Newly diagnosed, trying to stay positive ...

[Arlene1963]

Hi there forum folks!

I can't believe I find myself here with something called sleep apnea, which I had never heard of prior to about 4 months ago when I landed in the ER with a bout of atrial tachycardi and was advised to go for an overnight sleep study.


My sleep study results says:

"There was a moderate degree of sleep apnea with AHI 16/hour with minimal variation across sleep stages or position of sleep. Mean sleep oxygen saturation was 93% with a nadir of 88% Predominantly normal sinus rhythm."

Unfortunately, the wait times are into March 2016 for CPAP fittings.

I can't wait to start CPAP therapy and if it were possible to get it at a private clinic here I would gladly pay out of pocket.

So, while I wait for the CPAP, any advice on how to stay SANE (LOL) how to get some sleep, and tips on how to try to naturally decrease incidence of sleep apnea? (Wishful thinking, methinks!)

Thanks so much for any advice, I have read this forum overnight (guess what, I couldn't sleep!) and it has already calmed me down because I was pretty freaked out with the results yesterday.

Best wishes
Arlene

[tiredandscared]

Hi there forum folks!

I can't believe I find myself here with something called sleep apnea, which I had never heard of prior to about 4 months ago when I landed in the ER with a bout of atrial tachycardia and the ER Doc asked my husband "Does your wife snore?"

Actually, I don't snore, my husband says I am an incredibly silent sleeper which is too bad because if I had been snoring loudly it probably would have got me diagnosed sooner.

I suspect now that I've probably had sleep apnea for about 12 months or so, because my racing heart would sometimes wake me up at night over the last year, along with night sweats and the occasional feeling that I was choking for breath. That only happened three times but SCARY.

My sleep study results says:

"There was a moderate degree of sleep apnea with AHI 16/hour with minimal variation across sleep stages or position of sleep. Mean sleep oxygen saturation was 93% with a nadir of 88% Predominantly normal sinus rhythm."

Unfortunately, the wait times are into March 2016 for CPAP fittings.

Just so terrified about that reading of 88% O2 saturation ..... it freaks me out to think that every night my O2 levels are that low and what this is doing to my body. I am not overweight, (BMI 24.9), don't drink excessively, don't take any drugs except meds for BP, exercise daily(gosh I sound very boring!) ... so I am not sure what more I can bring to this equation in the way of lifestyle modification.

I can't wait to start CPAP therapy and if it were possible to get it at a private clinic here in Ottawa I would gladly pay out of pocket.

So, while I wait for the CPAP, any advice on how to stay SANE (LOL) how to get some sleep, and tips on how to try to naturally decrease incidence of sleep apnea? (Wishful thinking, methinks!)

Thanks so much for any advice, I have read this forum overnight (guess what, I couldn't sleep!) and it has already calmed me down because I was pretty freaked out with the results yesterday.

Best wishes
Arlene

You're lucky I think. Doctors are becoming much better at diagosing sleep apnea. Some people have had sleep apnea for years. At the one year mark. You probably will avoid the worst health consequences of sleep apnea. You could buy it here off someone. There are alot of used CPAP's in decent conditions that people would want to sell. Also I wouldn't worry about your nadir being 88. Whats more important is how long you stay under 90%.

Things you can do to avoid exacerbating sleep apnea:
Sleep on your side
Avoid alcohol and fatty foods
Wear a cervical neck collar during sleep
Avoid gaining weight.

[Julie]

Hi - If you can post your study results here there are experts who will advise you how to set up a machine (and advise which type is best), then you can buy online (get your MD to write a script for the machine you want when you've learned which would be best) and after talking to your insce. co. submit the bill to them unless they have a problem with doing that. Buying online from e.g. Cpap.com will work out to be less expensive (for the insce. co, if nothing else) than otherwise, but one of the two the most popular/best machines comes from a co. (Resmed) that won't allow equipment sent over the border, though dealers here can get them... and one dealer up here (Clinicalsleep.com) is less expensive than other Can. ones that otherwise tend to be more expensive than in the U.S., never mind the exchange rate! So post your results and after advice here and the ok from your insce. co, get your MD to write a script and shop away . If you can afford to do it without insurance, all the better. You should NOT wait til March for treatment! Outrageous (and I'm up here too).

