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Advise and things you wish you had known starting out

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KennyAZ +0 points · 26 days ago Original Poster

Hi. I did an at home sleep test a few weeks ago to verify I have sleep apnea and was told I stop breathing 90+ times an hour for 10 seconds or more. So last night I spent the night in a sleep center. I started with a nose only mask. After about, I’m guessing, an hour to an hour an a half I feel asleep and did not wake until they woke me up to try sleeping on my back. At this point the pressures as much higher than when I feel asleep and was caught off guard and was having difficulty. They brought in a full mask to try, but after 20 seconds of that I wanted to give the nose one another go. Now, being more awake and understanding the situation, I chilled out and after 30, guessing again, minutes I fell asleep until I woke up on my own a couple of minutes before 6 AM when they were going to wake me up anyway.

Now I am waiting to hear back from my doctor to go see him, discuss the results, and go buy I assume a BiPAP machine since that’s what I was using. At least at the end, I have no idea if I started on the same machine. My deductible is $5000, and my insurance pays 100% of the sleep test and for the machine once that is met. I believe the sleep test is going to be around $2400. Not sure about the machine, I have only looked at prices online.

I am looking for advise, tips, pointers, things I should ask, whatever. I don’t know anything going forward other than I am really looking forward to getting some good nights sleep again! Anything any of you can tell me is much appreciated!

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Sierra +0 points · 26 days ago Sleep Innovater

The things you need to ask about are breakdown of your apnea events during the home sleep study. They will classed into obstructive apnea events, central apnea events, and hypopnea events. If they are virtually all obstructive apnea and hypopnea events then you are a likely candidate for a CPAP.

Ask to see the results from you in lab test which is a titration study to determine what pressure works for you. They increase the pressure over the night to determine how much pressure is needed to control the obstructive events. Generally as the pressure goes up the obstructive events stop at some point as the pressure holds the airway open. However, more pressure can generate more central apnea events. Central apnea is when you do not breathe but the air flow is not blocked. They are sometimes called clear airway events. So, the trick is to determine how much pressure will stop the obstructive apnea without causing central apnea.

As far as a machine goes, there are automatic ones (APAP) and manual ones (CPAP). The APAP machines cost very little more than a manual fixed pressure CPAP machine. I would resist being given a fixed pressure CPAP machine. Insist on an APAP. If necessary they can be set to CPAP mode. There is no disadvantage of an APAP other than a small (<$100) extra cost.

A BiPAP mainly provides more pressure than an APAP. APAP machines max out at 20 cm of water pressure. A BiPAP will go up to 25 cm of pressure. They also can increase the pressure between inhale and exhale more. The unfortunate part is that going over 20 cm pressure can be quite uncomfortable for sleeping. My thoughts are not to go there unless you have to. That is why you should ask about the pressure needed during the titration study, and if a BiPAP machine is really necessary.

I am less sure about the market in the US, as I am in Canada. Here there can be a huge difference in the cost of a machine from an on line vendor than from a sleep clinic. My sleep clinic wanted me to pay $2400 for a machine. I asked for a prescription and bought one on line for about $900. But, I was paying out of my own pocket. You may not get that freedom to buy on line if your insurance company puts restrictions on what you can do. It sounds like you have a generous insurance plan, and it may be all covered if you just go with the flow. Just make sure you get the right machine for your needs, and have the ability to exchange it if it does not work for you.

In Canada the next typical step from where you are is to get a trial machine and then use it at home for 2-3 weeks to see if it works and you can tolerate the use of it. Then, at least here, you get the option of buying it or not. I took the "or not" and just bought a better one on line for much less cost. As for brands I think ResMed is best, Phillips DreamStation is second best. I would avoid the other brands.

Hope that helps some,

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KennyAZ +0 points · 25 days ago Original Poster

Thank you for the information! I don’t know anyone that uses a cpap so this is all very helpful. My insurance pays 100%, but not until I’ve reached my $5000 deductible for the year. The sleep test will be about half my deductible, so it depends on how much my cpap machine ends up being. I wanted to ask a few questions the morning after my sleep test but after I got ready for work I couldn’t find any staff and just left the questionnaire they had for me on the bed. I wanted to ask if I was using a BiPAP the whole night or what. I was also curious what machine it was since it worked for me to see if I could get one of those. I thought healthcare was 100% covered in Canada, but you had to pay out of pocket?

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KennyAZ +0 points · 25 days ago Original Poster

I also wanted to say waiting to get a cpap after you used one sucks! I am soooooo much more tired today then I was sleeping with one for the first time in a strange environment with people watching me lol. Waiting 7 to 10 days before they even contact my dr with the results is ridiculous.

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Sierra +0 points · 25 days ago Sleep Innovater

I would strongly encourage you to so the at home trial machine as a first step. You will find out for sure that the machine is going to work for you, and even more importantly find a mask you can tolerate. Getting a mask that stays on your head, and is comfortable through the night is the biggest obstacle you will face. If you can get a situation where you can try the machine and a few masks, that is ideal. Better still is if you can do it, without being forced to buy. If price is a consideration, you can probably get overnight or 2 day delivery of a machine from an on line place, to not have a gap in the trial period to your own machine.

If you end up needing an APAP, the one I would recommend first is the ResMed AirSense 10 AutoSet. It is best to get one with the heated climate air hose, and you may find a bundle with a mask choice included. CPAP.com is a popular place, but doesn't have the best prices. You may want to do some searches for a better price and package. A second choice would be the DreamStation Auto. They are nearly as good, and less money. If you ever camp or use an RV off the electric grid, they are easier to power up as they run on 12 volts. The ResMed needs an expensive adapter as it needs 24 volt.

