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

[4betterO2]

2) Trying to see if I can rent an ASV or BiPap for a month from a local DME.

I would certainly do that if you want to try higher pressures! This way these higher pressures would be on IPAP only, without too much EPAP.
Be very careful when choosing your settings with these machines. You may try the auto settings for a while, but then experiment with manual settings: study about those and what they do before you apply them. Also allow a few days to sample each setting.

[4betterO2]

I find the nasal pillow so comfortable

what kind do you use?
do you have any problem with air trying to escape through the mouth? when I tried a nose mask, I felt like I was blowing bubbles thru my mouth, so I had to use a FFM.

[patrissimo]

A brief update here on my personal cpap log tracking thread.

- Masks: Someday I'd like to get used to a nasal pillows, it looks so light and comfortable. For now, I am sticking with the FFM. When i tried a nasal mask last night, even with mouth taping, whenever the seal of my tongue in my mouth would break (like when falling asleep...) my cheeks would puff out with pressure and I would feel a sudden startle that woke me up. Very disturbing.
- Pressure: from 5-10 starting range APAP, I am up to 10-14 after a month. I found that going from 5-8mm minimum decreased my AHI to below 1. I am continuing to increase pressure in hopes of reducing my flow limitation events. My 95% FL is 0.10 - 0.17, with spikes to 0.45 on many nights, with the bad periods usually corresponding with REM sleep. My periods of higher FL always correspond to visibly uneven breathing (for example, during low FL my Respiratory Rate graph will be steady at 13=16, during high FL it will bounce back and forth between 20-25 & 35-40!). I had some discomfort with higher pressures of 14-16 earlier, but I turned on EPR=1 and went up more slowly and have had no problems. My 95% pressure is usually pretty close to my max pressure, within a half point, so the machine does not have enough headroom to address what it sees.
- Positive changes I noticed: my nose no longer gets congested every night as I sleep. I notice more dreams. I seem to have a little more deep sleep (20% vs. 16% avg says Zeo). I have less anxiety about falling asleep. My family got a cold the last week and I was the only one who didn't get really sick, I had it in mild form (usually I get sick less than my kids but much more than my partner). Instead of being "tired and wired" and taking 1+ hour to go to sleep 1-2x/week, it has only happened twice in 4 weeks, and one of those was changing back to work schedule after the holidays.
- Things that haven't improved: nocturia/frequent wakeups (3-5x/night) - but there was 1 good night. Feeling exhausted during the day - but there was one good day. Feeling acid reflux in the morning. Chronic mild airway inflammation (post-nasal drip, etc). I still feel too tired to work effectively almost all the time.

My sense is that I am adapting and getting some benefit, though I am disappointed to not feel any better during the day. I try to focus on having had one good day in the last couple weeks, rather than 13 typically bad ones. To be fair, it has been a challenging couple weeks in terms of me being mildly sick and my kids being sick and waking me up at night a number of times to add external disruptions to be internal ones. My graphs of AHI, deep+REM sleep, and subjective sleep quality (1-5 scale) over time show significant improvements over the month, with a temporary drop earlier this week.

There is no question that CPAP sleep feels better, even if just mildly better, and that I am less anxious about it. But I also feel that it is pretty clear I have some residual SDB of the UARS variety, based on what I see in Sleepyhead. I hope that with time, I will feel better even if I can't address this. But I'm also trying to address it, so far by raising pressure without any luck. I'm not sure what else to do. The Zeo tells me my FL is worse during REM, but like Pugsy says, there are no actions to take based on that, I need REM. I am still taking low dose sleeping pills regularly, but not from the benzo/hypnotic family, I've only had those once in the past 10 days, and it was my worst night of sleep in a long time by far according to the Zeo (Deep & REM sleep each half of normal levels).

If I was waking up this often with no signs of residual SDB, I would do sleep-restriction, but I am reluctant to risk it at this point.

