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New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Anyone else in Australia?
(Message started by: paul_pero on Jun 19th, 2005, 6:42am)

Title: Anyone else in Australia?
Post by paul_pero on Jun 19th, 2005, 6:42am
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 :-[

Title: Re: Anyone else in Australia?
Post by E-Double on Jun 19th, 2005, 9:58am
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!!!

Title: Re: Anyone else in Australia?
Post by Gator on Jun 19th, 2005, 7:46pm
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.

Title: Re: Anyone else in Australia?
Post by paul_pero on Jun 20th, 2005, 6:01am
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

Title: Re: Anyone else in Australia?
Post by paul_pero on Jun 25th, 2005, 7:13am
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

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jun 25th, 2005, 7:57pm
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)












Title: Re: Anyone else in Australia?
Post by Jonny on Jun 25th, 2005, 11:46pm
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
;;D

Title: Re: Anyone else in Australia?
Post by paul_pero on Jun 26th, 2005, 7:18am
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

Title: Re: Anyone else in Australia?
Post by paul_pero on Jun 26th, 2005, 7:22am
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

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jun 26th, 2005, 7:10pm
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)

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Jun 28th, 2005, 1:19am
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

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jun 28th, 2005, 2:23am
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.

Title: Re: Anyone else in Australia?
Post by paul_pero on Jun 28th, 2005, 6:49am
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 :D

Paul

Title: Re: Anyone else in Australia?
Post by laurad on Jun 29th, 2005, 11:25pm
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.

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jun 30th, 2005, 1:47am
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.


Title: Re: Anyone else in Australia?
Post by paul_pero on Jun 30th, 2005, 7:06am
Update.

I had another 3 HA'a last night and all 3 disappeared after 5- 10 minutes with the O2. :D 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


Title: Re: Anyone else in Australia?
Post by laurad on Jun 30th, 2005, 10:07pm
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

Title: Re: Anyone else in Australia?
Post by paul_pero on Jul 14th, 2005, 7:21am
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. :D

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 14th, 2005, 7:39am
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.

Title: Re: Anyone else in Australia?
Post by paul_pero on Jul 14th, 2005, 8:02am
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. :D

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

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jul 15th, 2005, 8:36pm
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

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 15th, 2005, 9:58pm
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.

Title: Re: Anyone else in Australia?
Post by paul_pero on Jul 16th, 2005, 6:54am
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?

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 16th, 2005, 8:19am
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.




Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jul 16th, 2005, 4:36pm
Hey Brian you dill I do be a girl!! Or I should say " I am woman" ;;D
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

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 17th, 2005, 8:18am

on 07/16/05 at 16:36:17, Kiwiinoz58 wrote:
Hey Brian you dill I do be a girl!! Or I should say " I am woman"

Forgive my mispront.

I be but a simple man of limited means and intellect.  By way of apology I lay me on the floor so you can kick me with the feet I shall happily annoint in goat's milk, before peeling you yet another grape.

And yes I've seen your beaches, and I know why you host some of the greatest surfing contests in the world (after Texas, of course).  I've also a nannagai recipe I'll PM you.

As for O2, you're making just a tiny little mistake in simply asking for it.  Go back to your friendly doctor and bloody well DEMAND it!  

If he's a he, marry him.  If a she, take her husband and children hostage until that simple script is in your hand, and BOC will fill it within 10 minutes.  

Don't let 'em muck you about on this one, because they will if they can.  Their beaurocratic double-speak is just the same as what comes out the southern end of a north-bound bullock.

Keep smiling, rain's coming soon or else,  

Brian up north.

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jul 17th, 2005, 5:06pm
Mmmmmmmmm not sure about the goats milk  ::)

As with most country towns in Oz the GP here is not Aussie but a black as African.
Surprisingly though he has a good command of the strine and was reasonably well informed and took all the printed out info I gave him to photo copy and read.

Taking your advise to heart if I haven't heard anything within the next couple of days I shall endeavor to get an appointment and do a litttle pushing for the O2. The main prob there is that there is usually a wait of at least a week, often longer to see the bugger.
I've also sent an e-mail to BOC to see if we can have O2 delivered here and in what quantities.

Rain?? We've had enough now, time for some sunshine, so a fishing we can go :D

Cheers, Jacqs

Title: Re: Anyone else in Australia?
Post by paul_pero on Jul 18th, 2005, 7:22am
HI Brian and Jacqs,

Sounds like everyone likes to fish. I live 50m from Lake Budgewoi. The only decent fish we catch here is bream and flathead. The kids love going out on the boat and fishing for 15 minutes before asking to ride to another spot for another 15 minutes and so on.  :)The beach is 10mins by car and I love a fish of the beach at night or early in the morning. More flathead and bream as well as jewfish, taylor and plenty of rays and little sharkies. (do I actually swim with all of them?)

I took out a trainee at work today who suffers CH. He was the first CHer I've seen in the flesh. Told him about the site, so maybe we will get to speak to him soon here.

Anyway hope everyone is well.

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 18th, 2005, 7:35am

on 07/18/05 at 07:08:57, paul_pero wrote:
There seems to quite a few of us in Aust sadly.

Goes back a while now but I took out a patent on CH so's I was the only one world-wide allowed to suffer it.  All others had to ask my specific permission before having an attack, or simply not have an attack at all.

Regrettably there's been infringement after copyright infringement and people are still allowing themselves to be zapped.

Their own bloody fault, I reckon.  Download illegally the rightful intellectual property of another and you bear the consequences.

Fair dinkum, there's no helping some people!

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jul 18th, 2005, 4:59pm
Brian it's a shame you didn't keep the CH's to yourself, fair go mate we could all live without them [smiley=laugh.gif].

Yep Paul fishing is the life and it's great to hear that you take the kids out. I learned to love it cos my dad did the same with us. My partner fishes part time proffessionally here with a partner and I get some interesting fish brought home sometimes, but my fav is prob flathead. One I miss though is flounder. In NZ we used to get them a lot but no netting allowed here.
Cheers guys,
Jacqs

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Jul 19th, 2005, 1:13am
Hi Jacqs
Barry here welcome hope things are getting better for you.

Im only a new member to the site myselfe, found it around christmas when going through another hit.

I've only had it for about five & a half years and this is the second time but this time around I look like I might be in for a long trip, still getting shadows six months after the first hit.

I read in another post that you are in Ceduna, I am an expat croweater my home town is Peterborough but i've been over here in WA since 1968 and have lived in the Pilbara for the last 23 years so I guess i'm a sandgroper now.

Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jul 19th, 2005, 5:50pm
Hi Barry, yes it's sad that we all have to meet here but it is certainly so much better than doing it alone! My partner is from WA & used to live in Geralton but I can't find the place you live in my map book anywhere. I'm lucky he is very supportive but as with all supporters there's nothing they can do to help really.

My CH's started March last year and were horrendus for 8 months 5-6 days a week. The Verap dose was increased and I was 2 mths PF but they came back with a vengence. Had only 9 PF days since then and the last week has been as bad as ever. Yesterday it they reached 91/2 on the kip scale and the Imigran didn't help. On average now I get 6-7 hits a day and 5-6 days a week. The pain is bad enough but when they finally depart for the day I'm left totally buggered, no energy at all. Goodness knows how I managed to work with them, thank heavens I was able to retire early ;;D

Here's hoping your cycle is short and you get lots of PF time,
Cheers,
Jacqs

Title: Re: Anyone else in Australia?
Post by millsy on Jul 20th, 2005, 5:36am
Hi Paul

Thanks for the training day on Monday.  This looks like a great site for CH sufferers.  

Good to see the 02 is working.  Still hoping I don't get my 1.05 am nightly wake up call.  Good to see this good website for all of us poor sufferers.

Millsy

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 20th, 2005, 6:49am
'day Millsy, and I've visions of you and Paul sitting in the front of the ute arguing about whose turn it is on the oxy bottle!  Fair dinkum, I won't sleep tonight just thinking about it and it's all your fault.

Either way, welcome to mayhem.  Look around the place and ask all the questions you like because we reckon there's no such thing as a silly one (though there's some pretty silly answers).

It's a wealth of information here and you're amongst people who understand only too well what you're going through.  Not just the pain but all the fears and we're all on your side.

Also, PM me anytime if there's anything I can help with that you don't want to make too public.  You're secrets will be perfectly safe with me because the only person I otherwise discuss this with is the editor of the Sidderny Telegraph, and I'm sure he can be trusted.

All the best to you and yours,

Brian Up North.


PS   Wait till you're PF and Paul ain't, then crack a tinnie.

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Jul 21st, 2005, 2:32am
PS   Wait till you're PF and Paul ain't, then crack a tinnie.

Struth Brian thats nearly as bad as steelin a mans beer.

Cheers people
Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 21st, 2005, 2:48am
Yeah, but Paul's a boss and Millsy's a worker and that makes it fair.

You heard from the girls lately?  Thay've been a bit quiet and I worry for them.

Brian.

Title: Re: Anyone else in Australia?
Post by AussiePaula on Jul 21st, 2005, 7:15am
Hi Paul,

Have sent you a message, I have just joined today.  My husband has been suffering from CH for a long time.  We haven't had any trouble getting O2.  We live at Ettalong, about 30 mins south of you.  Let me know if we can help.


Title: Re: Anyone else in Australia?
Post by paul_pero on Jul 21st, 2005, 8:35am
HI all,

I think there is too many of us in Australia. This is supposed to be the lucky country!

Brian, I wish I was a boss. I just took millsy out on the road to show him the ropes. If I was the boss I'd be  whipping the staff to work harder [smiley=laugh.gif].

and I'm almost ready for my beer. I think I'll try this weekend. It'll be a good test to see if they've gone.

It's been afunny cycle this time. Currently i'm getting one HA every 2-3days usually at 7am. I've never had it like this, they usually just hit every night (it might skip a night here and there) and then stop. I don't know if its the melatonin or the O2 changing the cycle.

And Brian I wish you took me to court for your patent 14 years ago. I could have given them back to you back then. Now I think its too late. They seem to have attached themselves to me. :'(

Paul


Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 21st, 2005, 8:59am
Trading Melatonin for grog?  That's got to be the deal of the century!  Go for it, mate, and I'll have one at this end with you.

Never tried the stuff myself, but from what I've heard from all our friends here I'll certainly consider it next time round.  I've been pretty much drug-free for 10yrs now,  found they were causing me more upset than just fighting the dragon alone.  But to each his own.

What is it about the Central Coast that suddenly CH is pandemic?  Are you contagious or something?  

It's not as though we've had some change of government but I still reckon John bloody Howard's to blame.  Him and Amanda bloody Vanstone.

I also blame them both for the weather just now.  Fair dinkum, blow the dog off the chain.  Just cast a lure and it landed fully 250 meters away - behind me.  Reckon I'll open a bottle of sandwiches instead.

Cheers and beers,

Brian.

