CPAP machines - a camping problem....

Submitted: Sunday, Jun 18, 2006 at 11:15
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I'm discovering that what I have been told by a few other gold card carrying Veterans is true, every time I go to a Dr, ( this time for a dog bite) they find new & exciting ways of getting payment via my gold card. I have PTSD & as a consequence I have very disturbed sleep so I got sent to a sleep lab. On arrival I was given a high pitched sales speal re CPAP machines, I explained that maybe I would need one once diagnosed...

Naturally, I have sleep apnoea though I was asleep for only 145 mins during the night...They woke me as I was just dozing off at 5 am to tell me this....

Anyway I just read an article re sleep apnoea & CPAP machines, I am not amused. In the ACT if you have a CPAP you are legally obliged to advise ACTEW (electricity) so that they can do two things, the first given great publicity is that you get a rebate to run the machine currently around $12 a quarter. Second thing is that if there is a power outage and your machine stops they can phone you and wake you (& presumably the entire household) untill the power is restored!!!!. CPAP machines are getting heaps of publicity now, I didn't realise how dangerous this is, I won't be able to travel unless I can be assured of a 240 volt supply, I will not be allowed to sleep on busses, trains or aircraft, lest I cark it & my spouse, rellies etc can sue for compensation because I could not use my machine...Also apparently your body gets used to the machine and if it does fail during the night you can easily die.

So this is where my query comes in. How do others cope when away from mains supply? Do they make CPAP machines with a UPS in built? Is this all uban myth or are all males who snore in dire need of a CPAP machine?
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Reply By: guzzi - Sunday, Jun 18, 2006 at 11:54

Sunday, Jun 18, 2006 at 11:54
Faulty,
have a bex and a good lie down :)), CPAP is not the end of life as you know it, well, it is actually youll feel a lot better once you get used to it. I quite often pull it off in the middle of the night and to date Ive still woken up.
You wont die if you dont use it every day,(Ill qualify that by saying unless you stop breathing permanently) unless the wife or those within ear shot of your snoreing turn you off first.
As you have no doubt been told sleep apenea is the bodys defence against low oxygen levels in the blood, you stop breathing, oxygen levels drop and the brain wakes you up to recommense breathing, this is what happens to me 46 times an hour, no wonder you feel tired after a few years of this, you simply dont get any REM sleep.
As too camping, im currently in the same boat as the CPAP I have is 240V and draws 65W at 240 V, makes your eyes bulge once you work that out in 12V or the battery size required to run an inverter. There are a few 12V CPAP machines available, do a search on google and they will pop up, check them out before you buy. ( I didnt, hence my current problem)
I had a similar feeling to you, that this is just another "manufactured "disease to remove a large sum of money from the afflicted, but after being on a CPAP for the last 6 months, I will admit they do improve your REM sleep and I do feel a lot less tired and have a bit more energy, so does the wife as Im not snoreing at 100 DB in her left ear anymore.
Currently I cope on camping trips of 2 to 5 days without CPAP and the wife readjusts to snoreing, cant tell if Im not sleeping as I keep wakeing up for kids , storms, tarps blowing down, airbed deflateing, toilet dashes etc etc.
A $12 a quarter rebate is a nice touch Id apply for it and take the phone off the hook at night.
I havent heard about the sleep on busses, aircraft or trains, the 12v model may help there as well perhaps.

Pete
AnswerID: 179047

Reply By: itsdave - Sunday, Jun 18, 2006 at 12:05

Sunday, Jun 18, 2006 at 12:05
Camping is not a drama with a cpap. I've been using one now for a couple of years and run it though an inverter. I use a 105 amp/hr agm battery and this gets me 3 nights sleep. I actualy find nowadays it's harder for me to sleep without using the machine.

cheers Dave
AnswerID: 179049

Follow Up By: guzzi - Sunday, Jun 18, 2006 at 14:50

Sunday, Jun 18, 2006 at 14:50
Which machine?
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Follow Up By: itsdave - Sunday, Jun 18, 2006 at 21:39

Sunday, Jun 18, 2006 at 21:39
Resmed auto spirit S7
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Reply By: HJ60-2H - Sunday, Jun 18, 2006 at 15:45

Sunday, Jun 18, 2006 at 15:45
Let me help a little here. The company I work for supplies many of these machines via hospitals and shops Australia wide,(interst declared).

Low oxygen does not wake you up and get you breathing again as suggested in a previous post. It is your carbon dioxide (CO2) level that is detected in your brain that does this. As you stop breathing your CO2 rises as you dont breath out to get rid of it. Eventually your brain triggers you to start breathing again. The risk is that during this time you suffer from low oxygen to the brain, which results in disturbed sleep and in extreme cases an injury to the brain.