And FYI weight gain is now thought to be a result of OSA, not the other way around.

[ramblingasian]

Hi - If you can post your study results here there are experts who will advise you how to set up a machine (and advise which type is best), then you can buy online (get your MD to write a script for the machine you want when you've learned which would be best) and after talking to your insce. co. submit the bill to them unless they have a problem with doing that. Buying online from e.g. Cpap.com will work out to be less expensive (for the insce. co, if nothing else) than otherwise, but one of the two the most popular/best machines comes from a co. (Resmed) that won't allow equipment sent over the border, though dealers here can get them... and one dealer up here (Clinicalsleep.com) is less expensive than other Can. ones that otherwise tend to be more expensive than in the U.S., never mind the exchange rate! So post your results and after advice here and the ok from your insce. co, get your MD to write a script and shop away . If you can afford to do it without insurance, all the better. You should NOT wait til March for treatment! Outrageous (and I'm up here too).

And FYI weight gain is now thought to be a result of OSA, not the other way around.

A few thoughts:

(1) Because she's in Ontario, no private insurance will cover her for CPAP equipment unless OHIP covers her first.
(2) Machines are actually cheaper in Canada than in the US for the most part with the exchange rate now. I did a quick comparison on the Resmed Airsense 10 APAP. I can find it from a legitimate shop selling the machine for $1055 CAD. The equivalent machine costs $883 USD from CPAP.com which is equivalent to $1161.
(3) They should be able to put you on a cancellation list. There is no reason why you should have to wait until March for your titration.

[Julie]

Good point about the pricing (with ex. rate fig'd in).

[Cardsfan]

Hi Arlene and welcome. Please stick around , there are some very knowledgeable and helpful folks here. (not me, I'm sort of new to this too). But I have noticed there are a lot of machines listed for sale on this site. And there are people here who can advise you what machine will help you.
I certainly don't want you to wait 6 months to get treatment.

[ramblingasian]

Good point about the pricing (with ex. rate fig'd in).

Yeah - the exchange rates have shifted the prices significantly.

As another example, I am about to get my Aircurve10 Auto VPAP using OHIP. I have been looking for a backup machine as well. I thought that it would be cheaper in the US than in Canada. However, there are a bunch of stores selling it for $1120 CAD where as it is well over $2000 CAD on CPAP.com.

Even Resmed and Respironics masks are not significantly more expensive in Canada anymore. But hoses, humidification chambers and F&P masks are still cheaper from the US.

[Pugsy]

Was your sleep study done in a lab or did you have a home sleep study?

As mentioned...there are ways of getting your own machine and mask privately and bypassing the system if you want to go that route. It's fairly simple unless you have some sort of complicating factors but those are uncommon. I don't know the exact procedure for how they do things in your area but it seems like what is done is a 2 to 4 week trial on an apap machine is common to find the optimal pressure then a cpap machine is prescribed set at that pressure.
You can buy your own apap machine and find your own optimal pressure (which is fairly easy to do with the software that is available).

If you want to go the self treat route...check out secondwindcpap.com as they will ship to Canada and not require a RX for international sales.
Tell us if you want to go that route and we can offer ideas on which machines will be easiest to use and self titrate with the software.

Masks...there are ways to get masks without RX too.

[Arlene1963]

Thank you all for the lovely warm welcome and replies and suggestions.

Edit to add: Pugsy, my sleep study was done in a sleep lab at a hospital clinic.

I would like to start therapy ASAP and would be more than willing to buy one myself out of pocket and get started. If I can buy one online I will. I am going to check this out today. I am so happy to have come here and got this info ... a million thanks!!! So yes please any suggestions would be greatly appreciated re machines ..and I will provide as much info as I can.

I only got one page from the sleep study and if I can figure out how to insert an image here would do so. Can I just drag and click an image into the post? I am so sleep deprived today that I can't think straight. I replied to this thread 10 minutes ago and the post just disappeared into the ether. I probably hit the wrong button. I feel really frazzled.

Julie I see that you are in Canada too ... which province are you in?

