organised for me to try it more in depth. In the meantime I take 640mg SRL Verapamil every morning and Imagrin injections as an abortive.
I tried to get an app with a GP here and was told the wait is 3 weeks, so travelled 100kms to see a locum GP who was completely ignorant about CH and wouldn't give me a script for anything. Great fun isn't it 
Cheers,
Jacqs(Kiwi)
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We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
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Jonny
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Re: Anyone else in Australia?
« Reply #6 on: Jun 25th, 2005, 11:46pm » |
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You dont need a Doc when it comes to 02, you can get it on your own.....PM me cause I probably will never see this thread again
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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paul_pero
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Re: Anyone else in Australia?
« Reply #7 on: Jun 26th, 2005, 7:18am » |
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Had 3 HA yesterday. 2 kip8-9's and a kip6. Can't wait to see if o2 will help me. Seeing doctor tomorrow morning. Have info Gator and E-Double with me. Also a guy in Sydney, Steve, has given me some medical journals to take re: CH.
To make matters worse, some #$%^head broke into our house today and stole our DVD, some alcohol (I'm not touching the stuff at the moment, it brings it on!!) and my daughters school bag to carry the stuff. And oh yeah, they also stole my 5 yr olds bike! Some @#$%heads don't care about anyone else 
Paul
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paul_pero
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Re: Anyone else in Australia?
« Reply #8 on: Jun 26th, 2005, 7:22am » |
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Kiwi,
I hope you find a good doc eventually. I'm still looking, hope tomorrows one will be ok.
Ceduna looks like a nice place. I live in Charmhaven NSW, that on the central coast just north of Sydney.
Paul
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Kiwiinoz58
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Re: Anyone else in Australia?
« Reply #9 on: Jun 26th, 2005, 7:10pm » |
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Hi Paul,
Sorry to hear you'd been robbed.
Things always seem to happen when we are down don't they and some bastards don't care who they are stealing from. I hope you get good success from the O2. Ceduna is a great place if you love beaches and fishing etc like I do.
Cheers,
Jacqs(Kiwi)
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We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
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Barry_T_Coles
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Re: Anyone else in Australia?
« Reply #10 on: Jun 28th, 2005, 1:19am » |
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Hi Paul
I'm Barry from Karratha in the north west of W.A.
Welcome to the site,sorry you have to be here but as you can see there is a huge ammount of info available from the best people.
I've only suffered for the last five odd years episodic and only found the site when my Doc pointed me this way.
I was lucky as I had an appointment to see the doc when I got hit in the waiting room and she picked it straight away.
Meds are not my thing if I can get away without and there are some natural products that really help especially the shadows,both of these are made by Metagenics and are available from most natural health shops or chemists that stock that line, Kaprex is a tablet form at around $ 40.00 for 50 and Fibroplex Plus is powder for about the same price.
Both of these will only work to reduce the effects of shadows and won't stop a full on hit, the Fibroplex does tend to give you the runs in the morning.
I also use a TENS machine that I have had for around 15 years, this works really well for me when I get hit if I pick it quick enough and can reduce the attack by 50-80% in duration
Know what you mean about seeing a doc, up here there's 1 doc for about 5000 patients, but at least the doc I have is bloody good
Kind Regards
Barry
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| « Last Edit: Jun 28th, 2005, 2:31am by Barry_T_Coles » |
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AussieBrian
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Re: Anyone else in Australia?
« Reply #11 on: Jun 28th, 2005, 2:23am » |
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Paul,
G'day, and welcome to the fun palace.
Firstly, re O2, last time I tried to get some it had to be a specialist's prescription though it doesn't seem to matter what sort of specialist (bloody beaurocracy). Also, if you're able to get it, make sure you get the right mask. I've had reasonable success with the wrong one and found it won't stop a headache completely but will stop it from getting any worse.
Trick seems to be getting onto it immediately.
As for doctors, just read all the problems our friends have in America and England and everyplace else, multiply them by ten, and that's exactly where you stand.
If you find a good one and she's female - marry her. If it's a bloke, take his wife and kids hostage.
The real big thing, though, is to arm yourself with information. That way you'll know when you're being given duff gen. The mob here at CH.com can be a bit unruly at times but when they get their minds out of the gutter you couldn't find a more helpful, knowledgable and supportive lot on the planet.
Good luck, good health, and PM me anytime. I check in pretty much everyday and will help any way I can.
