Frustrated with seeming OSA misdiagnosis. Can I ask them to re-read my study?

[radler]

I think the older auto bilevel auto machines have tidal volume data but let me go back and look at my software reports just to make sure.

The settings aren't really that complicated. Don't let Ti max or Ti min or trigger stuff scare you....most people will do very well with the factory defaults in those settings.

The older bilevels will be a little less costly.
Respironics PR System One Auto bilevel....make sure you get the model 760 and not the 750.
The S9 version would be the ResMed S9 VAuto

I have a PR System One Auto BiPap model 760 that has already been heated hose converted that I don't really need and I would be willing to sell it if you decided that you wanted to try it.
Complete unit including humidifier and heated hose, travel case....around 1600 hours of use.
$250 and that includes shipping within the USA.
Send me a PM if you are interested and I will give you all the details on its history and I can check actual hours.

Thank you! I am looking at another one near my house but will let you know. I can't find any info about them checking tidal volume but that might be overkill anyway if I'm checking SPO2.

[radler]

Hello again! I was finally able to get my new machine working but I have some questions.

I ended up purchasing the ResMed s9 VPAP Adapt for less than most of the bilevel machines I could find! I really like it so far, though it’s taking some getting used to. I only got all the parts for it last night and wasn’t able to sleep with it because I don’t think I have the right mask/mask size. I currently have the ResMed Airfit F20 full face mask. Some questions:

What causes the feeling of being suffocated when I roll on my side??? I feel uncomfortable with the ASV settings on while awake and prefer plain CPAP at a low pressure. However, that’s guaranteed to make me start gasping for breath as soon as I start falling asleep. It’s so bad I have to tear the hose off so I can breathe! It’s less dramatic/guaranteed on ASV mode, but I still wasn’t able to tolerate it due to feeling like I was asphyxiating. It hasn’t happened yet on auto ASV, but I was pretty awake by then. Still, I was encouraged that while the ASV modes were awful while awake (though they did make me realize how abnormally shallowly I breathe), they’re much more comfortable once I’m half asleep.

What should I check for this issue, and how? I’m guessing I need to experiment with masks and settings, but maybe I’m somehow blocking the exhalation port in my sleep? Are there valves I need to check? How? I’m not normally a mouth breather, so would it be bad to try a nasal mask so I can breathe through my mouth for a couple of seconds when those episode happen?

Is it normal for the mask to cut into my face and I just need a liner, or is the mask too big? I don’t understand how the mask is supposed to lie on my face and which parts are supposed to rest where and how they’re supposed to inflate. I get massive leaks unless I cinch the mask tight to my face. The medium F20 is just barely wide enough for my mouth but it either cuts into my chin or blows air into my eyes. Do I need like a small wide mask? Should I try one of the entire face masks? Will I be able to sleep on my side with it if so?

How do I stop my ears from getting full of pressure? And how to I stop the machine from freaking out on me when I stop breathing for a second to clear my throat? Should I be taking decongestants every night so I’m not choking from the constant post-nasal drip and mucus-y cough I have?

My RR is usually 8 even while awake, and my vt is around 2000. That seems unusual to me. Any ideas what’s going on with that? Do I need to recalibrate my machine?

Will most headgear and side parts work with most masks? Specifically, can I use the Airfit F20 for Her headgear with the Respironic Dreamwisp or comfortgel nasal masks? Can I maybe even jury-rig the frame to work with a nasal mask of the F10? How can I find out which mask parts will pop into which frames and connect to which elbows and whatnot, aside from trial and error? Google and the search function is failing me—maybe people here know which terms I need to search for? “Compatibility” just gets me results on which machines work with which mask systems, which is interesting but not what I need.

I currently have the machine set to these specifications based on the doctor recommending auto cpap at 5-12 cmH2O:
Min EPAP: 4
Max EPAP: 7
Min PS: 1
Max PS: 8
(So this should equal IPAP 5-15 cmH2O, right?)

I’m reluctant to dial the max pressure too high, given the max pressure of 12 on my prescription. I also don’t know if there are risks associated with too high a pressure, especially since that one study found risks for one group of extremely sick heart failure patients. Should I just suck it up and set it to the default auto settings? I don’t believe I’m having many if any obstructive events, just central hypoventilation, so what needs to go higher? EPAP, IPAP, PS?

Lastly, has anyone with centrals or hypopneas experimented with only wearing the Contec pulse ox watch and setting the alarm for <89%? <85%? I’m not overly concerned with having hypopneas in general, I just don’t want my oxygen levels dropping and staying low. If I can get the software working on my Mac, I may experiment with how well I sleep with just the alarm vs. the S9.

