Chest/Lung Restriction - Impact on CPAP use?

[pkersey]

I'm having a heck of a time getting used to my CPAP.

One thing I don't know if the sleep professionals considered was that I have an advanced case of Ankylosing Spondylitis. So I have a lot of fusion and restricted motion in my thoracic spine and rib cage. I can definitely feel it if I draw in a deep breath.

I finally have a mask that seals well (AirFit N30i) but I have had big aerophagia problems when I fall asleep with it on. So now I'm just trying to use its during the day. Pressure is currently set at 9 with EPR 3 ... I can only make it about 20-30 minutes at a time!

I'm not sure why it's so difficult for me to use even for that limited amount of time. I also get sort of light headed (I don't quite know how to describe it) and sometimes an odd feeling in my fingertips. I'm ordering a Wellue O2 ring tomorrow to see if something is going with my O2 levels.

Are there any indications for CPAP based on having restricted lung capacity?

Feeling really frustrated!!

[SarcasticDave94]

It would help us answer your questions if you would have OSCAR to supply sleep therapy data, and your sleep study diagnostic test results. HIPAA law permits you to request and receive it.

Now I'm seeing you list straight CPAP of 9. This means there's no exhale relief by way of a pressure range and there's also EPR on your AutoSet. Having a range of pressure and EPR may be able to help some. Unless there's a specific medical reason not to, I'd consider getting a range of pressure with EPR.

Medical issues that affect breathing can certainly complicate things. Do you have breathing issues while awake as well? Other machines are specialized and might need discussed depending on your circumstance.

[pkersey]

Hi Dave,

Thanks for your reply.

The CPAP is set at a fixed pressure of 9 with EPR at 3.

I'm really not using the machine enough to generate any useful Oscar data. Last time I slept with it was for a 30 minute nap and I woke up with all sorts of aerophagia. That's why I'm trying to get used to it during the day, while watching TV.

As far as sleep studies, I had both in home study and in lab study. I can upload both, but the in-lab split study was a disaster. I generally have bad anxiety and my anxiety was totally off the charts that night. I did sleep for a short while in the lab with my teeth clenched and all my muscles rigid ... I'm not sure if I have any confidence in the results. If you think I should upload the in lab results anyway, I can.

In both tests my AHI was around 30.

I don't feel like I have breathing issues during the day! I'm eager to get the O2 ring and wear it all day and night to see what it says.

As far as medical issues, I have 1) restricted lung expansion 2) kyphosis with a fused anterior longitudinal ligament in my neck 3) nasopharyngeal reflux.

All of those issues might be of concern. Also, if I try to fall asleep sitting up I will immediately choke and wake up -- I only recently figured out that isn't normal with sleep apnea.

[SarcasticDave94]

OK that's fine without the test results. Of the ones mentioned, I'd think the lung issue to be the bigger problem. I'm still kicking around the idea that maybe using the EPR and an auto range to leverage more into the lungs. It sounds like in some ways you should be on iVAPS ventilation or something like that.

[pkersey]

OK that's fine without the test results. Of the ones mentioned, I'd think the lung issue to be the bigger problem. I'm still kicking around the idea that maybe using the EPR and an auto range to leverage more into the lungs. It sounds like in some ways you should be on iVAPS ventilation or something like that.

I didn't feel like I could tackle all of these health issues until recently. it's a long story but I finally got properly diagnosed and got on a mental health med that actually does something positive as far as leveling out my lows. So now I feel like I can handle things better..

I got a referral for an ENT last week. That might give me some more info.

Also, yesterday I decided I really need to see a pulmonologist. I'm not sure why no doc ever suggested that.

So, I'm hoping I can get some more clues as to what's going on.

In the meantime, for the purposes of trying to wear the CPAP while watching TV, would it be safe to change the AirSense to an APAP setting of 5-9 with the EPR still at 3? The last respiratory therapist I saw suggested that.

Also, another question: let's say I could manage to sleep with it on those settings (APAP setting of 5-9 with the EPR still at 3) and it reduced my AHI somewhat ... would I feel any better even if my AHI wasn't as low as it should be?

Really appreciate your help.

