New(ish) diagnosis - sleep apnea


#41

Jen,
I have an extra Amara View full face mask in small, still in the package. Happy to drop in the mail if you are interested.

There is a sizing guide PDF available here: https://5faacd0c97cf0d23c6dc-064f3cd61bcd6e809053bf2fe3432ece.ssl.cf1.rackcdn.com/amara-view-full-face-sizing-guide.pdf


#42

Yes, I’ve almost completed my 21 days. Reading your messages, I see you want a full(er) face mask. One of the things I’ve learned is that (at least in my particular case) mouth breathing defeats the purpose of PAP. And it’s akin to a leak. I’m sure you’ve noticed it yourself - when you have your mask and machine on, and open your mouth, you have a rush of air come out, no? All that air, apparently, needs to be going in.

Thinking about this one thing in particular is what I mean when I say, I have a lot of questions. Because I wonder about stomach distention, and not to bring up a whole other can of worms, but yes, I wonder about side effects. But we can save that can for another day, perhaps. I am someone who likes to know every. single. thing. For better or worse!

ETA: I also get stopped up occasionally. I very very carefully and infrequently will do a netty pot before bed (with distilled water) and bought some saline spray at the pharmacy.


#43

My understanding based on my two appointments with the specialist so far is that with the nasal masks yes, you have to keep your mouth closed. With the full face masks, you can breathe through either your nose or mouth. The lady did say that they’re harder to keep sealed to your face and more prone to leaks.

If I only had occasional congestion, I wouldn’t worry much about it. I’m just thinking ahead because I can be stuffed up for months at a time…and it’s not just congestion, it’s sometimes my nasal passages swelling shut. I use steroid nasal spray and saline nasal spray (and antihistamines and eye drops) daily year round, so the problem
Is when my allergies are worsened during spring/summer/fall or after being exposed to pets or dust, I don’t have additional medication I can take (except steroids). The only time my allergies are controlled well enough that I can typically breathe through my nose is during November to January.

So far the trial has been going really well with the nasal mask. I really just want the other as a backup for when I need it. So I’ll probably just wait till spring allergies hit and then call the same company I’ve been working with about not being able to breathe through my nose.


#44

@Jen A full face mask can be difficult to wear for some, it was for me. I started with a Dreamwear mask, not exactly a nasal pillow mask but similar. I switched to a full face mask due to nasal congestion which forced me to be a mouth breather.

From there the frustration began for me, it became so bad that I eventually stored my machine away under the bed where it has remained until a few days ago.

Two things have convinced me to bring my CPAP out of exile. First during my recent yearly physical my GP told me that we will never be able to get my hypertension under control until I address my severe case of apnea. Second I have been inspired by your story here and I have taken a pointer from you, I purchased a heated hose.

I have been back on my machine for two nights now, the heated hose and a new nasal pillow mask have allowed me to have the most comfortable sleep I have ever experienced with a CPAP. The heated hose allows me to run with a higher humidity setting, I noticed the difference immediately, for the first time in what seems like forever I awoke with no nasal congestion and mouth breathing was not an issue.

Thank You for sharing your story.


#45

@Stemwinder_Gary, I am SO GLAD you found my story helpful! My blood pressure has also been quite high for the past six months and there has been discussion of starting a third blood pressure medication. So that’s something I’m hoping will come down as I continue to use the CPAP machine.

To be honest, I sort of felt like I was rambling about off-topic stuff with this thread. I’ve joined some of the other sleep apnea sites, but I still find them overwhelming and foreign. It’s because this place is so familiar and safe that I’ve continued sharing my experiences here.

The past two nights I have finally been able to fall asleep fairly quickly rather than lying awake for hours. The last two nights I used the warmup feature on my CPAP machine, so that the humidifier and tubing were already heated up when I go to bed, and I think that really helps a lot.

I really hope that you continue to find sleeping with your CPAP machine comfortable!


#46

Just thought I would update because I feel like I’ve had a breakthrough (even though things hvae been going really well!).

One major issue I’ve been having is that I’ve been unable to fall asleep quickly. It takes me two or three hours to fall asleep every night. As a result, I was only getting five or six hours of sleep a night (though I’d be wearing the CPAP for eight or nine hours a night). At the last follow-up appointment, I saw a different person than the woman I’d been seeing, and he was no help at all. He said it was totally normal and would go away within a few days (I’d been using the CPAP for 12 days at that point).

Yesterday I googled this issue and read that ideal sleeping temperature is 16-20 degrees. So I got the idea of putting a fan right next to my bed, because my apartment is always hotter than 20 degrees.

I ran the fan all night blowing on my head, and it totally solved my problem. I didn’t overheat like I often do, and I couldn’t hear myself breathing or the CPAP machine, which meant I was able to mostly forget about it. I fell asleep quickly and only woke up a few times during the night. I also tried wearing the mask looser as my nose has been getting sore, but it fell off repeatedly during the night, so I ended up putting it tighter again.

