Dilemma over progress...or lack thereof

[cate1898]

OK so I've now been 3 weeks doing CPAP therapy. No problems with compliance, I seem to have adapted to it fine right from night one and am usually asleep around 7-8 hours a night. Can't check my data cause I've got a brick loaner. I'm STILL getting morning headaches, although I can say I usually don't wake up as often for the bathroom during the night, and might be a little less sleepy mid to late afternoon. The one positive thing is that from the first night of therapy the snoring is gone. That is good, cause I personally find snoring and being female an embarrassment.

I've been contemplating trying to contact my sleep specialist doc to ask him when I can reasonably expect these damn headaches to stop. I would also like to somehow find out if I am titrated as high as I should be. (%#@&^#$grumble, grumble, sure wish I could look at my data...) How does one know if they are titrated to the right number? I am not sure if the technician at the sleep lab titrated me correctly. She mentioned to me she had 5 months experience - not sure if that included her training course in college... Or maybe that's a lot of experience for a sleep technician???

Also, not sure if I'm understanding what I've read here about the Auto CPAP machines, but wouldn't one of those find the right setting for me automatically? If this is right, I can't understand those machines not being the default machine when a patient is given a loaner machine. And the bonus is they provide data. Sooooo, if I'm correct about these auto CPAP machines, what I'd really like is for my sleep doc to arrange for me to use one as my loaner. Which further begs the question why here as Canadians we are not allowed to upgrade from a fixed machine to an auto at our own expense without having to pay for the machine outright. Just doesn't make sense.


EDIT: I'm guessing there is no point in expressing my concerns to the DME as they are only following a doctor's prescription?

[OpalRose]

Nothing against Canada, it's beautiful to visit; but wouldn't want to live there and deal with their health care system.

[Shastzi]

You might need to jump up and down and make a lot of noise.
You really should have an S9 autoset. (about $50 more than what you have)
That will collect data for SleepyHead AND auto titrate you everynight.

The set up you have now, there is no way to tell how good the therapy is working.

Giving you an escape is just being stingy.

Get in there and make them give you some options! Your tax money is paying for this.

Best of luck!

[MobileBasset]

In the near term, while you are trying to get a better machine, I would recommend you adjust your pressure up a bit. My first CPAP setting was 8 and it got me close but I still had some headaches and had to get up during the night. When I finally got a data capable auto machine I knew from looking at the data that I needed to increase my pressure. Now I run between 9 and 10 and it took care of everything - no headaches and no getting up.
Your profile says 6, that's pretty low. You might want to try increasing it.

[storywizard]

OK so I've now been 3 weeks doing CPAP therapy. No problems with compliance, I seem to have adapted to it fine right from night one and am usually asleep around 7-8 hours a night. Can't check my data cause I've got a brick loaner. I'm STILL getting morning headaches, although I can say I usually don't wake up as often for the bathroom during the night, and might be a little less sleepy mid to late afternoon. The one positive thing is that from the first night of therapy the snoring is gone. That is good, cause I personally find snoring and being female an embarrassment.

I've been contemplating trying to contact my sleep specialist doc to ask him when I can reasonably expect these damn headaches to stop. I would also like to somehow find out if I am titrated as high as I should be. (%#@&^#$grumble, grumble, sure wish I could look at my data...) How does one know if they are titrated to the right number? I am not sure if the technician at the sleep lab titrated me correctly. She mentioned to me she had 5 months experience - not sure if that included her training course in college... Or maybe that's a lot of experience for a sleep technician???

Also, not sure if I'm understanding what I've read here about the Auto CPAP machines, but wouldn't one of those find the right setting for me automatically? If this is right, I can't understand those machines not being the default machine when a patient is given a loaner machine. And the bonus is they provide data. Sooooo, if I'm correct about these auto CPAP machines, what I'd really like is for my sleep doc to arrange for me to use one as my loaner. Which further begs the question why here as Canadians we are not allowed to upgrade from a fixed machine to an auto at our own expense without having to pay for the machine outright. Just doesn't make sense.


EDIT: I'm guessing there is no point in expressing my concerns to the DME as they are only following a doctor's prescription?

Hi Cate..

Re expressing your concerns to the DME...even though it may not seem like a good idea that is exactly what I think you should do. Especially as you have a brick CPAP. If you were to go in and say what your symptoms are they may be forced to help you with your therapy. BTW, did your sleep doc prescribe the brick, or was it just the DME who decided to give it too you?
In my experience in BC, the DME's have always responded to my requests for help, and I have never been given a brick....You can get the help, you may have to oil the squeaky wheel of the system a little...

Good luck..

Storywizard

[cate1898]

Storywizard: I'm guessing each province does it's own thing when it comes to CPAP. In Ontario it's near to impossible to be prescribed an Auto CPAP. The DME here is only mandated to loan a machine which provides the required therapy and I was told by them that my prescription does not require APAP. So they loan out the bricks probably cause they are cheaper. I am sure at least at the DME I went to that most people probably end up buying bricks unless they required APAP. While I was at my initial DME appt I saw 2 different RT's both of which were quite surprised I knew as much as I did about the different machines. So I am sure most people get shafted with buying a brick.