[Gideon]

What kind of doctor prescribed your CPAP machine.
You, IMHO, NEED a pulmonologist!
Your symptoms as stated above, "restricted motion in my thoracic spine and rib cage. I can definitely feel it if I draw in a deep breath"

When you lack the capability of breathing properly you need a higher degree of breathing assistance. A brief search on your condition led to no mention of CPAP in any of its forms as a treatment. If it is as bad as you allude to I suspect you would need a BiLevel such as and ST. Do note that your aerophagia would likely worsen with a BiLevel.

[Sleeprider]

Once again I agree with Gideon. The manufacturers of these devices have listed the intended uses for the equipment and you are clearly someone that would benefit form either a standard bilevel or an ST. The bilevel machine is capable of providing higher inhale pressure and lower exhale pressure. The ST (spontaneous/timed) does this, but adds a timed cycling from exhale to inhale. Either would be a significant improvement in comfort, and the ST will trigger a breath when you are unable to do it. If you are interested to learn the conditions that Resmed recommends their machines be used to treat, read the following guide with a focus on VPAP ST (I think about page 38). This will give you more to discuss with your doctor. https://document.resmed.com/en-us/docume...er_eng.pdf

Even if you don't read the clinical titration protocol, tell your doctor about your discomfort. There are much better solutions that can support your inspiratory effort and improve tidal volume.

[pkersey]

What kind of doctor prescribed your CPAP machine.
You, IMHO, NEED a pulmonologist!
Your symptoms as stated above, "restricted motion in my thoracic spine and rib cage. I can definitely feel it if I draw in a deep breath"  

When you lack the capability of breathing properly you need a higher degree of breathing assistance.  A brief search on your condition led to no mention of CPAP in any of its forms as a treatment.  If it is as bad as you allude to I suspect you would need a BiLevel such as and ST.  Do note that your aerophagia would likely worsen with a BiLevel.

Thanks for the feedback! I'm messaging my doctor tonight for the pulmonologist referral.

The CPAP was originally prescribed by an internist, who wasn't managing my care very carefully. I did see two sleep specialist MDs after that, but I didn't mention the lung capacity issues to them. At that time, I was still fooling around with full face masks that I never managed to get to seal properly.

I only started thinking about my lung capacity issues recently, when I started trying to use the AirFit N30i (first nasal mask) ... now the CPAP feels really different because this is the first mask that sealed 100%. As I mentioned, it's really difficult even to sit and watch tv with it.

I had never heard of an ST so I'll start reading up on that!

I'm still not sure part of this isn't my neck abnormalities. I only figured out recently that it's not normal to immediately choke awake when I fall asleep sitting up.

Question: I may have the opportunity to do a "sleep endoscopy" with a very qualified sleep surgeon. Do you think that might be helpful?

[pkersey]

Once again I agree with Gideon.  The manufacturers of these devices have listed the intended uses for the equipment and you are clearly someone that would benefit form either a standard bilevel or an ST. The bilevel machine is capable of providing higher inhale pressure and lower exhale pressure.  The ST (spontaneous/timed) does this, but adds a timed cycling from exhale to inhale.  Either would be a significant improvement in comfort, and the ST will trigger a breath when you are unable to do it.  If you are interested to learn the conditions that Resmed recommends their machines be used to treat, read the following guide with a focus on VPAP ST (I think about page 38).  This will give you more to discuss with your doctor.  https://document.resmed.com/en-us/docume...er_eng.pdf

Even if you don't read the clinical titration protocol, tell your doctor about your discomfort. There are much better solutions that can support your inspiratory effort and improve tidal volume.

Okay, it's about impossible to concentrate with that Boston Terrier staring at me. What a face! I had to put my Boston down last summer. it was time to let her go. I told her wherever she went I'd be right there with her ... and she's still with me in spirit so it's all as it should be.

I'm trying to figure out which part of the breathing cycle feels so difficult. I think it's the exhale, so the BiPAP makes sense to me. I wasn't aware of the ST until now and I'll start reading up.

I'm wondering if I should keep practicing with the CPAP (while watching TV), but lower the pressure. I don't know enough to know if that's safe. I was thinking either lower it to 5 fixed with the EPR still at 3, or maybe 5-9 variable with the EPR still at 3. Also, If I could manage to fall asleep at those settings, would it help a little bit even though it wouldn't resolve all the apnea issues?

Thx for all the help I'm getting. This is really excellent.

[SarcasticDave94]

If you think the PAP usage is helping in any way, I'd keep trying it.