UARS and CA events... time for an ASV?

I was diagnosed with UARS 3 years ago via a watchpat study with an RDI of 14 and an AHI of 2. I suffer from all the classic UARS symptoms such as fatigue, headache, cold hands and feet, IBS, etc.

I was prescribed a CPAP, which I couldn't tolerate and felt worse on. I eventually found out that the reason I couldn't tolerate it was because my nasal breathing wasn't good. I eventually saw an ENT that told me I had enlarged turbinates/deviated septum/nasal valve collapse. Instead of surgery I decided to fix my problems with nose strips, flonase and azelastine spray. This fixed my nasal breathing and made me tolerate CPAP. I was still experiencing a lot of flow limitations with CPAP, even with an EPR of 3. I was also getting a lot of central like pauses and irregular breathing/waxing and waning of flow rate, even with EPR off.

I did some digging around and found out that Dr. Krakow recommends BIPAP for UARS, so I bought a used Aircurve S. I have titrated the pressure support up to 5, and this has eliminated my flow limitations, based on the roundness of the inspiratory flow. I have noticed about a 40% improvement in my symptoms since moving to a BIPAP. I've been trying out different EPAPS with a pressure support of 5, so 5/10, 6/11, 7/12, but I don't feel the difference using different EPAPs, and I barely get any obstructive apneas. Upping the pressure support to more than 5 starts to make me feel worse. So it looks like 5 is the sweet spot.

Here is my problem. I am struggling with what seems to be TECSA. Not necessarily in the form of central apneas, because setting the trigger to "very high" has "eliminated" them. I say "eliminate" because I heard some people say that setting the trigger on very high just masks them. If I don't set the trigger to very high, I will experience about 10 CAs an hour with a pressure support of 5. Regardless, even if I have no pressure support or I have the trigger on normal, I still experience these irregular breathing patterns all throughout my sleep that look like the classic hyperventilation - hypoventilation cycle. The pattern is always the same, shallow breathing with long exhales, followed by fast recovery breaths that usually end up in arousal. My charts always look like a mess, with a bunch of arousals.

Anyways, since I have been on CPAP/BIPAP for more than 3 months, and what appears to be TECSA hasn't resolved, would it be a good idea to move to an ASV? Any advice?

Thanks

OSCAR screenshots: https://imgur.com/a/jQljhGY

bump

There is not enough information in the graphs you've posted.

You have made a series of statements.

You have come to conclusions based on your statements. You give us no data that will help check the correctness of your statements or conclusions.

Why were you prescribed a CPAP? What were its original settings? Did you have a sleep study prior to the prescription?
Are you being followed up by a sleep professional? By an ENT?

freakyfrog wrote: ↑

Sun Apr 07, 2024 1:45 pm

I heard some people say that setting the trigger on very high just masks them

Where did you hear that? What are your reasons for trusting that source?

What kind of advice are you looking for from us?

You think you have treatment-induced CA's? The machine is not registering them... so perhaps you're on the edge? At the low pressures and high PS you're at it's certainly possible that you're losing some breath drive via CO2 stripping out.

Partially block the exhaust ports as an experiment. You like where you are in pressures, you don't monitor your O2 so we don't get to see the oscillations TECSA would show, you seem to like tinkering... you want to retain some CO2... that's the solution. Or move to a mask that has less exhaust flow... I find pillows masks don't give me enough exhaust, the Bleep Eclipse was intolerable in that regard. Play around.

Really, you should be clinically titrated in a lab. I recently paid 1500$ for the privilege and I'm glad I did... it gave me a set of pressures that I know to start from. An O2Ring would also help here... no way I'd consider self-titrating without one.

You are not experiencing treatment-emergent central apnea, because you're not having any central apnea events. You may be experiencing some instability in your flow rate, though that isn't apparent from the Oscar material that you posted. You mention frequent arousal breathing, though that too isn't apparent from your posted Oscar materials.

I don't recommend partially blocking your vents. It would be helpful to see some snippets of, say, 10 minutes showing waxing/waning breathing with arousals.

