UARS and no relief from CPAP - help please!

Hi, I am getting desperate would appreciate any suggestions for treating what I think is a UARS problem.

Early in 2012, I was told to get a sleep study after a CBCT scan showed that I have an extremely narrow esophagal passage. I was coincidentally in the midst of some persistent fatigue at the time, meaning no physical energy. I had recently had a minor sore throat, so it was no big surprise as that can happen to me following a seasonal illness. Around that time I noticed that I occasionally woke up in the middle of sleep with choking/coughing. I started to get anxious about the whole thing, and slept only on my side until I could get scheduled for treatment. (Unlike the standard OSA patient, I don't typically rate as sleepy on the Epworth scale. I don't snore and am fairly thin, but have a small jaw. OSA definitely runs in the family.)

As predicted, the sleep report showed elevated AHI (~34) while in REM sleep. My overall AHI was low, but sleep architecture was fragmented, with almost all time in stage 1or 2. Total REM time was short. I had a second sleep test for titration. The REM time went up to about 20% that night. My prescription was for CPAP at a pressure of 7 cmH2O. I have been using a CPAP every night since March 30 - that is 5 months now.

Initially the CPAP seemed to be helping, and after a month or so I started back into exercise. While the fatigue mostly lifted, chronic sleepiness became an issue. I attributed it to the fact that I was getting less sleep with the CPAP - 6-7 hours average, as opposed to my lifelong habit of 8 hours a night. I knew I was having issues with sinus congestion, mask comfort, and aerophagia. I also procrastinated going to bed - it just didn't seem appealing until I was quite tired.

A respiratory therapist at my doctor's office suggested that I lower my CPAP pressure to 6. It helped the aerophagia just a little bit. Nasal spray helped a bit with the congestion. Then about a month ago I changed to a new mask, and found my sleeping quality greatly improved. I woke feeling like I had been in deep sleep, and consistently felt more alert in the morning. But while daytime sleepiness got much better, and I started sleeping more hours, the overall physical fatigue came back. Last week, out of concern for my health, I put my CPAP back to 7.

The S9 reports mostly "clear airway" apneas, about 5-15 a night. Usually I have only one or two obstrucive type events. I recently took home a pulse oximeter which showed really nice (high 90's) blood O2 all night. So what is the problem - frequent arousals / sleep fragmentation?

I recently followed the thread on UARS and listened to Dr. Park's interview with Dr Krakow (I think it was recorded in 2011). I seem to fit with what he classifies as CPAP intolerant. Dr. Krakow talks about normalizing breathing waveforms in titration to make people actually feel better. He also recommends an auto-BiPAP or ASV. My sleep doctor is open to these ideas, but admits to being unfamiliar with that approach.

When I look at my breathing waveforms in Sleepyhead, they are usually rounded, but then sometimes flattened, often jagged or irregular. I haven't a clue as to how to judge breathing waveforms over the course of a night. I'm pretty sure I wasn't titrated for that outcome.

As for the next step, I'm seeking advice. Should I just request an auto-BiPAP and see if I feel better subjectively? Does an S9 AutoBiPAP monitor breathing and titrate for "normalized waveforms"?

If I need help from a sleep lab, how do I find a place that isn't AHI-centric? Several times I have heard that I my OSA is "not that bad" and don't really need CPAP. But UARS is documented, I seem to fit the description quite well, and my life is seriously compromised. I hope that Dr. Park and Dr. Krakow aren't the only ones who treat UARS.

Since I am in Colorado, I wonder if anyone is familiar with National Jewish Hospital in Denver? They are big in respiratory, but their website doesn't mention UARS. Even the Stanford University website doesn't mention it.

Long post, so thanks for reading this far!

I think you ought to give bipap a chance. Purely UARS should clear up with higher pressure, but if you have trouble with it you may need bipap to achieve higher pressure. Pressure differential on inhale and exhale may help, or it may not - you kind of have to try it. ASV is another option but I'd see about trying bipap first.

Another thing you might want to try is raising the CPAP pressure but turning on EPR or c-flex to 2 or 3.

I'd definitely discuss this and make changes in consultation with your sleep specialist doctor - I don't think a regular doctor can help with this kind of problem much.

Thanks, Xney

I neglected to mention that I did increase my EPR from 2 to 3 at the same time that I put my pressure back to the original level of 7. I suppose that's the best I can do with a CPAP.