Title: Re: Anyone else in Australia?
Post by paul_pero on Jul 23rd, 2005, 8:39am
Good news, I'm PF 4 days and have had my first beer without any repocusions.  Actually today I've had 8 beers so far. :D And enjoying them. :D Gotta go and make up for lost time.  :D

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 23rd, 2005, 8:50am

on 07/23/05 at 08:39:26, paul_pero wrote:
Good news, I'm PF 4 days and have had my first beer without any repocusions.  Actually today I've had 8 beers so far.  And enjoying them. Gotta go and make up for lost time.  :D

Tryping with one hand, drinking to your bloody fine health with with the other.

Hat's off to ya,

Brian.

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jul 23rd, 2005, 10:37am
My fingers are crossed for you Paul, hope it lasts forever :)
Cheers,
Jacqs

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 24th, 2005, 8:05am
C'mon Paul,  it's been 24hrs since you logged out to go to the rubbedy!  How'd you get on?

I'm hoping against hope you're still too wobbly-booted to type.  Please tell me I'm right.

Title: Re: Anyone else in Australia?
Post by Moulis on Jul 24th, 2005, 8:36am
Hey folks,just found this site after waking up at 2 am and trying to ride another one out. It was like finding all my symptoms and traits in 5 minutes.
I live in brissie at the moment but they have followed me up here too. I visited my first brissie Gp the other day and told him i suffered ch's and needed some deseril. He thought i was a junkie.I had to explain what i knew about CH to him and how treat them...which was bugger all, except that i dont know why i get em, they hurt like i cant explain and then they go....then they come back...ra rar ra.
anyway...i spose they will go again soon and i'll be able to live some kinda normal life.
This site has given me heaps more than ive learned in 15 years in less than an 10 minutes.
Cheers every1,
Moulis

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 24th, 2005, 9:04am
Moulis, how many bars are there in the average pub?  How many pubs in the average town?  How many towns in the average state, and I have to meet you here!!!!


Come the revolution, I tell you, things will be different and the Beast will be first with his back to the wall.

Otherwise, welcome aboard.  Don't know Brissie that well myself and every time I've been there I got hopelessly lost.  You say you just got there from further south so I'm guessing you're from around the central coast of NSW.  That's where Paul-bloody-Pero lives and he's contagious.

So, how are ya?  Sorry you're here but it's the best place to be if you're suffering.  The only defence we have against this nightmare is information and this is the place to get it.  There's also heaps and mobs of people who know from the inside what it's like - as opposed to doctors who think we're junkies.

Stay in touch and PM me anytime.  You're no longer alone.

Kindest regards,

Brian.

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jul 24th, 2005, 8:00pm
Hi Moulis,

Shame we have to meet here, but it's just THE best place for us CHers. You'll get all the info and support you need. Keep in touch and ask lots of questions and everyone will do their best to help. Welcome aboard !
Cheers,
Jacqs :)

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jul 24th, 2005, 8:02pm
PS Brian,

Any chance of that nannagai recipe? I'd love to give it a try. Anyway how are ya doing lately way up in the north there :)

Cheers,
Jacqs

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 24th, 2005, 8:59pm
Sure, Jacqs.  I'll just take Denny her coffee so she can keep working, then I'll come back here and continue enjoying myself.


Edited to add:  Done. Check your PM inbox, and I'm dinkum in the choice of wine - one perfectly off-sets the other.

Cheers and beers,

Brian.

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 25th, 2005, 9:16am

on 07/24/05 at 08:05:51, AussieBrian wrote:
C'mon Paul,  it's been 24hrs ........


48hrs now, and we want deatils.  What's her name, her place or yours, photo evidence?

Importanter even is - didja slay the dragon???

Please tell us yes.

We worry,

Brian.

Title: Re: Anyone else in Australia?
Post by Moulis on Jul 25th, 2005, 10:25am
Hey folks, its interesting to read the different ways these low bastard things effect our lives.ive just started to read some other peoples stories and have diagnosed my self with periodic ch's. I feel so sorry for the chronic sufferers who get little or no remorse.My life grinds to a halt nearly and as you all know you cant plan a day without having it destroyed. I tried to alter my sleeping last night and woke up at 6 am with that little twinge that i get that tells me its coming.U ssually takes about an hour or so to shake but this one took 4 hours, and then hung on the rest of my head like a hangover for the rest of the day. It is amazing that there seems to be so many walking around going thru what i am and i havent met anyone personally who suffers.
Anyway folks,
Stay sane, step up to it, and battle all ya can,the way i see it..we win in the end,besides....what else can we do?lol.
Cheers
Moulis

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 25th, 2005, 8:10pm
The monster can win only if you let it.  Rule one of this horror show is staying in charge.

Otherwise, how are ya?  And what's Deseril, I'm not familiar with it.

Weather fine, track fast,

Brian.

Title: Re: Anyone else in Australia?
Post by Moulis on Jul 26th, 2005, 12:18am
The rail is out 3 metres from the 1200m to the 400m, where the cutaway rail applies.
Im good, got a day off. literally and no pain either,just bought a cheap fishin reel from the pawn shop and now im happy.cheers.
Moulis

Title: Re: Anyone else in Australia?
Post by paul_pero on Jul 26th, 2005, 6:46am
Gday

I'm still PF. It won't be back for 8-18 months now. Don't know when or where, but if the last 14 years are anything to go by, they will be back.

Soory to meet a new sufferer to the site. Welcome anyway Moulis. As you have already found there is plenty of valuable info to read here. Hope Brisbane treats you well. Good luck with the new rod.

Brian, I've been with my wife, Linda. There's no one else.

I'm so glad the dragon is sleeping now. I'll be returning the oxygen and will definitely get it next time, it trully did work wonders for me this time. I'm so glad that I found this site and got help & support from everyone during the cycle.

I'll still keep on with the site. If I can help anyone like you guys helped me, I'll be stoked.

Paul

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 26th, 2005, 7:25am

on 07/26/05 at 06:46:22, paul_pero wrote:
I'm still PF........ I'll still keep on with the site. If I can help anyone like you guys helped me, I'll be stoked.


Music to any CHead's ears.

Cheers and beers,

The Team.

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Jul 31st, 2005, 9:23pm
Got some nannigai brought home yesterday Brian so tried your recipe. My partner, Steve is a KG Whiting only man but he tried this dish last night and you should have seen the amazed look on his face. This is beautiful said he and I agree.
Thanks heaps,
Cheers,
Jacqs  :D

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jul 31st, 2005, 9:40pm
The extra bit of work is well worth it.  Did you go with the Pinot Noir?

Even more better, did you pick up on Paul's news?  Bloody beaudy!  Also, Michelle's promised to write soon.  She's been pretty busy but all seems well.

Back to the kitchen for me, I'm afraid.  Got 10 chooks to get on the rotisserie. It's a job I don't ordinarily enjoy so I just pretend they're all John Howard.

Bottoms up,

B.


Title: Re: Anyone else in Australia?
Post by paul_pero on Aug 1st, 2005, 6:25am
Hi all,

Brian, sounds like you got a party happening.(10 chooks!!) or you are bloody hungry. :)

Its been a good week PF. Its like it never happened. It always is like this. I get it for a while, then live life like normal UNTIL that dreaded pain reappers. I guess its the same for all of CHers.

Paul

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Aug 2nd, 2005, 5:23am
Paul it's fantastic that you are still PF, great news!

No Brian just stuck with my normal unwooded chardonay but it was loverly ;;D

Shalom and cheers!
Jacqs

Title: Re: Anyone else in Australia?
Post by paul_pero on Aug 7th, 2005, 5:33am
hi hope evryone doing ok out there.

jacqs, have you got O2 yet. I'll check your other thread in a minute to see.

Hows the weather around oz? Down here its been a beautiful summers day in the middle of winter. Could have gone swimming if the water wasn't so cold. We still need rain, but its not coming.

Paul

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 7th, 2005, 6:06am
G'day Paul, good to hear all's well.  You still PF? (You lucky, lucky bar steward.)  

All good this end, thanks.  Weather a bit wooly, winds fair to frightening - 3 bodies recovered, 5 missing presumed dead - so of course the fish are off the bite and we're having to make do with crabs and crays. Bit of rain we got with it settled the dust but made no difference at all to our water restrictions (it's turned on for 2 hours, three times a day).

Heard from Jacqx a couple of days back.  Usual song and dance in getting O2 she's ploughing on.  Picking up an off-road camper in Adelaide and spending 12 months going round the block.  Never know, you might get a visit.

My dancing partner's just dropped in to give me further lessons, but pass on my best to the others as you see them.

Cheers and beers,

Brian up north.

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Aug 8th, 2005, 10:54pm
Hi guys,
Well I finally got everything sorted out re the O2. Rather than buy it yet the doc has arranged for me to get the treatment in the E R for a couple of times to see if it works.
Of course since that was all done I haven't had a CH bad enough to go.
Murphy's Law I reckon.

Cheers,
Jacqs

Title: Re: Anyone else in Australia?
Post by paul_pero on Aug 13th, 2005, 6:25am
Hi

Jacqs, it's good to hear you got O2 now, and good to hear that you havn't had to use it yet. I hope you don't need to for a while. Does it mean you havn't had one yet, or just that you havn't had a serious $%^&#* HA since you got it? I found it helped get rid of the low Kips as well as as the really bad ones.

Down here like up in Brians territory we havn't had a decent enough fall of rain. It seems everyday is going to be fine a sunny for a while. Its hard to complain when winter is fine and 22 degrees. We have had a couple of cold ones this last week.

I've been starting work early and finishing late this last week to try and build up our bank balance. Had little time to jump on the net. Will do the same for the next  couple of weeks .

Cheers
Paul

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Aug 13th, 2005, 6:26pm
Wish I could say I haven't had any Ch's Paul, but no such luck.  Most of them have been a little less intense and also changed tact as in each one isn't lasting as long as they used to. Soooooo the few times I've decided to go try the O2 by the time I've got ready the bugger has gone and then it's usually about 15-20 mins before the next one.
Another factor involved is that my doc and I think I may also have Chronic Paroxysmal Hemicrania, but he wants me to try the O2 before he tries the Indomethacin.
What more could one want than another type of headache to deal with ::)
We have had some decent rain falls in the last few weeks but it's been cold too. Yesterday was very warm but it's raining again today. Not had any weather nice enough to take the boat out for a while so I'm suffering fishing withdrawl.
Have a great PF day guys,
cheers,
Jacqs

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 13th, 2005, 6:44pm
Hiya, Jaqcs, and sorry you're hurting. There's a few of us doing it a bit tough just now.  Except Paul-bloody-Pero, of course.  He gave his to the apprentice and has been laughing at us ever since!

Maybe that's what we all need - apprentices.  (Nah, on second thought I'm not sure I'd even give 'em to John-bloody-you-know-who.)

As to the O2, and perhaps the doc is unaware of it, is the importance of getting onto it the moment you get hit.  Many of us have found that the longer you leave it the less effective it's going to be. Perhaps that might hurry your script up a bit.  

There's also a lot of our American friends have got their own mask and buy O2 direct from the welders' shop. Dunno about the health and safety aspect of it but maybe it's a hole worth throwing a line into.

