Australian newbie asking advice!

[Ockrocket]

CPAP manufacturers (including Resmed, which are made in Australia) don't allow US suppliers to sell to Australia.. though it seems there are ways around it, but then you have no warranty cover or support for the machine here in Oz..

I have had excellent dealings with a CPAP supplier here in Sydney (Westmead) with the rental test machine, and subsequent purchase of my own Dreamstation Auto unit.
Even though my specialist recommended that a fixed pressure unit was sufficient for my needs I opted to pay the extra for the auto, that way I can easily test how things are going without having to pay out for a rental unit every 12 months or so.
I will be doing that in conjunction with my specialist, even though he may not think I need checking that often (we got off to a rough start, but now he listens to me instead of just "talking at me")

My whole testing and specialist appointments were done under Medicare, though I did have to pay the gap for any specialists that charged over the scheduled fee. 
The machine was paid for out of my own pocket, I don't think I would qualify for any funding from anywhere else regarding purchase at this stage.

The clinic gave me a very substantial discount in the end on the purchase price, though still not as cheap as USA prices.

[JamesW]

I would also advise you to avoid Resmed machines if you do any camping away from mains power as they require 24v whereas most other machines with 12v power cords use 12v and hence less power use, very important if running off batteries.

I have a Resmed Airsense 10 Auto and camp with it regularly. I purchased the Resmed 12v/12v transformer and it just plugs into any 12v cigarette lighter type outlet. I also have  an Anderson to 12v cigarette adaptor. Nothing too hard about using a Resmed machine off 12v power at all. I turn off the humidifier, but have water in it,  and heated tubing to cut down on power use. Never had a problem out bush.

James

[Shorty]

I wasn't saying they don't work on 12v they just use more power than a machine that uses 12v direct. A machine that uses 12v directly is often able to keep the humidifier running as well and not use any more power than the Resmed do without the humidifier.

[Wellslept]

Hi all,

So far, due to work and other commitments I have stayed on course to take my appointment on the 17th of this upcoming month instead of trying to fast track.

I am very tempted to purchase a machine pre diagnosis but I have become worried that I might need a BiPAP machine instead of a normal CPAP machine and thus waste money.

I will call tomorrow to see if there is any chance of a cancellation list or even check the Google for sleep clinics with attendant sleep physicians in the North Shore to see what opportunies exist to get into the system faster.

It's weird - I know nothing about this condition but I'm scared that unless I get some pro sleep doctor, I might miss something. I'm especially worried that I get into some ResSleep style franchise clinic, I'll just receive a lower standard of care or diagnosis. Am I being overly pedantic? I am tempted to think that the whole thing is a racket and it doesn't matter who you go to, just make sure you get a proper sleep study and diagnosis then get your machine and work it out from there. 

Problem is that I'm impatient waiting, but shy to fast track because I'm worried I'll get a dud doctor that just puts me on whatever. From reading these forums, it seems a lot of the tuning is self directed and the sleep doctor just gets you in the ballpark.

I just don't know enough yet to get a machine. So here I lay awake, counting off the days till my appointment. Till then, sleeping on my side and reading this forum.

Great to hear about the different experiences everyone had getting diagnosed. There appears to be no one path.

[swaziman]

It looks like you are doing all the right things. Keep abreast of items on this forum that interest you as the knowledge shared by the forum contributors is amazing. Short of you actually needing a bi-pressure machine, which are uncommon in my experience in Australia, the two best auto machines on the market by far are the Resmed Airsense 10 Autoset or the Philips Respironics Dreamstation Auto. I have used both but now recommend only the Dreamstation. My advice is not to buy one in Australia. They are far cheaper in the US and not difficult to source and import.
The other important consideration you seem not to have touched upon is the mask. The benefit with renting a machine is that you can try out various masks until you find one that works for you. And then my advice is to stick with it, again buying your supplies from the US.

[Wellslept]

Thank you for the friendly feedback Swaziman,

I'm really grateful to know I am not alone here with dealing with these kind of things. I am grateful that this board with approachable members exist to provide a forum to share information, experiences and a sense of community, and also - an avenue to help guide newbies like me that aren't sure where they stand and what to expect.

Hmmm. I think you're right, I haven't realised that I will need to find a comfortable mask. i suppose i don't want to get too far ahead of myself yet, i have decided that the key thing is getting a proper sleep study asap ... for which i am counting down the days .... 17 days just to get an initial consult with a sleep gp seems like a long time, but i have read that other people have waited far longer, so i am trying to be patient. 

i have been frequenting this board nearly every day and learning a lot about this condition. 

+ I am definitely buying a machine from the States, I know which supplier to use thanks to this board.
+ I have ordered a Pulse Oximeter, so I have an extra tool to scientifically measure one aspect of my sleep (slow boat from China)
+ I have resolved to get a Philips or a Resmed as advised above
+ I am keen (impatient actually) to get a proper sleep study done. First, I have to get my foot in the door at the sleep doctor's office to get a referral. Counting the days ...
+ I am copying all the relevant information I read on this board into a Word document for later reference.
+ Have made a physical folder

In fact, this morning I put all my sleep symptoms on paper (Waking up in a stupor every morning, needing coffee just to function etc, low energy, snore complaints from family etc etc ....), just so that when i see my sleep doctor, I can be organised, concise, and clear about my symptoms, my sleep history, and my questions.