There are a wide range of CPAP devices that can help. The devices we supply have an input for 12VDC so you can run them straight off your car battery. They only draw and amp or so hence will run all night off a fairly small battery. Theses devices are also listed as approved devices with Qantas and all the other major international and domestic airlines and you can use them in flight.

There is lots of good accurate information out there if you need it. Your treating Dr is the best spot to start.
AnswerID: 179071

Follow Up By: Mr Fawlty - Sunday, Jun 18, 2006 at 16:28

Sunday, Jun 18, 2006 at 16:28
HJ60... well done, Ok you have a declared interest so how about giving yourself a plug? Let me know the who, what, where, when & why so that I can ask Vets affairs to organise one for me. I do have some control over what machine I get. Interesting that these should all be Ok with international carriers as well as I do want to travel overseas in the future (Bi Centenary of the Rainhill Trials in 2029, I'll only be 90 odd) Clearly, I have yet again, been missled by those with a vested interest who don't want to share any liability...

I have little faith in the Dr running the sleep lab, his only concern seems to be that he gets his cut on the sale of the machine... Hasn't actually seen me just sent bills to Vets affairs for "consultations".... dodgy if you ask me. There are other solutions as well, a mate had his soft palate lasered to stop snoring and collapse of the soft tissue into his intake manifold but this outfit dosen't want to know about "alternatives"...
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Follow Up By: HJ60-2H - Sunday, Jun 18, 2006 at 18:37

Sunday, Jun 18, 2006 at 18:37
Products are found at www.respironics.com.

If you tell me what City/State you are in I will let you know the best number to ring and talk to one of our Sleep Easy Centres
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Follow Up By: Member - Leigh (Vic) - Sunday, Jun 18, 2006 at 19:07

Sunday, Jun 18, 2006 at 19:07
Hey HJ60-2H...you wanna make friends?? LOL!! It is nearly always a bank loan whenever I need anything to do with CPAP.
My purchasing criteria from the start was the machine had to be capable of direct 12V operation..no inverters or other devices to get in the way or suck power etc etc. Choices were limited and I could only find one unit at the time so I bought it (Repironics RemStar) but I think there may be others available. Mr Fawlty, do a search on this site as there have been plenty of other comments over the years. Good luck with your choice and have a good night sleep.....without your mates whinging about the noise. Cheers
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Follow Up By: Mr Fawlty - Sunday, Jun 18, 2006 at 20:02

Sunday, Jun 18, 2006 at 20:02
I'm in Canberra located strangley enough in the ACT.....Will check out the site and "prepare a specification"
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Follow Up By: HJ60-2H - Monday, Jun 19, 2006 at 10:25

Monday, Jun 19, 2006 at 10:25
Give our NSW manger, Christian a call on 0418 219 327.
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Reply By: Peter 2 - Sunday, Jun 18, 2006 at 17:26

Sunday, Jun 18, 2006 at 17:26
A friend that travels with us frequently on long trips has one that runs on 12v, the first trip with it he got one of those Waeco Thumper battery thingo's, the thumper bleep itself after a few days and he runs it off the auxilary battery ever since.
Peter
1996 Oka Motorhome

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AnswerID: 179082

Reply By: Member - JohnR (Vic)&Moses - Sunday, Jun 18, 2006 at 21:20

Sunday, Jun 18, 2006 at 21:20
Mr F, I have been using an Aussie made one for over a year and I found it easier to be able to talk to a user on EO about camping with it before I bought my Resmed Autoset Spririt. I like has been mentioned above find it more difficult to sleep without it than with it.

I have an additional battery (two addition to the start battery) and have little problem lasting the night but sleep a lot less now anyway and seldom need to nap. The specialist said I would need to lose weight to prison camp proportions to beat the apnoea, so this is best option. The records the machine keeps means I have verification that I keep my schedules.

I got a 300w modified sine wave inverter but that has given problems if I haven't got the power sorted to it.

I have my mobile number at the rig pic if you find a need to call as I found it much easier to do it after and actually persued the changes to my life. It has improved my waking hours immensley. I think the new Resmed divices can go on a special 12v system as loing as you buy the power supply, but may be noisier beeing a smaller fan in them.
Cheers,
Who?
John

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AnswerID: 179122

Reply By: herkman - Monday, Jun 19, 2006 at 08:50

Monday, Jun 19, 2006 at 08:50
I too suffer from PTSD, and sleep problems, the two issues are hardly like to make good bed mates.

I have just been issued by DVA a variable pressure machine, a Resmed S7. This machine is not normally issued by DVA without a strong specialist report.

