Possible Complex sleep apnea?

Hello Everyone,

This is my first post and hopefully I am going to do it correctly

I am from the Chicago area in case it isn't in my profile.

Background:
I am a 46 yr old male.
For the last 7 years I have been fighting extreme fatigue. I wake up feeling like I never slept. I have stayed up all night and feel no different in the morning than I do having been in bed for 8 hours. Was first tested for low testosterone and treated because my numbers were marginal. No help. 2 years ago started having unexplained urine retention that would come and go. So went through a bunch of test and mri's looking for autoimmune issues. Again no luck. My doctor finally suggested a sleep study last August. Went to see the sleep doctor and did the at home study witch lead to doing a in lab sleep study on November 23 2019. On December 12th 2019 I was given my results, my number 7.7 AHI over all but 99% of the test was spent on my side. The sleep technologist woke me to go on my back, my number on my back was 46.7 while on my back for 9 minutes. The diagnosis was OSA. The doctor even commented that I should be happy as it was only OSA and Hypopnea, no central. In the results of the test It was found that I have an inverse T-wave. That bought me a stress test which I reached optimum heart rate in 13 minutes on the treadmill. I also had a 2D echo cardiogram as well. Passed both with normal results for my age. The Doctor ordered a sleep titration study so I could get a CPAP. That was scheduled for January 18th 2020. The insurance cancelled the study in favor of a apap machine which I finally received on Tuesday morning Febuary 25. In the time I was waiting to get the machine I did a bit of research and found this forum and the information about OSCAR. Wonderful program!!

Now I know I have only used the machine a couple of nights. My results seem to show the obstructive are all but gone but am now seeing a lot of Clear airway apnea, Hypopnea, Periodic breathing and RERA. My symptoms have also changed a bit. I am still at the same fatigue level but now i am aware but do not feel fully awake (I feel paralyzed if that makes any sense), that I am going a long time without inhaling and then doing a very large inhale. I wouldn't necessarily call it gasping though. I also woke up with a headache this morning. That is a first for me. I normally just feel like I haven't slept and would typically wake up twice during the night to pee. Because of the change in symptoms I did some searching and found 2 articles about CompSAS. One from Mayo Clinic and one from British health services.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3704546/
https://www.sciencedaily.com/releases/2 ... 161349.htm

My questions are, am I over reacting and should give it some time? (The articles state that complex will come on at the initiation of treatment with pap when OSA are eliminated)
Should I contact my sleep doctor and let her know what is going on? Or am I just wasting her time by not giving the treatment a chance yet.

Thanks in advance for any advice you can give,
Kevin

Hopefully I have given the information you need. If not let me know and I will post anything I missed.

Krpepe wrote: ↑

Thu Feb 27, 2020 9:55 pm

Hello Everyone,

welcome to the zoo! unfortunately, i'm not equipped to answer your question.

so i'm just replying so that your post gets bumped up a bit and hopefully, someone with the answer can come along shortly to answer.

good luck!

zonker wrote: ↑

Fri Feb 28, 2020 12:25 pm

Krpepe wrote: ↑

Thu Feb 27, 2020 9:55 pm

Hello Everyone,

welcome to the zoo! unfortunately, i'm not equipped to answer your question.

so i'm just replying so that your post gets bumped up a bit and hopefully, someone with the answer can come along shortly to answer.

good luck!

Hello Zonker and thank you!

So I tried twice today to take a nap with the machine because I am absolutely wrecked. I was about an hour long nap. It feels like I drift off and I am then woken to take a breath.
Here are the results from this one.

I think I am discontinuing use and calling the doctor on Monday. It seems safe to say something is not right.

Kevin

A few comments:

A lot of what you are experiencing is normal when just starting on CPAP. Seeing a lot of Centrals, especially when they weren't diagnosed in your sleep study is typically not an issue.

Some of them may not be real, but false positives.
Some of them may be brought on by erratic breathing, because this is a new and very different breathing experience.
Some of them may be brought on by sleep onset.
Some of them may be brought on because pressure is clearing out a lot more CO2 and the must breathe response is simply not kicking in as often.