The only other issue I’ve had this week, and I’m not even sure it’s an issue, is that I did wake up on two different nights feeling like I was choking and couldn’t breathe. That used to happen all the time before, but hasn’t happened since I started using the CPAP. My AHI number continues to be 1 or under every morning, so that may be all that matters. But I will still mention it at my next appointment juse in case. (I’m really hoping I get the woman I was seeing before—there is something to be said for rapport!)


#47

Okay, now I really do feel like I’m rambling, but I just wanted to write the closing chapter of my story (assuming nothing else changes).

I had my third follow-up appointment today and am super happy about the outcome. It was a lady I had never met (last week’s appointment was a guy I had never met, who I wasn’t overly impressed with). She was super nice and was really excited that I was so on-board and interested in all the technicalities, which I really appreciate!

I told her about how this is the first week I feel like I’ve actually been sleeping rather than dozing, but how I’d woken up several times feeling like I was choking and couldn’t breathe. She asked a few questions. Was it the same as my pre-diagnosis symptoms, and I said yes. When during the night was it happening, and I said I felt like it was just after falling asleep. She said that probably I was having apneas that the machine wasn’t responding quickly enough to (since it only responds so quickly). I then told her about how, when I first put on the mask, breathing feels super restricted and unnatural. But then, as I’m falling asleep, at some point something flips and it suddenly becomes very natural. Several times I’ve opened my eyes when this happens and the pressure on the machine is always around 7. I asked her if we could just bump the lower pressure from 5 to 7. She said she had been about to suggest exactly that, and was really glad I’d discovered this conclusion for myself. So she changed the pressure range to 7-12 (it was originally 5-15, but last appointment the guy had lowered the top number to 12). She also showed me the ramp feature, and said I could adjust this in five-minute increments if I felt like air was blasting in my face as I tried to fall asleep, or could turn off (I’ve had it set to auto till now).

I asked about doctor’s forms and insurance, and she said my doctor had filled out the needed forms and they had submitted them to my insurance for pre-approval a couple days ago. So hopefully that will get approved with no issues.

Next week is my last appointment, and she said if no other issues come up, it’ll be my final trial appointment. I asked if I’d have to give the CPAP back, because I’d hate to get used to using this only to give it back and then get one again and have to re-adjust. She said since I’d done extremely well and was planning on purchasing one if I got insurance coverage, they would let me keep it until that insurance coverage came through. I asked if I would get exactly the same machine, and she said I could purchase whichever machine I wanted. I will either get this machine I’ve been using (ResMed AirSense 10 AutoSet for Her), or else the regular AutoSet model that’s black. I think the black one looks sleeker, so I’ll probably go with that (all my insulin pumps have been black, too…I like black).

I asked her if my allergies get super bad in the spring, can I call and try a different type of mask. She said that would be no problem. For now, the mask I’ve been using has worked well, isn’t leaking at all, and my nose has finally gotten used to it.

At my appointment next week I’ll ask who to follow up with if, for example, my “events per hour” number gets too high. So far it’s been great, with an average of 0.8 for the three weeks. This week, since I’ve actually been sleeping, they are a bit higher and in the morning I’ve seen numbers from 1.2 to 2.9. If it gets near 5 consistently and I feel I need settings changed, I suspect I follow up with them, but I’ll check as it may also be my doctor.

Overall, I am super happy with how I’ve adjusted to this, how much better I’m feeling in the morning (so much better!), and the experiences I’ve had with this company. Hopefully the next step is just that my insurance covers everything and I exchange this loaner unit for one to keep.


#48

I am super glad that you are doing so well, your numbers sound excellent.

I don’t know the rules in Canada but the prices paid from a doctor are highly inflated in the US. It might be worth looking into if insurance doesn’t come through, I found I could have bought mine for a third of the cost from Amazon.


#49

I have no idea how it works, either. In fact, I have no idea how much these things even cost, though I’d guess they’re expensive since it’s medical equipment! If insurance doesn’t cover it, I’ll definitely get a copy of the prescription so I can look for the lowest price. However, I do really like these people I’ve been dealing with, so if there was no major difference in price, I’d get mine from there. I know prices are much more regulated in Canada than they are in the US, so there might be less variation in price. I do meet the criteria my insurance company has for CPAPs (basically they require moderate or severe apnea on a sleep study plus a prescription for a CPAP and pressure(s) from a doctor as well as a detailed form filled out by the doctor), so I’m crossing my fingers there are no issues.


#50

I did not question the cost of my machine because my insurance paid, after I learned how much the doctor marked up the cost I was ticked off.

If I must purchase another machine I will try to buy from Amazon or someone like them, the sad part is that with the archaic insurance rules in the US I will probably not be allowed to.