Sorry for all the questions. I’m just so overwhelmed by all of this. I know self-treating isn’t ideal, but I’ve successfully done it most of my life and am encouraged by my experience so far, even if there are a lot of components to learn about here (literally and figuratively)!

[Jas_williams]

I think you should set you min Epap higher to 5 then set min pressure support to 3 Max Epap to 12 you will then get more airflow to combat the feeling of lack of air. Epap will only rise slowly to treat obstructive Apnoeas as needed. The PS will only rise on a breath by breath basis if you have central apnoea which we don’t believe you have so prob will stay at 3


If the machine freaks out at you for not breathing blow back at it hard it will back off for another 3 minutes and if you breath evenly at a comfortable rate it will then follow that

[radler]

The machine basically always runs at the min EPAP and maximum PS unless I’m being very deliberate and forceful about my breathing. I have yet to have a full night’s sleep with it, but apparently I breathe so slowly it starts freaking out and raising the PS really quickly. Very distracting.

[radler]

Well, I could only sleep for about two and a half hours before apparently taking the mask off in my sleep, but I had an AHI of .4 during that time! My original was an average of 16.5 an hour and apparently I had roughly that amount every single hour I was asleep, so if the .4 is true, I’m thrilled! I think my settings were AutoASV with EPAP 4-7 and PS 2-7 and it was pretty comfortable. Excited to look at the OSCAR data when I get home from work!

I found a lot of my problem was that I was so freaked out by the machine that I was breathing more heavily/quickly/deliberately the first few minutes of wearing it, so when I started to breathe normally, it was extra sensitive to that. Am I confused, or is there also a “backup rate” calculated by the machine in the first few minutes of use as well as tidal volume and whatnot? Either way, since my respiratory rate while awake is normally 8-10 and fairly shallow, I found the machine a lot more comfortable once I adjusted to it when it first came on and started breathing normally to start with. That seems to give me the extra time I need between breaths to swallow or clear my throat or cough, which I need to do every other breath or so due to my mucus issues, lol. I understand that ASV is not ideal for hypoventilation, but a quick glance at my O2 stats for last night tells me the ASV did a great job of preventing desats too! I’m cautiously optimistic that maybe these low pressure settings will be perfect for me.

I have some nasal masks on the way (Respironics Dreamwear and blue comfortgel?) so I think those will be more comfortable on my damaged jaw, especially for side sleeping. I think I can make this work! I know my dysautonomia and lung issues are causing some kind of sleep breathing issue that is probably worth treating, even if I’m not sure exactly what the problem is, and my O2 levels and AHI in that short test are so encouraging! I would love to wake up feeling refreshed for once and be able to wean off the sleeping pills! I’m glad to have the knowledge I’ve gotten from these boards so I can get effective treatment quickly instead of having to wait on doctors and insurance and get more discouraged in the meantime.

[Pugsy]

is there also a “backup rate” calculated by the machine in the first few minutes of use as well as tidal volume and whatnot?

Yes, there is a back up rate calculated by the machine which is why people need to try to breathe normally.
It's not limited to calculating at the beginning of the night though....it can do it during the night as well if the breathing changes are prolonged.

It doesn't alter anything to deal with tidal volume though.. ASV can't do that...it will record tidal volume but it won't change any settings to try to alter tidal volume. It just can't...now there are machines where we can set parameters for tidal volume and the machine will try to maintain those parameters but ASV can't do it.

[radler]

is there also a “backup rate” calculated by the machine in the first few minutes of use as well as tidal volume and whatnot?

Yes, there is a back up rate calculated by the machine which is why people need to try to breathe normally.
It's not limited to calculating at the beginning of the night though....it can do it during the night as well if the breathing changes are prolonged.

It doesn't alter anything to deal with tidal volume though.. ASV can't do that...it will record tidal volume but it won't change any settings to try to alter tidal volume. It just can't...now there are machines where we can set parameters for tidal volume and the machine will try to maintain those parameters but ASV can't do it.

Okay, excellent! That’s what I was thinking. So autoASV tracks respiratory rate continuously and checks for and treats central and obstructive events based on an autoset backup rate/PS adjustment and EPAP adjustment respectively, and it’s iVAPS/AVAPS that treats based on tidal volume for physiological hypoventilation/apneas such as neuromuscular weakness disorders and obesity hypoventilation. Right? So if I do well on ASV or autoASV but not straight cpap, and my machine is detecting centrals and unspecified hypopneas and low respiratory rates but tidal volume is generally normal otherwise, I can probably conclude my issues are neurological rather than physiological or strictly obstructive, yes? Fingers crossed that I got the perfect machine for my needs. Either way, I’m extremely glad I got a machine that monitors for centrals and tidal volume so I can bring that data to my doctor! My PCP (the one who strongly suspected central hypoventilation in the first place) is pretty smart and willing to listen and learn, so I bet she will prescribe me a new autoASV or VAPS machine and justify it to insurance if I can bring her the right data.