Have you experienced any improvement in your daytime fatigue/sleepiness/tiredness since starting your use of your current machine? What are your main concerns about waxing/waning breathing? Are you worried about your oxygen levels? Or ... ?

Miss Emerita wrote: ↑

Wed Apr 10, 2024 11:58 am

You are not experiencing treatment-emergent central apnea, because you're not having any central apnea events. You may be experiencing some instability in your flow rate, though that isn't apparent from the Oscar material that you posted. You mention frequent arousal breathing, though that too isn't apparent from your posted Oscar materials.

I don't recommend partially blocking your vents. It would be helpful to see some snippets of, say, 10 minutes showing waxing/waning breathing with arousals.

Have you experienced any improvement in your daytime fatigue/sleepiness/tiredness since starting your use of your current machine? What are your main concerns about waxing/waning breathing? Are you worried about your oxygen levels? Or ... ?

here is a 10 minute segment of waxing and waning ending in an arousal. https://imgur.com/a/X65xM1l

I've experienced some improvement using my current machine, but I am still significantly tired, headaches, fatigue, etc. On the days where I sleep less, say 4 or 5 hours, I feel amazing, but still tired. The more I sleep the worse I feel, something that is very common with a lot of people who I have talked to who have UARS.

vandownbytheriver wrote: ↑

Tue Apr 09, 2024 11:44 pm

You think you have treatment-induced CA's? The machine is not registering them... so perhaps you're on the edge? At the low pressures and high PS you're at it's certainly possible that you're losing some breath drive via CO2 stripping out.

Partially block the exhaust ports as an experiment. You like where you are in pressures, you don't monitor your O2 so we don't get to see the oscillations TECSA would show, you seem to like tinkering... you want to retain some CO2... that's the solution. Or move to a mask that has less exhaust flow... I find pillows masks don't give me enough exhaust, the Bleep Eclipse was intolerable in that regard. Play around.

Really, you should be clinically titrated in a lab. I recently paid 1500$ for the privilege and I'm glad I did... it gave me a set of pressures that I know to start from. An O2Ring would also help here... no way I'd consider self-titrating without one.

Yes I am trying to get titrated, but I am currently going over hoops and hurdles with insurance right now. I have considered trying an EERS, but I am concerned with the safety of that. I think an 02 ring is a good idea.

Thanks for the additional snippet. I see what might be arousal breathing at 8:07:30. It's pretty hard to tell whether there are other bits of arousal breathing during this segment, or just perhaps some sighs. And it's hard to tell whether you're truly asleep for some of this, though I think yes.

These are good reasons to seek and in-lab sleep test. A split night (test without a machine, followed by titration) might work well for you. The titration should emulate CPAP, bilevel, and ASV capacities. If you get an oximeter, be sure it's compatible with Oscar.

Stepping back, have you worked with your primary-care physician to determine whether some other kind of condition is causing you to feel tired during the day? Some tests that might be useful include thyroid, testosterone (if you are a man), iron, autoimmune disease (especially in the connective-tissue disease family), Lyme disease, and B vitamins. Has a GI doctor diagnosed the IBS? Are you being treated for it?

For fragile sleep, there can be a lot of progress via adhering strictly to basic guidelines for good sleep. Some of these are hard for me to follow -- certainly harder than popping a pill or even using my machine. But it's worth it:

• Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
• Set a bedtime that is early enough for you to get at least 7 hours of sleep.
• Don’t go to bed unless you are sleepy.
• If you don’t fall asleep after 20 minutes, get out of bed.
• Establish a relaxing bedtime routine.
• Use your bed only for sleep and sex.
• Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
• Limit exposure to bright light in the evenings.
• Turn off electronic devices at least 30 minutes before bedtime.
• Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
• Exercise regularly and maintain a healthy diet.
• Avoid consuming caffeine in the late afternoon or evening.
• Avoid consuming alcohol before bedtime.
• Reduce your fluid intake before bedtime.