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New member - some questions
#1
New member - some questions
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!
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#2
RE: New member - some questions
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.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#3
RE: New member - some questions
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.
Apnea Board Monitors are members who help oversee the smooth functioning of the Board. They are also members of the Advisory Committee which helps shape Apnea Board's rules & policies. Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#4
RE: New member - some questions
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.
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#5
RE: New member - some questions
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!





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#6
RE: New member - some questions
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?
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#7
RE: New member - some questions
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
.
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