[Julie]

Hi Arlene - you can download images to Imgur.com, size them appropriately and then put a link to them in this thread.

I'm from Mtl followed by 20 yrs in TO after marriage, but was dx'd in Halifax 10 yrs ago and I'm now in NB (working my way home ). Worked at Sick Kids, The Western Mt. Sinai.

[Arlene1963]

Ok, I went to Secondwindcpap site, and I am definitely, definitely (did I mention DEFINITELY) going to go the self treat route... so now the question is .... how do I go about choosing one?



For the first time since this nightmare began I feel I am getting just a bit of control back, know what I mean?

[Arlene1963]

Hi Arlene - you can download images to Imgur.com, size them appropriately and then put a link to them in this thread.

I'm from Mtl followed by 20 yrs in TO after marriage, but was dx'd in Halifax 10 yrs ago and I'm now in NB (working my way home ). Worked at Sick Kids, The Western Mt. Sinai.

Thanks Julie!

Now off to try to figure out imgur.com ....LOL. Will give it a whirl ..

[Pugsy]

How to post an image is explained here
https://sleep.tnet.com/reference/tips/imgur
while there poke around at his other links...like for equipment and software
https://sleep.tnet.com/equipment

Do you breathe easily through your nose most of the time or do you have chronic nasal issues that mandate mouth breathing?
The answer to this question will give us an idea what masks to recommend.

Do you want to use secondwindcpap.com where you will get either a full warranty (with new machines) or a limited warranty with used machines or would you like to do a private party sale with a forum member (who we trust) but is cheaper but then you give up any warranty?

You are female....I would suggest the ResMed AirSense 10 AutoSet for Her but they are hard to find.
Second choice would be the AirSense 10 AutoSet regular model. The for Her model has a second apap mode available that might come in handy for you....is it critical? No, probably not but it might be useful so if possible I suggest trying to get that model.
ResMed machines cost more and if money is a consideration the the Respironics equivalent is a little less costly and they still do a great job.

I think I would still recommend the ResMed if at all possible though. There's a lot of unknowns ...like how much pressure will you need and if you end up needing higher pressures I think the way the ResMed does their exhale relief is slightly better in the higher pressures. Not hugely better..just slightly better.

We have some forum members who dabble a bit in gently used machines. Pick up a good deal and pass it along in situations like this. I don't know anyone with the AirSense 10 for Her Autoset though...those are hard to find. Usually what they have is the slightly older model like the S9 in ResMed or the 60 series in Respironics.
I sometimes have access to a gently used machine but right now all I have is an S8 ResMed and while it is a good machine it won't give the data detail that you are going to need. You want at least the S9 model in ResMed and 60 Series in Respironics.

At this time the latest Respironics machine model line is the DreamStation and I don't recommend it at this time because of lack of software. It's brand new and software hasn't caught up with it yet.
All these machines have data on the LCD screen but the data isn't detailed enough to do what you want to do optimally. May not need all that detail but we want it available.

[Pugsy]

Oh my goodness...secondwind is showing the AirSense 10 for Her...gently used..and a new open box.
Not cheap but at least they have them.
This page and way down at the bottom is where the ResMed's are
http://www.secondwindcpap.com/Used_CPAP.html

The used for Her Airsense 10 is $599 with heated hose...and the new is $789 but without heated hose (can be bought separately though and I advise getting the heated hose).

[ramblingasian]

The cheapest option will actually be to get your doctor to write a prescription for a rental APAP while you wait for your titration.

This is because:

(1) Your private insurance should cover the cost of the rental. Even if it doesn't, most stores will credit the cost to the final machine purchase once you have the prescription.
(2) The machine cost when you do purchase the machine will be significantly lower than in the US price. If you are prescribed an APAP, the final cost to you should only be aroudn $300 CAD. As well, your private insurance will cover most of the $300 cost.

*This advice is because the OP is in Ontario and being from Ontario as well, this is probably the cheapest way to go.

Edit: Pugsy, I don't see any advantage in purchasing from the US - you're not saving much if any money as well as if there are warranty issues you have to ship the machine back to Second Wind, which will eat into what savings you have.