UARS, low numbers bad sleep, MMA, now on CPAP

[Better]

Not sure that my tongue is occluding my AIRWAY, even if it's not resting at the front of my mouth. I can't feel my airway, so no telling. Also, I'm not asleep. But if what you're saying is true, then a MAD wouldn't work for anyone, right?

MADs work by moving your jaw and hence tongue forward so the tongue has LESS chance of occluding your airway (as opposed to NO chance). They also widen your airway a bit too.
You don't have to feel your airway to conduct the test I proposed. All you need to feel is the air getting blocked as you try breathing through your nose. Breath through your nose normally, now let your tongue fall back so it rests against your soft palate/airway this should totally occlude your nasal breathing (unless I have a VERY narrow airway and other don't). Now repeat this test when you protrude your lower jaw forward as far as you can.
If you can occlude your airway like this when you are awake then it will happen without you trying when you are asleep as your tongue muscle relaxes and falls back. This is why obstructions are ALWAYS worse when you sleep on your back because gravity assist in pulling your tongue towards your airway.

[SleepingUgly]

Not sure I can do this... But I try not to sleep on my back for all kinds of reasons, that being one of them.

[patrissimo]

Hey all. I went to New Mexico last weekend, and had two sleep studies with Dr. Krakow, the first night trying to qualify for ASV and the second night using it. I wasn't able to qualify under the standard protocol, based on centrals, as I never had more than 1/hr the first night. Instead, as they increased pressure trying to normalize my breathing (using CPAP & BiPAP), I got bad aerophagia (especially on CPAP) and my breathing did not normalize. The 2nd night, I used ASV, and it was a very noticeable improvement. It wasn't perfect - maybe a 7.5/10 subjective sleep quality, while APAP is 6/10, no-CPAP post-MMA was 5/10, pre-MMA pre-CPAP was 3/10. But still very good, I am extremely happy. I felt sharper the next day than I have in many years, I blew through a crossword puzzle at lightning speed.

In terms of metrics, the first night I had 33 RERAs/hr, and the second night on ASV I had 5 RERAs/hr, which matched my subjective experience. This seems like pretty good evidence for Dr. Krakow's thesis, which I am now an enthusiastic advocate for, that ASV technology, with its faster reactions, and more sophisticated control system (maintaining volume rather than pressure), can better normalize breathing for UARS sufferers such as myself, not just those with central or mixed apnea.

I am now eagerly awaiting my machine (still negotiating with insurance & DME about coverage / leasing). I also discovered that I may have RLS - it doesn't feel like the descriptions I'd read, but it totally fits the definition, just presenting in a different subjective way. I had a few limb movement associated arousals, so that's another thing to work on, though it doesn't seem to be my largest issue.

Anyway, there is a lot more to say, and Dr. Krakow gave me a lot of other work to do on my reflux, nasal congestion, emotional processing, cushion replacement, and more to continue improving my sleep, but I wanted to post a quick summary as I know there are some fellow sufferers with similar cases to mine and I wanted to share the good news. Visiting Dr. Krakow was a great experience, he put a lot of time into my case, met with me for hours, and was very thorough in examining all aspects of why my sleep is unrefreshing. I hope to write more about it in the future.

[SleepingUgly]

Good news! What ASV pressures did he rx? How does your RLS present and what did he say to do about it?

[Better]

Hey all. I went to New Mexico last weekend, and had two sleep studies with Dr. Krakow,

That is a great breakthrough for you . Did Dr Krakow advise you how to deal with your aerophagia (or is it gastric insufflation ? - there's a difference !) as that prevents me from using CPAP to treat my RERAs. Instead I have opted for an AveoTSD plus nightly Afrin and breathe Right strips.

What is your ASV prescription ? i.e. EPAP (aka EEP), Max Pressure Support, Target ventilation ?

regards
Peter

[patrissimo]

Good news! What ASV pressures did he rx? How does your RLS present and what did he say to do about it?

Max PS 12.8, Min PS 4, Min EPAP 8, Max EPAP 15. If I understand right, that means my EPAP is 8-15 and my IPAP is 12 - 27.8? That's a much higher IPAP than I was ever able to tolerate on APAP (12), so it makes sense that it controls my UARS much better. There was no target ventilation - I think the machine just tries to maintain the breath volume it sees initially.

