Frequent awakenings after 11 months, desperate for help, not sure what to do anymore

[Miau]

For context: 
I started CPAP therapy about 11 months ago. Since then, I have slept with my machine every single night. The first couple of months were difficult but I did all the recommended steps, I researched settings, tried various masks until I found one that fit right, looked at OSCAR and tried analyze the data until I thought the settings seemed "right"...

To be completely transparent, my sleep rhythm wasn't always consistent, I took several trips in this time, and generally took naps during the day when I was tired, or went to sleep early, which I have recently tried to get under control by being consistent with sleep timing. I have also tried to work on my general health such as better diet and exercise. 

Throughout this period, I have seen improvements in certain symptoms, such as the apnea headache that I woke with everyday before, and generally my energy is better, although not what I would consider "normal". I attribute this to the frequent awakenings that I am still experiencing to this day. 

I quit caffeine 32 days ago because I wanted to see if it would help with general anxiety, and ultimately my awakenings, this seems to have exacerbated the problem even further. The caffeine withdrawal made me hyperaware of sleep and made me have insomnia/sleep anxiety. That was a very new problem to me, because of the sleep apnea, I have never experienced insomnia before, quite the opposite I would fall asleep randomly very quickly. I began CBTi for this and now the insomnia from the caffeine withdrawal seems to be under control.

Currently:

I have circled around once more to think that my CPAP therapy is not quite right. I am falling asleep at a normal pace when I go to bed, but I CANNOT sleep. I am waking up anywhere from 8-16 times a night, often with difficulty falling back asleep despite following CBTi recommendations. I am exhausted, I feel hopeless, and I dont know what to do anymore. 

I see others on CPAP sleeping through the night or at the very least for multiple continuous hours and it makes me think that something is wrong. On a GOOD night, I am lucky to get 3 hours of continuous sleep, this usually happens if I basically didnt sleep the previous day and I am dying, sometimes with the addition of taking a very low dose of Xanax (0.5mg) because I start having panic attacks. On a BAD night, ill wake up after being asleep for 10 minutes, 20 minutes, 30 minutes, or 40 minutes. As far as awakenings go, I feel that I am getting up almost as often as without CPAP (for example if a fall asleep briefly on the couch). 


Data:
I am going to include multiple days of data in hopes that someone with more experience can help. All of my days look so different and its hard to say which one is the most "average", I dont feel like any one day shows the full picture. 

I suspect that my flow rate might be part of the problem, it looks to me that its not quite right, but once again, if I knew how to solve this problem, I would not be here. All I know for sure, is that I really need to solve this problem. It is taking a toll on my mental health and my quality of life. 


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[coutherino]

Hello, and welcome. I'm sorry to hear you're having such a rough go with CPAP. I hope the people of this forum can help, Many here have been through similar struggles in the past, including me.

First, I feel obligated to ask a few questions. What specifically do you think is waking you up? What is it about CPAP that bothers you? Is the pressure too intense when breathing in? Is it too difficult to breathe out against the pressure? Is your mask uncomfortable against your face? Do you feel air starved? Is it leaks? Is it anything at all, or do you believe you're waking up for no reason? Explaining specific details like this will help people better understand what to recommend.

As for your data, I kinda wish you would've included the leak graph. It got cut off at the bottom, and being able to see it could provide a lot of insight. Just based off your 95% leak rate on the first night you sent, nothing appears to be wrong. But the second night the leak is likely... quite high.

In the second image you sent, you quite clearly had a hypopnea. A slow decrease in the flow rate followed by an arousal. I'm sure you already knew that, though. This probably means you're on too low of a pressure, but I struggle to just outright tell you to increase it without first understanding what it is you're specifically struggling with.

If you're willing, something that would help is sending a few more nights of data, with a couple 3-4 minutes segments like the one you posted here attached. Ones that precede an arousal/spike in the flow rate, or right before you wake up. Just make sure you include the full leak rate graph in all of them. 

I look forward to being able to help in any way I can.

[staceyburke]

When I read posts as your I look at the EPR settings.  I can't see yours they are on the lower part of the left Column.  I would guess they are off or on Ramp only.  Try these changes and see if it helps.

EPR on FULL  time
EPR 3

[Miau]

Thank you for the reply! Here is more information that you asked for, if there is anything else that you suspect could be causing these arousals I will be glad to add. 

I am including two more nights with the leak rate visible and some segments on each night, I tried to include segments that showed arousals that were marked by the machine, as well as some that were not picked up by it.

What is it about CPAP that bothers you? 
There is nothing that I can tell is specifically bothering me

Is the pressure too intense when breathing in? 
No

Is it too difficult to breathe out against the pressure? 
at my starting pressure no, but if it ramps up and im awake I do find it difficult, ive tried pressure up to 14, which is the point where i truly cannot breathe out. Its also different when I am not laying down, in this case I do feel like I cannot breath out.

Is your mask uncomfortable against your face? 
Not particularly ive been using it for 9 months

Do you feel air starved? 
No

Is it leaks?
I dont think so, my leak rate is typically 0 liters, that second night there does seem to be a larger leak but thats really not typical 

It only lets me upload 3 images at a time so I will add more replies 

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[coutherino]

Thanks for posting all of these. I know that this probably isn't what you want to hear, but all things considered, your breathing actually look quite decent in some of these sections. There are some occasional spikes and sections of unstable breathing, but nothing like what you'd see from someone that is having back to back obstructive apneas or hypopneas, which are what typically wake people up. In some of these sections leak precedes the wakeups, but in some there is none.

