[CPAP] Ailu, the CPAP outlaw, mask and all

[SuperSleeper]

Hi Ailu,

Given your situation with neurological issues and the fact that you believe you may not have OSA and have a possible separate lung issue, I would first seek out a professional medical diagnosis before beginning any type of therapy, including CPAP. If you have central sleep apnea, CPAP is not the machine you need - CSA is primarily treated with an ASV machine.

Apnea Board exists for patient empowerment, (taking an active role in our own therapy); but that patient empowerment comes from knowledge we've all collectively gained through experience and learning on our own, after we've been diagnosed with OSA by a competent sleep doctor. Most of us are not medical professionals and cannot give you medical advice. We can, however make logical suggestions, and that's what this is.

Hardly ever do the folks here recommend that an un-diagnosed patient begin with any CPAP therapy as a lone-wolf. That's doubly true when someone is like you - with possible side issues that suggest OSA may not be your primary problem or that you might have other complications.

The fact is that you may not have any type of sleep apnea at all-- you simply have symptoms that are similar to someone who has sleep apnea.

Do all you can to get some sort of sleep study to confirm apnea. These days, many at-home tests can even be done rather inexpensively. You don't have to spend a fortune to get a reliable diagnosis. If you can't afford that, then most assuredly if you live in the U.S., you should qualify for some type of assistance to help with the medical bills.

If you have separate non-apnea lung issues, as others have said, you could be making the situation worse by using CPAP to increase inhalation pressures.

In any case, I admire you for wanting to take an active role in your own treatment - I just hope you will seek out professional help to mitigate the risks you're taking by self-diagnosis.

Good luck and sleep well.

[PaulaO2]

To find out if it is obstructive or not, ask your husband to watch you sleep.

If you snore louder and louder then stop breathing, struggle, and perhaps jerk or even kick until you breathe again, the best guess is it is obstructive. If you don't always snore and when you stop breathing, you just lay there, not breathing, then the best guess it is central apnea. If it is central apnea, then the machine you have is useless.

And here's why:

short version: obstructive sleep apnea (OSA) is a throat thing. central sleep apnea (CSA) is a brain thing.

long version: some things in the body are voluntary. Raising our arms so our fingers can scratch our nose. It involves a lot of muscles and we don't think about it but we do it. That's voluntary. The muscles in our throats that help use speak and swallow are also voluntary. The heart muscle and the lungs are not. They are controlled by the brain. Which is a good thing or else it would stop when we are asleep!

The CPAP is a continual positive airway pressure device. This means it pushes air into the nose and/or mouth to keep the throat inflated. As we sleep, the throat muscles and tissues relax. They relax too much, they flap in the breeze (snore). They relax even further, they collapse, closing the airway. The body and brain are screaming for us to wake up. We are struggling to breathe. The movement can get quite violent (and has a name - Periodic Limb Movement Disorder or PLMD). A CPAP tries to keep enough air in the throat so that the collapse has a harder time happening.

However, CSA, being a brain thing, is quite different. The lung's function is to take CO2 from the blood stream and put O2 back in exchange. But some how, the brain thinks it either has enough O2 or has too little CO2 and doesn't think the exchange is necessary. So, we stop breathing. There's no struggle, because the brain says "It's cool, nothing to see here, move along." Eventually, though, the readings level off and the brain continues the breathing process. Basically. The machine for folks with CSA is called something like an Auto Servo Variable or something. ASV. What it does is continually trick the brain into wondering if an exchange is needed or not by varying the air flow.

Some people can have what is called "Mixed Apnea". That's where they have both CSA and OSA. Sometimes, treating the OSA makes the CSA go away. Usually, though, they also have to use an ASV.

So you can see why we can't really advise you much because we don't know what you have exactly. Even having your husband watch you isn't really enough. It's a start but a far cry from a sleep study.

If you are going to do this yourself, then you are going to need help. If you live in the US, go to https://www.healthcare.gov/ to see if you are eligible for insurance under the Affordable Health Care Act. The process is rather slow at the moment due to, well, that's another topic.