Either way, good luck, and have you heard from Moulis? Last I knew she'd bought some fishing gear and that's that so either they're biting like mad or the bunyips got her.

Cheers and beers,

Brian.

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Aug 14th, 2005, 10:54pm
Hi you lot
I've been workig out bush for the last few weeks so havent been able to post for a while.
Good to see everyone's keeping in contact.
I got hit with the old nausea a couple of weeks ago and ended up in the ER via ambulance but after half an hour on the O2 I was Popeye on spinach and could have taken on the world.

A bit of good news regarding O2, I was under the assumption that I would have to get a script from my Doc to be able to get the O2 but I rang my local BOC where I have an account for other gasses and I was able to get medical O2 straight up no problems, I had to purchase a flow regulator at around $95.00, the non-rebreather mask I got from the ER as they dont reuse them and I use the normal welders O2 regulator that the flow regulator attaches to, so now I am all set up ready to hit the demon head on if I have to.

We may have another Aussie joining the ranks shortly, A childhood best friend ( John )and best man at my wedding has had CH for the last 30 years and hadn't told me, it was just by chance that our wives caught up with each other just after I got hit the other weekend and naturally the conversation turned to how the family was getting along and of course CH came up and Johns  wife then told my wife about John having CH as well.
I gave him a ring last Saturday night and we spoke for nearly three hours ( we got a lot of CHit of the chest ) and feel a lot better for it.

I have pointed him to this site and he's going in as soon as he goes back to work, he like me has access to the Net from his employer so dont have it at home.

Ill get of the gabble for now and check in daily for the next couple of weeks before I go bush again.

PFD&N
Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 15th, 2005, 3:17am
Three hours on the blower?  You'd have been like a pair of old biddies over the back fence.  Hope you had your skirts on.  But what a coincidence, eh.  All those years and you both kept it secret.

Good to hear you're back from the bush.  I know whenever I get back to town I see all these white fellas getting about and get scared.

Tell John we're looking forward to hearing from him and just now it's ok to talk to Paul about the golden coldie.

Cheers and beers,

Brian.

Title: Re: Anyone else in Australia?
Post by paul_pero on Aug 17th, 2005, 8:26pm
Hi all.

Good to hear you got O2 Barry. I returned my bottle and have been told I have to go through all the fun & games next time I need it. I don't think it will be so hard the 2nd time with the doc. It's pretty amazing that you and your mate both had had CHs and not told each other. I guess its not something you can really talk to other non CH's about. Its not something you want to bring up in conversation like " I was crying and screaming like a baby last night"


Jaqcs, sorry to hear your situation right now. Maybe you have to spend a night in ER until one hits so you can see if the O2 is of any benefit to you. It worked wonders for me this year and I'm really sorry that you havn't been able to use it yet.

Brian  what can I say. Its good to be PF, but I know one day it will *BANG* come and get me again. Its a terrible waiting game, but hopefully its going to be a long while before it comes back. How are you going are you PF at the moment?


to all other aussies out there PF days to you all.

Paul

Title: Re: Anyone else in Australia?
Post by Robyn on Aug 18th, 2005, 5:24am
Hi all my name is Robyn I am from Sunbury in Victoria.   I developed CH about 10 years ago but was not diagnosed until about 4 years ago.  For many years I thought  I had a strange form of hayfever.  I have a great GP and was diagnosed by a Professor at the Royal Melbourne.  I am taking Isoptin as a preventer which generally works really well.  When I am having a cycle I get some relief from painkillers and a muscle relaxant.  I get the very annoying watery eye and running nostril and have at the worst moments have facial numbness on the same side.  I have not been able to find out whether that is part of the symptoms or not.  After a particularly bad episode 4 years ago I lost the focussing ability of my eye.   My husband and two daughters are really supportive.  

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 18th, 2005, 7:21am
G'day Robyn, and of all the places we could have met you it had to be bloody here!  There's no justice, I swear it, and certain politicians named John are entirely to blame.  Entirely and completely, mark my words.

I admit the El Nino effect may come into play along with the Free Trade Agreement but have you tried the Cluster Quiz over on the left?  It's 4th down, under the yellow high-lighted 'new visitors'.

The reason I ask is that it's terrifically important you really are being visited by this monster we affectionately refer to as The Beast.  There's other types of headaches that mimic it and if you're not CH+ then perhaps another problem is going untreated.

Great to hear that you've at least a little faith in your GP and the Professor.  One of our greatest stumbling blocks is getting members of the medical proffession to believe we're actually suffering a little pain and just a tiny bit of discomfort.

Either way, you've come to the right place.  There's a wealth of information here (our only defence) along with people internationally who understand only too well what you're trying to deal with.  We're trying to deal with it, too.

You even have your own little band of Supporters!  Hubby and the kids!  There's no drug, therapy or magic cure will ever compete with that.  Please let them know that they are very welcome here, too.  Supporters are especially important because they do it tougher than we do.

Please feel free to PM me anytime, I check in every day.  There's other Aussies here, too, and our friends from around the world are entirely on your side.

Keep smiling regardless (it keeps 'em guessing),

And kindest regards,

Brian up north.




Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Aug 19th, 2005, 3:49am
Geeze, how the hell would anyone survive without you guys. I believe my partner has had enough! He wasn't expecting this sort of garbage when we met so it has hit him pretty hard. I understand competely but am between a rock and a hard place with no choice in the matter.
Thank god for you all Paul, Brian, Barry etc, love ya all,
Jacqs

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 19th, 2005, 8:29am
Steady on, Jacqs.  Deep breaths, relax, and two paces backwards.  

We CHeads get it easy compared to those around us who can't help us even while they want to.  Think they wouldn't take our pain away if they could?  Imagine the pure helplessness they feel, the sheer inadequacy, impotence and desperation in being able to do absolutely bloody nothing!

I've never seen anyone get hit and honestly don't know how I'd handle it if I did, so let's also look at it from his point of view. Pretty bloody scary, I reckon.  

He's perfectly welcome to talk to me off-line anytime, but given that I'm CH+ he'd perhaps be better off talking to others.  I can personally recommend She-Who-Must-Be-Obeyed (my other half, DennyM) or perhaps our dear friend from over the ditch, Firebrix.  Nani and Margi are ever there to help.

You're not alone, neither is he, and there's a lot to be said for just talking.

Let's talk,

Brian.


Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Aug 20th, 2005, 6:44pm
Thanks Brian for your sensible words of advise. I guess things had just got on top of us, we'd been doing a fair bit of fighting and I was scared. We are trying to quit smoking and I get quite depressed as well which doesn't help matters but we seem to be okay for now.
Thanks again,
Cheers,
Jacqs :)

Title: Re: Anyone else in Australia?
Post by DennyM on Aug 20th, 2005, 10:08pm
G'day Jacqs

For my sins - I'm Brian's supporter.  Am really feeling for both you and your partner.  Life's thown us one hell of a challenge, and probably one of the best ways to meet it is to educate ourselves in every aspect of the nature of the Beast.  This is just as important for supporters as it is for sufferers.

A place to start - introduce your partner to Supporters' Corner, and get him to read Jackie's "Another Kind Of Pain" - third message down.  It won't answer all his questions, but it will provide him with an insight and perhaps make him realise that he is most definitely not alone.

Should he ever feel the need to reach out for a lifeline himself - both Brian and I are here for him at any time.
We log in every day, and can't bear to think of anyone feeling "stranded".

Do you have the O2 situation sorted out yet?  It's just so @#*%! frustrating knowing that something so helpful and effective is there within reach and all that's standing in your way is a pig-headed doctor.  OK - I can understand their concerns about allowing us to have the O2 where & when it can do most good, particularly
for those of us who are smokers and especially as we're now well and truly lumbered with all this public liability bullshit - but I always thought their priority was to alleviate suffering.  How bloody naive of me!

Hope PF days are just around the corner for both you and your partner.

My love to you

Denny

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Aug 20th, 2005, 10:34pm
Thankyou Denny, you are a sweetheart.
The doc has sorted things so that when I get a bad hit I can go to the hospital and try the O2. The main prob with that is by the time I'm ready to go there the CH is nearly gone.
They have changed lately as in instead of each one lasting over an hour I'm getting lots more but each one now only lasts about 20 mins. The first one of the day is the worst then they diminish on the pain scale as the day progresses.
No explaining these bastards is there.
As for my partner, well we are coping at the moment, so thanks again.
Cheers,
Jacqs

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 20th, 2005, 10:36pm
PS, Jacqs, tell him so long as he behaves I'll send you a special recipe for KG Whiting and oysters with Beaujalais.

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Aug 21st, 2005, 10:36pm
Hi Jacqs

Nice to hear the pian is decreasing in duration, at least thats some sort of a break.

If you are having trouble getting O2 it might be worth doing what I did, set up an account with BOC if there is a depot in town, purchase your own regulators or hire the oxyviva set up from them for around $24.00/month plus the cost of the gas.

If you decide to buy your own it should cost around $250.00 total for the Oxy regulator about $100( the ordinary welders one works ) a flow regulator $100 a non rebreather mask can be got from the ER as they dont re use them, when you go to the ER for your gas hit ask for the mask to take home, I have got a D size bottle I cant remember what the cost of the gas was and there is a yearly rental on the bottle.

Hope things keep looking up
Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Aug 22nd, 2005, 6:59pm
Thanks guys :D
Barry I'm not actually having trouble getting it as  I didn't want to have to buy it until I know if it works or not. I can get it at the hospital whenever I need it's just that the CH's have been too short in duration to give me time to get there. Murphy's sodding Law as before it was organised I was having real bad ones for hours.
Wishing you guys are heaps PF time,
Cheers and only 3 1/2 weeks till we bugger off,
Jacqs

Title: Re: Anyone else in Australia?
Post by paul_pero on Aug 29th, 2005, 5:37am
Hi all,

Jacqs, hope you are feeling better. How is O2 going? Have you had a chance to use it. I still think its worth camping out at ER for one night so you can see if it works or not. Brian & Denny, Barry and all the others will keep on giving you morale support. My wife at one stage had difficulty dealing with my hits, but now is really supportive, escpecially since we now know what we are dealing with and how I can cope with it when it comes back.


Today I had a phone call from my brother in law, who say his friend have an attack similar to CH during a game of soccer they were playing. I spoke to the guy and let him know about this site. His doctor told him he has migraines, but from what he told me it sounds very similar to CH, I told him to do the cluster quiz and look around the site. I'm also passing on all info I have to him as well as the name of the neuro I saw. Its getting scary with all the people I'm meeting with CH. ( I might be contaigous like Brian said [smiley=huh.gif])

PF to you all
Paul

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 29th, 2005, 9:03am
Ha!  I was right!!  

Paul's the carrier, the poisoner, the vector of all things diabolic and just look at what he did to his apprentice!  One day on the job, gets infected, joins us here at CH.com and we've never heard from him again.

Sound ominous, folks?  I mean, ominous with a capital Omm?  Would you share O2 with this man, given that he's walking around pain free, drinking beer and gloating, then doesn't even invite us home to Crackatinny?

