I cannot fall asleep with my bipap/home ventilator. Hypoglossal nerve stimulator?

[Sleeprider]

Not trying to load up your sleep accessories. If the leaks are really bad, it can be the wrong mask or size, but if it's because your mouth gapes open, then you have to target that. You could easily get into a mask that simply doesn't work if you just resize to accommodate that maw of yours.

[Jay51]

Thanks again Sleeprider.  I think it could be both - the mask is a little too small; and I definitely open my mouth wide at night.  My gut tells me that I open my mouth so wide because I cannot breathe out of my nose.  I am going to work on both.  

The continuously recording nightly spo2 and heart rate monitor arrived yesterday.  Last night I slept all night with the Trilogy Evo on and full face mask.  This is the result.  I apologize that this is the only treatment data I have so far (I have a home sleep study and overnight clinical polysomnography though posted here).  The Trilogy Evo encrypts its data, and it is not compatible with OSCAR.  

This seems much improved to me.   It may have been 5 or 10 years or more since I have kept my overnight spo2 above 90 all night.

 Lofta home sleep study last April had my lowest spo2 of the night at 78.   AHI was 42.5 or so.  

Clinical Polysomnography last June had me at 32.4 AHI.  CPAP trial looked like I dipped close to 80 spo2.  Bipap trial looked better with lowest dip about 90 or so.  

SPO2 looks like a pretty good gauge.  My guess is that AHI correlates pretty well with it. There is probably no way to guess my AHI last night without OSCAR data.  

Many thanks for all the help getting me this far.

[Jay51]

Last night I had to experiment and see how I did in the recliner with the large cervical collar and not using the Trilogy Evo at all during the night.  The results surprised me.  They look very similar to yesterday's post when I used the Trilogy Evo all night.  More drops of 3% and 4% of SPO2 during the night, but didn't look that bad to me personally.  Only once a drop below 90%.  I am wondering if that was a major positional thing or a central apnea issue that caused this?  

Of all of the minor hacks and experiments I have tried, moving to the recliner (with the soft cervical collar) seemed to help me the most.  While sleeping in bed on my back, I would wake up on average about every 2 hours each night (with or without pap).  The 1st night I slept in the recliner with the soft cervical collar, I went 5 straight hours asleep.  The next night I almost made it 8 straight hours, but a noise woke me up at 7 straight hours.  The nights fly by in the recliner with the soft cervical collar and no pap. I wake up either once or not at all during the night.  I think sleeping on my stomach could be even better, but I cannot sustain that because of pain in my forehead and neck.  Also, sleeping sitting upright in a chair could be best of all, but my back could not take it.  At night (or when laying down for long periods of time) the vertebral disks between the vertebrae rehydrate with H2O, etc.  A person usually gains 1/4" to 1/2" to a full inch of height in the morning from this process).  

When using the Trilogy Evo, I wake up multiple times during the night (5 to 10 times or so).  Lately, the mask seems to be the culprit.  If I could get the mask just right, I know I could sleep at longer stretches with the pap.  In the morning after 8 hours of pap therapy, my stomach hurts for about an hour to an hour and 1/2.  Bloating and gas.  Completely fine and gone after then though from the aerophagia.  

Both nights (with Evo and without) cardio is much improved.  No tachycardia since making the permanent move to the recliner and permanent nightly soft cervical collar.  

I feel about the same between a night with pap in the recliner and collar vs. a night in the recliner and collar with no pap.  

When I saw my home sleep study (severe OSA and mild CSA) and my clinical polysomnography (2:1 ratio CSA to OSA) by plan was to try to combat the major obstructional issues and that would stop a large bulk of my problem.  It seems like when I have a major positional obstruction (that no amount of air can open), my SPO2 takes a nosedive to low 80's to even high 70's.  My heart goes into tachycardia also (155 heart rate was recorded on my clinical polysomnography).  The 2nd major thing I noticed was that the introduction of air into my system (the clinical polysomnography) caused my mild CSA to get much worse (went to severe category).  No air at all is much better for my CSA than the CPAP and BIPAP was. But the ASV should bring my centrals close to zero and combat the OSA.  Then I have the hypoventilation issue.  The Triology Evo seems to be great for that.  And lastly, by experimenting with my nasal pillow mask, I really believe I have some major blockage at night somewhere between the outside nostrils of my nose and the bottom of my throat that hurts and stops my nasal breathing to such a point that I become a 100% mouth breather.  Wherever that is (nasopharynx, etc.) 

