Serious issues after 25 years of CPAP

[25YearsOnCPAP]

I have been on CPAP/BIPAP for at least 25 years. Switched to Resmed VAUTO 4 Years ago because very high pressures needed. I have done very well over the years but developed new troublesome issues.

I started having nocturnal A Fib episodes with very slow heart beat and desats in low 80% despite AHI consistently below 1.0. Cardiology workup including 30-day holter monitor showed these issues but cardiologist doesn't feel need for any medication at present. He keeps saying my issues due to OSA. I don't understand how well-controlled OSA with AHI consistently less than 1.0 would cause this. I also found no apnea events anytime around desat episodes. (wore pulse oximeter at night to see if desats from events).

I did find from BIPAP data that my percentage of spontaneous breaths had dropped to 75%. I fixed this by changing Ti Max to 3.0 seconds from previous 2.0 seconds. Now spontaneous breaths 99-100%. I have desats about 1/5 nights so not every night.

I have always had serious snoring with CPAP/BIPAP. Higher pressures caused Central apnea episodes so I was just happy to have low AHI and lived with snoring.

I now have mask leaks triggered by increasing pressures. Mask leaks cause more snoring. I had weight loss surgery 2.5 years ago and dropped BMI from 44 to 29 and kept weight stable. Did not have new titration after weight loss due to Covid shutdown. Weight loss has significantly changed face shape.

Now that cardiology has cleared heart being cause of desats, I must look at OSA treatment as cause. My sleep doctor says that long term CPAP use can cause Treatment-Emergent Central Sleep Apnea. Although TECSA is typically found in new CPAP users and self-resolves, it is known that long-term CPAP use can cause central sleep apnea where there is minimal or no breathing effort despite open airway. My BIPAP data at current settings show a rare CA and rare OSA event with AHI less than 1.0.

My BIPAP data shows episodes of very fasting breathing (RR up to 35 bpm for up to 30 minutes) likely in response to desats. But no breathing events within 2 hours. I will be having new titration study in January. But curious if changes on what changes will have any effect as AHI already very low and desats not associated with any breathing events

My face shape has changed significantly from weight loss and I have struggled with finding a FF mask that seals. Been using ResMed F10 Airfit size Extra Small. I have sunken bridge of nose so always hard to stop leaks into eyes. I also have very short face so only an inch from lower lip to bottom of chin. I am obligate mouth-breather due to very small nostrils and deviated septum. When my mouth opens to breathe, the lower part of mask goes into mouth if worn at intended place below lip. So I have always worn F10 FF mask just under chin edge. The mask is slightly lower on nose but usually seals well as that part of nose not as sunken. With change in face shape from weight loss, this strategy not working as well. Constant leaks, more snoring and a few more events (mixed obstructive and central) but AHI still below 1.5.

I do better sleeping on side and use a lot of pillows to keep me on side. I have some issues with numb arm or shoulder pain on side. Some nights I end up on back and wake up with my tongue stuck to roof of mouth, drier than the Sahara. My humidifier runs dry in 4 hours on Auto setting.

Any FF mask suggestions for high pressures?

Insights into desats?

[Miss Emerita]

Hello, and welcome! I wish I could answer your mask question. Your questions about desats and a-fib deserve much better answers from your doctors. I think you will need to press them.

Why does your cardiologist your heartbeat and desat issues are due to OSA when your OSA is well controlled? Does he not believe your CPAP data? If you use OSCAR, perhaps you could print out some summary information to take to your next visit.

And why does the sleep doctor think treatment-emergent central apnea is in play when you have virtually no CA events? Again, summary data from OSCAR might help you sharpen your question.

By the way, OSCAR can handle data from a variety of oximeters. Take a look to see whether you see one you might want to use on the occasional night. That could help you spot correlations with other night-time happenings.

[chunkyfrog]

Maybe you need to see a specialist with vision beyond that of your current cardio.

[25YearsOnCPAP]

Definitely seeing other specialists. Weird how these specialists get so myopic and just look at their own area subspecialty. I do not like having low SpO2 during sleep. Cannot be good for my brain. Will not give up until I have answers and solution.

I was able to get one night of pulse ox data into OSCAR. Desat occurred where no events recorded on BIPAP within 1 hour before and one hour after. Desat lasted 30 minutes.