[-SWS]

- Things that haven't improved: nocturia/frequent wakeups (3-5x/night) - but there was 1 good night. Feeling exhausted during the day - but there was one good day. Feeling acid reflux in the morning. Chronic mild airway inflammation (post-nasal drip, etc).

Well, your UARS diagnosis entails high upper-airway resistance. If that diagnosis is accurate, then you also impose high vacuum pressure at the esophagus during inspiration. That UARS-related negative pressure at the esophagus can aggravate acid reflux. When that esophageal suction is extreme enough, the stomach acid can literally get drawn all the way up into the sinuses. At that point, the stomach acid can also enter the lungs, immediately as well as after the vacuum draw-----with the latter occurring during post-nasal drip. When the acid-reflux pathology gets that extensive, and isn't sufficiently acidic to induce heartburn, then I think the condition is called LPR:
https://www.google.com/search?q=acid%20 ... =firefox-a.

Consider trying measures tandem to CPAP in an attempt to better manage your acid reflux problem during sleep. The GERD and LPR processes can cause sleep arousals. Resulting UA inflammation will also heighten upper airway resistance, which is something anyone with UARS should try to avoid. Good luck with this, patrissimo.

https://www.google.com/search?q=LPR%20s ... =firefox-a

[Jay Aitchsee]

Patri, maybe you're trying too hard. Too many things at once. Maybe you should allow you're body to adjust to the changes you're making before moving on. For what it's worth, and I don't know how this fits with -sws's comments, but I've found that higher pressure isn't always better - often resulting in more leaks, centrals, and more disturbed sleep. I've also found CPAP to be less than disturbing than APAP. Though, APAP has been useful in titration. I would sacrifice some AHI for fewer disturbances. Anyway, it does seem you are making progress and I hope it continues.
Jay

[patrissimo]

Thanks -SWS. I have been diagnosed with GERD in the past, with an endoscopy showing some irritation of the lower esophagus. I had an RF procedure called the Stretta (one of the last before the company went bankrupt) to tighten my LES, which helped the reflux some. I took prilosec but it really didn't seem to do a lot, and I worry that stomach acid is important for digestion - just don't want it to go where it ain't supposed to![*] Just a couple days ago I tried raising the head of my bed, perhaps I will raise it a bit more.

My hope is that with the feedback loop between UA inflammation, resistance, GERD, etc. that even if the CPAP helps only partially, that will produce positive feedback that can move me slowly in the right direction. Any thoughts on managing UA inflammation besides reflux?

Jay - You are probably right, the more things you try the harder it is to know what is really affecting things. But I really want it to be better ASAP! I'm definitely interested in trying straight CPAP at some point. I'm keeping an eye on my leaks and centrals, last night was my first time with more than 2 centrals (had 4), but they are still pretty rare. I don't have the sense that the pressure changes disturb me, though I was bothered by a big pressure jump last week.

[-SWS]

I took prilosec but it really didn't seem to do a lot, and I worry that stomach acid is important for digestion - just don't want it to go where it ain't supposed to![*] Just a couple days ago I tried raising the head of my bed, perhaps I will raise it a bit more.

My thoughts as well, about focusing on keeping the fluid in the stomach during sleep rather than suppressing what is probably normal acid production. Your residual FL hints that your upper-airway resistance is probably heightened despite CPAP. And that means your diaphragmatic effort is probably going to be greater during inspiration to overcome that heightened airway resistance. That's why and when vacuum pressure at the esophagus is heightened for UARS patients. If you don't practice this already, consider an experiment whereby you restrict food and beverage consumption. The idea of the experiment would be to make sure there isn't food or beverage in the stomach during sleep to get drawn up by UARS's extreme esophageal pressure.

