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Advice needed please: Queensland rules
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OpalRose Offline

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Post: #11
RE: Advice needed please
Sandii,
I do sympathize with your situation. You said your doctor is on leave? She reported that you have sleep apnea, took your license, and went on leave??? I would fire her! Is there another doctor you can talk to?

You need treatment and she did nothing to point you in the right direction.

Are you saying that you have to pay for a Cpap on your own? I understand they are expensive in your country. Check the supplier list at top of page. (Supplier #2 ). You may be able to purchase a good used machine for a lot less.

Regardless of how unfair this seems to be, you will have to remedy this, and play by their rules. The important thing here is that your health is at stake, and untreated sleep apnea can cause your more health problems in the future.

I don't recommend breaking the law and driving without a license.

OpalRose
04-02-2016 05:35 PM
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Sandii Offline

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Post: #12
RE: Advice needed please
OpalRose - yes, I do understand what you said about if my children were hit by a sleeping driver etc and if I felt I was too tired to drive I simply would not take the risk and drive. Nothing was mentioned to me about Narcolepsy at all. We don't have any warning at all here in regards to 'fixing' the problem. She had already sent the report into the transport dept before I even attended my appointment. It takes that dept 5 days only to issue the cancellation letter to me. And yes, I do understand the doctor's position to a certain degree however when she stated that she had a 'duty of care' to everyone else and yet has shown me she has none towards me by giving me no warning or avenue to prove I can competently operate a motor vehicle and not caring how I am supposed to survive without any help, then I have a problem understanding that part. Maybe I'm just really stupid but I am failing dismally here to understand how being hooked to a machine during the night hours will make me any more competent than I have already proven to be whilst driving a car in the daylight hours.
04-02-2016 05:39 PM
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OpalRose Offline

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Post: #13
RE: Advice needed please
(04-02-2016 05:39 PM)Sandii Wrote:  OpalRose - yes, I do understand what you said about if my children were hit by a sleeping driver etc and if I felt I was too tired to drive I simply would not take the risk and drive. Nothing was mentioned to me about Narcolepsy at all. We don't have any warning at all here in regards to 'fixing' the problem. She had already sent the report into the transport dept before I even attended my appointment. It takes that dept 5 days only to issue the cancellation letter to me. And yes, I do understand the doctor's position to a certain degree however when she stated that she had a 'duty of care' to everyone else and yet has shown me she has none towards me by giving me no warning or avenue to prove I can competently operate a motor vehicle and not caring how I am supposed to survive without any help, then I have a problem understanding that part. Maybe I'm just really stupid but I am failing dismally here to understand how being hooked to a machine during the night hours will make me any more competent than I have already proven to be whilst driving a car in the daylight hours.



Sandii, that statement was "not" made by me, that was made by another poster...FrankNichols

You are not stupid...you found us, didn't you? But I believe that you fail to realize how serious Sleep Apnea is. I don't know what the results of your testing was, and you don't seem to know either. I blame your doctor for not explaining this to you.

OpalRose
(This post was last modified: 04-02-2016 05:57 PM by OpalRose.)
04-02-2016 05:55 PM
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FrankNichols Offline

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Post: #14
RE: Advice needed please
(04-02-2016 05:55 PM)OpalRose Wrote:  You are not stupid...you found us, didn't you? But I believe that you fail to realize how serious Sleep Apnea is. I don't know what the results of your testing was, and you don't seem to know either. I blame your doctor for not explaining this to you.

Boy, I completely agree with you. The doctor by leaving and not writing a script is putting the patients health at risk both by not getting access to a CPAP machine and by preventing them any alternatives for normal required transportations for live critical needs. Which is why I said I would look for a new doctor and not deal with that one any more - of course not being from there I don't know if they have the option of changing doctors.