When I and a lot of CPAP users started we had elevated AHI and Centrals where none were witnessed in our sleep studies. Mine just gradually disappeared as I got accustomed to CPAP.

Here's a graph of my Centrals since starting CPAP:
Those empty blocks on the left are not periods of no centrals, they are periods of not using CPAP because of a deviated septum and surgery. Note at the beginning of therapy my Centrals were huge and as I got "better" at CPAP they went away.

I would not discontinue therapy, there is nothing I see to suggest something is drastically wrong.

You're sleeping terribly because you have a very foreign device on your face. It takes time to get used to it, and for some this is a very difficult period.

If anything, I would suggest an increase in your minimum pressure. This can leave us feeling suffocated, and I don't think that minimum is adequately addressing your needs.

The important thing is learning to tolerate CPAP, taking care of the OA and then once you're accustomed look at the centrals, if they are still significant.

Thanks Dog Slobber for the info. So when you first started I gather you had issues falling asleep with the machine? On Tuesday I didn't have any issues falling asleep with the machine. I actually felt decent for awhile on Wednesday morning. Wednesday night wasn't as easy but still slept and the number went up. Last night almost 2 hrs of start to fall asleep and wake up to a big inhale. This repeated for entire 2 hrs. I was in worse condition this morning than I am normally without the machine. I had a headache this morning which is outside the normal. Now this afternoon trying to take a nap same stuff drift off wake to a deep inhale. Got up with splitting headache and heart racing. You are saying this is normal until you get used to the machine? I am just concerned because I didn't have a in lab titration to set the pressures where if there was an issue they would have spotted it. Guess I am just paranoid. I wish someone would have said to me it was going to be like this for awhile till your body gets used to it. I truly don't like the feeling of getting used to this thing. My chest aches from it.

Thank you again!

Kevin

We all react to wearing it differently. My first few nights were absolute hell.

I didn't have an in-lab titration either. A lot of us don't. They used an Auto-adjusting machine and then set it according to how we respond.

I predict that your insurance company is going to have to pay for an in lab titration anyway.
Do for sure get with your doctor about what you are seeing going on.

In the meantime this weekend....maybe turn Flex off and try again if you have a mind to.

Pugsy wrote: ↑

Fri Feb 28, 2020 3:04 pm

I predict that your insurance company is going to have to pay for an in lab titration anyway.
Do for sure get with your doctor about what you are seeing going on.

In the meantime this weekend....maybe turn Flex off and try again if you have a mind to.

Thank you Pugsy for your input. I wish someone would have told me it could be like this, then I wouldn't be so spooked. Can I do any serious damage if I continue to use it and they are legitimate centrals? I will start to fall asleep and see a smallish black circle with what looks like the milky way galaxy inside of it then be woken to have to breath. I called the patient consultant for my doctors office and if past history is correct she will not call me back and I will have to go to the office to be able to speak directly to my doctor.

I really don't want to stop. I want this to work! Tuesday night gave me hope that this could be easily corrected. Every time since Tuesday that I have used the machine it has gotten progressively harder to tolerate and fall asleep. I would have thought it would get easier. The mask I have is awesome I can hardly tell I have it on. Everything I have read so far basically said getting past the mask was the hard part.

Thanks again for your input, I truly appreciate it.

Kevin

About 10 to 15% (depending on who you read) of the people who are put on cpap, who didn't have a problem with centrals during the diagnostic study, will develop treatment emergent centrals.
Doctors will usually...
1...adopt a wait and see policy and tell patients to just continue with cpap because sometimes the centrals will go away on their own.
You've got a lot of ugly going on to just wait and see. I wouldn't be in favor of this if it were me ...now maybe if there were only 5 - 8 per hour average....might be more in line with waiting because it can happen that the centrals fade away on their own.
Or do an in lab titration on cpap and if the centrals pop up and are real (vs awake false positives) move on to bilevel of some sort.
2...Consider regular bilevel
3...Consider ASV bilevel

You might be having some awake false positives but I have my doubts based on what you are saying. While we could maybe explain away some of that ugliness as false positives....I don't think we can explain away enough of it to make things not so ugly.
And I happen to think that there is a really good chance your hyponeas are more central in nature than obstructive.