Hi lostsheep, I don't have any answers but I wanted to ask if you'll keep us posted on how you're doing and what you're finding out. I've suspected that I may have UARS also but haven't been able to get a proper sleep study to find out. If indeed my pressure needs to be higher than it currently is, I'd probably need to go to Bilevel too because of aerophagia issues.

I've read somewhere that UARS was really brought to light by researchers at Stanford, so I would hope that would be a good place to go if it became necessary. I live within a few hours drive of Stanford but I'm stuck in-house at Kaiser. Out of curiosity I called Stanford's sleep clinic and asked what they charge for private pay for a sleep study -- drum roll, $9000. Maybe they serve you breakfast in bed?

Glad you wrote in, thanks!

As far as I remember, the fix for UARS is higher pressure, much like obstructive apneas? But bi-level may make it easier.

At my first sleep study, 2.5 years ago, I was prescribed a CPAP to be set on 5 to 7 cm for OSA. Once I got an S9 Elite I started to titrate myself, by raising the pressure one cm each night starting from 7 cm, and realized that I get less OA events in the machine window, at a pressure of about 10 cm. So I continued to treat myself at 10 cm, EPR = 3, All time, and no Ramp. After 6 months I purchased an S9 Autoset and let it run in APAP mode. It validated that my 95% pressure was around 12 cm. About a year later I have undergone a sleep study for pressure titration only on CPAP. It turned out that it was 13 cm as my optimal pressure. So I set my APAP accordingly.

UARs, RERA, and snore, are regarded by Resmed machines as Flow Limitation (FL). In my ResScan graph I saw that I had very limited FL left when I used the S9 Elite.


Also, check this:

https://www.youtube.com/watch?v=8bnqEJN ... ure=relmfu

and see my post here:


viewtopic/t72573/Flow-Limitation.html

Kaiasgram - Thank your for the info on Stanford cost. That is crazy! I will definitely post whatever I learn, as UARS is not discussed all that much in this forum. I have my fingers crossed that I will achieve a some resolution on my own particular fatigue issues.

avi123 - Did you ever try changing from CPAP to BiPAP to help deal with flow limitation? I had some centrals in my lab test, so I think there might be some concern about BiPAP. But (as Xney notes) with significant aerophagia, I don't see how else I would be able to increase pressure.

I don't have an autoset machine, so one thing I'd like to understand is whether the Resmed algorithm will attempt to compensate for flow limitation.

I find I feel a lot better if I increase my minimum pressure a few points above where I don't get any significant number of apneas recorded. I seem to have some episodes of difficulty breathing. I don't know if it's officially UARS, but I do what works for me.

I do get some gas. I've been debating buying a bilevel machine if one pops up on CL sometime.

If UARS is your issue, I won't be of any help. If you are still looking for possible contributors, I'll throw my thoughts into the think tank.

I notice you specifically noted esophageal narrowing. I would think that would be related to digestion issues. Do you have GERD or reflux? That can be a sleep buster, and can also affect the vocal cords, which then can affect breathing. Have you been medically evaluated specifically to rule this out as a contributor to your symptoms? If not, until that can happen (if needed) you might want to raise the head of your bed a few inches and sleep on your left side. (If I'm wrong about which side, someone please correct me.)

A less likely consideration is are you a breath-holder? I am. I often have to remind myself to take a breath. I have a limb movement disorder during sleep and I tend to hold my breath during movements. Not sure how that might look in the data of a machine that reports clear airway events.

Personally, I wouldn't make any major changes or investments without a better idea if it was going to actually help. Seems some more investigation or diagnostics might be in order. Would be a shame to go through all the upgrades and still have problems. Of course if you want to choose that path, you know yourself better than I.

archangle - Thank you for mentioning that, as it reaffirms the idea that my lab titration may not have been adequate. I take it as another vote for getting an auto-BiPAP and re-doing the titration (or maybe self-titrating).

kteague - I haven't been to an ENT, and it is possible that there is some GERD going on, too. But I'm not sure how likely - not getting any bad tastes or sore throat right now.

lostsheep wrote:archangle - Thank you for mentioning that, as it reaffirms the idea that my lab titration may not have been adequate. I take it as another vote for getting an auto-BiPAP and re-doing the titration (or maybe self-titrating).

The medical community, especially insurance, has not completely come to grips with the validity of UARS and treating it with CPAP.

I'm interested in this topic as I and a few others consider UARS as a possible issue for me. Please keep us posted and maybe try some of the suggestions offered thus far and report back.