I am not a Medical professional and I don't play one on the internet.
Started CPAP Therapy April 5, 2016
I'd Rather Be Sleeping
04-02-2016 06:26 PM
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Sandii Offline

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Post: #15
RE: Advice needed please
thx for all the replies. Is good to know there are others out there as am feeling very isolated and alone at the moment. Will be good to hear from anyone in Australia that knows more about the system here. I'm not that computer 'savvy' so am not sure how that take home test the gp had me do that has resulted in this mess actually works. I am diagnosed CPTSD (Complex Post Traumatic Stress Disorder) and have been for many years. Part of that disorder is that I never sleep well or for very long, have terrifying nightmares that cause me to thrash about and pushes my heartrate through the roof, night sweats and the nightmares have even caused me to stop breathing and start choking because that's what I'm dreaming of at the time. I know this because I have woken up suddenly with my own hands around my own neck in the past or pillows/blankets over my face. Does anyone know how that test I did can tell the difference between the reactions I have that are related to the CPTSD and actual sleep apnoea?
04-02-2016 06:35 PM
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robysue Online
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Post: #16
RE: Advice needed please
Sandii,

I'm in the US so I can't begin to explain why the rules are so harsh in Australia. You do have my sympathy however.

I'd like to answer some questions that you've asked that are not directly tied to the question of the driver's license mess. But having these answers may help you start putting together what to do next.

(04-02-2016 04:53 PM)Sandii Wrote:  Thanks for your reply. I live in a small regional town in Queensland Australia. I contacted our local place that deals with CPAP machines to get a price on them. The prices, even on his second hand machines are way more than I can afford and I don't have anywhere I can even borrow the money needed from. He also informed me that to buy one of his 'cheaper second hand' ones I would need a prescription from my dr as they need to 'regulate the airflow?'
A plain old CPAP only blows air at one fixed pressure. And the person who sets the machine up has to set it up with the pressure setting ordered by the doctor in the prescription. Only you haven't had a titration study and the doc hasn't any more idea than you do about what the correct pressure to prescribe would be.

The usual way of avoiding an expensive in-lab titration study is to set the new patient up with what's called an APAP or AutoCPAP. Those are the "automatic" machines the guy at the CPAP store said he could sell you without a prescription. In Australia, those machines can be sold without a script because they can be set to adjust the pressure all night long based on what's happening. Here in the states some insurance companies are now setting new OSA patients up with a APAP loaner for a week or two to do the titration at home. The proper pressure setting can be determined from the APAP's data.

So---if it were possible to buy an APAP that would be the way to go. And it sounds like that's what Australian law expects you to do: Just buy the APAP, use it for 4 weeks, and use the APAP data to get your license back. But you are slipping through the cracks because you can't afford the APAP and you can't afford to lose the license while you try to straighten out how to get the APAP for a price you can afford.



Quote:Dr has not given me any 'prescription'.

She has also now gone on leave until 20 April.
As others have pointed out, if it is possible to fire this doc, you should do that. If nothing else, is there a governmental agency or medical board that you can report the doctor to?

Quote:From what I can ascertain the law here regarding trying to get my licence reinstated is that I have to 'trial' a machine for 4 weeks and my 'levels' have to 'significantly' lower & dr has to approve this before the transport dept even considers reinstating my licence.
The "trial" of a machine means that you are supposed to get your hands on a CPAP or APAP machine and use it for 4 weeks. The question, of course, is how can you get your hands on a CPAP or APAP when you can't afford to buy one. The question is whether anybody can lend or rent you a machine at modest cost for 4 weeks.

The "levels" that have to be "significantly lower" to get your license back are the treated AHI. The AHI is the "apnea-hypopnea index." It is the average number of events that occur in one hour of sleep. Here in the states, an untreated AHI > 5 is considered mild apnea and an AHI > 30 is considered severe. CPAP/APAP therapy is considered effective if the treated AHI is less than 5. There is a thread somewhere on the board that seems to indicate that Australia is changing it's standards for "effective" treatment. You might want to look for that thread. But loosely you can assume right now that your untreated AHI is most likely well above 10---as in your upper airway collapses and you stop breathing or almost stop breathing at least 10 times every hour you are asleep. The CPAP/APAP should reduce your AHI to less than 5.

So here again, if you can figure out a way of getting a machine, your goal will be to use the machine every night for a trial period of 4 weeks and if the machine's reported AHI for the month is less than 5.0, that will be enough to satisfy the doc and the transportation department and you'd get your license back. Keeping your license may require demonstrating that you continue to use the machine to manage the OSA.

Quote:I do not have private health insurance as am already on a Disability Pension for other medical problems that negate me being able to walk the long distances I would need to to be able to access the grocery store alone let alone anywhere else.
Seems to me that calling the folks at the Disability Pension office is in order. Maybe someone there can help you get your hands on at least a loaner APAP for 4 weeks. Maybe they can help you figure out a way of helping you out in terms of getting to the grocery store and to doctor's appointments and so on.