[25YearsOnCPAP]

Here's my BIPAP data from Last Night. And detailed graph. Maximum Resp Rate 42. AHI 1.4. Minimum SpO2 from SmartWatch 86%.

[Rock Star]

I am obligate mouth-breather due to very small nostrils and deviated septum. When my mouth opens to breathe, the lower part of mask goes into mouth if worn at intended place below lip. So I have always worn F10 FF mask just under chin edge. The mask is slightly lower on nose but usually seals well as that part of nose not as sunken. With change in face shape from weight loss, this strategy not working as well. Constant leaks, more snoring and a few more events (mixed obstructive and central) but AHI still below 1.5.

I would be looking for a better mask fit. Another size maybe even give nasal pillows a try.

[25YearsOnCPAP]

Nasal pillows impossible. Nostrils too small. As a mouth breather I need FF mask. Why I was asking for mask suggestions. Hybrid FF masks don't seal well with high pressure.

Over 25 years, I have many strategies. Neck collar kept mouth shut but greatly increased AHI. I would wake up gasping. Chin strap caused serious OSA events pushing lower jaw further in and aggregated TMJ. Mouth taping stopped my breathing. How I discovered I needed to breathe through mouth. I even mouth breathe during day.

Cannot use mouthguard due to TMJ problems. Have considered using tongue-stabilization device with BIPAP. Will ask sleep doc first.

[Jlfinkels]

I do better sleeping on side and use a lot of pillows to keep me on side. I have some issues with numb arm or shoulder pain on side. Some nights I end up on back and wake up with my tongue stuck to roof of mouth, drier than the Sahara. My humidifier runs dry in 4 hours on Auto setting.

I cannot help with the CPAP questions, but regarding your shoulder issues I have problems with both shoulders and back as well. As a side sleeper I use the following that allows me to sleep fine on either side. It is a bit pricey, but mine is about 3 years old and still works well. Note that if you do have lower back issues it may not work out as you will be at a slight (10 degree) incline, but by using the body pillow with the wedge it helps with the back angle and makes it comfortable for me.

This arrangement works fine for me whether I’m using nasal pillows or a full-face mask. The nice thing with the full body pillow is you can place your head at the top of the crook and it does not press against the mask.

It does take some time to get used to it, but something to consider.

https://medcline.com/products/shoulder-relief-pillow

[Midwest_non_sleeper]

How is it even possible to have an AHI below 1, yet have Desats into the 80% range? Aren't Desats typically due to a high AHI?

The only thing I can think is that the leaks are so bad that you're not getting any realistic benefit from the therapy, but that doesn't explain the AHI of 1.

[robysue1]

How is it even possible to have an AHI below 1, yet have Desats into the 80% range? Aren't Desats typically due to a high AHI?

There are other medical conditions that can cause O2 desats. COPD for example.

The only thing I can think is that the leaks are so bad that you're not getting any realistic benefit from the therapy, but that doesn't explain the AHI of 1.

The posted leak data indicates that the leaks are sufficiently under control so as to not affect the efficacy of the CPAP therapy: The leak like stays below Resmed's definition of Large Leak (i.e. 24 L/min) for almost the entire night. And both the median and 95% leak rates are well below the 24 L/min line.

And give that the desats are down into the 80s, the OP needs to be working with a team of docs to figure out what is in fact going on.

[25YearsOnCPAP]

Exactly my dilemma. Cardiologist keeps pointing at OSA as cause. Sleep Doctor not convinced. I just want a diagnosis and treatment that makes sense. Nothing in my sleep data points to OSA issue.

One other health issue that may explain it all but none of my doctors will consider (Covid politics). I developed Subacute Thyroiditis in Feb 2022 following my 3rd Covid vax, 1st booster. Severe neck pain and very swollen thyroid and lymph nodes. Fevers and tachycardia. Had high thyroid blood levels and very low TSH. All tests confirmed the thyroiditis diagnosis (ESR & CRP elevated proved inflammation) including ultrasound of thyroid and Radioactive Iodine Uptake (zero uptake). I had no thyroid antibodies so conclusion was not autoimmune thyroiditis. Subacute Thyroiditis almost always follows an upper respiratory viral infection but I had no infection of any kind for several years. So my personal conclusion remains Covid Vaccine caused it but none of my doctors will even consider.