Well just for the record, Paul-bloody-Pero, I'm gunna be down your way early December and I'm out to exact revenge.  

Revenge!!  

Not just for myself, you understand, but for all my Aussie friends here. I make it my quest to ensure so much alcohol goes down your rotten contagious throat that all hint of infection and epidemic will be banished forever and never again will you be able to visit your curse upon innocent drivers.

You've been warned, you devil incarnate, so make your choice.







Pints or schooners?


Title: Re: Anyone else in Australia?
Post by Lizzie2 on Aug 30th, 2005, 5:24pm
G'day there,

(Yeah...I can pull off the Aussie hello - one of my best friends from childhood lived in Warilla in NSW) :)

Anyone ever go to Drs Hand, Stark, or Williams?  I also see a reference for Professor James Lance on the one list I have.

I think they are all headache specialists in Australia - would love to hear how they fare for the CH patient if any of you have been to see these docs!

So how's the nursing exchange program in Australia?  I looked into it a few months ago - won't be for awhile yet as I'm currently tied to my place of employment via scholarship payback, but I really can't wait to go!  You can either go on holiday and work while you're there - convenient to your schedule/location.  Or you can pick up and move for a year, except the pay is a little on the low side!

Good luck to all of you in dealing with the CH - especially if you're out in the bush! <g>  

Hugz,
Carrie :)  (Or...as Kirsty used to  call me: Keerie  LOL)

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 30th, 2005, 6:37pm
Hi'yall Keerie, (my attempt at your language) and happy to help.

I've a dear friend from England who might know a bit about this as she's currently nursing in New Zealand, I think on an exchange program.  I'll email her now for you and see what she knows.

Cheers and beers,

Brian.

Title: Re: Anyone else in Australia?
Post by Lizzie2 on Aug 30th, 2005, 6:42pm
Thanks Brian,

Well she only pronounced it as Keerie - apparently Carrie is pronounced slightly differently down under!  haha

I lost touch with my friend some time ago - she moved somewhere else either in Warilla or nearby - we actually had moved at the same time, and the new addresses got lost in the process.  Don't even have any idea how to find her as by now she very well could be married or living somewhere totally different!

Not to mention - hard enough to even find Warilla on the map!  haha

Looking forward to hearing about the nursing experience.  I'd be working in baby-land....of course. ;)

Carrie :)

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 30th, 2005, 6:49pm
And you'll be welcome, too.  My emails away and I'll let you know the moment I hear from her.

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Aug 30th, 2005, 6:50pm
Hi Carrie

I'm not in the medical field so cant say what the job or pay situation is.

I've posted some links to Western Australian Hospitals below.

One thing to think about is accomodation, I know that some of the larger Regional Hospitals still have Nurses quarters and they are generally set up with your own room with ablutions and comunity cooking facilities, its a good way to get yourselfe established and settled before looking for private rental and the cost is minimal.

The Geraldton Regional Hospital is a brand new building that has replaced the thirty odd year old one and still has the nurses quarters, a freind of mine works there in the admin, Geraldton is a major regional country town and is only four hours drive from the capitol city of Perth.

Hope this helps you out and if you need any more just ask, i'm sure the other ausies can fill you in with hospitals in thier respective states.

http://wchs.health.wa.gov.au/careers/jobvacs/list.php

http://www.mmhr.org.au/Home.asp?documentid=34

http://www.rph.wa.gov.au/

PFD's
Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 30th, 2005, 7:05pm
Excellect point, Barrie.

Hey, Lizzie.  Look for something in the bush because you'll learn more there in a week than in ten years in a major city.  

Out back is where a first-aider does the job of a nurse, our nurses are referred to still as 'sister' and it's a term of absolute respect because they do the job of doctors, and the doctors are nonexistant because they're all in the city.

The ambulance driver is likely the local publican (unpaid) and all our firefighters are volunteers.  Wouldn't swap it for quids.

Brian Out Back.

Title: Re: Anyone else in Australia?
Post by Lizzie2 on Aug 30th, 2005, 7:11pm
Hmmmmmmmmm I'll have to think about that!  I'll be getting my neonatal nurse practitioner - but that's not much use without someone to actually deliver the babies, first!  haha

How are the bugs?  I don't particularly like bugs - animals, I can deal with - bugs, not so much!

So.....along with the CH related question...anyone ever see any of those docs?  or even heard of them?  I'm a product of lidocaine (lignocaine) IV trials here which is primarily based on the success in Australia.  LOL


Oh and by the way - big cities are really good places to learn, too - how else would I know how to take care of babies born in drug withdrawal and other things you see way more in the city than anywhere else!  LOL  Seriously though - it is a good learning experience!  ;)

Carrie :)

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 30th, 2005, 7:35pm
I admit never having heard of the doctors you mention but, equally, I've avoided the medical proffession completely for ten years now as regards CH.  (Fair dinkum, the cure was worse than the disease.) Mind you, I think Prof Goadsby is an Aussie.

As for the bugs, they're much worse in the movies than in real life.  It's mainly a matter of being aware of them and taking precautionary measures, same as you'd do anywhere.  Fact is, you'll be at far greater risk of contagion on the aeroplane coming over.

Another thought.  Try typing 'Royal Flying Doctor Service' into your computer thingy.

Bestest always,

Brian.

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Aug 30th, 2005, 10:59pm
Hey Paul
It looks like you could be in for a torrid time around Xmas I suspect that Brian would not be gentle with a crate of beer.

Well just for the record, Paul-bloody-Pero, I'm gunna be down your way early December and I'm out to exact revenge.

I'm hoping that I will be able dance the light beer barn dance myself shortly, I still get hit with shadows if I have a beer, wine's fine and so is scotch so I guess i'm not on a desert island.

PFD's
be prayin for you around xmas
Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by Frosty on Aug 31st, 2005, 12:17am
Hi all.

Just a quickie to introduce myself!

I'm almost an Aussie but not quite. I'm officially still a POM - I moved over from Derby in the UK six years ago to go on a working holiday and escape the crappy weather.
My second day in Melbourne and I met a beautiful girl who I married four years later. (I don't mess around when it comes to women!)
I started with CH's when I was about 20 (some 15 years ago now) and my GP had no idea what it was. I went to see eye specialists who could find nothing wrong, I had scans - they could find nothing wrong. I just ended up putting up with it, knowing it would go in a few weeks and not return for 6-12 months.

I had a remission for about two years when I came to Australia, but then they started up again (maybe I got used to the switched seasons down under?)
I went to see a GP who referred me to a brilliant neurologist. He's been saving me ever since. Best bloke I ever met - I guess anybody that could offer an diagnosis and some way to ease the CH would be a top bloke!

Brian - I got my script through today for the O2 so I'll be getting the gear from BOC any day now!

I had to laugh last weekend as I joined up at the local RSL for some cheap beers - now I can't touch the bl**dy stuff!!!!  [smiley=laugh.gif]

Cheers all,
Neal


Title: Re: Anyone else in Australia?
Post by Lizzie2 on Aug 31st, 2005, 12:44am
Neal - I'm really glad that you've found an excellent neurologist who has been really trying to help you!  Also glad you'll be getting O2!  Hope it works for you as well as it does for me and many others here!

So..........what's the name of your neuro?  As I said a few posts up, I'm trying to find out if any of the CHers here have seen some of the more well-known Aussie specialists in headaches and migraine.  Does your neuro specialize in migraine and headaches, or is he a general neuro?

Very happy that you've found someone who can really help you - or at least try his hardest!

Take care!
Carrie :)

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Aug 31st, 2005, 1:01am
G'Day Neal
Glad you found this site it's one great place operated by a bloke DJ who should be Knighted.

Looks like your Nuro is one of a kind, most dont know how to spell it let alone recognise it.

I'm up here in the North West of WA and suprising as it may seem I have a good GP who picked mine up and has helped me enormously.

I've got a referall to a Nuro in Perth in November to check there isn't any screws loose.

Six years is probably the extent of the apprenticeship so you is a Ozzi now Oi Oi Oi.

Be looking forward to reading further posts, Oh! and watch out for Aussie Brian I recon he could damage a crate of beer real easy.
PFD,s

Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by Frosty on Aug 31st, 2005, 1:03am
Hi Carrie,

The neuro I'm seeing seems to have a keen interest in CH and migraines. He want's to see my wife (eh?? steady on now Doctor!!) she suffers from 3-4 migraines a week.

I'll put his details down below in case anyone in VIC wants to contact him...

Dr Leslie Sedal
Ph: 03 9429 3440
148 Lennox Street, Richmond VIC 3121

He also operates out of St Vincent's Hospital in the city.

Title: Re: Anyone else in Australia?
Post by Lizzie2 on Aug 31st, 2005, 1:08am
Thanks Neal!

Looking forward to hearing all about the ideas he has and the things he'll be trying!!

G'nite (well....it's 2:10am here now - so for me, it's g'nite for a little less than 3 hours now!)

Carrie :)

Title: Re: Anyone else in Australia?
Post by Frosty on Aug 31st, 2005, 1:24am
Hey Barry

I'm an Aussie now? Sounds great to me!!!
Now this may well offend Brian...
As long as I don't have to drink VB I reckon I'll take up the Aussie flag. Sorry Brian - I'm guessing from your pic that you like the odd slab of VB now and then!
Must be something in it as even one can will give me a headache (not a CH thank god - unless I'm in cycle). Carlton Draught - no probs. And it's not because I'm not used to the beer - I did my practicing with the big boys back in the UK drinking pints of the warm stuff!!! :P

Pleased you've got a good GP Barry - fingers crossed for November.


Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 31st, 2005, 1:35am
And just to prove the extent of true Aussie mateship, Frosty, I'll drink your share for you.

Nope, no need to thank me, it's just typical of the hand of welcome we proffer to all prospective Aussies and yes, I accept cheques.

Otherwise, g'day and welcome to the nut-hut where all is serene and wonderful even if a certain people who shall remain nameless can infect innocent others by e-mail.  

I'll also refrain from mentioning the golden coldie I'm about to crack but it's for purely medicinal purposes. (Keeps the tigers away and has been working for years.)

Piles of smiles,

Brian up north.

Title: Re: Anyone else in Australia?
Post by Frosty on Aug 31st, 2005, 2:01am
Thanks Brian - you're great!!
Next time someone gets me some VB I'll send it your way :)

I did pick up on the new discovery... infectious emails. Mmm - I reckon I'll refer this one to my Neuro!

Oh, to have a cold one right now....
I'm still slogging it out at work!!

I need a holiday -  in fact I've only been back three weeks. I went up to Port Douglas, Mission Beach and Palm Cove for a two week break. I could quite easily live up there! Why did I pick Melbourne??

Title: Re: Anyone else in Australia?
Post by AussieBrian on Aug 31st, 2005, 2:23am
Strangest thing, eh?  Just one breed of beer.  I came across one in Syderny many years ago, and it may even have been Carlton Draught, couple of schooners and someone was winding a steel strap around the top of my head and slowly screwing it tight.  