Also, CPAP and APAP deliver static pressure under the premise of dilating/expanding your upper airway to reduce that airway resistance. If static pressure is not yielding benefit (think nearly-inelastic & narrow passages in some UARS cases), then an approach using PS begins to make more and more sense IMO. The PS component helps to mechanically offload some of the work of breathing (WOB). And if resistance-based WOB is where your arousal mechanism happens to be, then PS just might do for you what CPAP and APAP couldn't. Of course, the PS approach entails a different set of caveats than CPAP/APAP. And PS doesn't work for everyone.

Any thoughts on managing UA inflammation besides reflux?

I'm hoping others can brainstorm ideas here. I seem to wake with pharyngeal dryness and some inflammation when I mouth-breathe. And I tend to mouth-breathe when my nasal passages are inflamed. So I have to stay on top of allergic rhinitis with nasal sprays during allergy season. A neti pot or other means of nasal irrigation might help----especially if you are experiencing LPR/GERD all the way into the sinuses. Hope the cpaptalk think tank can come up with more and better ideas...

[WearyOne]

Following this thread with much interest! I, too, have have UARS, with most of my sleep-related arousals being REARs. (Sleep study in 2007 RDI 19). But also had many non-sleep-related arousals as well. Not having insurance much at all since then, I've lived with the misery that is caused by waking up four or more times a night, which has recently gotten even worse. But now with good insurance starting 2/1, I already have an appointment set for the end of February with my sleep doc.

AHI is always under 1, but who knows what else is going in my my body and brain! I'm just wondering if all those awakenings are my sensitive body/brain waking me up before an event is actually bad enough to show up. Really depressing after years of this and it's getting worse. Fighting to stay awake, but then waking up after only an hour or so.

Patrissimo, even though we really need to try one thing at a time, I definitely understand wanting to try everything you can at the same time. When you're miserable and want good results so badly it's hard to be patient. Believe me, I understand.

[tiredintenn]

I took prilosec but it really didn't seem to do a lot, and I worry that stomach acid is important for digestion - just don't want it to go where it ain't supposed to![*] Just a couple days ago I tried raising the head of my bed, perhaps I will raise it a bit more.

My thoughts as well, about focusing on keeping the fluid in the stomach during sleep rather than suppressing what is probably normal acid production. Your residual FL hints that your upper-airway resistance is probably heightened despite CPAP. And that means your diaphragmatic effort is probably going to be greater during inspiration to overcome that heightened airway resistance. That's why and when vacuum pressure at the esophagus is heightened for UARS patients. If you don't practice this already, consider an experiment whereby you restrict food and beverage consumption. The idea of the experiment would be to make sure there isn't food or beverage in the stomach during sleep to get drawn up by UARS's extreme esophageal pressure.

Also, CPAP and APAP deliver static pressure under the premise of dilating/expanding your upper airway to reduce that airway resistance. If static pressure is not yielding benefit (think nearly-inelastic & narrow passages in some UARS cases), then an approach using PS begins to make more and more sense IMO. The PS component helps to mechanically offload some of the work of breathing (WOB). And if resistance-based WOB is where your arousal mechanism happens to be, then PS just might do for you what CPAP and APAP couldn't. Of course, the PS approach entails a different set of caveats than CPAP/APAP. And PS doesn't work for everyone.

Any thoughts on managing UA inflammation besides reflux?

I'm hoping others can brainstorm ideas here. I seem to wake with pharyngeal dryness and some inflammation when I mouth-breathe. And I tend to mouth-breathe when my nasal passages are inflamed. So I have to stay on top of allergic rhinitis with nasal sprays during allergy season. A neti pot or other means of nasal irrigation might help----especially if you are experiencing LPR/GERD all the way into the sinuses. Hope the cpaptalk think tank can come up with more and better ideas...

Pardon my ignorance, what is PS?

[-SWS]

Sorry for the oversight in my post, tiredintenn. PS is an acronym for Pressure Support. Pressure Support refers to the difference between inhale pressure (IPAP) and exhale pressure (EPAP) delivered by a BiLevel machine. The pressure transition from EPAP-to-IPAP offers more flow-type pressure than CPAP, and will thus better assist ventilation. BiLevel's and ASV's PS approach can each mechanically offload more work of breathing (WOB) than ordinary CPAP.

