[Symptoms] urgent help needed: "Flutter" on falling asleep (on PAP or otherwise)

[ewriter]

Hi,

I've followed up with Cardiology, Sleep Titration, Echo and Holter in February - May this year and was told "it's not your heart." The main issue is that I am forced awake and find it very difficult to go back to sleep. I was diagnosed with sleep apnea in 2005 (AHI 23) but refused to get a machine and was OK until 2011 (6 years later) when i got bad apnea symptoms like microsleeps. Tested again with a PAT and AHI was 23 (again) and bought a Respironics System One, which i still have. I used the Respironics from 2011 to 2020 when it started to say "Technical Support" (the machine appears to be working well but needs checking after 10 years). I had a sleep study in 2020 and was told: "You don't have sleep apnea. Do you still want a machine?" which was very confusing (Three years later, i found out that the sleep doctor meant that my AHI was like 7 but she supplied a prescription for a pressure of 13); i continued to use a pressure of 13 and bought an Aire10 Autoset for Her and used this with good success until 2022 on APAP using a pressure range of 9 - 13. In January 2023 i began experiencing more "flutter" symptoms than i had previously. I also lost 20 lbs over the summer doing heavy renovation work. Unfortunately, i had severe panic attacks over the "flutter." My family doctor put me on antidepressants and sedatives, which are not the solution.

I've attached my latest APAP results and the results for CPAP at 14 (my old Respironics settings used last year). Can anyone help me understand why there are so many RERAS bunched together and help me understand if the therapy is clearing my apneas? If not, what can I do to improve my AHI and prevent snoring and/or apneas? Note: I had the Aire10 in one location and the Respironics in another; that's why, for about 3 months, I was using two different machines and two different therapies.

My doctor, Cardiologist and sleep doctor do not know how to help me.

https://imgur.com/a/XczDsdY


Thanks!

https://imgur.com/a/XczDsdY

[Dormeo]

Ewriter, I went back and read your previous posts. (Going forward, it'll be helpful if you stay in one thread for related issues.)

You've experienced unpleasant sensations as you fall asleep and later during the night. These feel as though they're in your brain/head or in your chest. It sounds as though the head-based sensations are not bothering you right now. It isn't clear from your post whether you're experiencing the flutter sensation as you drop off to sleep or later during the night when you're awakened. Could you clarify?

It's excellent news that the work-up for your heart shows that it is healthy. This gives you far more assurance than most people have that your chest-based sensations have nothing to do with a heart problem.

The most striking thing to me about your charts comes in the flow limitation graph for your ResMed machine. What we see there are periods of very heavy flow limitations. These periods are also the times during which you have hypopneas and RERAs. Your respiration rate also increase during two of the three FL episodes, and you have snores during the first one.

The timing of these periods strongly suggests to me that they coincide with REM sleep. One fact about REM sleep that might be helpful for you to know is that it's common to wake up after a period of REM sleep. You may be waking up in this pretty normal way but then experiencing sensations related to the FLs, RERAs, hypopneas, and snores you've had during your REM sleep. It may be that your generally anxious disposition prolongs the time it takes you to fall back asleep after these experiences.

So what to do? First, I recommend that you use the ResMed machine exclusively and retire the PR machine. ResMed machines are more nimble than PR machines, and they also allow you to see more information in Oscar about your FLs.

Second, I recommend that you increase your EPR to 3, which might help a little with the FLs, snores, and hypopneas. Raise your minimum to 10 to compensate.

Third, I recommend that you leave the For Her mode and use the regular PAP mode. This might enlist more help from the machine for dealing with your respiration-related problems.

If you decide to make these changes, give it two or three nights and then let us know how it goes. Don't expect anything dramatic, but by seeing the results of these changes, we may be able to see a little better whether there are additional changes that might help.

[ewriter]