Not another drop has done it to me before or since, and I've been among some crookies, too.  (Yes, Jacqs, that includes your bloody 'white death'.)

Anyway, I must away.  Just sneaked out of the shop for a few minutes and now I'm off to catch tonight's dinner. Weather's been terrible for weeks now and we've had to make do just muddies and cray but it looks better now.

In fact it looks so good out, I may just leave it out.

Back soon,

Brian.

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Sep 1st, 2005, 6:46pm
Oh yes the "white death" very enjoyable last night it was indeed. We actually got in a days fishing and brought home our bag limit of decent sized whiting and indulged for dinner  ;;D

Welcome to all the new guys and sorry we had to meet here but at least we're good for a laugh.

Our local brain and wit Brian, will without doubt keep you entertained even if he is drenched in that funny brown stuff [smiley=laugh.gif].

I can just imagine the meeting between Brian and Paul in December. I'll probably be down the bottom end of Western Oz by then so won't be able to join them bugger it!

Have a good one all,
Cheers,
Jacqs

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Sep 1st, 2005, 9:12pm
Hey Jacqs

When are you going to be down south of West Oz.

I will be down there in early february, my daughter is getting married in Dunsborough (Eagle Bay ) on Saturday 18th, if your still around that way then it would be great to catch up.

I reckon I would be safer with you than with Brian, although one day I should get brave and tackle a case of beer with him.

PFD's
Kind Regards to all
Barry

Title: Re: Anyone else in Australia?
Post by AussieBrian on Sep 1st, 2005, 10:00pm

on 09/01/05 at 21:12:22, Barry_T_Coles wrote:
... and tackle a case of beer with him.


It'll be my shout, too.

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Sep 2nd, 2005, 7:20pm
Barry I think you'd be sorry you said that as my partner, Steve's motto is "we're here because there's beer'  ;;D

Not exactly sure where we'll be in Feb either as we are just going where the mood takes us, sort of south when it's hot and more north when it's cold. We hope to start about the 16th Sept from here and head through the Simpson.

Cheers,
Jacqs

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Sep 5th, 2005, 10:44pm

on 09/02/05 at 19:20:43, Kiwiinoz58 wrote:
Barry I think you'd be sorry you said that as my partner, Steve's motto is "we're here because there's beer'  ;;D


Ausie Brian====>Barry<====Steve
Thats what I call being between a rock and a hard place, Oh well whatever.

Wont be postin for a few days, going bush to do some tree hugging and look out for Brian's best digeridoo breeding stock.

PFD's
Barry

Title: Re: Anyone else in Australia?
Post by paul_pero on Sep 7th, 2005, 7:36am
Gday all

Lizzie, The neuro I saw in Sydney is Dr Ronald Joffe Ph +61 2 94384599. Apparently my GP told me he is head honcho in Aust re headaches. I'll say he knew about Cluster HAs, so thats 1 up on most doctors. Seriously he was good and had knowledge of sufferings of CHers.

There is going to be a bottle of vodka to take care of too when Brians down here. :)

PF to you all

Paul

Title: Re: Anyone else in Australia?
Post by AussieBrian on Sep 7th, 2005, 8:27am

on 09/07/05 at 07:36:28, paul_pero wrote:
There is going to be a bottle of vodka to take care of too when Brians down here.

Beaut idea, Paul, but I've gotta admit to previous problems.

First time, I used a syringe to inject a bottle of vodka into half a dozen chilled oranges and ate the lot.  Went to sleep just near the public toilets in Darlinghurst and woke up with a really sore bottom.

The next time I used lemons.  Dozed off just next to the public toilets at Redfern station and, sure enough, my bottom was especially sore in the morning.  Purely in the interests of science I tried injecting chilled grapefruit, caught forty winks round the back of the public toilets on the Strand in Townsville, and couldn't sit down for a week!

The vodka's fine, mate, just easy on the mixer.

Title: Re: Anyone else in Australia?
Post by paul_pero on Sep 9th, 2005, 7:01am
MIXER?????

What are you talking about Brian? Who uses a mixer with vodka? Drink it the proper russian way. Chilled and straight.

CU
Paul

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Sep 11th, 2005, 3:33am
Brian,
Steve wanted to know if when you woke up from your vodka induced dreamtime, you had a handfull of change as well as a sore bottom. Could be the start of a lucrative career!

When we are up your way expect a call to you and Denny M if you are willing to give me your phone number.

Cheers, Jacqs [smiley=laugh.gif]

Title: Re: Anyone else in Australia?
Post by AussieBrian on Sep 11th, 2005, 8:39am

on 09/11/05 at 03:33:06, Kiwiinoz58 wrote:
Steve wanted to know if when you woke up you had a handfull of change. Could be the start of a lucrative career!

Steve's a pimp?  

Tell him watch out or I'll have my good friend Paul send him CH by fax.  He's been warned.

Title: Re: Anyone else in Australia?
Post by ben_uk on Sep 12th, 2005, 1:03pm
Ashes = back where they belong [smiley=laugh.gif]
Warno is a sheila
:o

Title: Re: Anyone else in Australia?
Post by AussieBrian on Sep 12th, 2005, 5:25pm

on 09/12/05 at 13:03:06, ben_uk wrote:
Ashes = back where they belong [smiley=laugh.gif]
Warno is a sheila
:o

Kindly note that the first half of the above statement is incorrect.

Title: Re: Anyone else in Australia?
Post by Filbert on Sep 12th, 2005, 6:14pm
Oi Aussie Brian, Paul Pero. Barry T, Dame Edna, Rolf Harris, Cathy Freeman, Harry Kewell, Skippy, Olivia Newton John, Phar Lap, Prof. Goadsby and that Crocodile Dundee bloke-your boys took one hell of a beating!
              Filb. ;) 8)

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Sep 12th, 2005, 6:18pm
Watch it Filb I'll set Brian on to ya, anyway it took you guys long enough ;;D


Title: Re: Anyone else in Australia?
Post by Filbert on Sep 12th, 2005, 6:22pm
Only 18 years KinOz! :D To be fair the kiwi umpire played a blinder! Filb.

Title: Re: Anyone else in Australia?
Post by Kiwiinoz58 on Sep 12th, 2005, 6:24pm
Hey Guys,

I can hardly believe it but I have been PF for over 2 weeks now. Didn't want to say anything till I was sure but it seems like I might be in remission. I stopped the Verap 3 weeks ago and have had no ill effects from doing so!
Wow, it sure is a fantastic feeling and who knows how long it will last but I'm enjoying it while it does.

I'm now waving my magic wand for heaps of PF time for everyone else.

Cheers,
Jacqs

Title: Re: Anyone else in Australia?
Post by AussieBrian on Sep 12th, 2005, 6:44pm
WOOO-HOOOOO!!!  And Filbert's welcome to the ashes if it means but one day of real life for CHeads world-wide.

We never like to speak too soon, of course, so I'd still stay wary of opening any attachments from Paul.

All the bloody best, mate, and we'll have one tonight to your health.

B & D.

Title: Re: Anyone else in Australia?
Post by Filbert on Sep 12th, 2005, 6:55pm
Yep  Brian you're right that is far more important than a sporting event and KinOz hope it continues! Filb.

Title: Re: Anyone else in Australia?
Post by DennyM on Sep 13th, 2005, 5:35am
Hey Jacqs

Wonderful News!!! I'm keeping fingers & toes crossed - not to mention praying like crazy that this remission is REAL for you! PF & Happy travels ahead.

Are you going to be able to keep in touch while you're on the road? It'd be great if we could meet up somewhere. We'll be on Dauan Is. at least until early Dec. and whether or not we come back here depends on a whole lot of things.

I'm really enjoying this part of the board. Don't contribute much, but happy to be entertained by all the Bullshit. (Brian has a PhD in it - and years of practical experience when he was a bush-guide in Far North Qld!)

A Phillipino lass I worked with some years ago, on meeting Brian for the first time, turned to me and said'"No wonder you don't hab telabishon at home. You don't need! You got Salty". Whoops - I've just divulged a past nickname. I may not be forgiven for this!

Anyway, Jacqs, please stay PF

Love & Blessings

Den

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Sep 14th, 2005, 6:16pm
Hey Jacqs

That's great news, lets hope it lasts forever.

Keep waving that wand i'm hanging out for a beer.

Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by TCSmiley on Sep 15th, 2005, 9:22pm
::) Hi all
I found this site about a month or two ago when my GP thought that I may have CHs.  Since then they now think its more like chronic paroxysmal hemicrania.(CPH)
I'm from Sydney or more perecisly Merrylands.  Its good to know there are those more close to home, good for the support not so that you suffer with CH.  I have been placed on Indocid caps and suppositries(YUK).  They take the edge off but dont leave me pain free.  I hope you dont mind me being here as I dont have CH but there are no support sites for CPH.  The headaches are a little similar but not as sever as CH from what I gather.  But they do come in clusters, up to 10 or so a day.  Its only been about 3-4 months since I first got them so I dont know if they will remain cronic or not as yet.  They are reducing in frequency and I now have had some days(2or3) pain free but they come back again like a bad smell.  Dont know whether O2 would work for me, it hasnt been brought up since the nerologist said its more like CPH.  Something to think about if they get worse I suppose.  Im no stranger to chronic illnesses as I have had Chronic fatigue syndrom for around 14 years.  I guess you have to keep your chin up or you will go mad.  Its good to see both Paul and Jacqs are pain free, I hope that remains for a long long time.  Well take care all.  Hope to get to know you better TCSmiley.......Tracey  ::)

Title: Re: Anyone else in Australia?
Post by AussieBrian on Sep 16th, 2005, 9:17pm
G'day Smiley, and welcome to the nut hut.  The even more betterer news is that Kate's come through the tunnel, too, and is out the other side looking forward to a proper life.

Sorry about being a little slow replying to you, but the hours I work are punishing and I go to an ex-mate's place of a Friday night for a cooling libation.  I'm crook, mate, fair dinkum crook.  Gunna die for sure.

If you're reading this, Blocky, you're barred for LIFE!!!

As for your little problem, Trace, you're probably in the best place ever to find out more about it.  I've seen it bandied about here a few times particularly as it's a CH mimic and lots of people are misdiagnosed and treated wrongly as a result.  It'll be well worth your time browsing around and asking questions, there's just so much information here and people who understand.

During the meanwhile, best of British and make sure you stay in touch with all of us except Paul aka Typhoid Mary.

Cheers and beers,

Brian up north.


Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Sep 18th, 2005, 8:11pm
Hi Smiley,Tracey

Welcome, good to see you got a Doc whose doing some looking rather than the usual take an asprin and a little lay down.

Hope things work out for you and keep in touch.

Kind Regards PFDs
Barry

Title: Re: Anyone else in Australia?
Post by AussieBrian on Sep 21st, 2005, 7:33pm
Hey Paul, you've been a bit quiet of late.  Everything OK?  

Hope so 'cos Christmas is getting closer and my beer goggles are starting to mist up.