You have to find a specialist who has interest in your problems, other wise you end up with a machine, and DVA with a lot of bills and you are still trying to get sorted out. If you have no faith in the doctor, find another one. The guy I went to in Bunbury WA, was really a great guy. The sleep test should reveal amongst other things, how many sleep interuptions you get an hour, in my case it was 35.

My doctor said until you are happy, we will not ask DVA for any machine, and then proceeded for two weeks at a time, to trial three different machines. It became very apparent that even the lowest quality machine improved the situation greatly, and the S7 moved the sleep interuptions down to .4 per hour.

It also moved the oxygen levels up to 95%, they had been sitting on 91% when we started.

The S7 machine also can run on 12 volts, you need to buy a converter from RESMED, which I believe is not very much. DVA will not however pay for that.

My doctor would not talk about machines, until after the sleep test was done, and stated we are going to get this right, before we settle on a machine for you.

If you are unhappy with your experience, being very gentle with your approach, talk to DVA and express your concerns, they are just as concerned as you are, that you are getting good service, and will change the specialist if required.

This is a long and involved subject, and as I am a Pensions Officer, I would be pleased to talk to you in greater detial, if you think I can help, you can get me on 08 97611262.

I too suspect there are big profits in these machines, and I suspect it is a growth industry, and of course there are always people, who will milk it for what it is worth. I would not like you to be in that situation, because in WA at least the few sleep clinics that are here, appear to be very dedicated.

One of my clients over here was really getting the run around, he was a WW2 vet and was really nearly dead, at the same time as going for a review of his pension, DVA came to the same conclusion as I had that the Doctor was just waiting for him to die. DVA sent a case officer over to see him, changed Doctor and treatment, and now he is very much better.

You as a Gold Card holder, do not have to put up with poor service, and you will find that DVA will quickly take interest, if you their client think the wrong thing is being done.

Snoring it not always a sign that you need a CPAP machine, only a sleep test can reveal that.

Another good test is that you tire easely, and can wake feeling just as buggered as when you went to bed. This can be very dangerious, especially when driving.

To my knowledge most better machines will run on 12 volt, but you need a converter. However I do not know the current draw.

Here in WA they do not clasify CPAP machines as a life support system, but most machines I believe can give a warning buz, if there are many malfuntions.

With every best wish

Regards

Col
AnswerID: 179152

Reply By: Member - Vincent A M (NSW) - Monday, Jun 19, 2006 at 12:43

Monday, Jun 19, 2006 at 12:43
when flying ,at booking tell them on most quatas flights they have several seats avalible just for this
AnswerID: 179197

Reply By: Mr Fawlty - Monday, Jun 19, 2006 at 13:45

Monday, Jun 19, 2006 at 13:45
Interesting Col. Just actually had DVA on the phone querieing a couple of bills the doc sent to them...
Looks like they are going to arrange a second opinion, means sending me to Sydney. This bloke seems only interested in getting them to buy me a machine of the brand he sells i.e. Fisher & Paykel who don't, it would apear, have 12 volt machines. This guy was shocked apparently after telling me that 12 volt machines were not made to be corrected...
Anyway, I'm happy as DVA tells me it's a mutual decision, they will purchase a machine of my choosing so long as it is to the same medical specs as Dr asks. The "Lifestyle" (12vdc) issue is another matter open to discussion & apparently My shrink can (and probably will) interdict here on my behalf stating in medical jargon that a 240v machine will impose even more unnecessary restraints on my "lifestyle".
I wonder can he prescribe a contingent of 99 virgins to accompany me with my CPAP machine, just, you realise to ensure it's correct function.
Mate many thanks for your post...
AnswerID: 179217

Reply By: Jodi - Monday, Jun 19, 2006 at 14:10

Monday, Jun 19, 2006 at 14:10
Snoring related - not quite CPAP. Rapidly approaching 30 and have developed a rather loud rumbly snore (according to the other half). I eventually questioned the doc about it in order to restore partner's health (wasn't bothering me at all). After sleep studies which were a nightmare, the most uncomforatble night I have ever spent ANYWHERE they deciced I too have sleep apneoa and it will apparently be fixed by an op that i am now on the waiting list for (it seems I broke my nose when younger and it's only just been picked up).

Recently we went camping over the long weekend. My snoring kept the entire camp awake, along with the dog which growled every time I snored out. So now I have a dog after me and the threat of being smothered by my partners pillow.