You also write:
Quote:I'm not that computer 'savvy' so am not sure how that take home test the gp had me do that has resulted in this mess actually works.
There are several types of home sleep tests that can be used to diagnose sleep apnea. Can you remember how many wires and things were involved? Was there a nasal canula of some sort under your nose? Was there a finger clip? Were there any other wires? If you can describe the equipment that was used, I can give you some information about how the home sleep test works.

Quote:I am diagnosed CPTSD (Complex Post Traumatic Stress Disorder) and have been for many years. Part of that disorder is that I never sleep well or for very long, have terrifying nightmares that cause me to thrash about and pushes my heartrate through the roof, night sweats and the nightmares have even caused me to stop breathing and start choking because that's what I'm dreaming of at the time. I know this because I have woken up suddenly with my own hands around my own neck in the past or pillows/blankets over my face. Does anyone know how that test I did can tell the difference between the reactions I have that are related to the CPTSD and actual sleep apnoea?
Here's the thing: Nightmares where you dream about choking and wake up in a night sweat realizing that you have stopped breathing are a pretty common symptom of OSA in people who have no history of CPTSD. In other words, if you had no history suggesting CPTSD, that symptom points quite strongly to OSA as a serious health condition that needs to be treated.

And here's another thing about those dreams: You seem to think that dreaming of choking causes you to stop breathing and then you wake up feeling like you're choking with your hands up around your throat.

But it's just as likely that the obstructive apneas in OSA are causing the dreams: You need to understand that when your upper airway collapses during sleep, your body is indeed experiencing a real (but short lived) suffocation episode. And all the usual fight-or-flight stress hormones are released as the brain arouses enough to force the airway open and end the apnea. And this happens over and over every time you have an apnea or hypopnea. And to be diagnosed with OSA, you probably have at least 10, and probably more like 20, 30, or more apnea/hypopnea events every single hour that you are asleep. And when repeated apneas happen during REM sleep, the brain can and often does turn the sensations from very real suffocations into bizarre disturbing dreams involving choking. When the dreams get sufficiently scary, you wake all the way up to full consciousness and discover you haven't been breathing and because you are suffocating, you're instinctively grabbing at your throat in an effort to clear the blockage.

Quote:Does anyone know how that test I did can tell the difference between the reactions I have that are related to the CPTSD and actual sleep apnoea?
A full-fledged in-lab PSG with all the wires run by a tech who knows the full medical history is the only test I can think of that might be able to definitively figure out whether your dreams are mainly caused by the OSA-triggered suffocations (apneas) or whether they're mainly caused by the CPTSD. It's also possible that the untreated OSA is significantly contributing to your CPTSD symptoms and that properly treating the OSA may help you manage the CPTSD symptoms more effectively.

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04-02-2016 08:20 PM
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DeepBreathing Offline
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Post: #17
RE: Advice needed please
G'dayGday Sandii.

As far as I know the law in all states is that a person with a range of conditions has to report them to the local Dept of Transport. Here in WA it includes sleep apnea, diabetes, and a whole swag of other common conditions. When I was diagnosed I received a letter from the clinic advising me of my responsibility to advise DOT. Must do that.....

In some states there is also mandatory reporting where the doctor is obliged by law to notify certain conditions. in Qld it's not mandatory for the doctor to report but they do have that option if they think your condition is a danger to others. You can obtain a medical certificate stating that you are good to drive (if you can find a doctor to do that) or you can apply directly to the Qld Transport & Main Roads to have your license reinstated. The details are all laid out very clearly in their website. http://www.qld.gov.au/transport/licensing/update/medical/index.html

Regarding getting a machine, there are a number of options you could try, in no particular order:

- Your local CPAP place. Based on the advice they've given to date, I'd stay away. There is no requirement for a prescription for CPAP in Australia so they were feeding you BS

- The "government". One of our members who also lives in Qld was provided a machine by the government, though I don't know which department or scheme. Somebody else mentioned just the other day they had a machine provided by DVA. If you are on DVA benefits that would be a good place to start. Otherwise talk to the social worker at your nearest hospital.

- Online in Australia. There is no shortage of CPAP suppliers on line, and most of them will do some sort of deal. You might have to settle for a second string machine like a BMC instead of a Philips or Resmed, but they still get the job done at a much lower cost.