Edited to add:   Kate, come back!  All is forgiven!!!

Title: Re: Anyone else in Australia?
Post by Kate in Oz on Sep 25th, 2005, 7:07am

on 09/21/05 at 19:33:23, AussieBrian wrote:


Edited to add:   Kate, come back!  All is forgiven!!!


Thanks Brian  ;)

Hi all, I've been watching the boards for a while... I'm a bit of a loner, a bit too shy to get involved and well hey - would I want to join a group that would have me ??

Just kiddin'    It's a crazy club .... but shit where would we be without it ???    

Wishin you all PFDAN and look forward to chatting with you...

Kate

Title: Re: Anyone else in Australia?
Post by Kate in Oz on Oct 8th, 2005, 7:45am

[smiley=curtain.gif]


Geez it's real quiet in here....

Taking this to mean every one is sleeping soundly and enjoying life.


Shhhhh     don't wake the beast !!!

:P

Title: Re: Anyone else in Australia?
Post by AussieBrian on Oct 8th, 2005, 7:49am

on 10/08/05 at 07:45:13, Kate in Oz wrote:
Shhhhh     don't wake the beast !!!

DON'T SAY THAT!!!

Uh oh. Too late.

Title: Re: Anyone else in Australia?
Post by Kate in Oz on Oct 8th, 2005, 7:59am

[smiley=ops.gif]     [smiley=nono.gif]


Title: Re: Anyone else in Australia?
Post by AussieBrian on Oct 8th, 2005, 8:15am
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!

Title: Re: Anyone else in Australia?
Post by LV on Oct 10th, 2005, 4:46pm
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

Title: Re: Anyone else in Australia?
Post by AussieBrian on Oct 12th, 2005, 3:27am
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.

Title: Re: Anyone else in Australia?
Post by paul_pero on Nov 8th, 2005, 5:19am
I'M Back.

Still PF  :D  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

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Nov 8th, 2005, 7:03pm
Hi Paul

Good to see you postin again and that you are still pain free.

Regards
Barry

Title: Re: Anyone else in Australia?
Post by LV on Nov 8th, 2005, 7:19pm
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

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Nov 9th, 2005, 10:07pm
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

Title: Re: Anyone else in Australia?
Post by AussieBrian on Nov 9th, 2005, 10:43pm
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.

Title: Re: Anyone else in Australia?
Post by paul_pero on Nov 17th, 2005, 4:47am
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. [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

Cheers

Paul


Title: Re: Anyone else in Australia?
Post by AussieBrian on Nov 17th, 2005, 6:15am
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.

Title: Re: Anyone else in Australia?
Post by paul_pero on Nov 24th, 2005, 6:53am
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

Title: Re: Anyone else in Australia?
Post by E-Double on Jan 6th, 2006, 2:57pm
Bumped for the new Aussies

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jan 6th, 2006, 5:51pm

on 01/06/06 at 14:57:50, E-Double wrote:
Bumped for the new Aussies

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.



Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Jan 7th, 2006, 9:21pm

on 01/06/06 at 17:51:48, 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.


Ditto
And if the front door's locked just walk round the back thats where you'le find me havin a beer.
Barry

Title: Re: Anyone else in Australia?
Post by AllanP on Jan 9th, 2006, 6:11am
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

Title: Re: Anyone else in Australia?
Post by John_Townsend on Jan 9th, 2006, 11:19am
G'Day All
Well got my oxygen, its the bloody best thing ever 5 - 10 mins and the bastards gone. You little ripper!!!!

John

Title: Re: Anyone else in Australia?
Post by Kate in Oz on Jan 10th, 2006, 4:22am
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

Title: Re: Anyone else in Australia?
Post by loki on Jan 10th, 2006, 5:35pm
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  :-/

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jan 10th, 2006, 8:08pm
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.

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Jan 12th, 2006, 3:39am
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

Title: Re: Anyone else in Australia?
Post by aussiegirl on Jan 13th, 2006, 7:18am
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

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jan 13th, 2006, 8:05am
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.



Title: Re: Anyone else in Australia?
Post by aussiegirl on Jan 13th, 2006, 10:12pm
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

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jan 13th, 2006, 11:58pm

on 01/13/06 at 22:12:08, aussiegirl wrote:
It is a great day for a swim so I might try to keep my boys busy in the pool.

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!

Title: Re: Anyone else in Australia?
Post by saintlexical on Jan 14th, 2006, 2:25am
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.

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jan 14th, 2006, 3:23am
What is this???  For so long I was the sole Aussie here, the lone representative of Clusterland in this far-flung corner of the Empire.  Suddenly they're popping out from behind every second gum tree!

G'day Saint, and welcome to the asylum.  Ten year's break, eh?  Let's hope this is a one-off and you've another ten years to celebrate.  

During the meanwhile it's really worth prowling around the board because there's just heaps of great info here and there's also no such thing as a silly question (though some of the answers get you thinking).  Also, you're perfectly welcome to PM any of us anytime if you're more comfortable talking privately.

Either way, good to meet ya and it's my shout.

Cheers and beers,

Brian way up north.

Title: Re: Anyone else in Australia?
Post by paul_pero on Jan 14th, 2006, 8:41am
Hi all,

Sorry to see all you new guys coming on board. Poor Brian doesn't feel special anymore. If only he could be the only one with it ;;D.

Welcome abaord anyway. Read as much as you can about our affliction so you can let the doctors know what  to do for you.

Glad you got the O2 John, I used it last year and it was pure magic. Just wished it wasn't a hassle to get. If it wasn't for this site, I'd still be crawling around in pain at nights when i'm in cycle.

Hi Loki, Jacqs lives in Ceduna. Is that close to Adelaide? She is PF at moment and not posting very often at the moment.

Aussiegirl, thanks for the great summary of how to get O2. Getting the letter from doctor can be the hard part.

Hope everyone had a merry CHristmas and happy new year.

Cheers (I'm having a couple tonight)
Paul

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Jan 15th, 2006, 8:02pm
Hi to all the new comers.

Just a quick one to say welcome and hallo, been a bit busy lately with a little wind problem and still getting things sorted out, bloody power problem blew my pc monitor the power pack for the car fridge and the microwave.

Well done Kathleen on sourcing o2 so quickly it can be a real drama, for those who may still be having problems Mr Happy has the stuff I wrote on getting o2 in OZ, here’s the link.
http://www.mushys.com/kiwi/


Until I can get some more time PFD’s to all.
Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jan 16th, 2006, 8:52pm
Oi, youse lot.  AllanP is talking about an Aussie get-together.  Wotcha reckon?

I'm committed here until the end of June and to get to Syderney (the obvious venue) would set me back around two grand in air-fares alone, which rules me out for the time being.  Regardless, I'll help in any other way I can.

Just thinking about that, it's a long time since I've been to the big smoke.  Who's got the pub there now?

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Jan 17th, 2006, 5:52am

on 01/16/06 at 20:52:02, AussieBrian wrote:
Oi, youse lot.  AllanP is talking about an Aussie get-together.  Wotcha reckon?


I saw that and was thinking the same myself and have been for quite some time.
But as Brian says the tyranny of distance for some of us puts us out for a while and my daughter is getting married in a months time so that will blow the budget and my holiday time for this year at least but none the less it’s a great idea and we should work on it.

Alice Springs?

Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by Kate in Oz on Jan 17th, 2006, 7:29am
Hey all,

That sounds like a great idea!  I too am financially challenged and start back at uni next week so not sure how I could fit it in timewise.... nevertheless I agree it's something we should put our minds to.    

Speaking of minds... I had my first ever 'classic' migrane yesterday.  Piece of piss - can I say that?  ;;D

Wishin PFDAN to you all,

Kate

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Jan 17th, 2006, 6:57pm

on 01/17/06 at 07:29:34, Kate in Oz wrote:
Hey all,

 Piece of piss - can I say that?  ;;D

Wishin PFDAN to you all,

Kate


You bet you can say that, I have problems recognising a hangover headache now. ;;D

Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jan 17th, 2006, 7:00pm

on 01/17/06 at 18:57:03, Barry_T_Coles wrote:
I have problems recognising a hangover headache now.


Stay drunk.

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Jan 17th, 2006, 7:22pm

on 01/17/06 at 19:00:05, AussieBrian wrote:
Stay drunk.


I'm trying to but work keeps interfering with my consumption rate. :P

Title: Re: Anyone else in Australia?
Post by paul_pero on Jan 18th, 2006, 4:24am
[smiley=me&mb.gif]

I'm doing my best!!

Paul

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jan 18th, 2006, 6:36am

on 01/17/06 at 07:29:34, Kate in Oz wrote:
I too am financially challenged and start back at uni next week...

Then you'd better start studying financial management!

If you'd invested $1.000 in One.tel, you'd now have $6.50 altogether.  A thousand in HIH you'd now have $7.20, or a grand in Enron you'd be good for almost AUD$9.43.

That same $1,000 invested in beer, you could have recycled the cans, and you'd now have more than $24.00 to put towards your airfare!!!!!

Either way, while what's-her-name and I couldn't possibly attend this side of June 30, we're perfectly happy to put up $500 cash to off-set other people's expenses.  

Allen's idea is a bloody corker and let's just go for it, so long as it happens in a pub.

Cheers and beers,

B & D.


Title: Re: Anyone else in Australia?
Post by maffumatt on Jan 18th, 2006, 4:32pm
you guys sound like fun, someday I'll have to come visit................

Title: Re: Anyone else in Australia?
Post by E-Double on Jan 18th, 2006, 4:56pm

on 01/18/06 at 16:32:23, maffumatt wrote:
you guys sound like fun, someday I'll have to come visit................


I'm with ya.
Kickin' a$$ down under!

DON"T FORGET TO TAKE PICTURES WHEN YOU MEET!!!!!!!!

Title: Re: Anyone else in Australia?
Post by aussiegirl on Jan 18th, 2006, 7:45pm
:D

Wherever we end up, I couldn't think of a better use for my Frequent Flyer Points.

Even if we are only able to do it late in the year it will give me a reason to save so I can afford the accommodation and a few shouts at the bar -  Maybe October or November??

PFDAN to you all
Kathleen

Title: Re: Anyone else in Australia?
Post by AussieBrian on Jan 20th, 2006, 8:12pm

on 01/18/06 at 19:45:12, aussiegirl wrote:
Wherever we end up, I couldn't think of a better use for my Frequent Flyer Points.

Not sure Barry's gunna need them.  This is his second blow in a fortnight and already it's up to Cat3.

http://www.bom.gov.au/products/IDW60281.shtml

All the best, mate, and get the beer on ice while you've got the chance.

Wishing you bestest always,

Brian & the team.

Title: Re: Anyone else in Australia?
Post by paul_pero on Jan 20th, 2006, 11:29pm
Sydney is good for me. But I will travel. If we can make it later in year will be good. Just make sure everyone isn't having a Kip10 at the time.

Paul

Title: Re: Anyone else in Australia?
Post by E-Double on Mar 17th, 2006, 12:16pm
Ya got a new Aussie brother in pain......so here's a bump!


