Common Issues w/ CPAP Use?

[kyokoyama]

Hi, all! TL/DR: I'm interested in improving therapies for sleep apnea; what's frustrated you about sleep apnea, lately? (Not just limited to CPAP use)

So to give you a more detailed idea of what I'm looking for, let me introduce myself: I have mixed sleep apnea, and I've been using my CPAP to a decent degree of success for about two years now (at least, my grades in my classes aren't as abysmal anymore after I got the machine); AHI could be better, but you know what they say about the grass being greener...

...for the purposes of this post, though, I am also in a group of undergraduate students for a  senior capstone project in Biomedical Engineering. We've been lurking around online forums (including here), Reddit, and several research articles, and we slowly realized that my personal experiences with sleep apnea (I had a helpful sleep specialist, a cooperative DME tech, and a good experience with my DreamStation) put me in a very tiny minority. After looking through several threads here on Apnea Board, I've noticed a lot of themes popping up often, like leaky masks and poor air pressure/flow rates. This made me curious about what other people's experiences were like when they found out they got sleep apnea, how they did (or didn't) their sleep tests, finding the right masks, playing with their CPAPs until they found a good setting, etc. etc...

So if you could tell me this (and you're fine with me possibly asking follow-up questions), I'd really appreciate it: 
what was your experience with sleep apnea (and/or CPAPs) been like, and what frustrates you the most about it?

Thank you!

[CB91710]

Frustrations?
I keep several different masks available as I occasionally get irritation.   On my favorite mask, it works well for a month or so, then suddenly I'll start having issues with leakage around my right nostril.  A week off with another mask and I'm fine when I go back.
It's a minor issue, but it has resulted in a (costly) never-ending search for a "perfect" mask.   I keep going aback to the ResMed P10.
Physically, I'm a bit more bloated from swallowing air, so there's a small increase in burping and farting.   Again, it's a minor issue, no real discomfort.

It takes up room on the night stand, and when traveling, not all motels have two night stands...  my wife and I generally have to sleep in separate beds (We both use similar equipment) because they only provide one stand between the beds (and I don't want to put it on the floor).   I also pack a couple of extension cords to go with a power strip so we don't have to worry about not having a place to plug in the machines, phone chargers, etc....
It's two extra bags to pack and carry to/from the room (and plane).

But the inconveniences and frustrations are all worth it.
That became VERY obvious on my first road trip after beginning therapy.   Longer drives and more pleasant sight-seeing without a HINT of falling asleep while driving really showed that it's worth it.

[Hydrangea]

My biggest frustration is corruption with sleep "doctors", useless DMEs, and unhelpful insurance.

I feel very much on my own.

[paulag1955]

My biggest frustration right now is that my sleep doctor has declared that my apnea is adequately treated but I feel the same or possibly more tired than I did before I started therapy. So I guess you could say that I don't think my doctor is very helpful.

However, I've also had some comfort issues with my mask and just trying (still) to get used to sleeping with that apparatus on my face and also not being able to sleep in my preferred position

[sonicboom]

If you read the stories on this thread you will obtain a lot of the information you are looking for:

http://www.apneaboard.com/forums/Thread-...-Post-Here

[trish6hundred]

Hi kyokoyama,
WELCOME! to the forum.!

[kiwii]

I'll bite.

I am frustrated that there is one price for the equipment, and a grossly inflated price for the equipment if purchased with insurance.

I am frustrated that an entire industry seems to be based on what they can milk the insurance company for: an overnight titration study for the initial setting up of a basic cpap machine just is not necessary, nor is it even the best option. But, hey, insurance will pay for it, so why not? cha-ching!

I am frustrated by unethical DME's that sell used equipment as new. I am frustrated by so-called sleep doctors that push for annual office visits by limiting your prescription to a yearly renewal. I am frustrated to even know that such unscrupulous practices are happening. I was happier when I believed that the medical profession was based on patient care (what is best for the patient), rather than lining their pockets.

My experience starting out with xPAP was needlessly complicated. I am incredibly frustrated that my experience is so common among the newly diagnosed.

Lesson learned: If one must have a 'sleep specialist' pick one that does not also have a sleep center and DME affiliated with their office.

[GuppyDRV]

Welcome,

I'm mostly frustrated with the system. I'm constantly having to advocate for myself with my sleep doctor. He's an encyclopedia of knowledge but a useless doctor as his concern resides within his wallet. He has only ever looked at summary statistics and not once a waveform etc.... I'm technically treated with around a 1 AHI but feel as if I'm only half way there. I may have found a good doctor and am waiting for my appointment. I only figured out that more might be possible with my own research! I'm not apposed to this level of engagement but it's frustrating.

GuppyDRV

[FozzyDaBear]

My biggest frustrations have been costs and adjusting to the machine. US healthcare is so expensive and the overall cost has delayed my treatment. It wasn't until that my wife said I made a clicking noise in my sleep that scared her that convinced me to get a sleep study. One sleep study confirmed I had mild to moderate sleep apnea and another sleep study to dial in the settings. Total cost was $14,000 that drained the $3000 I had saved up in my HRA from work. Then the cost of the machine and supplies. For the equipment, you're better off buying out of pocket instead of going through DMEs because of their astronomical rates in the brave new world of mostly high deductible insurance plans.

Treatment has taken a while to get used to and I'm still adjusting after 5 months. Finding the right mask is difficult because there are so many masks out there and you only have so much money to spend on equipment. I'm feeling better than I was still not like I was before and not sure if I ever will be. There's lot of different types of adjustments (to sleep with something strapped on your face to not breathing through your mouth to all the different accoutrements that come with cpap machines). It almost feels like a lifestyle change is being forced on you.

[Walla Walla]

Leaks.