I suppose I don't want to be annoyingly over-read, otherwise they may think I am 'self-diagnosed', which seems to worry doctors. I'll just patiently list my problem and simply request a sleep study. Get the sleep study scheduled and then done. Confirm I have a OSA (or not? ... CSA? who knows ... hopefully just garden variety OSA)

Wish I had done this 10 years ago. I hate the struggle of waking up every morning feeling like I am enduring a hangover which requires me to sit in a chair for 15 minutes just to remember where I am. Until recently, I have been so frustrated trying to figure out what is wrong with me that unlike others, ever since I have been a young adult - I have let myself and others down because I cannot get up in the morning without extreme effort, or if I do get up, I am dopey and mentally slow for a few hours, extremely so (forgetting simple things, being clumsy with tools, excessive daydreaming or afternoon sleepiness etc).

It might answer why I can sleep for 12 hours on weekends, and yet never feel rested. This sleep dysfunction that I have been enduring has not had a good affect on my life, my career, and I have had enough of being known in my family as 'Captain Snooze/Snore" (haha).

I didn't even really realise i had this problem. I felt/feel like a car with an unreliable battery that doesn't efficiently charge.

Anyhow, enough of my problems.

I am just trying to be grateful that I have found out about this now - I hope this is the answer - somewhere in this process. It would explain a lot of things, and if it is the reason for my sleep dysfunction - it leads the way to an answer.

Did I say I was counting down the days?

Thank you all for your time and guidance shared. I will update when I make some real progress.

[DeepBreathing]

I am keen (impatient actually) to get a proper sleep study done. First, I have to get my foot in the door at the sleep doctor's office to get a referral. Counting the days ...

You know, it makes more sense to get the sleep test before seeing the specialist. (A GP can write the referral). As it is, you will go to the specialist, recite your symptoms. He will say "it sounds like sleep apnea - better have a test then come back and see me". And another three months goes by. If you get the test first, he will have all the relevant data the first time you meet him and should be in a position to make an immediate recommendation as to treatment. You will save one consultation and several months.

[DeepBreathing]

If I may, I'd like to put in a word about expectations. You've had apnea for a long time, and it's no doubt done a bit of damage to your body. It might take a while to undo that damage.

Some people have a miraculous first night and feel wonderful afterwards. And for many, there is the wonderful first night, followed by a rapid decline back to the horrible reality. And some just have a terrible experience and can't cope at all. But for most of us it's a journey, often with a step or two backwards for every step forwards. These are all potential outcomes, and I don't like to see people being sold unrealistic expectations.

Learning to breathe in a new way, with a plastic alien strapped to your face, is no fun. But it's something that has to be done to get the long term benefits. If you are one of the lucky ones who get instant benefit, that's great. But if not, stick with it, in the knowledge that it does get better with time and your body will eventually thank you.

And of course Apnea Board is always here to lend a helping hand.

[Wellslept]

Hi Deepbreathing,

Well noted. I have to keep my expectations grounded and on reflection, I can see that I have to treat this as a process, not a 'quick fix'. 

I am also a bit sombre about the fact that i have had this for a long time, so that means my body needs time to recover from a very long sleep debt. That's my theory anyhow.

I take that on board too and I'll strengthen my resolve to keep at it during the adjustment phase.

Also - that's another brilliant idea, I think the other posters were advising along this direction somewhat but you articulated what I was worried about. I'm just going to be interviewed so that I confirm I have a problem, which will require an answer that will require another waiting period, which will delay things further. Much better to come in with some information to push things further so I can get some real value out of the consultation instead of being told that I have a problem that needs to be looked at in the future.

I really think that might help - I'll make sure to schedule and see my GP this week and get:
(1) a general blood test
(2) a referral for a sleep test

I will probably ask my GP for a referral for a sleep test, look for a sleep test provider that is local and has an opening, (also ask the sleep centres if they have an attendant sleep physician who has an opening to analyse my results more sooner), get the sleep test done and get results. Use results to get that sleep centre to provide a more tested conclusion to my future sleep doctor, whether that is the original booking or the one that they recommend or have in-house. Who knows, I might even cancel this city based specialist. A competent sleep doctor shouldn't be the preserve of city based specialists in my humble opinion. Well. I hope. I have a healthy distrust of city based professionals that work for big practices.

This might expedite things a bit, in any case - it gives me something to do so that instead of being interviewed, I can bring something to look at and hopefully get some valuable analysis even if I don't get a comprehensive answer.

Current process was: dentist casual referal >>> specialist sleep doctor (practice has GP inhouse to official refer me on spot just prior)

Proposed new process: >>>> See my normal GP >>> Get Sleep Test Referral >>> Call around for vacancy for Sleep Test >>>> Sleep Test Result >>> Enquire if particular sleep centre has related Sleep Dr Specialist to assess results with opening, or if not, see Specialist above with Sleep Results.

That's really pro-active and something I can take responsibility for. 

I'm just wondering if my GP can refer me for a full CPAP sleep test, or if only a specialist can do that. I'll find out on Monday. I have read that Peninsula Sleep Centre in Frenchs Forest will only do a full sleep test if a specialist orders it ... hmmm. But the soundness of this plan still holds.

Will do! Thanks again Deep!

[holden4th]

Hello Wellslept. While my cardiologist picked up my possible OSA it was my GP who organised the sleep study and it was bulk billed. Just go and talk to your GP, describe your symptoms and he/she can send you to a bulk billed sleep centre. It's that simple.