E

Title: Re: Anyone else in Australia?
Post by seccsij on Mar 17th, 2006, 7:53pm
;;D Hi there!!!
I,ve had CH since I was 15 (1984) and was misdiagnosed for 10 years!  I lived in a small Victorian town and finally, a new Dr arrived from the city who recognised CH.  It still took another 10 years to get anyone to let me try O2!!!!! [smiley=huh.gif].  When my old Dr left town, I had to see anew one (AGAIN!) and he sympathised and told me to take Panadol :-X.   I was so angry and desperate that I went straight to the E.R. in a neighbouring town and collapsed in tears.  The Dr who treated me was CH knowledgable and puzzled as to why no other Dr had allowed me to try O2 in the past.  He gave it to me without pause and it was a miracle.  I have since moved to Sydney and havetold my new Dr of my need for O2 during CH.  I have had no objection.  It is on my file now but.... I have to go to the local E.R. to have it.  I will not geat it through my doctor any other way.  At least now, I know I CAN GET IT!!!!  8)
Don't ever give up trying.  For all our sakes as well as your own. :-*

Title: Re: Anyone else in Australia?
Post by AussieBrian on Mar 17th, 2006, 8:06pm
G'day seccy, and welcome aboard.  Panadol?!?  Like throwing boomarangs at the lightning.  Wonder he didn't reccommend a cup of tea and a nice lay down.  Bloody twits.

I'll get on to our friend Barry in Karatha because he's put together a beaut link on how to get O2 easy.

Happy daze,

Brian.


Edited to add:  Relax, Barry, and go back to hugging your trees.  I see our good mate Mr. Happy put the link up in another thread.  And EE, thanks as always for watching out for us poor colonials.

Fair dinkum I love this place.


Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Mar 18th, 2006, 5:19am
Hi Seccy, and welcome aboard.
Sad you had to find us but I assure you that you are in great company,what the people here dont know hasn't been thought of yet.
Here's a link to some info I gained when first sorting out o2 and it still works for me; best thing to do is not say what you are using for as some people in these gas places get freaky when you say you are using it for yourself, if asked say you are using it for transporting live fish.

http://mushys.com/kiwi

I am currently trying out a bubbler to stop the mouth from drying out when using the o2, it's just a slight modification to the one currently used.
I will get some pics of the set up and send them on to Mr Happy who no doubt will ad them to his web site string.

Cheers for now, keep us informed as how you are getting along and dont be scared to PM any time.
Kind Regards
Barry

Title: Re: Anyone else in Australia?
Post by DMC on Mar 21st, 2006, 9:42am
Hi I am new here... & in Australia.... :)

D

Title: Re: Anyone else in Australia?
Post by Dragonman on Mar 21st, 2006, 5:31pm
Hi to all you aussie battlers. My name is michael, 41 years young, living in Perth now, Clusterhead for 16 years and was lost and thought i was crazy till I found this site two years ago and now after some 730 odd PFDs the bastard is back...Hi Barry, you contacted me back then and I never replied as my life was upside down and falling apart, is took me 18 months to find my feet and settle again, r'ship finished ater 7 yrs and it was not easy for her as most of the time i had to ride through kip 10s in a cold shower till they passed and every two hours till the morning, headbanging pacing doing the dance with the devil..it was hell and i still cant believe i survived that onslaught for 14 yrs with nothing really to help relieve the pain, we sold our business, separated and I moved state back home to WA  blah blah as you all could understand, I ll love her forever for putting up with what she did but hey I understand and shes now happy, bub on the way... but lifes good for me now also and im happy apart from my CHs returning hence my wanting to be a true member of the family. Been reading ya posts and just have to say I love it all, and we are the toughest MFs on the planet.
10 days in now with shadows and realization this aint a headache as one would know it, 2 days of slow building kip 10s apon wakeing, I am using indicid 100mg supps, and caffergot sparingly and thats about it although it aint like the old days as it does help but im taking to much indicid to keep it at bay and thats what i did two years ago... i went to a chinese herbalist yesterday...so far so good with PF night and little meds so will chk the nxt few days out and keep you posted. About the O2, i think ive had it in ER but to no avail, although I was in the middle of kip8-10s both times and really wanted to throw the ecg monitor through the window to get the guys attention as you would all understand, my question is do you need to use O2 before the hit sets in and is it normally too late once hit is progressed, look fwd to hearing your answers to this as I need another solution to my med program now although it does work sometimes but a few slip by and like the first two kip 10 days I just went through, I didnt cope at all especcially the first one... Hope you can help..
Michael aka "the dragonman never giving up"

PS: Hi D welcome to da family

Title: Re: Anyone else in Australia?
Post by AussieBrian on Mar 21st, 2006, 6:15pm
A warm and hearty welcome to you both.  I can think of plenty of places I'd rather have met you (beer) but we take life as it's served.

Regarding the O2, just because it never worked the first couple of times counts for nothing.  There are different ways to use it and some are very effective for many people so it's worth trying again.

http://www.mushys.com/kiwi/

Otherwise it's simply a matter of deciding whether you're a victim or victor.  It's one hell of a fight but there's a lot to be said for coming out the winner.


Title: Re: Anyone else in Australia?
Post by Dragonman on Mar 21st, 2006, 7:14pm
Hi Brian,
thanks mate, yeah i been the victim for sure in the past but enoughs enough and no more running, wanted to also tell my story too but...im facing it head on as the Victor and looking for alternatives ie O2 as its widely talked about here..had a good night last night and this morning but the shock of its really back full throttle was hard to handle the other day especially after 2yrs PF and the severe intensity definately caught me off guard.
I have to agree theres nothing like living away from the big smoke and thrown a few coldies down, lived on a property few years back, last power, million miles from it all, was running cattle for 8 yrs there and loved every minute of it. Be sure to throw one down for me.
Cheers
Michael

Title: Re: Anyone else in Australia?
Post by Dragonman on Mar 21st, 2006, 8:16pm
Hi brian and all,
I am in the process of arranging an account at bocs WA, thanks ...
They told me to call the oxy care dept in Sydney first..
ph 1800050999 before they could hire.  
Oxy care want my Dr to fax their medical team directly
fax no1800624149 to verify my CH condition and include my name, address, phone no. and importantly the flow rate of oxygen needed per minute and the hours of use per day.
Any ideas of what to tell my DR ? ie flow rate and hourly usage ? this would be handy info before i call him.
The lady who I spoke to at oxy care has arranged my account already and is now waiting for the DRs letter to be recieved, she picked it was for CHs and said as soon as they recieve the letter she will phone and then bocs will deliver the first bottle to my home once i call them with the verification of my needs.
The C bottle holds 409 litres, is that enough ? or would it be worth getting a bigger size ?
Thanks everyone
Michael

Title: Re: Anyone else in Australia?
Post by Barry_T_Coles on Mar 21st, 2006, 11:02pm
Hi Michael
Welcome back, I do remember contacting you by Email when I first come on board and I understand when you’re hurting it’s sometimes difficult to respond even if you want to.
Geez had I know where you were I would have caught up as I have only just got back to Karratha 10/3/06 after spending 5 weeks in Perth on holidays & my daughters wedding.
As for the o2 it’s good you have got onto it I’m sure if you get the setup and flow rate right you should have a lot of success.

Firstly; well done for getting oxy care to react so quickly, I didn’t bother I just checked up on what was available from this site, once I had talked thing’s over with my GP and because I already had an account with BOC there wasn’t a problem with getting the gear or gas.
Let us know how you go with the bureaucracy and the cost; I purchased the flow gauge myself and got the non re-breather mask from the ER, the oxy gauge & regulator I already had for oxy/accet welding, I pay $44.00 / year rent on the “D” size bottle & $54.00 for a refill.
I approached HBF with trying to get benefits for the gear & they wouldn’t look at it
( damnd if I know why I pay top rates?).

Some Do’s & Don’ts: Make sure you get a non re-breather mask, that way you are sure of getting the best quality air.
Don’t use the strap on the mask; better still remove it completely, that way you remove the risk of falling asleep with the mask still on once you have aborted the hit and as you will understand we get little enough sleep and our body will take any opportunity to catch up on some badly needed ZZZ’s

I have mine set for a flow rate of 10 litres/ minute and the regulator set at WELD, I leave the settings alone and simply turn the main valve on when needed, that way as soon as you need to get on the gas there’s no mucking around just turn it on & start huffing.
As for the amount you will use that will depend on how often you need to get on the gas, but as a not so accurate gauge I emptied my first bottle after 12 months but I was over the cycle as I knew it and have only been hit at low Kip levels since ( it appears that I may have turned chronic as I am still shadowing and get hit as soon as I have a beer) I would guess that if you are going through a normal 8 – 12 week cycle you would go through 1 “D” size bottle in that time and possibly more, once again that will depend on how badly you are getting hit, only time will tell as we are all different in how this tricky little shit effects us.
A “C “size bottle is a handy size if you travel a lot as I do & I am looking at getting one myself as the D is a little bulky.

I will Email you with the details & pics of the bubbler I am using it will help greatly with stopping your mouth & throat from drying out.

Take this along with you to your GP and discuss the pro’s & con’s remembering that I’m not a doctor.

Best of luck
Barry

Title: Re: Anyone else in Australia?
Post by Dragonman on Mar 24th, 2006, 2:42pm
Hey everyone..
Hi Barry, thanks for you help and info, great to have some solid stuff to see what is going on with trials and real informative info, Have all the pricing and oxy care info, how to get, pricing etc and btw its a delivery service also. any one needs it now post a msg here or email me...whatever i can do ill help as I have O2 now and onlt took two days to set up and recieve... have one E size bottle and a C for work, things have been so bad Ive taken the weekend off as wasnt coping with the pain and work one bit...not that time off will change my present situation just needed the separation as its been a shock to the system.
I had four serious hits today three two hourly & ( and 11 am when trying to sleep after work and one at 5 which was when i was on the O2 and it creeped apon me and with in 15mins i was gone, shocking experience and it freeked me out...I have an ambo friend who is giving me some NB masks and clear flow so ill keep trying when i get them today, any help would be appreciated on what your experience has been and ??? diff ways to use would be appreciated...I will post info I have asap or if you have a fax and scanner barry let me know and ill send it too you..or anyone else for that matter otherwise ill get it on when able.
Thanks again all..going to sleep now..its 3.30am and will sleep upright and give it a go...any info on other meds or imitrex info or your positive use to help get time out from this would be appreciated as im using to much cafergot and indicid..needing other options asap...LYGs
Michael

Title: Re: Anyone else in Australia?
Post by AussieBrian on Mar 24th, 2006, 7:33pm
That's a lot of questions, Mike.  You a policeman?

Firstly, Immitrex is called Immigran here in God's Own and it's a terrific medication for many headache types.  In pill form it's not much use to us as it's very slow to kick in but many people have great results from both the nasal inhaler or as an injection.  It's horrifically expensive but there's apparently a trick and you can get two or three shots from the one needle.