I have a decision to make and I am going to make the safest choice.  I see my PCP on Monday.  I can show her this data from the other night with the Trilogy Evo and I am sure she will write script for 90 days for Evo.  I could focus on the negatives of the Evo (still waking up 5-10 times a night and major aerophagia) and show her the brochure for the Resmed ASV, and I believe she would write a script for the ASV.  My 3rd option is to show her both of these SPO2 and Heart Rate charts and say that I do just about as well with no pap (and ask her for supplemental oxygen at night too.)  I think she would go for this also.  

I guess I will push for the Evo and supplemental oxygen.  The Evo has a port for supplemental oxygen, or I could rig something else up to my mask.  I read the thread yesterday on the many different ways to get supplemental oxygen to a mask.  Great thread!  Very helpful to multiple people!  I will experiment with the Evo and supplemental oxygen, and experiment with supplemental oxygen and no pap using this handy little spo2 and heart rate monitor.  

I have found multiple Resmed ASV's (the older S9 Adapt and even a S10 for under $500 shopping online).  I could easily purchase one of these and experiment with it also.  If I chose not to use it, I could put it right back up on the market for the same price I paid for it and someone else can use it.  All I would have to do to get permanent Resmed ASV insurance coverage is demonstrate to my PCP the effectiveness of using it.  

I am the kind of person who does not like to make decisions because I hate being wrong.  I try to let decisions make themselves if possible.  I love multiple points of view though and lots of reviews to read also when I am forced to make a decision.  I realize the opinions expressed here are not intended to be medical advice.  Comments welcome, but I don't expect any.  I guess I have my plan in order and writing this helped me see the way I need to proceed from here.  I am in no way the typical sleep apnea patient either (I have CSA, hypoventilate as per my RT) and have just discovered some type of nasal issue at night that completely stops all nasal breathing and I become a 100% mouth breather).  This combination is why it has taken me so long to get everthing right.

[Sleeprider]

Getting restorative sleep is the goal of treating sleep disordered breathing. If you can maintain reasonable SpO2 by using an alternative, comfortable approach, that's great. Your last experiment seems to show very good stability and you slept.

[Jay51]

Thank you very much for that Sleeprider.  You recommended I needed an attitude adjustment towards pressure when I first came here.  That is exactly what I needed.  Dave (Sarcastic) pushed me towards cardiac care and gave me great advice, too (especially listen to my body how it reacts to changes in my therapy).  

I am going to look at my situation from a different angle.   I have 3 solutions to my specific (and very unique) sleep disordered breathing problem now.  I am going to view this as a luxury problem (a nice problem to have).  One solution I got from my RT (Trilogy Evo),  but 2 solutions I found here (soft cervical collar {and recliner}; and ASV).  My problem is impatience with the process.  My insurance has paid for everything so far also (except for small copays here and there).  

I read Dave L.'s thread all the time (compliant for 35 years).  He is still making minor hacks to masks, slight pressure changes, etc. after 35 years to get the best therapy.  Still learning.

[Jay51]

I had to post again after last night's experiment.  Last night was in the bed with a large wedge pillow.  I propped up the head end of the wedge some more to about a 45 degree angle.  I switched to the xl cervical collar like you hinted at the other day Sleeprider, too.  This collar is very snug, but I cannot argue with the results.  It keeps getting better.  Sleeping in bed with a wedge pillow is the same concept as in a recliner, but much more practical and an easier change.  I did not use the Trilogy Evo last night either.  No supplemental oxygen either.  Slept all night not waking up once.

[SarcasticDave94]

The SpO2 chart looks pretty good. I'd say see how it trends.

[Jay51]

Thank you for that Dave.  Here was last night.  Trying to establish a trend.  Hopefully a permanent trend.  Last 3 consecutive nights with no Trilogy Evo and xl cervical collar and either recliner or bed with 45 degree wedge pillow all look good.  2 night's ago and last night were in bed with the 45 degree angle wedge pillow; and look better than the recliner.  The headrest on the recliner pushes my neck forward some (like sleeping on a large pillow).  The wedge pillow is flat and keeps my neck straighter (like sleeping on a very thin or no pillow at all).  XL cervical collar basically prevents any movement, but that seems to keep my airway open even better at night.  The higher I can increase the angle of the wedge pillow, the better also.  