Hi Dormeo,
Thank you so much for so promptly replying and reviewing my data. This is more than my family doctor had done in four years. I will follow your suggestions but I need to mention that any time I visit my DME they say I should not be making changes myself; they insist I get a new prescription (this will take a family doctor referral for a new sleep study, which takes about two months to get results and my doctor will not agree. As well, I am limited by insurance to a single sleep study/machine/mask update per year). I have made adjustments myself since 2011 and did not need to make many -- for most of the past 1 years I did well on therapy and never even looked at the data (I used to use SleepyHead). My latest sleep study was scored pressure of 9 after I had been on a pressure of 12.5 - 13 for 99% of 9 years on the Respironics CPAP (2011 - 2020) and then 9 - 13 APAP on the Aire10 (for this setting as far as I recall, I was followed up by my DME to get started; but I don't know how we arrived at APAP mode when I was exclusively on the CPAP mode for the Respironics). A drop from 13 to 9 is quite a bit; but my sleep study specialist said 9 was correct. After several video consults, he said I could use either CPAP or APAP on the Aire10 and lower the pressure to 8 if i wanted; but he could not provide any advice for the "flutter" except to see a Cardiologist or Psychiatrist. My main concern is that my heart rate drops to 40 - 45 during sleep (likely due to being on Propranalol for ~16 years) and i would like to raise this. My family doctor put me on four different antidepressants this Spring to try and help me to sleep (very bad idea) and i am no longer on any of them. I am taking a very small dose of Clonazepam but am also tapering off this. Also, to clarify, when i start to try to fall asleep/rest i get the sensation and this is not in my head; if left to run on, it induces a higher heart rate. These are not palpitations, PVCs or PACs or an arrhythmia that the Cardiologist could see (two of them) on a holter (three of them). What is unusual about the sensation is that, if i strike my left chest lightly, they dissipate. If i could swallow some Indica chocolate and not think about this 80% of the day, I would do better! I have experienced this problem before (about every four or five years), i suspect it happens when my apnea treatment is badly failing due to inappropriate settings or severe mask leaks over months; or mould or other issues; but this has been the very worst season. I also get the sensation when i am sitting and resting, after my HR drops low. Last year i never had to take anything to sleep (on PAP or not) and i have also been able to go months without using the CPAP before (i had no microsleeps and was fully rested). I believe God heals and that He is answering my prayer: but i also need to be able to hear what He is saying, too.

[Dormeo]

I really hope some changes in your settings will help you sleep better and get rid of the sensations that are bothering you. After you have a few nights with revised settings, let's take a look to see what we can learn.

You might want to talk with your doctor about your use of Propranalol if you think it is causing problems for you. But I want you to know that a heart rate of 40 to 45 at night is within the normal range. There's some good information here:

https://www.sleepfoundation.org/physical...heart-rate

[ewriter]

Hi,

Since my last post, I have been using the machine with the prescribed settings of 9 cm. But i also tried 9.2 once and APAP of 13/9 once (the APAP settings I used all last year and for the two previous years), hoping to prevent "flutter" as mentioned in the previous post. This morning i woke with what seemed to be an irregular beat; but it may have been a rapid sinus beat. I guess this is what i mean by "flutter;" but i don't get this every time i use the CPAP. Or, perhaps i get it but the sedatives i take allow me to sleep through it. I don't want to take antidepressants (which the doctor ordered and had me on -- four different types in one month) because they are very difficult to get off, can cause other issues and do not treat the core issue. Some might say taking them makes sense; because they will treat the anxiety (I get very frightened by the unusual beat). But, it seems to me that treating the cause of the anxiety would make more sense. Please can anyone have a look at my data for last night? There is only a single central apnea shortlly before i wake up; it appears to be caused by a sudden change in pressure. I don't know how to interpret the possible cause of the central apnea. ALL I KNOW is that when i tried to use the machine last night, i felt that the pressure was causing central apneas FROM THE START and i am hoping that, by reducing the pressure signiificantly, i can avoid these sudden changes. I get similar issues (not the same) when i sleep without the CPAP. Note: i take 10 mg Melatonin/Magnesium (last night i had to take 20 to get to sleep, topped up with two drops of cannabis oil) together with 5 mg Zopiclone and 20 mg of Propranalol. I have been on the Propranalol for 16 years (it's unclear why; probably for anxiety related to a "flutter") but i feel it may be causing me issues. Here are the links: https://imgur.com/a/oSy1lHS

[Dormeo]

Imgur says it's over capacity. Could you post your recent chart as an attached screenshot?

[ewriter]

           
Hi,

The link is working fine on my side. I have attached 3 that i could attach.

[Jay51]

I just wanted to comment.  Your 2nd chart looks very strange IMO.  Around 1am your tidal volume starts a constistent, steady, 3 hour climb to a large peak at about 4am.  And then it drops back down fairly sharply.  Do you notice anything in your body (sensations, etc.) going on during this time period?  Are you asleep all of this time?

[Dormeo]

Jay51, what you're seeing in that chart is the whole night in the Events graph but only a short snippet in the other graphs.

Ewriter, the CA wasn't caused by a change in pressure; your pressure is fixed at 9. If you look at the third of the three snippets you posted, you'll see the culprit. That large inhalation and long exhalation represent arousal breathing. This deeper breathing washed out a little bit of CO2 from your blood, and the slightly lower CO2 level caused your breathing to dwindle and pause. Then the CO2 built back up and you breathed more normally.

What we can't tell is why you experienced the brief arousal or whether the arousal was a brief wake-up or an arousal from a deeper sleep stage to a more shallow one. At any rate, these little episodes are very, very common. They should not cause you any worry at all.

[Jay51]

Thank you for clarifying that Dormeo.