Miserable Sleep 40+ Respiratory Rate, Doctor Doesn't Know Why

[SkylarBlue]

I told my pulmonology doctor that my respiratory rate is at 40-50 every night. They didn't believe me and said that my machine was probably just misreading. So I recorded myself in my sleep and yes, I am breathing 40-50 times a minute through the night hyperventilating. I also have woken up a few times noticing my breathing rate. After recording and coming back along with showing my Oscar results my doctor said they hadn't seen anything like it in 30 years and that I should do another sleep study (but unsure as to when at the moment) I went to reddit and posted, was given a few tips but nothing has helped so they told me to come here!

My sleep has been MISERABLE. I've tried multiple things to get my respiratory rate down during the night but nothing has worked so far. Lowering the pressure, raising the pressure, making the pressure static like on 7, rather than 7-12 auto, I've tried higher EPR but have a rough time, I've tried turning off EPR. Nothing has really changed my respiratory rate during my sleep. 

I feel tired and wiped out every single day because of my sleep, constantly waking up. Surprisingly I feel MORE rested the few nights I've accidentally fallen asleep without my CPAP, the only issue is the terrible side effects when not using CPAP ( extreme head pains, and being lightheaded/fainting next day)

Here is some information about my sleep apnea:

• I've been on CPAP for about 1 year now consistently
  
• I have a respiratory rate of 40-50 on most nights
  
• I set my machine to 7-12 most nights with an EPR of 1
  
• No ramp - Humidity is set to 4 (any higher and it gets clogged even with heated tube)
  
• I have an AHI of 24 that was classified as obstructive (according to a sleep study 1 year ago, 6 of the 24 was central)
  
• My machine seems to read that I have central apnea and not obstructive for some reason (see attachment)
  
• I use a F20 full face mask, I've tried multiple different masks
  
• My nose is usually plugged/trouble breathing - reason why I don't use a nasal mask
  
• dry mouth regardless of humidity, I use xylamelts but still dry mouth that wakes me up
  

One thing to note, I also feel like I have shallow breathing even during the day, possibly I need a Bipap? The thing is on the inpiratory/expiratory times on Oscar a lot of the times they are close to the same, though sometimes the exhale is slightly lower like 0.6 insp/ 0.4 exp


I really just want to be able to sleep again.. even if I lay in bed for over 10 hours I feel like I got zero sleep. It feels like I wake up constantly all night due to the respiratory rate, dry mouth, etc. Not so much from choking from apnea.

I plan on getting a sleep study soon, I've mostly been waiting to see about getting a sleep apnea mouthpiece from a dentist before doing another sleep study so I wouldn't have to do two of them.

Is my body just rejecting CPAP? It kind of seems that way to me.. I'm just not sure what to do at this point life feels miserable. I have other medical issues that are still unexplained and I feel could be tied to my horrible sleep. I really want to be able to live my life again.

Maybe it's my mask leaking air during the night and I need a mask that fits me better but haven't found one yet? Maybe I require Bipap or some other machine? Maybe I just have shallow breathing so I can't tolerate CPAP well? Maybe my machine is just defective? It's hard for me to say I hope I can find the answers soon!

If anyone has any insight on the matter I would greatly appreciate it! Also If there's anything else I need to add for assistance please let me know!

[stevew77]

I have to say your data is very strange. Your respiratory rate went down greatly at one point that you posted. You are obviously hyperventilating. Have you tried to just breathe slowly? Like once every 6 seconds? If you are not breathing deeply, you have mostly dead space air which does not enter the alveoli of your lungs, and does not exchange O2 and CO2. I suspect this is what is happening, but you need to understand why? You need to see a respirologist or pulnomnologist. Take care.

[SkylarBlue]

This is when I'm sleeping I don't have control over my breaths. When I'm not sleeping I breathe normally through the mask just fine.

[stevew77]

If that's the case and only when you're sleeping that it occurs, you need to see a specialist, since it is not under control. I suspect they will be able to help you.

[quiescence at last]

In your statistics there is no record of the OA being high, nor for that matter high H or high CA or RERA scores.  That is puzzling.

In most cases in my breathing record, the wildly variant breathing has corresponded greatly in the dreamy times just before a wake (that occurs many times a night).  I believe the close up breathing you posted shows that before 08:49:25 you were either in REM or in a wake state.  Based on the shallowness of the breathing I would say REM sleep.  The breathing after the CA event looks very similar to NREM sleep where there is naturally a CO2 driven respiration.  You caught the transition between two stages of sleep.

The number of times you switch sleep states per night do seem to affect your restedness you feel.  I would probably stress that in a laboratory sleep test. Maybe you can look at your original sleep test, and see how many shifts in sleep stages did occur.

The minute ventilation (what volume of air is inhaled per minute) values look good, even though there is low volume per breath. I would ask the physician about your lung capacity and if there is any lung damage or insufficiency.

Hope you find the thing (s) that are affecting your sleep.  It may not be sleep disorder, but another thing that affects both sleep and awake periods.

