New member - some questions

[dreamscape99]

Hi everyone!

I am very glad that this board is here, because right now I am a bit lost, and could really use some advice.

For the last 2.5 years or so, I've been dealing with some weird health issues (heart palpitations, issues with climbing long staircases despite doing hardcore exercises in other ways, lightheadedness, etc) that cardiologists could not diagnose, until very recently, when they asked me to take a home sleep test. It came back with 44-48 AHI, putting me in the "severe obstructive sleep apnea" category. I've also been having trouble sleeping lately, though before this test I thought it was more stress related.

A while back, maybe 12 years ago or so, I started noticing that if I fall asleep on my back, I would sometimes get a scary panic type feeling right before drifting off, that would jolt me awake sometimes. So ever since then, I would usually fall asleep on my side (left or right), and stopped noticing this issue, though at the time I did think of sleep apnea. So I guess I just thought by sleeping on the side, it was resolved, but it probably kept getting worse ever since then, it would just happen during sleep, so I didn't notice.

So now, I was referred to a sleep specialist (ENT doctor), and just had an appointment with him. I did a little research beforehand online, and it seems the three most common treatment options are CPAP machines, Mandibular Devices, and Surgery. To my surprise, the doctor almost immediately seemed to dismiss the CPAP machine, saying that in his experience, most people end up not sticking with them due to the discomfort and difficulty of use, so no matter how good they are theoretically, in practice, they are not that good just because of "compliance". He also seemed concerned about their current shortage due to the massive cancer related recall going on. Surgery also did not produce good results in his experience, so he suggested for me to get a custom fitted mandibular device in his office, which he said would have a good chance to knock the AHI maybe halfway down or so (from severe to moderate), and perhaps help me improve my metabolism from better sleep, and lose weight to lower it down further.

When he told me all this, it made sense to me given what I knew at the time (very little). But afterwards, I went online and started googling a lot of this stuff, and now I am more confused than ever. For one thing, he did not mention that the general consensus seems to be that mandibular devices tend to cause teeth and jaw changes over time, including possibly interfering with chewing functionality and TMJ pain, and other fun stuff like that. Also the fact that these devices only lower AHI but don't take care of it completely seems rather concerning. Ideally, I would like to get some treatment to allow me to get my life and metabolism back on track, and then lose substantial weight to see if I can take care of apnea at the root (I currently have an obese BMI, though some of it is muscle), but it's certainly possible that this will not work out completely, so getting stuck on some "moderate" AHI is also not optimal.

I've also researched some alternative stuff like Tongue Retaining Devices (Aveo TSD I think is the most popular), which try to keep the tongue pulled forward, but perhaps without mandibular devices harm to teeth/jaw.

So given that many of you have so much more experience with this obstructive sleep apnea business than me, I would really love some feedback on the whole CPAP vs MADs vs TSDs breakdown. As part of my research I learned that most people here are pro-CPAP, but I would love to hear about the particular points below:

- Are MADs really that bad for dentition, or can that be managed with some adjustments/exercises as I read in some places?
- Is getting used to CPAP machines just a matter of commitment, or are some people just unable to do it, no matter what? Some concerns I have specifically: I am often a mouse-breather due to nose congestion due to allergies/cold weather/spices/etc, I also toss and turn a lot during sleep
- Are CPAP machines actually available now with the recall (via the standard insurance route), or how long would one have to wait to get one?
- Have people here had success with the tongue retaining devices? Or other alternative approaches like I've seen references to some device that forces you to sleep on your side, or the Mew method to reshape your tongue and jaw?

Thank you in advance for your time, I really appreciate it!

[staceyburke]

I have been a Cpap user for 30 years. My wife and my son use Cpap and all of us are successful with pap therapy. I have a brother in law that would not stick with it and his health has deteriorated to the point of needing a nursing home. Many of his problems are from apnea including heart problems.

Cpap is the gold standard for apnea. It is a journey but one most of us have been on for some time. I for one can not be without it.

[pholynyk]

It seems odd that he dismisses the gold standard treatment out of hand, and suggests a treatment that he would supply.

There are many mask styles, so finding the one that fits your face may take a while, but once you do, it's pretty smooth sailing. I've been using my CPAP for more than six years; I don't recall that it took too long to get used to it.

And there is lots of advice and encouragement here on Apnea Board.

[sweetnothings]

CPAP will be the cheapest option I think, with or without insurance. I haven't tried those other treatments so I can't vouch for or against them but from what I understand, the dental appliance is expensive because it has to be custom ordered by a dentist to fit your mouth. And surgery of course is a much more invasive procedure.

CPAP is very effective for those who can tolerate it, so you should at least try it to see if it works. Keep an open mind if you find wearing the mask irritating at first. I was experiencing many of the same symptoms you are, lightheadedness, constant daytime sleepiness, fatigue, headaches, dizziness, trouble getting to sleep, couldn't stay asleep, weird heart palpitations... I'm only a month or so into treatment, but I can tell you the machine has eliminated most of that so far.