Cheers & beers,
Brian.
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paul_pero
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Re: Anyone else in Australia?
« Reply #12 on: Jun 28th, 2005, 6:49am » |
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THanks for all your support and help guys. It really is relieving to know that I'm not the only one having the same problem. Although I'm not glad that you are also suffering.
Good news.
Took info (see Edouble, Gator's messages) with me to doc. He didn't read but listened to what I said and let me have what I asked for. Wrote a script for 10-15 lpm of O2. He did however say " I hope it helps your migraines"  . Anyway hope it works next time I get hit.
Got O2 today and hope I don't need to use it. If I do then I'll be ready 
Paul
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laurad
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Re: Anyone else in Australia?
« Reply #13 on: Jun 29th, 2005, 11:25pm » |
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Hi Paul, hope the O2 is helping so far. Good to see some other Aussies out there. I'm in Darwin (where we have no headache specialist, but at least I got to see a decent neurologist - pity the clusterheads who live in country areas). Hang in there.
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AussieBrian
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Re: Anyone else in Australia?
« Reply #14 on: Jun 30th, 2005, 1:47am » |
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G'day Laurad,
We're almost neighbours. I'm at the top of the Torres Strait looking out of my window at the coast of PNG.
Living bush certainly has it's advantages but, as you say, it's a long way between specialists. Mind you, we've always got the Flying Doctor and that beats the pants off any city medical care.
He was here just last week as it happens - gave me some shots and I've been crooker than crook ever since. Ah, the joys of the tropics.
Otherwise, welcome aboard and stay in touch,
Brian.
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paul_pero
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Re: Anyone else in Australia?
« Reply #15 on: Jun 30th, 2005, 7:06am » |
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Update.
I had another 3 HA'a last night and all 3 disappeared after 5- 10 minutes with the O2. I was woken by the pain, sucked on the gas and then no more!
I have had these damn HA for 14 years. If only I had received the info I found on this site back then. I have been putting up with the pain for nothing.
Thanks to all of you guys for the info. Without you I would still be pacing around and head banging.
Paul
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laurad
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Re: Anyone else in Australia?
« Reply #16 on: Jun 30th, 2005, 10:07pm » |
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Hey Paul,
Great news! Though I know how you feel - sooo happy to find some relief but sooo pissed off that you went through it for years with no help or information. I've learnt more in two hours here than I did in twenty years. But hey, here's to some better times for you!
Hi Brian my nearly neighbour,
Of course - how could I forget the wonderful Flying Doctor! Hope you start feeling better soon. This time of year was always bad for my HAs - they used to arrive every July and finish when the build up started - around late September (been seven years pain free now but dunno why). Are you up around Bamaga? Pretty country I hear, but never made it further than Cooktown myself. Will do the big dry season drive up there one year though (when we get the Troopy well enough). Tropics?? I'ts bloody freezing - I'm wearing socks and long sleeves! Take care and don't let the bastard get you down (well, not too much anyhow).
Laura
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paul_pero
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Re: Anyone else in Australia?
« Reply #17 on: Jul 14th, 2005, 7:21am » |
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Saw a neurologist today. Didn't really help much, but it was nice to meet a doc who knew what he was talking about re:cluster headaches. Recommend I keep with the O2 and suggested trying imigran in either nasal spray or injections.He said imigran was expensive, but I recon he was expensive, $200 for half an hour!
It has also been 3 nights since my last HA, so I hope i'm over then for a while now.
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AussieBrian
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Re: Anyone else in Australia?
« Reply #18 on: Jul 14th, 2005, 7:39am » |
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G'day Paul, great to see you're staying optimistic.
As for the Imigran, besides being so bloody expensive, I've used it a couple of times with mixed results. Only the tablets, mind you.
When I've taken them at the first tiny hint of an attack I've got serious relief, but if I let it go a moment more in case it was just a false alarm then I might as well have spent my money on the horses.
Either way, I don't think they ever actually hurt me.
How you going withe O2, and are you getting any rain?
Cheers and beers,
Brian.
Edited to add - It's past my bed time. Cop ya later.
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| « Last Edit: Jul 14th, 2005, 7:57am by AussieBrian » |
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paul_pero
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Re: Anyone else in Australia?
« Reply #19 on: Jul 14th, 2005, 8:02am » |
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Gday Brian,
Yeah, I tried imigram tabs, but it takes too long to work. I had two the doc gave me as samples a couple of years back. It didn't work and he never mentioned injections or nasal spray.