- online from the US. Refer to the suppliers list (there is a link at the top of each page on the forum). Some of the suppliers listed will send machines to Australia, and Number 2 has a good reputation for low cost "gently used" machines. Some will provide it without a prescription, but others don't. Get your new doc (because you don't want to stay with the old one) to provide a prescription. They won't use the standard PBS form, but can provide a letter on their official stationery giving their provider number. The letter should include words like "continuous positive airway pressure device, CPAP mask, tubing and accessories, all as per patient requirements". There is no GST on CPAP equipment, but Border Farce will charge a handling fee of fifty or sixty dollars or so.

- Gumtree. A few dealers advertise cheap machines on Gumtree and there are also some private sellers. Personally I'd be wary about buying a used machine from a private seller - you just don't know how it's been treated. However it may be the best way to get a machine at low cost. However a lot of sellers have an inflated idea of what their machine is worth, so be sure to cross-shop against the official retailers.

Now, before you run off to buy a machine, you need to find out exactly what your diagnosis is. Get your doctor to send you the sleep test report. As far as I am aware, there is no legal requirement for a private practitioner in Qld to do this, but government practitioners and hospitals are required to do so. In my view there is no reason a doctor should withhold this information, but yours sounds like a jerk and might want to play silly buggers. Just be polite and insistent. Once you have the report, let us know what it says, and we can point you in the direction of a suitable machine.

Also once you have the report, sack your doctor and find somebody who take their obligations to their patients more seriously.

DeepBreathing
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
04-02-2016 08:20 PM
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DeepBreathing Offline
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Post: #18
RE: Advice needed please
(04-02-2016 05:05 PM)FrankNichols Wrote:  One other thing, I am not sure if this would be good advice or not, but...

Since you say you have 40 years driving experience with no problems, maybe you could continue to drive without a license being careful to not bring attention to yourself and only driving in situations that are critical, like getting food, getting to the doctor, etc. I don't know what the penalty is there if you are caught, and only you can decide if the penalty is worth paying if you get caught. But, it might be better than starving. And a judge would probably take your situation into account. If you do that I would recommend you document all your "illegal" trips to show that you were not going out to party, but only driving in cases of actual life threatening need - like food or doctor.

NO it's not good advice. In fact it's very bad advice. We cannot advocate that somebody breaks the law, even if we think the law is harsh. If somebody took that advice and was picked up by the police there would be multiple offences involved with potentially large penalties. More importantly, if this driver was involved in a crash they would throw the book at her. And if somebody was to die, she would be charged with manslaughter.

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
04-02-2016 08:40 PM
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Sandii Offline

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Post: #19
RE: Advice needed please: Queensland rules
Regarding the CPTSD symptoms such as the nightmares etc I guess may be the two things could be combining somehow but not sure how that would work. However they are the same dreams/flashbacks etc that I have had for a good number of years even before this sleep apnoea stuff. The test they sent me home with was a small black box I had to wear strapped to my diaphragm area. there were 5 electrode things I had to stick on - one on each side of my collarbone, one in centre of forehead, one behind left ear and one on right cheek bone.
There was a nasal tube thing but I have no idea how that would have worked due to the fact that I do not breathe out of my nose anyway as I have a badly deviated septum & any air coming and going from there is very minimal to say the least. I did inform them of that prior to the test but they said it wouldn't matter. I did have a pulse rate thing on my finger. I do have the results of this test in front of me but do not know how to read most of it except for the plain 'english' bits. I was even told from that test that I must have gotten up and sleepwalked however I do not have a history of actually sleep walking about the place. The conclusion on bottom of report is "Horrendous OSA."
04-02-2016 09:09 PM
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dwd1249 Offline

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Post: #20
RE: Advice needed please: Queensland rules
[attachment=2322]Sorry you are having problems with your license . If you download this doc https://www.onlinepublications.austroads.com.au/items/AP-G56-13 Section 8 deals with sleep disorders.
I had to get signed off by a sleep doctor ever year to keep my Drivers Authority to drive a bus . I don't know to what you will have to do to get your license back but my guess is it will involve a sleep specialist.
Good luck with it.
(This post was last modified: 04-02-2016 10:54 PM by dwd1249.)
04-02-2016 10:46 PM
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