Last night could have been skewed a bit because it was a very nice 80 degree day here and sunny and I was outside a lot and very physically active all day and was totally exhausted when I went to sleep.  

The RT came by my home yesterday afternoon.  I showed her the last 3 nights of data.  She agreed that the positional changes I have made with the wedge pillow and xl cervical collar have made a major improvement in my OSA.  She said, "you know you still have CSA though."  I said, yes, but my CSA must be very mild at worst because my SPO2 remains so high during the night (very close to normal).  Her response to that was, "right now your CSA is very mild."  

After more discussion with the RT she possibly could have misinterpreted me as a hypoventilator (very swallow breather).  One morning in December she came here and watched me in the morning for 15 to 30 minutes as I was trying to fall asleep and she made that conclusion.  (I was laying on my bed flat on my back on my very large cervical pillow) - about the worse position possible.) I am not the worst OSA by pure volume numbers - many people have a higher AHI than mine and much higher total number of  OSA's and Obstructive hypoapneas.  Mine seems to be unique in the speed in which I totally obstruct.  Possible in less than a minute when I lay down  flat on my back I can totally obstruct.  Usually in a few minutes.  During the clinical polysomnography the RT said just as I was about to fall asleep I stopped breathing totally.  Stopping the major positonal OSA has kept my night SPO2 much more normal and I believe is keeping me from going into tachycardia also (the heart rhythm med and beta blocker are probably helping also). 

The set ups of the  last 3 nights beats the Trilogy Evo in both effectiveness (therapy) and comfort (tolerability, compliance).  I have tried 5 machines so far (cpap - in poly; bipap- in poly; ST- A at home, Astral (at home) and Trilogy Evo (at home).  Every one of them has made my CSA worse, not better.  obviously the ASV is the only machine left for me.  I believe it would completely stop all centrals.  Could I tolerate it?  Do I need it at this time when my CSA is so mild and my SPO2 stats are good without any pap?  

I feel that I was misdiagnosed with Cheyne Stokes respirations on my home study, too.  Maybe not, but from what I know now, I think it is a real possibility.  

One other thing is that I sleep with a custom seat cushion under my bottom in bed at night, too.  I have a seat cushion with 2 holes in it where the ischial tuberosities are located (the 2 sits bones).  Also the cushion has a cut out hollow place for my tailbone - so no pressure on my tailbone.  I could not sustain sleeping on the 45 degree angle wedge pillow in bed without this cushion.  My hips and lower back could not take it all night.  

I have PCP appointment on Monday. I think I can rule out the Trilogy Evo at this time as a long term solution.  Either this current set up (and possibly with supplemental oxygen - 2 liters or so by nasal canula all night) or the ASV appear to be right for me.  

I can't take credit for the positional changes.  I learned them all here (try thinner pillow 1st;  proceed to cervical collar;  get correct size of cervical collar; then try recliner or wedge pillow to let gravity start to aid me instead of hindering me.  It seems like the vast majority of people can sleep just fine laying on their backs in bed at night with their pap machines.  I am happy for everyone that can do that.  I tried it and it didn't work for me personally.

[SarcasticDave94]

The 4 SpO2 reports look good with a trend of being better each consecutive report. The first one presented was worst due to a few spikes down to 90, but even that is ok in your case. The last was probably best as it didn't drop but very little. Nice flat ish lines are good to see.

The ASV is the only machine that actually treats and addresses Central Apnea. None of these others can treat CA. I can't say it's needed or not for you as we don't see data from the Trilogy Evo. I am aware you can't get this so it's just not available to you or us.

Centrals will be consistently inconsistent period. And that's for anyone that has them, even treatment emergent CA as applicable. This makes it hard to diagnose and treat and then it more or less requires a lab diagnostic or titration to get doc onboard. In your case this RT will help in this if necessary though.

[Sleeprider]

Your progress has been very good, not only for apparently resolving some deep oxygen desaturations, but your tolerance for the therapy and innovation in making sleep comfortable. You faced a lot of issues that I have not seen before and have steadily applied yourself to solving them. Very satisfying. I don't know if ASV is the ultimate solution, but glad to see the progress you have made.