On my second tank of O2 (size D), but havn't used it since sat night.
We had some rain last week and a little this week. Still need plenty more. I think our dams went up by 0.5% or something like that. Still under 40% of capacity. We have to use buckets to wash our cars, can only water our gardens 3 times a week at certain times and just generally need to conserve water.
How is everything up there? I checked out the island via google. It looks pretty good up there. Its a wonder you get headaches up there in that beautiful area of the world!
I'm gonna give it a few more days PF before I have another beer, just to make sure. And when I do, I'll make sure ones for you.
Paul
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Kiwiinoz58
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Re: Anyone else in Australia?
« Reply #20 on: Jul 15th, 2005, 8:36pm » |
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Gees guys I'm getting jealous of you being able to use O2, I'm still waiting for the local GP here in Ceduna to organise it for me. In the meantime the only relief from an attack is Imigran injections. I use half the dose and it works but the nasal spray and tabs did nought. So glad you are getting some relief!
Jacqs
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We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
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AussieBrian
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Re: Anyone else in Australia?
« Reply #21 on: Jul 15th, 2005, 9:58pm » |
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G'day Jacqs, and don't ask for O2 - bloody well DEMAND it!
If your doctor's a man, marry him. If she's a she, take her husband and children hostage until you've got that script in your hand.
There's also heaps of stuff around the board here written specifically to be printed off and given to the quacks. Good luck and keep pushing.
Otherwise, all is well. Beautiful weather just now if you don't mind the water restrictions. It's only turned on for two hours, three times a day, but they're shifting us to a new house in a couple of months and we think it's got a tank. Make it a lot easier next dry season.
For the moment, though, I'm off to catch dinner. That'll take up fully five minutes of my day then I'll have a little relax.
Cheers and beers,
Brian.
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paul_pero
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Re: Anyone else in Australia?
« Reply #22 on: Jul 16th, 2005, 6:54am » |
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I spoke to soon. 
2 HA's yesterday. Lucky i had some O2 left. Have got a refill just incase. I'm hoping they go away soon.
Paul
Brian what kinda fish do you catch up there?
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AussieBrian
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Re: Anyone else in Australia?
« Reply #23 on: Jul 16th, 2005, 8:19am » |
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Mate, my heart goes out to ya.
What can I say, or just better I avoid the subject completely?
Barramundi, of course. Trevally, tailor, yella-tail, brim, gar, salmon, and a delicacy the locals call white fish and I haven't the first idea what it is. There's also something out there spooled me six times one morning, on 40ld line in shallow water. Goes like a bloody rocket!
Mind you, it's hard work walking those 10 yards from my front door to the ocean - this don't come without effort, ya know.
Some is easier bought than caught. A legal mud crab or cray costs me five bucks, $10 for a monster, and the muddies are just that little bit different to the mainland. Sweeter, a bit more spiney round the front of the shell, and the nippers are always choc-a-bloc full. Rotten place to live, I know, but someone's gotta do it.
Incidentally, how's the O2 going? Did you end up with the you-beaut mask like they talk about here because I've never used one. Just battled through with the ordinary job to fabulous effect and was intrigued to learn it could be even better. Ah, the marvels of modern science, and CH.com.
Heard from Barry recently over at Karatha, Laura's doing OK if a bit rough on the edges, and Kiwi-in-Oz is just, well, Kiwi-in-Oz. Ya gotta luv him.
Stay strong, mate, and stay in charge. The beast can't rule until you let it.
Cheers from the tip of the tip,
Brian.
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Kiwiinoz58
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Re: Anyone else in Australia?
« Reply #24 on: Jul 16th, 2005, 4:36pm » |
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Hey Brian you dill I do be a girl!! Or I should say " I am woman"
Paul sent me a useful message and as I told him I visited the GP here for the first time and took all the info with me. He agreed about trying O2 but won't okay it until he gets confirmation from my former GP and neuro. Like I have forever to wait Could sure have used it yesterday as after 9 PF days I was hit with real bad CH's for several hours and the Imigran injection didn't work for the first time ever. I'm not jealous about your hard life with the fishing as we are 3 minutes from the boatramp, "gateway" to the best fishing in S A. Snapper, Nanigai, King George whiting, bloody big blue crabs etc. And the beaches here are to die for. I love your posts and your sense of humour!!
Cheers,
Jacqs
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We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
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