BTW. There are published scientific papers documenting cases of Subacute Thyroiditis following Covid Vaccine as well as patients in ICU with severe Covid infection. At least 99 cases where doctors outside of USA willing to publish. So the polictical atmosphere in medical profession about Covid Vaccine side effects is such that admitting anything including myocarditis and deaths in younger males is professional suicide for most. So I understand why none of my doctors will even consider it the cause of of my A Fib, bradycardia and oxygen desaturations.

Anyway. Subacute Thyroiditis follows a typical course. First, high thyroid followed by period of hypothyroidism; 85% eventually regain normal thyroid function within 12-18 months. 15% require thyroid meds as thyroid gland never recovers. I had a 3-month course of Prednisone to stop inflammation of thyroid gland. Developed symptoms of hypothyroidism in June including sensitivity to cold, dry skin, myxedema, low blood pressure and SLOW HEART RATE almost passing out walking dog. Have been on Synthroid since June without return of thyroid function by blood tests and ultrasound. All my hypothyroid symptoms remain but endocrinologist won't increase thyroid dose. And, of course, totally denies my bradycardia and A Fib due to hypothyroidism. Among causes of A Fib and bradycardia, you will find hypothyroidism is prominent. A Fib is also strongly linked to UNTREATED OSA but bradycardia is not. My A Fib episodes started in October. Usually occur just after I get in bed for night.

So the battle of the experts and the politics of Covid Vaccine are preventing me from getting proper diagnosis and medical care. I truly believe hypothyroidism is the underlying cause of A Fib, bradycardia and desats. I was able to link one night of pulse ox data with BIPAP data and found Desats associated with slow heart beat with no apnea events.

I am 10 months post Subacute Thyroiditis. My thyroid function still not recovered and remain on inadequate dose of thyroid supplement. Has been very frustrating as specialists keep pointing at OSA when there is zero evidence. They even refused to LOOK at the BIPAP data I brought them.

[dataq1]

I started having nocturnal A Fib episodes with very slow heart beat and desats in low 80% despite AHI consistently below 1.0. Cardiology workup including 30-day holter monitor showed these issues but cardiologist doesn't feel need for any medication at present.

Did your cardio doc tell you what your AFIB burden is? ( “burden” is the percent of time the heart is in AFIB)?

Insights into desats?

[25YearsOnCPAP]

No, his nurse called and was very cagey in how she gave holter monitor report. "No arrhythmia requiring medication at present." She didn't say no arrhythmia. Just didn't need to be on blood thinner yet. Followup in 6 months.

>>Oh. She did say I am on "correct medication." I have been on a beta blocker for a number of years for hypertension. Beta blockers are used to control A Fib. That lead me to conclusion that A Fib diid show up on holter monitor.

I am getting copy of report for my sleep doctor as it is important for him to know results, especially during sleep. As far as I can tell, A Fib is paroxysmal, quite sporadic. I have been aware of 5 episodes with heart pounding and flip flopping at slow rate less than 60 bpm. My SmartWatch said A Fib all 5 times. I had 2 episodes of this feeling before which prompted me to buy SmartWatch. I bought Samsung Watch4 Classic as I have Samsung Galaxy S22+ cell phone. Was able to save ECG and show cardiologist on my first visit.

I won't know if documented during 30-day holter monitor until I see report. But I had 2 episodes while on holter monitor that SmartWatch identified as A Fib. I suspect I am having bradycardia and A Fib during sleep which explains desats. But cardiologist only concerned if A Fib occurs with very fast heart rate. Was told if that occurred, to get to Emergency Room.

[dataq1]

here is a screen shot heart rate during a sleep study where AFIB occurred from 2300 hrs and ended at 0300 hours. The cardiologist was NOT alarmed.
Are you sure what you are feeling is AFIB and not PVCs?

afib during sleep study_002.jpg (22.17 KiB) Viewed 1192 times

[25YearsOnCPAP]

I don't know. Will get report of 30-day heart monitor. My SmartWatch identified A Fib multiple times. Could SmartWatch misidentify PVC for A Fib? Maybe. SmartWatch also identified "Unknown arrhythmia" several times.