If you really do need a BiPAP, and I would not use one, unless you really do need that 25 cm of pressure, I would recommend the BiPAP versions of these same two machines.

ResMed AirCurve 10 VAuto BiLevel

DreamStation BiPAP Auto

In Canada most often the testing is covered by healthcare, but I believe only Ontario pays any significant amount for the machine.

Hope that helps some. Any questions just ask.

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Sierra +0 points · 25 days ago Sleep Innovater

Oh, and one other thing you should check out is OSCAR. It is open source software that allows you to look at your detailed sleep data from your machine. It is captured on a SD card, and you need a SD card reader, and a PC or Mac to run the software. It will let you determine how well the machine is working for you, and confirm how much pressure you really need. If you get your machine from a clinic you will want to make sure they leave the SD card in the machine. That is one the tricks that some use. The pull the SD card out so you can't look at your own data. Very dirty trick, and not one that the on line providers would do. The machines come from the factory with a card.

It would be very helpful to have this during a trial, as you could form your own opinion on what you really need for a machine. It is possible to post the daily report screen here for comments on what it means.

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KennyAZ +0 points · 25 days ago Original Poster

Thanks again for all the help! I thought the nose only mask I used for the test was pretty comfortable. It had large nose inserts that widened my nostrils. I wish I knew the pressure I ended up at, but I guess I will sometime soon. I only have an iPad but I could get a cheap laptop to use for data results.

I don’t travel a lot, maybe 1 or 2 trips a year, but what is flying with a cpap like? And the cpaps with auto mode, is that a mode that sets the pressure itself? If so why are sleep tests necessary?

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Sierra +0 points · 25 days ago Sleep Innovater

The nose only nasal pillow style masks tend to be the most comfortable, but I am not sure they are rated for pressure above 20 cm and perhaps not even that high. I have used one up to about 15 cm, but not higher.

Traveling with a CPAP is not really difficult. They come with a travel case and they are classed as medical equipment so you take them as an extra carry on without charge. The ResMed case in particular has a velcro strap that slips nicely over a two extension rod roller carry on. I just got back from Mexico and both my wife and I use a CPAP. No hassle at all.

Yes, the Auto versions adjust pressure themselves. A common route now used in our part of Canada is to do a home sleep study, and if it indicates obstructive apnea, then you go straight to a home trial with an APAP. That is what I did. They then look at the detailed data and if it looks good, you get the choice of buying the machine at a ridiculous cost... Part way through my trial I made my own decision and ordered an on line CPAP. I initially used it in Auto mode up to about 15 cm. However after a lot of testing and data analysis I have now changed to a fixed 11 cm pressure. I will post a couple of daily reports for you as to what my results looked like early on, and what they are like more recently. I suffer from central apnea so I can't get low sub 1 AHI like my wife can. I started with an AHI of 37, but have trouble getting it under 3. My wife was diagnosed at an AHI of 83 and now averages under 1. She still uses Auto mode with a minimum pressure of 13.6 and max of 14.4.

You really should request a written report from your sleep lab or doctor. They owe it to you, and should e-mail it or give you a hard copy. It should contain the detail of what pressures were used.

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Sierra +0 points · 25 days ago Sleep Innovater

Here a daily report from back when I started using the machine and the mode was in auto. You can see how the machine responds to events flagged at the top and increases pressure. It was set for a minimum pressure of 10.4 cm, and max of 15 cm.

And this one was from last night, and is actually a little better than my average. Pressure is fixed at 11 cm.

Starting in Auto is always a good idea. It may work fine in Auto, or it may not. Works for me wife, but not so much for me. The higher pressure cause central apnea for me, and I have to limit pressure to avoid that effect.

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KennyAZ +0 points · 24 days ago Original Poster

It sounds like sort of a scam then to still require people to go thru all this and be forced to when auto setting exists. It seems like it should be step one, verify you have sleep apnea. Step two, get an auto cpap with different masks to try. Step 3 if still no sleeping good, seek help. I am going to call the sleep lab tomorrow and ask for the results be emailed to me when they are done. Thanks for the suggestion.

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Sierra +0 points · 24 days ago Sleep Innovater

The traditional sleep labs are finding the practice a big threat to their business. Many are lobbying the governments to not allow the practice of using home sleep studies, and then going straight to an auto CPAP.

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KennyAZ +0 points · 23 days ago Original Poster

It definitely does threaten their business. For good reason. I thought they were in the healthcare business though, so shouldn’t the health of people be more important?

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KennyAZ +0 points · 19 days ago Original Poster

I got a call from my doctors office today saying that they couldn’t find a pressure that worked properly during my sleep test and I was being referred to a pulmonologist. I called the place that did my sleep test and was told that they had to turn the pressure up to high and it was causing me to have problems breathing and that I might need to do another one with a BiPAP. But I was told I was using a BiPAP when I was asked to try sleeping on my back. But the sleep test place then said usually they do a cpap the first night. So right now I am very frustrated and confused, and tired. Hopefully I can get into the specialist soon.

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Sierra +0 points · 19 days ago Sleep Innovater

I would suggest you continue asking about the test results. You may be into an abnormal situation, but normally the more pressure that is used, the more obstructive apnea is reduced. However, the more pressure that is used often causes more and more central apnea. So the critical question would be as to what specifically caused the test to fail. Too much obstructive apnea, or too much central apnea?

The fact that you are being referred to a pulmonologist suggests that central apnea is an issue. Underlying heart issues can be aggravated by pressure and result in more central apnea.

If it turns out that central apnea is the major issue, then a BiPAP is unlikely to be a good solution. In that case an ASV type machine may be needed. There are some specific heart function tests that have to be done before an ASV machine can be prescribed. Here is a link to some information about the ResMed 10 ASV.

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