My RLS presents as a feeling, whenever I try to stay completely still (usually when going to sleep), that I need to move my body every few minutes. If I don't, I feel a building pressure in my chest like a slowly developing panic attack, like I'm not getting air, even though I'm breathing fine. The strength varies, I have perhaps 1 bad night a month where I need to move every 30 seconds, rather than every few minutes, and then it is very hard to go to sleep even with sleeping pills

I didn't realize it was RLS b/c the urge to move is not specifically in my legs, and in fact, moving my legs doesn't work as well at relieving the feeling as moving my whole body (rolling over usually). And the feeling of discomfort is in my chest, not my legs. But it perfectly fits the more general definition "uncontrollable urge to move some part of your body that happens while trying to stay still, is relieved by moving, and causes discomfort if you don't move." Getting a ferritin test for it. I don't think RLS is a primary problem, but it does feel like it is one of the barriers to getting off sleeping pills, it's hard to fall asleep naturally when I need to toss & turn.

That is a great breakthrough for you . Did Dr Krakow advise you how to deal with your aerophagia (or is it gastric insufflation ? - there's a difference !) as that prevents me from using CPAP to treat my RERAs. Instead I have opted for an AveoTSD plus nightly Afrin and breathe Right strips.

Well, ASV dealt with the aerophagia - I was able to tolerate far higher pressures on ASV without aerophagia. He is concerned that it may have to do with my airway shape, and wants me to see an ENT, or it could have to do with the reflux, and wants me to see a gastroenterologist.

As you probably know, Afrin causes rebound congestion, especially w/ frequent use, so be careful. Dr. Krakow also advised I try breathe-rite strips nightly for 90 days. But I want to get a baseline of ASV w/o the strips before I start that.

[SleepingUgly]

Weirdly, I was able to tolerate ASV on titration without aerophagia, and then I never could again. To this day, I do not understand what was different about that night than at home.

For RLS, test ferritin, B12, and magnesium.

[Better]

As you probably know, Afrin causes rebound congestion, especially w/ frequent use, so be careful. Dr. Krakow also advised I try breathe-rite strips nightly for 90 days. But I want to get a baseline of ASV w/o the strips before I start that.

Oh yes I do know this ! But when I found it gives me a better sleep I opted to use it despite the fact I am now physically addicted to it (the rebound effect is very real). Thankfully I am not needing to up the dose and I only take it just before retiring each night. The best way to cure the rebound congestion is to start the Afrin again ! A bit like curing a hangover by drinking more !
My medium term plan is to see an ENT (in November) who is very good as turbinoplasties and have him reduce my turbinates so I don't need the Afrin.

Re. Dr Krakow suggesting breath right strips when using a flow generator - I fail to see how they would benefit because the air serves to push out against the nares while the strips pull the nares outwards. Same effect - but one pushes the other pulls.

While your max pressure might be really high, it is unlikely that the actual pressures will even get close to that limit. In fact there is probably another setting you haven't mentioned or been advised of - which would be the max IPAP and could be say 20cmH2O. Even that is higher than your 12cmH2O Aerophagia limit but like I said above the actual pressures might not be much more than that. Additionally the waveform of an ASV (at least in the VPAP Adapt, VPAP Tx and AutoSET CS II ResMed devices) look like a sharkfin shape (think EPR but with MUCH larger pressure support), so you are unlikely to experience aerophagia if the peak pressure (IPAP) was 12 because it will only be at 12 for such a brief moment. It really depends on both your EPAP and IPAP values. In fact it could be something like:
if [EPAP+kx(IPAP-EPAP)] >12cmH2O, then you will cross your Aerophagia threshold. (where k=some value between 0 and 1, most likely about 0,5)

[patrissimo]

My insurer finally came through with ASV coverage, after the DME gave up & I persisted in bugging both of them. The DME thanked me for teaching them about the insurer's reimbursement process. So after 2 months, the insurer has approved my ResMed VPAP Adapt Auto (36037), and they will be covering my ASV for a 10% co-pay, even though I have no centrals, based on Dr. Krakow's sleep studies, recommendation for ASV, prescription, and the dramatic difference in my RERAs on ASV vs. xPAP.

I am lucky that my employer is a major customer of the insurer and they have dedicated customer service just for us, that was probably the main reason I got the coverage (as opposed to any clinical variables).

Scheduled to pick up the m achine next week, hope it does as well at home as in Dr. Krakow's lab.

[patrissimo]

I'm 5 nights into ASV now. It isn't a miracle, but I am consistently getting deeper sleep, more/longer dreams, and feeling better. I still wake up every few hours, but when I wake up I feel much more like I was asleep, where on CPAP (and even worse before CPAP) I felt like I'd been barely/lightly sleeping. The night is now more of a demarcation between the days, as opposed to everything just blurring together. My AHI has been about 0.3, vs my 1.3 average the last 6 months. (I know these are super-low numbers, but as I have UARS, I consider the AHI a proxy for my much higher number of RERAs, which ASV was able to greatly reduce in the lab). I haven't checked the data in SleepyHead yet.