QAL

[Jay51]

Thank you everyone for posting.  Before any treatment, I took a WatchPat home sleep study.  I also have taken 4 capnometry (capnograpy) tests on room air (no xpap).  I had a hypoventilation - hyperventilation cycle.  But slightly different than yours.  Hypoventilation starts it.  My hyperventilation was only necessary to correct the hypoventilation.  I had a low respiratory rate of 5 or 6.  And highs in the 40's and 50's.  By stopping the hypoventilation that always started for me 1st, no hyperventilation then followed it.  You don't get super low on respiratory rate, but like QAL said, it does get low and alternates.  IMO, you definitely need to get this checked out.  Try to image how your heart is reacting to these cycles.  Up. Down. Up. Down, etc.  I felt like I was doing a cardio workout during my sleep.  Anyway, I hope this helps.  This ventilator that I use has settings to stop both from occuring for me now.  Possibly a machine with a better algorithm could benefit you.  A machine with a back up rate that you can set might better pace your breathing rate during the night.  A back up rate set to 15 forces your to breathe at least 15 times each minute.  For instance if you set the rate to 12 or 15 or so that might keep you from hyperventilating so much and getting so high a rate; and also keep you from hypoventilating also.  Your minimum rate would never be lower than 15.  Some machines have a single set rate; a few others have a more adaptable rate with flexibility.

[Sleeprider]

We have had several members over the years that have presented with extraordinary respiration rates that I would describe as panting. Some have resolved to normal sleep, especially where central apnea was prevalent, but this is a pretty unusual condition. Here are the results of a search I did looking back at some of those threads https://www.apneaboard.com/forums/search...order=desc

Since we don't have anything better to suggest for now, I'd like you to increase your EPR to setting 3. I don't expect much, but it may purge some CO2 by improving ventilation and suppress the tendency to hyperventilate as well as assist with deeper slower breathing. No promises, but lets see what a higher pressure difference between inhale and exhale does. Your sleep hours are unusual. Are you actually going to bed at 04:30 and sleeping to noon, or is this a clock problem on the CPAP? Let's take a look at a zoomed image of your "normal" respiration at 07:00, assuming you are asleep.

[Gideon]

I'm likely the guy that sent you here.
Looking at your zoomed view, the start of the zoomed chart is not what I expected. Your breathing rate was a valid 54 in the segment I counted. These are not an artifact of the CPAP and it's recording. I do discount everything after the first event as that is apparently the result of an Arrousal and you effectively were not sleeping.

I would look to see a non-sleep doctor ( not in a sleep clinic) pulmonologist. Start by showing him your OSCAR charts. You are a special case and the order in the "Advanced" view is what you should present as those focus on respiratory functions vs apnea. Especially Tidal Volume and Minute Vent.

My first thought is panic attack or some form of anxiety, these are just something to look into, not anything I m sure about.

[SkylarBlue]

Thank you for all the replies and recommendations! I definitely will look into a machine with a different algorithm for respiratory rate. Also I'll attempt to set my EPR to 3.
My sleep pattern is awful and random. Sometimes I sleep at night, sometimes during the day. Part of it has to do with not wanting to sleep because sleeping is not pleasant now, and another part is that I have a stomach condition that until it subsides I can't sleep, because it constantly makes me feel the need to burp. I feel it may be linked to the high respiratory rate, as in the high respiratory rate might be causing it.

I have struggled with a panic disorder, but after starting cpap surprisingly I haven't had many panic attacks at all. (previously i was getting them every single day, now its maybe once a month). 

Is it a possibility that I am having anxiety in my sleep from the machine and not from just being asleep? (meaning without the machine would I likely have the same respiratory rate) I am planning on getting a MAD device from a dentist pretty soon so hopefully that isn't the case.

I'll also look into possibly a regular pulmonologist or see from my primary care doctor. I did have covid pnemonia 2 years ago, maybe that could be related as well. 

I've seen some of the other posts with high respiratory rate some look similar but not quite the same. 


Attached are:

• A closeup when it looks like I have a normal respiratory rate at 7:00.Everything looks fine to me there. 
  
• A closeup at 7:30 when it starts to break into my high respiratory rate. 
  
• A pic of the inhale + exhale around that time.
  

It does look like when it breaks and starts to have a bad respiratory rate, that the inhale is longer than the exhale by about 20% generally. 
The Tidal Volume when at normal respiratory rate is around 400 consistently, then with the high respiratory rate it fluctuates from 160-350

[Gideon]

Look at your 2nd chart at 07:48:00 and see the two small bumps. Those are falsely indicating a faster breathing rate. Id actually expect that rate to match your heart rate with a cardiogenic artifact. That is what I normally expect to see in most with a high respiratory rate. Not a real big deal as it's artificial/false. The higher rate as in your first post is significant. Those, what I believe are cardiogenic bumps are artificially indicating a higher respiration rate.

Your "normal" breathing is inhale, then exhale slowing considerably to near zero then repeat. I couldn't ask for a better example of normal breathing.

So your task is to sort out the actual accelerated breathing as I referenced in my first post above from this artificially inflated RR. Let us know what you find.

BTW for you, pin the flow rate curve on you charts, it's that important.

So
Events
Flow Rate
Minute Vent
Tidal Volume
Respiration Rates
Pressure

Are your important charts.

BTW your history of anxiety is very good to know and may be the answer to cause but I'll leave that to the experts.