[SevereApnea]

welcome!


"So now, I was referred to a sleep specialist (ENT doctor)........" 
"the doctor almost immediately seemed to dismiss the CPAP machine..." .....'nuf said.

Just a hint of bias, Perhaps? (3 letters) (starts with Y).

Bias is good, if it is in your interest, based on data.

I am not dismissing his/her credentials, of course, and not suggesting this won't work for you.

(Interesting that your Cardiologist sent to you an ENT surgeon.)

You have an AHI that is in the range for which MAD is generally not the first choice.

My own experience is different. When diagnosed with Severe Apnea AHI = 41 by my Respiratory Physician I was reluctant to start PAP therapy. (You mean I've got wear a What?)  

I asked about Surgery/nose/turbinectomy/palate laser/UVPPP etc.  His response: you could, if you like, but I don't recommend it, here are some facts....30% success rate, very painful, often needs repeating.

(another medical fact: In general the more surgical options there are the less likely any of them is likely to be successful.)

Now, to be fair, he and I have not totally discounted the MAD, it is another option, equally costly, a 2nd choice perhaps, and depends of the skill of the laddie fitting it. The pros and cons should be placed at your disposal.

There are reports of people using both MAD and/or PAP therapy, or PAP at home and MAD when travelling.

Do be aware of the side effects. Feel free to use the search function on this board to see others' experience.

Good to see you taking care of your own health and asking the right questions, ultimately the choice will be yours.

Grab as much info as you can and go for it. Based on your story, symptoms and AHI, clearly something needs to be done, and we would all encourage you to follow up on this sooner rather than later.

If you choose the PAP pathway, you will get all the help you need from this board.

Warning: this board is addictive!

[dreamscape99]

Thank you for your replies!

Have any of you had success with CPAP machines while also being mouth breathers (all or some of the time)? That's one of my big concerns, how that will work with a full CPAP mask, because during normal sleep, I will sometimes breathe through my mouth and sometimes through my nose.

Also, ditto with tossing and turning a lot while sleeping?

Do you find that using CPAP regularly affects your breathing in any way when not using it, during daytime?

Finally, if I was to seek a second opinion (as it seems from your responses and other places I've googled that CPAP is the first approach to be tried), what's the best type of doctor to talk to about this?

[Gideon]

A few words on why CPAPs fail so often.
The main reason is lack of support. You are given an APAP, set to wide open and told (incorrectly) that since it is auto it will find your optimum settings. Now see me in 30 days, and again in 90 days to perform your compliance check for insurance or they will take it away.
Your DME cannot make ANY setting changes without a change in your prescription from your doctor, even if they see the need.

But you found us. We are all CPAP users of one type or another, some have had surgery and or MADD as well. That means we know what works and what doesn't. We will guide you thru your journey. We cannot make any changes. To your machine, only you can do that. We will offer advice need on data, that is one thing that makes us different. The data we use is the detailed data that is only available from the SD card used by your CPAP. The main tool we use is OSCAR, Open Source CPAP Analysis Reporter. With OSCAR we can see what is happening down to a breath by breath level for the entire night. But you are not there yet

Because we have seen gross errors in sleep tests we like to see full redacted copies of your sleep tests. How gross, we have seen sleep tests reporting several hundreds of apneic events, even with all but one single event being Central Apnea, and that one single event being a lone Obstructive Apnea event yielding a diagnosis of OSA, Obstructive Sleep Apnea.
Typically any sleep diagnostic study with apnea present will carry a diagnosis of OSA. To start we want to validate that diagnosis for you as that makes a big difference on the model and class of machine that you should get.

I'll add that here at AB the success rate of AB users is very high
.

[dreamscape99]

Hello everyone. So since making this post in September, I've been busy with doctors, DMEs, etc trying to obtain a CPAP machine. I finally got one yesterday, and had my first night with the CPAP therapy. It was ... interesting.

I got ResMed AirSense 11 (apparently it replaced AirSense 10, which I was looking for based on recommendation on this board), and was able to get 3 different full face masks to try, because I didn't know which one would work: Quatro Air, DreamWear Full Face, and Amara View. I am often a mouth breather due to allergies, congested nose, etc, so nose mask didn't seem like it would work for me.

The CPAP machine was set up by the DME on auto, with dehumidifier on. The masks drove me halfway crazy last night before sleep, because no matter what I did, the machine diagnostic function would keep telling me the seal was not good for all 3. At times, I was able to get the seal to work for a bit, but if I changed position, it would turn bad again. I played around a lot with the strap tightness, but didn't seem to help at first.

Finally I got Quatro Air to seal somewhat ok, and lied down for an hour or two. After that time, the mask really started feeling uncomfortable on my cheek area in particular, I think it was probably too tight, but of course if I loosened it, the seal would suck again. So eventually I switched to DreamWear Full Face. That one is not perfect either, I feel like it changes the nostrils too much, making my nose breathing even worse than it usually is, but overall, I found this one a lot more convenient.