I slept best the first night, but have only had one bad night - Thanksgiving - when I went to bed stuffed and had bad reflux, bad aerophagia, and bad sleep. I've had some mild to moderate aerophagia the last few nights as well, which is a bummer as I was hoping ASV would take care of that. Then again, I'm getting much higher peak IPAP from the ASV, so as far as "pressure per aerophagia" it's much better. Dr. Krakow had recommended that I look into my reflux/aerophagia, and it seems he was right.

My ferritin test came back negative (way above 50), so I am tentatively ruling out RLS, at least for now. I've had to tighten the mask hard once or twice during the night when the machine was up to high pressures and loudly leaked, which was annoying.

Anyway, I'm very happy with my move to ASV, it definitely feels like a super-CPAP to me, as far as my subjective experience. Hoping the improved sleep will slowly accumulate benefits over time.

[Better]

That is very encouraging patrissimo ! When I had aerophagia (actually more technically Gastric Insufflation), I even entertained inserting a esophageal balloon to stop the air being forced in .
phagia means swallowing (the air). insufflation means it is forced in under pressure (past the two sphincters) ! You can tell if it is the latter by waiting 30 mins with the pressure applied without swallowing and see if you start burping or not.

Anyway, it got so bad for me I had to find another solution for my RERAs which was the AveoTSD plus Breath Right strips and Afrin nightly. I'm getting my turbinates reduced soon to go off the Afrin.
I know you have had MAD but if your tongue still keeps dropping back causing the RERAs did you ever entertain trying an AveoTSD ? I need denture cream to stop it falling off 2 nights per week. If it falls off I straight away have a poor sleep. It is chalk and cheese for me.

[patrissimo]

wow, i guess i'm almost 3 months into ASV!

The ASV has continued to be a significant improvement over CPAP, I am very happy with it. I still wake 2-3x a night, still use 1/4-1 ambien each night, and occasionally have bad nights for whatever reason when I wake up 10x. But on most nights, my sleep quality is noticeably better than on cpap, and much better than without a machine. I feel like at the end of most weeks, I have a little less sleep debt than I started with, for the first time in...8 years maybe? 10 years?

definitely very pleased. my sleep is still somewhat fragile: congestion from a cold (which i get often in the winter, as I have young kids), reflux (after Thanksgiving was rather notable), or a flareup of RLS (while my ferritin test was negative and I havent been formally diagnosed, I do have the symptoms mildly and once or twice a month I have a bad night where i toss and turn constantly unless i take 2x-3x my usual sleeping pill dose), and other things give me bad nights of sleep on a regular basis. but my baseline sleep is much better, and even the bad nights are better (a stuffy nose with ASV is better than a stuffy nose w/ cpap is better than a stuffy nose w/ no machine).

So I still have things to work on, primarily reflux, relaxation, and congestion. But I have a lot more energy which is great. A year ago when I started cpap, I was in a really bad place physically, and over the course of that year, I've gone from 25% my previous energy levels to 80%. That wasn't all cpap, but I'm sure it played a huge role. So thanks to this board for inspiring me to get on cpap, and to Dr. Krakow for upgrading me to ASV.

[Better]

wow, i guess i'm almost 3 months into ASV! The ASV has continued to be a significant improvement over CPAP, I am very happy with it.

That is fantastic news patrissimo !! Good for you and your family.

[jawzz]

Anyway, it got so bad for me I had to find another solution for my RERAs which was the AveoTSD plus Breath Right strips and Afrin nightly. I'm getting my turbinates reduced soon to go off the Afrin.
I know you have had MAD but if your tongue still keeps dropping back causing the RERAs did you ever entertain trying an AveoTSD ? I need denture cream to stop it falling off 2 nights per week. If it falls off I straight away have a poor sleep. It is chalk and cheese for me.

Did you ever consider trying the Full Breath Solution? Seems like it would be more stable than the AveoTSD.

[Loreena]

Anyway, it got so bad for me I had to find another solution for my RERAs which was the AveoTSD plus Breath Right strips and Afrin nightly. I'm getting my turbinates reduced soon to go off the Afrin.
I know you have had MAD but if your tongue still keeps dropping back causing the RERAs did you ever entertain trying an AveoTSD ? I need denture cream to stop it falling off 2 nights per week. If it falls off I straight away have a poor sleep. It is chalk and cheese for me.

Did you ever consider trying the Full Breath Solution? Seems like it would be more stable than the AveoTSD.

It's a mouthguard that looks like it might work to keep the tongue out of the way. Why can't we buy it online? Or do we have to pay thru the nose at the dentist to get one?!