Cannot wait for the operation though. It seems that SA affects so many things and my tiredness etc is not normal and something I just have to get used to.
AnswerID: 179227

Follow Up By: Mr Fawlty - Monday, Jun 19, 2006 at 19:14

Monday, Jun 19, 2006 at 19:14
Tell me about it...how the hell you are expected to sleep with all the cabling, a strange bed, weird sleep hours & in my case next to a public hallway where all night long people were slamming doors and talking....I slept for just over 2 hours in the whole evening... Then got up at 5 am & went home to sleep...
Im dreading more such pleasant "sleep overs"....
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Follow Up By: Jodi - Monday, Jun 19, 2006 at 21:24

Monday, Jun 19, 2006 at 21:24
I agree. I kept getting 'woken' by the nurse so she could put that thing back on my face that sticks up your nose to measure breathing - they ended up using heavy duty tape to hold it on. I got officially just on 100 minutes proper sleep for the night. Not to mention the times I got woken to get the wires from around my neck because I kept tossing and turning. Not planning on doing it again any time soon. Just getting the op then hoping that partner gets his life back. As my ENT surgeon said, "Aaaah, the price of love. You are about to have your nose broken so somebody else can get a good night's sleep!!!". That about sums it up.
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Reply By: herkman - Monday, Jun 19, 2006 at 16:38

Monday, Jun 19, 2006 at 16:38
Mr F the situation with CPAP machines, that you really need to try them for at least a week, before you decide which is the right one for you.

F & P did not suit me, but the S7 RESMED did, and in addition to be able to run on 12 volts, also has the advantageb that you do not need to take your machine back to the clinic to be downloaded. You insert this little card in the back, put it in the post to your clinic, and it will update their records, and when it comes back, if the machine needs any changes, it will do it automatically for you.

THE IMPORTANT thing is, you do not have to put up with poor service, and being steamrolled into something that is not right.

DVA will take your side, and will insist that you get the maximum benefit, they will change the doctor if so required.

The sooner that some of these doctors relise that DVA is not a cow to be milked, the better for us all.

Regards

Col
AnswerID: 179264

Follow Up By: Mr Fawlty - Tuesday, Jun 20, 2006 at 09:48

Tuesday, Jun 20, 2006 at 09:48
All sorted. Spoken to the NSW Respironics guy, gave me the lowdown and sending details on his machines that the Dr says don't exist. Yes it's 12 VDC, Airline approved, heated humidifier & has the distinct advantage that it communicates with the Dr's machines to keep them updated on your progress which means I won't have to go to the Dr's place for sleepovers....I can also get software for my laptop to do my own sleep diagnoses...... Mind boggling

Guys, I cant thank you all enough, you've all done very well!

Best of luck with the Op Jodi, perhaps a pic of your new shnoz when you get it? The things you young people do for love, still when I was young I was nutered for love & regretted it ever since.
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Reply By: herkman - Tuesday, Jun 20, 2006 at 10:33

Tuesday, Jun 20, 2006 at 10:33
I presume that you know that DVA will at least part pay for a machine.

Your post was not to clear on that fact

Regards

Col
AnswerID: 179421

Follow Up By: Mr Fawlty - Tuesday, Jun 20, 2006 at 14:25

Tuesday, Jun 20, 2006 at 14:25
Yes I do realise that. To get a machine that is more than basic though I have to get supporting statements from my shrink, who will in long winded medical jargon, get me a machine that will do as I said in the post. This can be done on the grounds that being tied to a 240vac outlet will further cramp my lifestyle and could (will) cause extra stress that that as a PTSD sufferer I don't need. Shrink says he's done a couple allready with sucess. (fingers xed). Also the ongoing costs are looked at as well, meaning that if a machine that communicates to Dr's computer makes the need for further (expensive) sleepovers unnecessary then DVA will apparently pay for that. They will not however pay the $91 for a 12vdc lead.....Unless the plug is some bizare one I can't see why I couldn't make it myself, I've done a Nasa PCB repair & soldering course, put my own money where my mouth is so to speak.....
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Reply By: herkman - Wednesday, Jun 21, 2006 at 08:50

Wednesday, Jun 21, 2006 at 08:50
In my case, my specialist produced three reports, which clearly showed a marked improvement of my sleep, by going to more expensive machine. I did not have to do three more sleep tests, my specialist has samples of all machines, and I took them home one by one for a week.

Then each time I changed over, they downloaded the sleep patterns, and presto the proof was there.

I help Vets with their pensions, and whilst at DVA last week on a training course, saw the guy who arranged the S7 RESMED, and even though it was the top of the range, he said they bought it because it performed so much better.

Apparently according to my specialist, different machines suit different people, so whilst the S7 suited me, for someone else it may be a Bloggs 123.

Glad to see that you are getting it sorted, we have enough problems, without putting up with ones that can be fixed.

Regards

Col
AnswerID: 179617

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