Now....some people (and small percentage of that 10 to 15%) find that exhale relief is actually the trigger. Exhale relief creates a bilevel pressure situation and for a very small percentage of people bilevel triggers centrals.
I have seen it happen. I have a friend who gets about 18 centrals per hour average when she uses bilevel with a difference between exhale and inhale of 4 cm but with a 3 cm difference she doesn't really have any centrals. Sometimes a very minor change in the difference between inhale and exhale can make a big difference.

This is why I suggested turning Flex exhale relief off in your situation. Now with Flex on this machine the most difference you can get is 2 cm but there is a remote chance that your centrals could go away simply by not having a difference between inhale and exhale.
I have seen it work which is why I suggest it.
Plus...turning exhale relief off effectively increases your overall pressure since there is no longer any drop during exhale....if by chance those hyponeas are obstructive in nature then the slight increase in the overall pressure might help reduce the hyponeas.

It is something you can try if you want to while waiting to have a face to face with your doctor.

I'd turn flex off, to see if it helps with the centrals, and I'd set the minimum pressure to 9, (might need to be higher) to handle the obstructives and hypopneas,

Thank you Pugsy and Palerider for your input!! I will try turning off the flex tonight and see how it goes. Quick question, do you think it could be pressure related? If I am looking at it correctly, Wednesdays pressure was the lowest of all of the nights. is it possible that the 2 cm increase from Wednesday to Thursday is what caused this to start? Is it possible that because I have potentially been dealing with this for as long as I have that the higher pressure is causing the lungs to expand farther than they are used to thus causing the central response? I'm wondering if I was to set the pressure at a high of 10 for a few days and then try to slowly bump it up every couple of days would that stop the centrals. Let the lungs get used to expanding properly again. The only real difference I think that I am seeing between the days is the pressure.

Tuesday= Min 5.00 Med 7.00 95% 10.00 Max 11.10
Wednesday= Min 5.00 Med 6.00 95% 10.00 Max 10.50
Thursday= Min 5.00 Med 7.90 95% 12.00 Max 12.00

Does this even sound remotely plausible? Pugsy your excellent explanation of the flex pressure difference is what made me think of this.

Thanks for all of your help and being a sounding board!

Kevin

Your centrals (assuming they are real asleep centrals) have nothing to do with the lung volume and the machine doesn't force more volume into the lungs anyway. The pressure isn't that great until we start getting into the ASV kinds of machines that use a higher PS (pressure support or difference between inhale and exhale) and those machine force a breath with high PS to jump start the breathing that you aren't doing on your own. Higher pressures up to even 20 cm won't even blow up a balloon. You can't use it to stretch your lungs out if that is what you were thinking to do.

More pressure will only help the centrals if they are related to the hyponeas/OAs causing arousals and more pressure reduces the OAs/hyponeas IF (big if) they are causing arousals and false positive flagging of the centrals.
Now it could be that is what is going on...sure wouldn't be impossible.
More pressure could potentially make the centrals worse so that isn't what I would do.

You can experiment but make only one change at a time because otherwise you won't know which change gave you what result.

First experiment...turn Flex off.

Second experiment to be based on what happens with Flex off.

At least that is my opinion.

Thank you! Definitely wouldn't make more than one change at a time. I'm talking about lowering the pressure. That is the only thing that I can see that has changed from day to day. Just looking for the differences from day to day that might have caused it to start up. Definitely going to try flex off tonight

Pugsy if you are ever in chicago let me know! I owe you dinner! You are a life saver! You were 100% correct!! Shutting off flex stopped the real central apneas. According to the app after 2hrs and 53 mins still have 33 Clear airway apnea, 4 OA and 23 H. This is how it should feel! Thank you, thank you thank you!!! I will post the OSCAR info in the morning!

Thank you again!

Kevin