Oxygen is another beauty.  For myself I have to be on it within about three milli-seconds of a hit beginning to get any real help as an abortive.  Any longer and it will perhaps stop things getting worse but that's about all. It's just a matter of playing around to find the recipe that works for you.

As to other medications, you'll quickly find that your pharmacist is your best friend and able to give you a lot more info than your doc.  Better info, too.

There's none of us more than a PM away,

Brian way up north.

Title: Re: Anyone else in Australia?
Post by Dragonman on Mar 24th, 2006, 8:31pm
Hey Brian,
Thanks Mate..appreciate the post.
Ive used the immigran nasal some yrs ago but wasnt to much help, but its about the timing with everything it seems. not too keen on jabbin me self but I have a good doc so illl have chat to him monday, hes a good guy whom I just have to phone and like with the O2 and meds I didnt have to see him for an appointment, he just faxed oxy care the other day when i called him and left a script at the front desk when my cycle started...wish there were more like him around. Had 5 hrs sleeping upright and woke with a shadow so hopped straight on the gas, I also have a hand held zapper (similar results to a tens machine) which releases the muscles..so got in early like you said brian an nipped it in the butt..feel good I got it before it got me !!! I did have good luck over east with a pharmacist so will go shiopping for good one here in the big smoke asap... thanks brian, certainly helps to blab it out as i did last night before hittin the hay and wake up to a response with support, I appreciate it mate and glad to have you lot on side and part of the team.
I had good luck from the owner of the business i run when I took this weekend of as i told him to chk out the CH site as in cycle it was too stressfulll at that time to phone and explain so i texted him and he was also supportive and i think really elieved my predicament which takes the pressure off as my sub managers are not so mature or understanding, had same results with co workers thinkin its only a headache but I also realise it is hard for them to get a grip on it..its a classic really and ill laugh even louder when my cycle finishes... Any enough blabbing from me..LYGs..stay well and lets keep kickin goals.
Cheers and beers to you Brian !!!
Michael



Title: Re: Anyone else in Australia?
Post by Kate in Oz on Mar 25th, 2006, 5:05am
Hi Michael,

I just wanted to drop a line and say hi - I see the fellas have got you sorted out, giving good advice and support.     Aint this place great  ;)

Just wondering have you tried Verapimil?  I'm in the middle of a cycle now - started taking the verapimil early cos it takes a while to kick in - and so far still only shadowing.  Have had a couple of head bangers but nothing like the excruciating (sp?) pain of a full blown hit.   Anyway just thought I'd mention it to you.  

Also a few years ago I was taking the cafergot - and taking too many and got outrageous amount of rebound headaches - so just watch out for that.  After a very long cycle (6months) Epilem (sp?) knocked it on the head in a matter of days.   Unfortunately didn't work the next cycle - but everything is worth a try when the beasty is lurking.

All the best to you, hope your cycle eases up real soon.

Kate

Title: Re: Anyone else in Australia?
Post by Dragonman on Mar 25th, 2006, 6:56am
Hi Kate,

Thanks for the info and yeah this place is the greatest, dont know how ive handled it in the past with out it.

Ill contact my Dr first thing monday about the Verapamil for preventitive and also look into the Epilem to knock it on the head. OMG how I would love that right now !!!

I did try Endep some years ago which worked but it was after 4-5 days when the drug reached a certain dose level which was awesome. Sadly the nxt cycle it didnt work, it was a drug used for epilepsy.

Im not able to work like this at the moment thats for sure and my job is stressfull enough with out the constant shadows and kip 10s ive been having, staff and patrons just wouldnt see me in the same light if they were to watch me dance with the Devil. Mmmm dont even want to go there LOL !!!

I will hold back on the cafergot and use the indicid supps which work well but im so over my way to keep the devil away. O2 seems to be helping also but early days with the big bottle.

Its great to have some other recommended options from you all.  ;;D  I do appreciate it as you would know and understand.

Thanks so much Kate..
Love ya heaps for caring

Michael

Title: Re: Anyone else in Australia?
Post by Dragonman on Mar 27th, 2006, 6:09am
Hi everyone,
Just LYG... O2 is aborting attacks [smiley=laugh.gif] which is the most awesome thing ever, really amazing feeling to have that on board now, between 10 - 15 litre per min depending where I am at, and have a spare C bottle for work so I hope I can get back this week. Will post info about Oxy care asap or please PM me if needed urgently or post, as it was very easy to obtain with your drs support. I am also having accupuncture and chinese herbs so I will let you know how that goes over the next week. My Doc has given me the Veramapil Kate and he wants me to have half a 240mg tab for a month then move on to a full tab per day, im feeling a little drowsy which I imagine will deminish with more use. He said no to the epilem but gave me endep which I had success with before but this time will have before sleep so see how I go with that also. Using Indicid 100mg for the pain which works well and the occasional cafergot so im ready now to face the beast full on with some confidence for the first time ever. I have found a good pharmicist nxt to my drs surgery and hes intreaged with the info I am producing and will look into the imigram shots as he didnt know that was possible. Just wanted to let you all know I appreciate your support and knowledge you have freely given from your big aussie hearts.
All the best with PFD for all of us.
Best Regards
Michael

Title: Re: Anyone else in Australia?
Post by AussieBrian on Mar 27th, 2006, 5:49pm
Goodonya, Michael, you give is all hope.  Just remember the golden thread that permeates our CH lives - nil carborundum illigitimus.

In English that means "Don't let the bastage grind you down" but we Aussies know the true translation is "Don't get sand in your vaseline".

Happy daze,

The Team.


Title: Re: Anyone else in Australia?
Post by seccsij on Mar 28th, 2006, 2:25pm
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?


I suffered for 18 years B4 I was "allowed" to have O2.  I came from a small town then and was believed to be med-dependant and neurotic!  Finally, in 2003, a new Dr arrived from the city and expressed surprise that I'd never been treated with O2.  He gave me a letter for the local ER.  I now live in Sydney and my new Dr has it on file that I'm to have O2 but..........If I want it, I'm to go to ER and not to my Dr.  I am in cycle now (wk4) and I've been coping alone because the usual waiting time at ER here is about 7 hours :'(.  I'd rather be at home in that condition for that amount of time so I'm battling through as best I can. :o
Good luck and I hope you live near a city ;;D

Title: Re: Anyone else in Australia?
Post by Dragonman on Mar 28th, 2006, 6:16pm
Hi Seccsij,

I understand your situation completely and feel your pain...

You will get the O2 tomorrow as it is a next day delivery service and the first delivery must be delivered to your door. Try and convince them you need it today and also have your Dr do the same when he faxes Oxy Care, rules are made to be broken especially for us CH sufferers so dont give up ;).

Here is the process of getting O2 into your home...

Ring OXY CARE AUST
PH:    1800050999
Tell them you are a Cluster Headache Sufferer and you want to set up an account for Medical Oxygen to be delivered to your home. They will tell you...

An account can be established once they recieve a faxed letter from your GP Doctor, stating your name and address, the flow rate and also the hours per day that the oxgen will be required to be used.
FAX:  1800624149 - (this is the direct fax line to the medical team there who will process your order and arrange the delivery

We are all using between 10 - 15 litres per minute depending on the severity of the HIT and the hours used per day is individual to all of us, anyway once you have the account set up you can order what you need as I have now done.

I have almost used a E size bottle in the last 7 days and have ordered two more E size to be delivered today so I dont run out and to cut down the cost of delivery.

Crazy huh, but anything to keep the beast away

The pricing is as follows:

400C - 490 litres    - $06.45 per month rental
Reg Flow meter      - $21.46 per month rental
D size Trolley          - $05.97  per month rental
Refill $19.92 - $31.36 per full cylinder depending on location plus the delivery and handling charges

400D - 1640 litres  - $09.09 per month rental
Reg Flow Meter      - $21.46 per month rental
C/D Size Trolley      - $05.97 per month rental
Refill $30.51 - $49.59 per full cylinder depending on location plus the delivery and handling charges

400E - 4100 litres  - $10.41 per month rental
Reg Flow Meter      - $21.46 per month rental
C/D Size Trolley     - $05.97 per month rental
Refill $48.31 - $85.51 per full cylinder depending on location plus the delivery and handling charges

Delivery- $36.11 (incl GST) for up to 5 items
Handling fee of $9.90 ( incl GST) depending where you live.

I dont know why the pricing per refill is like this as I am yet to recieve an invoice statment.

I used the canula breathing system they supplied to start with and just put it in my mouth instead of using my nose to breath, it works but can waste needed oxygen when breathing out, I have just recieved a non re-reather mask from an ambo friend so do your best to get one as they are the bees knees and the bag refills with O2 when you breath out, so no wastage occurs and you get the pure O2 with ease.

They also suggested for me to get an E size bottle to start and work it out from there.

You will then still have enough time to re-order on thursday if you feel you need more for the weekend.

You can also consider a concentrator if you may use for more than 4 hrs per day which can supply medical grade oxygen 24hrs a day 7 days a week if needed, just to let you know. Not sure on the price for that one.

Since I have had O2 im in front even though im having multiple hits..it has taken somewhat the fear out of the equasion.

Also try to get Verapamil from your Dr as a preventative, I also use Indocid supps for the pain which work very well.

Good Luck !!! I hope you can get this sorted quickly and easily.

Let us know how you manage.

PFDs for us all !!!
Michael  ;;D

Title: Re: Anyone else in Australia?
Post by seccsij on Apr 14th, 2006, 7:59pm
I'm in week 6 now and this time I've taken the usual maximum daily doses of aspro, panafen and nurofen for the little demons (kip 4-5) and Cafergot with mersyndol for the kip 8-10's.
Have now tried oxygenated water (yuk), kudzu powder, and melatonin.

This last week, I ran out of Cafergot (I am on a pension and it's $21 per script) and took Anagraine for a couple of days which helped me catch up on a few zzzzz's (a few). Still woke up to the beast but slept for 4 hrs in between instead of 2! ;;D

I have been taking 15 mg Melatonin 1/2 hr before bed and 2 sprays of Beconase nasal spray in the mornings for the last 7 days and, although history tells me I am nearing the end of this Cluster, Weeks 5 - 9 are usually the MOST painful.  This is not the case at the mo. :D
My shadows are not as obvious (they are usually more like an all day kip2). (At the mo they are too mild to scale.) ;)

In the past when I find something that works, it usually doesn't work the next time but I'm staying poisitive anyway.  I am learning to breathe more deeply as well which is helping a little too.

I would never have known about Melatonin if not for this great group of people.  Thank You all and I hope we are all PF soon!!!!!!!!!!!!!!!!!!!!

Title: Re: Anyone else in Australia?
Post by AussieBrian on Apr 15th, 2006, 12:37am

on 04/14/06 at 19:59:40, seccsij wrote:
In the past when I find something that works, it usually doesn't work the next time but I'm staying poisitive anyway.

I still reckon staying positive is the most important part of the whole shebang.  Also on the up-side, what didn't work previously might just turn out to be a saviour this time round.





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