#51

Were you able to see how much the insurance actually paid out for the device?

With some devices, there is a maximum price the insurance will pay for a given device. If a much larger amount is billed, the insurance still pays the same max price and the overage is written off and nobody pays or receives that.

As an example (which may or may not be relevant to your specific device).

iRemedySupply (dot com) has the Tandem X2 shown with an original price of $9344 but now with a discount down to $7786. Similar when we obtained our Tandem t:slim X2 pump (through CCS Medical) they listed the “provider charge” as $10,760. Those are all bogus numbers. Nobody pays that. Nobody gets kickback from that. Just flat out bogus.

The insurance will pay around $4200 ~ $5000 for the X2 to the distributor. Anything over that is written off by all parties involved and nobody sees that other than to let the consumer know how much they “saved” which clearly is just playing games.

Tandem then receives about $3900 ~ $4000 per X2 pump. (US/Canada pricing).

If anybody is paying “cash” for an X2 pump the absolute max they should pay is $5000 and potentially could negotiate the price down to the $4200 range.

For most products, it is difficult or impossible to find out what the manufacturer of the product actual receives and hence difficult or impossible to find out what reasonable markups are in place and whether or not a pricing makes sense.

What makes cost analysis of Tandem easier is that it is a small focused public company which means not only is a great deal of information publicly available but there is not a lot of other activity going on that would confuse the revenue stream. For example Medtronic is also public but they have so much going on with their entire business that trying to determine from their public filings how much revenue they actually receive from a pump is not possible.

And when a Pharmacy Benefit Manager (PBM) sits in the middle (not typical for DME but some devices still flow through a PBM) then they have made a large portion of their business depending on obfuscation of pricing and kickbacks. Which is obviously one of the big topics involved in the larger drug pricing conversations.


#52

And this is where I don’t understand the US healthcare system.

In Canada, in all my experience, products have one price and everyone (whether you’re paying out of pocket or have insurance or pharmacare coverage) pays that same price.

So I have never found, for example, super cheap test strips or super cheap insulin or (I presume) super cheap CPAP machines one place while having them be super expensive elsewhere.


#53

Quite possible the lack of understanding has little to nothing with you being North of the Border.
:stuck_out_tongue:

Whether one likes or dislikes the US Healthcare system, I think the majority of people who have interactions with it would agree that it is confusing.

I personally am a big fan of the US Healthcare system and think it is great.

Which is not to mean it can not be improved upon. Everything can be made better. Nothing is perfect.


#54

Switch this out with “Canadian” and I have the same opinion. :slight_smile:

This CPAP machine is a good example of where it could be improved. Provincial pharmacare doesn’t cover them (other provinces might, but I know many do not). Yet they do cover the tests, procedures, hospital visits, and some of the medications that untreated sleep apnea will require years down the road… Employer-provided or private insurance does pay for the machines. I’m unfortunate in that I have the strictest insurance company out there in regards to coverage for everything (hence why I’m “crossing my fingers” about the CPAP machine and still paying out of pocket for my CGM). Most other insurance companies are not this strict with their coverage. (I have a friend who recently got a CPAP machine and just had to submit a prescription, that was it. No special forms or criteria to meet or pre-authorization…)


#55

@Jen @Stemwinder_Gary I can’t speak regarding Canadian Healthcare laws, but in the US only the actual machine is an Rx item . All the other parts do not require an Rx unless sold as a set (mask, headgear, clips). Individually all the parts are unregulated and generally found for cheap on Amazon or EBay.


#56

This is true @El_Ver, I have just purchased new head gear, I ordered it from Amazon. One peculiarity, I tried to buy it from a local supplier and was told I needed a prescription.


#57

@Stemwinder_Gary I have had this issue too, and learned they were attempting to sell the headgear and clips both assembled as a single item, which makes it a regulated Rx item. If the components are ordered individually, unassembled, no Rx is needed (even if all parts are on the same invoice if they are unassembled)


#58

I think its more than that, I did order headgear and mask as a whole from Amazon with no prescription. The local supplier wouldn’t even entertain my request without a prescription, I believe it it a form of protectionism. I won’t steal you customers if you don’t steal mine, we won’t have to compete we can price fix any way we wish. We just can’t have customers shopping around.

Cynical maybe but this seems to be the way of the medical supply business.


#59

@Stemwinder_Gary i have had the same experience on Amazon. Complete sets that should have required an Rx being shipped without one. Most likely the seller bought a surplus stock and is selling it or isn’t conversant on the laws.


#60

I’m going to ask my husband tomorrow about this. A few years ago, he was bought out by a larger system, he ran a DME which sold cpap and bipap machines. I was under the understanding there was a chip in it that read/downloaded to the company/doctor to verify if the patient was actually using the system. I’m not seeing anyone write about that part of it.