[Pugsy]

o autoASV tracks respiratory rate continuously and checks for and treats central and obstructive events based on an autoset backup rate/PS adjustment and EPAP adjustment respectively, and it’s iVAPS/AVAPS that treats based on tidal volume for physiological hypoventilation/apneas such as neuromuscular weakness disorders and obesity hypoventilation. Right?

Correct. ASV can treat either obstructive or central apnea or both. If someone doesn't have any centrals then it won't do what it normally does for centrals and will just essentially act like apap with auto adjusting to deal with obstructive stuff but respond a little quicker.

I used the same model you got for couple of years simply because I liked the ease of breathing it gave me along with the fact that the slightly faster response capability allowed me to use a much lower minimum EPAP than I needed with regular apap or bilevel machines.
I could do the higher pressures easily enough but it was a lot more comfortable starting out the night at lower pressures and the more comfortable I am the better I sleep. I would see it respond to a central every now and then with a big burst of PS but since my main issue was always plain OSA the number of centrals I had was rare.
It's normal to have a central every now and then...no cause for alarm. Centrals are only a problem when present in large numbers causing desats or they keep causing the person to not be able to sleep. So I never worried about an occasional central and/or response by the machine to it.

[Jas_williams]

Good job on you first night on the machine as your body gets used to having the Alien on your face you will find you sleep without taking the mask off. Post up some graphs when you get a chance it will be interesting to see.

[radler]

o autoASV tracks respiratory rate continuously and checks for and treats central and obstructive events based on an autoset backup rate/PS adjustment and EPAP adjustment respectively, and it’s iVAPS/AVAPS that treats based on tidal volume for physiological hypoventilation/apneas such as neuromuscular weakness disorders and obesity hypoventilation. Right?

Correct. ASV can treat either obstructive or central apnea or both. If someone doesn't have any centrals then it won't do what it normally does for centrals and will just essentially act like apap with auto adjusting to deal with obstructive stuff but respond a little quicker.

I used the same model you got for couple of years simply because I liked the ease of breathing it gave me along with the fact that the slightly faster response capability allowed me to use a much lower minimum EPAP than I needed with regular apap or bilevel machines.
I could do the higher pressures easily enough but it was a lot more comfortable starting out the night at lower pressures and the more comfortable I am the better I sleep. I would see it respond to a central every now and then with a big burst of PS but since my main issue was always plain OSA the number of centrals I had was rare.
It's normal to have a central every now and then...no cause for alarm. Centrals are only a problem when present in large numbers causing desats or they keep causing the person to not be able to sleep. So I never worried about an occasional central and/or response by the machine to it.

Yeah, the occasional central doesn’t concern me! It’s just the kind that happen excessively and make it so I can’t sleep or so I wake up every two hours (and then can’t get back to sleep) that bother me. I’m also not thrilled about hypoventilation and desats, so I hope I will find my sweet spot soon.

[radler]

Made it almost four hours last night. Can anyone help me decipher this? What happened from 3:05 to 3:53 AM? I'm thinking I might raise my PS min to 3 and PS max to 9 or 10, but capping the EPAP at 6 (since it didn't really go much higher than that anyway). Good idea? Bad idea?

Also, any idea why my respiratory rate was 8-12 almost the whole night two nights ago, but around 10 to 23 most of the night last night? I know my data is too scant to really do much with it yet, but I'm eager to get my settings fixed up properly ASAP!

[Jas_williams]

Between 3:05 and 3:54 you were breathing very smoothly and evenly so the machine was doing nothing. Before and after that it was increasing PS often to try and even out your breathing

[radler]

Ahh, so I should try to replicate the conditions during and right before?

[radler]

Just to update:

I haven’t been using the machine due to the moderate to severe facial pain the masks have been causing me. I even started having migraines for the first time in my life. But I finally got hold of the Dreamwear nasal cushion, and WOW!!! What a difference. I slept so soundly even on half my usual dose of temazepam. I may try the full mask for it again in the future if I get a cold, but my poor damaged jaw needs a break, I think. I was so freaking comfortable for once! I also lowered my EPAP to 4-6 and my PS settings to 2-7.6. I was worried it would be too low, but I slept beautifully and woke with an AHI of .4. One event every two hours is lower than average even for a healthy person, right? I’ll happily take it!

[zonker]

But I finally got hold of the Dreamwear nasal cushion, and WOW!!! What a difference.

dog-joy.gif

good to hear!!