I don't have enough to go on to draw an actual conclusion, but it seems like your sleep is... incredibly fragile. You seem to have a very low threshold for arousal. These two screenshots are probably the best you gave, and are kinda what I'm looking for. Mainly the minute or two prior to the arousal/wakeup, and the minute after to see how long it takes your breathing to stabilize, if it even does.

   

   

I marked them both, the flat line representing relatively normal, stable breathing, and the arrow down representing some form of flow limitation. A curved, rounded waveform is what you want to see. But right before you wake up, the breath before, it flattens, in both instances. And then your breathing goes crazy afterwards. You might have to really zoom in to see what I mean on the second one regarding the flattening, but it's different from all the other breaths, if only slightly. That being said, you very well could've already been awake in the second one, until you eventually got tired of waiting and decided to sit up, take a deep breath and turn your machine off. Like I said, I'd really have to see more, but this is possibly what's waking you up. I hate to keep asking you to upload images, but if you could send me a few more of the minute or two prior to waking up from times you're sure you were sleeping, and the minute afterwards it would help me confirm this theory.

If your sleep really is this fragile, and it isn't being caused by something I haven't yet recognized... I must admit to a lack of knowledge on the subject as a whole. I mean, you did say you have insomnia, and that is even further outside my realm. For people with a very low threshold of arousal that need to be on CPAP, I know they can be put on certain sedatives to raise that threshold. But anything that's not closely related to CPAP and sleep disordered breathing, I can offer no advice on.

You said you have not gone a night without CPAP since you started. I know it seems counterintuitive, but have you considered going a night without it? Just to see if CPAP is truly what's fragmenting your sleep so heavily. If not, I think that may be a good idea to try. If only to take a break from something that is clearly putting you under a lot of stress. But it's very possible that this isn't CPAP related, and is being caused by another sleep disorder entirely. One that isn't OSA.

[Miau]

No worries! I will gladly send as many images as you think could help get an answer, I am incredibly frustrated 
I really appreciate the help in analyzing, im not that perceptive when reading these graphs, and i havent really picked up many patterns on my own to help me draw conclusions.


As far as the fragile sleep, I am hoping that somehow this is being worsened by the caffeine withdrawal, I have read online that caffeine affects your adenosine receptors which play a role in sleep. I have also seen people mention having insomnia or awakenings for the first 2-3 months, this gives me hope that some of this is temporary. However, as you can see from the graph in April, and basically all of them in general, I still was having more awakenings than what I believe is normal for quality sleep. Basically it has gone from waking up 6-8 times a night (pre caffeine withdrawal) to waking up 14+ (post). I was still frustrated before, but im at a breaking point now. The irony is that the biggest reason I quit caffeine was to see if somehow it was causing anxiety and it would help with the original awakenings.


I am going to add two more examples like the ones you mentioned. I will include one from a couple of months back when I had the min pressure set slightly higher. 

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[staceyburke]

I will again, suggest that you turn on EPR to full time and set EPR to 3.  I'm sure it will help you.

[coutherino]

Thanks again for sending these. I looked over them, and similar things appear to be happening. I'm honestly at a bit of a crossroads in terms of what would be best to recommend. There appears to be some very minor flow limitation preceding most of these... But I genuinely do not know if that's what's causing it. I can only guess, so that's what I'm going to do. 

It just feels futile to recommend increasing the pressure, even if it might objectively help the look of the data. It will not prevent you from waking up 14 times a night. I am quite confident in that. Maybe it'd help a little, but I don't know. I think you need to talk to your doctor about your insomnia, and possibly consider sedatives or other medications. If CBTI has already failed to work for you, I think it's time to take the next step. Again, I'm no expert on this. Talk to your doctor. I know you're desperate, and I truly wish I could offer something more to help, but it is very clear to me this is not the main issue, at least right now. It is not optimized, but optimizing it will probably not significantly change anything. I still really think you should try a night without CPAP and see if that does.

Just out of curiosity, how did you get diagnosed, through an in lab or at home study? What was your AHI, and what was your RDI if it was measured?

I noticed in some of the screenshots—when you're on APAP instead of a fixed pressure—it hardly even comes close to reaching the top of the range. It is... probably under titrating you. Just in general, APAP is pretty terrible and I recommended staying away from it. That's another topic entirely, though.

There might be some merit in the EPR recommendation the other reply gave. Might as well just try it, since just going off the screenshots you've sent, you haven't done that before. I don't know how much it will help, but at this point it can't hurt. EPR lowers your EPAP (expiratory pressure, the pressure you exhale against) each time it senses you breathe out. So if you're on 10 with EPR set at level 3, you'll only be breathing out against a pressure level of 7. It just subtracts the EPR level from your main pressure, and there's your EPAP. The same logic follows for level 1 and 2. Your EPAP is incredibly important for stabilizing your airway, and preventing obstructive apneas. For that reason, it's usually best to raise your pressure level if you turn on EPR.

If you really want settings, try a fixed pressure of 14 with EPR on 3. I... really do not know how much this will help, and more than these two changes—much more—I think you should research medications for insomnia, talk to your doctor about them, and try taking a break from CPAP for at least one night. I hate that I couldn't be of more help. Maybe someone else here will be... but I think it's a little disingenuous to make it seem as though changing a setting or two on your CPAP will magically make a problem that is very clearly not related to sleep disordered breathing go away.

[Miau]

Thanks for the suggestion!  I will try it out, I have tried EPR briefly in the past and did not like the sensation

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I appreciate all the input, I will try out the suggestions given to me as well as wait a bit longer to see how much caffeine is affecting.