Anyway I tried to call the sleep doc who of course was way too busy to speak to me and I was offered an appointment to go and see him Oct. 19 which is a month sooner than my scheduled follow-up appt with him. That would have been great except we are going to Florida from the 12th of Oct til the 15th Nov. So I am left with trying to contact the DME, which I imagine will not really want to deal with this. Hopefully I am wrong. Maybe I'll give them a call this afternoon.

I am wondering if I, like you am titrated too low. So guess the DME is my last hope until Nov. 18 when I will try and get the sleep doc to change something.

[eseedhouse]

Nothing against Canada, it's beautiful to visit; but wouldn't want to live there and deal with their health care system.

Well I live in Canada and I wouldn't trade our system for the one in the USA that's for sure. There are better systems out there but we spend less of our money on health than the USA does and get better results.

I have always got prompt helpful and courteous results from our system. It could be improved for sure, but it's a long long way better than the one we had back in the 1950's before Canadian Medicare came in.

[kaiasgram]

How does one know if they are titrated to the right number?

One looks at the data Which of course the brick does not have. Which you're already painfully aware of. Symptoms (like the ongoing headaches) certainly suggest that the pressure has not been dialed in correctly yet, but symptoms don't tell us anything about where the pressure should actually be.

You asked about the possible lack of experience of the tech -- my thought is that it wouldn't matter even if the tech had a lifetime of experience and several gold stars for excellence, because the night you were titrated in the lab was just one night (and in a different sleep environment than you're used to). We don't sleep the same every night. I think the real problem is not the tech, but the practice of sending a newly diagnosed patient home with a machine that has no treatment data available.

You may have already addressed this in a previous post, but are you able to purchase a machine on a private pay basis? Does Supplier #2 ship to Canada? I'm just thinking that waiting till the end of November could prove to be a long wait for very little -- because in two more months you still won't have any treatment data. All you can follow-up on at the follow-up appointment is whether or not you used the machine, and for how many hours. Even a gently used, fixed-pressure CPAP machine with full data like the Elite would allow you to start watching the data and making some adjustments based on the results. Any chance of picking up a machine in Florida and taking it home with you? Just brainstorming here...

MobileBasset suggested increasing your pressure. Normally I would disagree with the recommendation to increase the pressure without being sure that central apneas are not a problem (need data to know this), but with your low pressure of 6 I'm wondering like she is if it might be worth a try to see if the headaches start to diminish. On the one hand we are flying blind not having any data to back up our suggestions, only your symptoms; on the other hand, at the end of November your sleep doc will be flying just as blind with any suggestions he may make about your pressure. Did you have central apneas in your sleep study?

I probably missed this from an earlier post too, but what is the plan at the end of the loaner period? Do you get a full data machine at that point, or another brick?

[pholynyk]

Cate - In Ontario the Assistive Devices Program pays the same for any kind of CPAP machine, brick or data-capable. More for an APAP machine - which I qualified for, somehow - and still more for a BiPAP machine. Three tiers, period.

Naturally the DME pays less for the brick, but that's their problem. Insist on a data-capable machine. With it you can check the effect of changing pressures, and maybe justify an APAP machine at your next OHIP-paid sleep test in two years.

Good Luck - Phil

[cate1898]

kaiasgram - Although I am anxious to be rid of these a.m. headaches, I'm not sure time-wise if it is worth it to buy while I'm down south. I might have a machine 4-6 weeks earlier than if I just wait to get one after seeing the sleep doc. However, it does bear more thought....at least that way I would have data to show the doc. Depends also on how much I'd have to fork out out-of-pocket for this machine.

I am somewhat confused why after getting a loaner machine one waits 8-10 weeks to return for a follow up appointment with the sleep doc who at that appointment hands out the necessary paperwork in order for me to purchase my own machine. I am planning on getting the ResMed AirSense 10 ELITE as I do not qualify for an APAP by Ontario standards. And as I have said in previous posts (which you may not have read), if you are in Ontario and do not medically qualify to NEED an APAP machine, the only way you get one is to buy it yourself. My private insurance will pay for nothing if I do not use up my Ontario insurance (ADP) portion first. So I'd be footing the bill completely for an APAP. It is tempting, but not likely as both hubby and I retired early from high stress jobs and at the moment we're still paying for kid#2's university bills. (not to mention that our trip to Florida costs us 35% more due to a currently sagging Canadian dollar )

Tomorrow I have a routine appointment with my family doctor and I will discuss it with him - but based on years of past hx I know I will be wasting my time speaking to him about it.

So far no return call from the DME who I tried to reach today. So still waiting for that. Not that I have any hope that the DME will override the prescription from the doc, and therefore will not make any changes to the settings.

In a perfect world, everyone would get an APAP machine as a loaner even if not medically necessary and if I understand it right, after using it for a period of 3-4 weeks or so? the machine would give data and a better idea of where a patient's pressure should be titrated to. Just my non-medical newbie opinion.