[archangle]

Sincerely appreciate all the replies. But what is the difference between obstructive & neurological apnea, as far as treatment is concerned? I assumed the treatment was similar...

What you're calling "neurological apnea" might be "central" apnea.

Standard CPAP may make central apena worse. Or cause it in someone who doesn't normally have it.

Central apnea usually needs an "ASV" style of CPAP machine. It looks like a CPAP, but does some special stuff when you have central apnea. ASV is a lot trickier to set up and use right.

More modern CPAP machines such as the ResMed S9 Elite or AutoSet can detect central apneas, but your S8 machine won't do that.

As for buying and setting up your own CPAP machine, the big risk in my opinion is that you might not have the machine set right and will not get the benefit of your CPAP therapy. Or that you may make your central apnea worse.

[Ailu]

Wow wow wow have I come to the right place. The amount of collective knowledge you all have is remarkable. And I really appreciate how you all share it honestly and openly and without judgement.

Based on your collective advice, I really see how essential and imperative it is that I get a sleep study. Without it I am really running blind, and could even make my situation worse. I checked into ObamaCare as advised and I can actually get insurance for $200 a month, and that's amazing! (With my pre-existing conditions insurance quotes are well over $1000, if they take me at all). Apparently there is an option available for people who need the insurance before Jan 1, so I am going to look into that too.

Again, thank you so much for all your help! And for making this forum a pleasant place to be. I look forward to being a regular member here.

-Ailu

[me50]

please check into medical assistance through the state if you haven't already. also there's always the emergency Room if things get worse. and you are correct nobody wanted you to use a machine and make your condition worse because you weren't sure of what your diagnosis was. I can tell you now I would have done just what you were doing because, until I came to this forum, I was not armed with ammunition and information that I needed to protect myself and take charge of my medical treatment

[me50]

Wow wow wow have I come to the right place. The amount of collective knowledge you all have is remarkable. And I really appreciate how you all share it honestly and openly and without judgement.

Based on your collective advice, I really see how essential and imperative it is that I get a sleep study. Without it I am really running blind, and could even make my situation worse. I checked into ObamaCare as advised and I can actually get insurance for $200 a month, and that's amazing! (With my pre-existing conditions insurance quotes are well over $1000, if they take me at all). Apparently there is an option available for people who need the insurance before Jan 1, so I am going to look into that too.

Again, thank you so much for all your help! And for making this forum a pleasant place to be. I look forward to being a regular member here.

-Ailu

Also, I just thought of this, where I live, there are medical facilities that see patients on a reduced fee. A less expensive thing would be to get your lungs checked out while waiting for insurance coverage. To get a sleep study, you will have to see a doctor of some sort to order the study and a pulmonologist can do that for you I believe. I don't know where you live but I presume you are in the states since you are talking about Obama Care. I didn't know that you could get aid before January 1 so that is going to be helpful to some that don't have insurance!! A friend of mine wrote an article about the details of the coverage and how it works and it was very informative. If you are interested in that info, please PM me about it. I am not sure if I can post it or not. Wishing you much success and glad you are taking charge of your health!!

Also, are you eligible for ss disability? If so, maybe you can apply for it. You wouldn't get medicare right away but you could in 2 years (yea, I know it won't help you now but better to apply since sometimes they deny the first application and it can be a long process from there....I was accepted the first time but that is unusual). And, with the shutdown, the process takes even longer. Just a suggestion that I thought of.

[Ailu]

Just realized I failed to update this thread!

We got the ACA insurance but to get a sleep study done was still $1000 copay. But then I became disabled and couldn't work anymore. Subsequently, our income drastically dropped, and when we reported it to the ACA, they informed us that we now qualified for a different plan which only had a $5 copay! So I had the sleep study a couple of weeks ago, and now having the titration study tonight.

More about the sleep results here:

Diagnosis-Finally-had-my-first-Sleep-Study-How-bad-am-I

and here:

Diagnosis-Trying-to-understand-my-report