By playing around with the straps on the mask, I got it to the point where when I would start the seal test (around 4 pressure), the seal would be good. But as the pressure increased in the test, the machine would tell me the seal was bad again and needed to be adjusted. Nothing I did seemed to fix this, so finally I just went to sleep with the DreamWear like that.

Probably spent about 4 hours in a state I would loosely call sleep. This mask was a lot more comfortable, but the sensations of air pressure and other related stuff kept me from really going into deep sleep. So I felt like I was just lying there, feeling the breaths, but toward the end, kinda half checked out and not fully awake either.

At the end, the myAir app updated and told me I got a score of 73/100, which actually surprised me, I thought it would be way worse. I still think it's fudged because not going into deep sleep probably fixed the apneas more than the therapy at this point, but according to the app, the seal was actually good (19L/min), there were 2.2 events per hour (my pre therapy sleep test had me at 48ahi), and so on.

Anyways, at this point just wanted to check in, and also ask a few questions that are on my mind:

1. Is it normal to not go into full normal sleep when you start CPAP, and just lie there for hours, half awake, half asleep? Does this go away once you get more used to the pressure?
2. Is my experience with seal diagnostic being good at 4 pressure but not good at 8+ pressure as the test continues normal/typical, or is this something I am doing wrong?
3. Is there a way to shut off AirSense 11 when you are not using it? If I take off the mask, or hit the power button on top, it still continues working on and off, sometimes increasing pressure for no reason, but I don't see any options to turn it off completely, short of unplugging.
4. Does AirSense 11 integrate with OSCAR since it's so new?

Thanks, I really appreciate all of your help.

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I can't seem to post images or links to the sleep test results, because you need at least 4 posts, so let me try one more post first.

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Ok, I guess I can't post those for now. Will try later.

[mesenteria]

Hi, and it is really encouraging for us who lurk here trying to help to see someone come back and not throw his/her hands up in resignation.  This is encouraging because we can almost certainly help you.  You have a serious orientation to your own health, and that's Job One.

Normal, effective, 'rest' with a CPAP on board has, as you can appreciate, a somewhat wide range of interpretations, all based on experience and motivation, and even on underlying health issues.  I would say 'normal' sleep is going to be at least four solid hours of decent stages of sleep in a progression, and then maybe some iffy crap for the next two hours.  Many do much better, even coming here to brag about a consistent nightly AHI of about, oh, 0.0, or maybe 0.4 on a bad night.  

So, it depends.  With a concerted effort, a wide open mind, a willingness to try different things, including more headgear and masks attached to them, you'll find your sweet spot.  So, keep plugging away.  

Your second question: The seal matters a great deal, but so does HOW WELL YOU CAN SLEEP WITH YOUR MASK.  The mask must not interfere too much with how you can fall, and stay, asleep.  If the seal is bad, you'll know it from air wisping and whooshing, and you simply will not be able to fall asleep.  Or, if you are asleep and you displace the mask or deform it, and it breaks the seal, that will probably, not certainly, wake you.  Now your sleep pattern has been disrupted.    

So, keep trialing masks that will take some sleep-related displacement and keep the seal AT THE PRESSURES YOU NEED.  These being as yet undetermined.

Third question: The machine ought to shut of completely once you hit the button.  If you go into the options (read the manual!), you can set it to start and to stop when you don or when you remove the mask.  When you remove the mask, it takes about four seconds for it to decide it's wasting its time and it will slow the fan to a speed that clears the tube of moisture.  This goes on for at least 10 minutes.

If the new machine cannot be read in OSCAR, it will be very soon because we have a dedicated team who do that for the air they breathe...and that you breathe.  Someone will answer that question definitively very shortly.

[SarcasticDave94]

OK a few things of note:

An ENT will point you to actions they can perform themselves, collecting the boat payments for x y or z, just like a surgeon will opt for surgery, sleep doctors to suggest PAP.

Chevy dealers try to sell Chevy's as the best answer, Ford and RAM ditto, medical is similar.

You should be able to Attach OSCAR. Reply another time or so to get to 4 then wait a short time delay for the forum software to update your status so you can add in the report info.

You'll need to work several parameters on each mask to make it work: cushion size, strap adjustment, placement. I've had the Amara View and it was frustratingly uncooperative. Each person is very unique in what mask works best. And the mask selection will make or break your whole PAP success.

Pressure of 4-20 is default and not at all tuned to you. You'll need to do that yourself to get at least good results. Your doctor is probably trusting in the "Auto" to just magically select the right pressure. That's not what Auto is for though. This is where OSCAR comes in to allow you to monitor your therapy yourself. Docs not doing it, he's only concerned with "Is he using the PAP for 4 hours per night to meet compliance? He is meeting compliance so all is well, send me the check."