[jnk]

I wonder if Doc K is still recommending ASV for the traumatized, stressed, sensitive sleepers?

https://www.youtube.com/watch?v=Pk7k9p6SQ-c

https://www.youtube.com/watch?v=7fMki3KFRgg

https://www.youtube.com/watch?v=JWm7tT-ZNzE

Not just a doc, but also a patient:

https://www.youtube.com/watch?v=19NagIvQ4c0

[patrissimo]

My thoughts as well, about focusing on keeping the fluid in the stomach during sleep rather than suppressing what is probably normal acid production. Your residual FL hints that your upper-airway resistance is probably heightened despite CPAP. And that means your diaphragmatic effort is probably going to be greater during inspiration to overcome that heightened airway resistance. That's why and when vacuum pressure at the esophagus is heightened for UARS patients. If you don't practice this already, consider an experiment whereby you restrict food and beverage consumption. The idea of the experiment would be to make sure there isn't food or beverage in the stomach during sleep to get drawn up by UARS's extreme esophageal pressure.

Ok, I will try this. I've been on a diet for many years that focuses calories in the evening, so this is a big change for me, but it's quite doable. After reading Dr. Park's book a few months ago, I started the process of moving my calories earlier in the day. But when I got on CPAP, I stopped worrying about that because it seemed less important than optimizing my CPAP therapy which as y'all know takes a lot of work. I will prioritize it again.

Also, CPAP and APAP deliver static pressure under the premise of dilating/expanding your upper airway to reduce that airway resistance. If static pressure is not yielding benefit (think nearly-inelastic & narrow passages in some UARS cases), then an approach using PS begins to make more and more sense IMO. The PS component helps to mechanically offload some of the work of breathing (WOB). And if resistance-based WOB is where your arousal mechanism happens to be, then PS just might do for you what CPAP and APAP couldn't. Of course, the PS approach entails a different set of caveats than CPAP/APAP. And PS doesn't work for everyone.

Right, that makes sense. I don't know if this is relevant, but I had a bunch of lung studies done for some reason perhaps 10 years ago, and they said I only had about 75% the lung volume expected for my age, height, etc based on a CT scan. I have low peak expiratory flow performance even when I'm healthy. So with weak lungs and airway resistance, it would make sense for WOB to be relatively high for me.

I spoke with someone here by PM who was able to arrange a titration-only visit to Dr. Krakow's lab (not seeing Dr. Krakow himself), I'm going to look into that. I'm hoping he can use my Sleepyhead graphs to disqualify me from APAP (my FL graph has been getting slowly worse since I started, sadly, most likely because of a cold). Then I can have him try me on BiPap, and ASV in a single night to see what best normalizes my breathing.

Any thoughts on managing UA inflammation besides reflux?

I'm hoping others can brainstorm ideas here. I seem to wake with pharyngeal dryness and some inflammation when I mouth-breathe. And I tend to mouth-breathe when my nasal passages are inflamed. So I have to stay on top of allergic rhinitis with nasal sprays during allergy season. A neti pot or other means of nasal irrigation might help----especially if you are experiencing LPR/GERD all the way into the sinuses. Hope the cpaptalk think tank can come up with more and better ideas...[/quote]

Since my turbinate reduction a year ago, I can always nose-breathe, so I mouth-tape on xPAP. My nose does sometimes swell due to sickness or allergies. I use Flonase nightly, and I use the NeilMed sinus rinse when things are really bad, but it doeesn't feel like it helps. But now that I have data every night, perhaps I'll try a couple washes today and see if my FL graph looks any different tomorrow. Since I'm doing purely nasal breathing, perhaps breathe-rite or Nozovent would be worth trying as well.

