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Multiple surgeries, consistent BiPAP user, still struggling with exhaustion
I feel like I've done just about everything I can at this point. I'm *less* exhausted than I was before I started all this, but it's still affecting me in a major way. Especially on weekends, I feel like I can sleep forever and not gain any sense of wakefulness. Last night was 11+ hours on BiPAP, still could have easily slept another 5-6 hours afterward.
42F, 23.3 BMI (even losing another 10 pounds to get me fully into the "normal weight" category does not seem to have improved my sleep)
Surgeries:
Sinus 2013
Double jaw surgery 7/2021
Had a DISE after this, showed tongue collapse
Additional back of throat surgery with Dr. Kezirian 12/2022 - removal of lingual tonsils and some sort of stitching back there to help stop tongue collapse
All of these "helped", with the DJS showing the largest benefit. I don't regret having them. But I am still struggling with complete exhaustion on weekends, I am unable to exercise consistently due to dizziness/exhaustion, sometimes I can't even get out of the house to go do fun things with my daughter. Today I took a walk and was winded after a single block.
Have had all the blood tests/workups we can think of with my primary care doctor. Nothing is flagging as massively out of range (had thyroid checked, iron levels, etc.)
Would love any advice you all can give me. It would mean the world if I could get my life back again, and I know it would benefit my daughter the most.
10-16-2023, 08:08 AM (This post was last modified: 10-16-2023, 08:12 AM by gainerfull.)
RE: Multiple surgeries, consistent BiPAP user, still struggling with exhaustion
What is your trigger sensitivity set at? Looks like it could still be medium? You might consider trying "high" which should eliminate the central apneas. If it's already set to "high" then switch it to "very high".
Have you ever had a sleep test done? Considering your low AHI I wonder what your RDI was measured at. What types of things are you doing to promote open nasal passages at night? Breathe right strips? Saline nasal rinse? Flonase? How are your allergies at the moment?
Have you ever been evaluated for ASV? Considering how low your AHI is my hunch is UARS. Listen / watch what Dr. Krakow has to say here:
Edit: I think I have a combination of OSA and UARS and one thing that has helped me the most is taking a light sedative called apigenin which increases my arousal threshold at night which helps me wake up refreshed. I take 400mg of magnesium glycinate + 50-100mg of apigenin - highly recommended and backed by science.
RE: Multiple surgeries, consistent BiPAP user, still struggling with exhaustion
Hi! Based on the shape our your leaks it looks like mouth leak. You may want to consider a chin strap and mouth taping or switching to a full face mask. If you mouth tape: consider lowering humidity to 1 or off to prevent the tape from getting wet. The sudden leaks might be waking you up repeatedly throughout the night?
It would explain some of the tiredness if the leaks are regularly waking you even if you don’t remember it.
In your central apnea example:
Because the leak spike occurred first I think it could be a post-arousal central apnea. we hold our breath sometimes when we shift in bed or take a deep breath and pause breathing for a moment after waking up.
There also appear to be some flow limits of 20-30% that don’t correlate to leak events. This might indicate you are under titrated as well. Can you zoom in on the flow rate and the shape of them? (Approximately 1:40 and 4:20 for example)
More info about flow limitation on the apnea board wiki page.
You may also want to consider getting an oximeter to get a better idea of your blood oxygen saturation while you are sleeping. It helped me with my bilevel titration. I had a 0 AHI according to my aircurve but had lots of large desaturations.
RE: Multiple surgeries, consistent BiPAP user, still struggling with exhaustion
I'm so sorry you are having so much trouble with your various health issues. That sounds like a lot to have to deal with.
As to your apnea, your leak rate is so low that it shows as 0.00 on your large leak report Don't give it another thought. Also, your AHI is so low that I would not worry about an ASV machine at all. I hope some of the experts come along and give you better advice soon.
RE: Multiple surgeries, consistent BiPAP user, still struggling with exhaustion
Hey,
sorry to hear that you are struggling. Im actually in a similar boat. I had double jaw surgery 3.5 months ago for OSA but i still have tiredness and memory issues so I dont think cured. I want to try going back on cpap but not sure if 3.5 months is too soon to go back because I dont want to cause relapse or mess something up. When did your surgeon clear you to use your bipap again after jaw surgery?
11-03-2023, 09:18 AM (This post was last modified: 11-03-2023, 09:20 AM by erica721.)
RE: Multiple surgeries, consistent BiPAP user, still struggling with exhaustion
Hi! I wanted to give an update in case people were curious. I don’t think this is fully resolved yet, but a few days ago I switched masks. I was using the N20 nasal mask. Although the pictures I posted above don’t necessarily show it, I did notice that on some days I would have a lot of leaks.
A few days ago I switched to the N30i. It took some getting used to, and underneath my nose was sore. However, *immediately* I noticed a massive difference. My brain fog was completely gone after the first night of use.
I have ordered the nasal pillows that go with the N30i headgear/frame to try those as well. However, even if small irritated spots around my nose are the norm, I would much rather have those than the brain fog that was so debilitating!
I read online that people are using lanolin to help with the soreness, so I plan to try that as well.