[blueh2o]

Patrissimo,
Tracked you down. This is a good string of posts. I'm a little more simple minded in my approach. I would suggest that you need to give xPap more time even though I ditched it and switched to MAD. Also, I wouldn't put Krakow in front of Kezirian especially considering all the fluff in Krakow's book (lol, I still haven't got through it because I'm waiting for the substance). As you know, sleep restriction has helped me though I do feel like I'm in a rut. Fortunately, it's a much shallower rut than it was before the deviated septum/turbinate reduction, switch to TAP, and sleep restriction. I'm just worried that I need to restrict sleep further, say to six hours per night, and get stuck in a rut there? Also, trying a little meditation before sleep at night which hasn't seemed to make a difference since I've always fallen asleep quickly. But, I did get in the wake up every 10-15 minute cycle last night so I got out of bed to meditate (really just calm the mind/body) and slept better when I got back to bed. So...I'm still on the insomnia is as much of the problem as apnea theory. Still advancing the TAP so we'll see...

[patrissimo]

Thanks for the cross-forum jump, blueh20. While Krakow's book has a strong CBT focus (and overcoming denialism - not my problem any more), at his sleep center he has an unusually aggressive protocol for chasing flow limitations using BiPap and ASV which could be good for we UARS patients. I think it is worth a try given that my APAP data shows I still have visibly distorted breathing, especially during REM, with high FL, shallow and irregular respiratory rate.

There is a user here, 1041, who tried sleep restriction while still having SDB, and found it a very bad experience: viewtopic.php?f=1&t=85017&p=773283&hili ... on#p773283. My concern is that if I still have SDB, I will be reducing quantity without improving quality, and piling exhaustion on my already exhausted shoulders. If I normalize my breathing and still wake up frequently, I will definitely try it. If I can't normalize my breathing, even after trying Bipap/ASV, then I will probably try it. But I'm scared to try it now. Like what if sleep restriction increases my proportion of REM, which is when my breathing is the worst?

Anyway, I will continue giving APAP more time.

For your sleep restriction, you are supposed to be able to expand the time window after locking in the higher quality sleep, so you can get more quantity without compromising quality. Not just stay at 6 or 7 hours forever. I'd be curious to see your SleepyHead data from your xPAP days, I wonder what kind of breathing it shows? That nightly data from APAP + Zeo is a big part of my evaluation - it would be easy to put it down to insomnia if I didn't see my breathing get so ragged every REM cycle every night.

[49er]

I wonder what kind of breathing it shows? That nightly data from APAP + Zeo is a big part of my evaluation - it would be easy to put it down to insomnia if I didn't see my breathing get so ragged every REM cycle every night.

At the risk of sounding cynical, personally, I think Sleep Restriction Therapy is too much of a one size fits all type of solution though I realize it has benefited alot of people. Even if there aren't any SBD issues, insomnia could be due to many medical reasons that get overlooked in the process.

In my own situation, it looks like moving the time I take my vitamin D to late morning and slightly increasing the dose, may be the key to my ability to stay asleep on the machine. The other day, I was actually dreaming when I was rudely awakened by a mask leak after 3 hours. If that hadn't occurred, I feel I was on my way to great sleep. Last night, didn't go as well but for various reasons, I still feel I am on the right track.

Regarding UARS, since I felt that was an issue in addition to apnea even though I didn't have any solid proof, I decided that a straight cpap pressure would probably work best for me as I feel I need as few disruptions as possible. So I used my bipap machine (which can be run in the cpap mode) to titrate myself since it has more information about all events than the Devilbiss.

Once I felt that I was at the right pressure (8.5), I switched back to the Devilbiss. I was using that machine when I felt I would have had a great night of sleep if I hadn't been woken up prematurely.

By the way, I realize my information is very preliminary and I am not making claims about anything. I am just trying to point out that sleep issues are very complex and it takes an awful lot of detective work to figure things out particularly if your situation doesn't seem to fit standard medical situations.

It sounds like you are in a similar situation Patrissimo and that is why I am intently following your posts.

49er

49er