Still tired with cpap

I’ve been on a cpap machine for about 4 years now and for that long I don’t think it’s working. I’m 34 years old male. I was diagnosed with obstructed sleep apnea along with other conditions like overweight, prediabetes and hypertension. I was able to reverse all of it through ketogenic diet and lost about 35lbs. I am now at my goal weight. I’ve been through it all pulmonary, cardiologist, ENT and all of my tests are normal. The only thing I have is anxiety I get PVC frequently. Anyways I’ve had many type of machines and masks now I have the Phillips dream station and the philips dream wear. I’m also able to change my own pressure I know the little trick to do it. Even so with my prescribe pressure it’s not cutting it. I used a humidifier and the tube as well with or without it still same results. I tried messing with flex nothing helps. I miss waking up refresh and it’s a hit or miss hit thing. But I feel more tired than refresh more than anything. My ahi levels are good and no leaks either.

Dreamstation is a model series, which 1 do you have?

I would suggest posting the daily detailed view from Sleepyhead. The data will help you to get much better advice. How are your Flow Limits and RERAs? One other thing prediabetes is to diabetes what Stage 1 is to cancer. You HAVE diabetes, just at an early stage.

As bonjour suggests a good starting point is to download SleepyHead and post a screenshot of your Daily Detail. It will look something like this. It is freeware and you need a PC or Mac and a SD card reader to transfer the data from your machine to the software.

Hi e92type

It sounds like you have done very well.

Congratulations on accomplishing what so many of us wish to, but rarely ever manage.

I would love to know what steps you took to achieve it.

Without numbers I am only hypothesising but if you have largely removed the cause of Apnea why would a CPAP machine help you to feel refreshed?

What happens if you sleep (on your side) without the machine?

There could be many other causes for tiredness.

I would think you also need to check that your anxiety and PVC's aren't causing fatigue. If all is good with the machine (try Sleepyhead) then other things need to be ruled out. Sounds like you have checked on a lot of them but sometimes a low normal reading can cause problems.

I trust that you have shared all of this with both your Sleep Doctor and your durable equipment provider. If not, please do so.

I sure wish I knew how to change the pressure rate on my Phillips box...I'm having to set up another apt as they haven't seen me in a year and refusing to do so over the phone! Bad thing is my insurance rarely pays all the bill and usually sticks me with about $200 charge :(

i was wanting to change my pressure since i've changed from a full mask, where i felt i was gasping for air so i needed it very high, to only nose pillows where i will need it much lower. thankfully, the docs are working in tomorrow! jim

thanks Sierra! i'm seeing them today...

I hope I am not writing this out of turn. I have recently failed CPAP and then prescribed a Bipap Respironics Auto Pro. My problem remains I do not feel refreshed even after using my CPAP and now, I don’t feel any better after a nights sleep using my new Bipap. My events swing wildly from one night to the next. For example, one night I will get an AHI of 19 and the next night I get an AHI of 109 and, two days later I got an AHI of 106. My current month AHI average is over 30/ hour. I also have severely high central Apnea as well. My doctor wants to order the MSLT test for Narcolepsy but for some reason I don’t feel I have that. My problem continues to be that even after sleeping with my Bipap Full face mask within a couple of hours I cannot concentrate because I am fighting the urge for me to go sleep. So, I have to take multiple naps during the day. I don’t feel rested and would really appreciate any help from anyone here. Thank you in advance.

Hi Sierra, Yes I was getting high AHI scores as well. And they too seemed to be highly variable. That's why I failed CPAP. My Pulmonologist after looking at the SD card data said yeah, you're failing CPAP. and said we need to get you on BIPAP. But he said if he didn't have to listen to insurance managed care onterference, he'd bring me in to do that 2 day MSLT test for narcolepsy he'd recommend that. My issue is that the Sleep lab told me the only way to get the MSLT approved would be to get me back on the sleep lab re-titrate do I get fewer than 5 APNEA events per hour. She seemed pretty surprised I'm showing my high apnea events because she said her sleep already titrated me below the magic 5 events per hour. What irritates me is the time involved doing this. I keep telling my doctor and RT that I remain concerned driving because doing so means high chance of falling asleep. I hope I am not complaining too harshly just that I'm aggravated with all this. My wife cannot drive me everywhere. She's pretty much become my driver. Can you explain what I need to do with sleepyhead software. I'm not the most technical guy. Thanks!!

Hi Sierra, Thank you for responding. At my last sleep study they increased my pressure from 7 CPAP pressure to Bipap titration 13 ex and 9 inhale. That night they said my events dropped to zero which I question because I continue to see events really high and being really variable. When I get back, I will a SD reader and download sleepyhead. What do you suggest download sleepyhead or the Oscar program. I’m very unknowledgeable about both. Thanks for all the help. When looking at report, what items should I keep an eye on? Any ratios algorithms normal vs abnormal? Tx!!

Hi Sierra. Thank you for all the ideas and help on this. I've not gotten Oscar or the other program. But, I've since seen my doctor and he's scheduling a MSLT narcolepsy test whenever insurance will approve. Personally, I don't think that will happen for a while since my sleep study office is saying insurance will only pay if my AHI is below 5/hour before they will approve the two day or so test. What the sleep study place is saying is that I will have to get another bipap titration test again this time with the goal of getting it down below 5/hour which is the same goal as the recent bipap titration study had the first time. Plus, my events will need to show that the AHI is 5 or below? Interesting? What makes no sense is that is what happened the first time; which means the office bipap titration study of which they said they got my APNEA AHI below 5 the first time they are now going to do same same test with same goal with probably same outcome?? Wasn't that close to the definition of insanity, expecting different results but with same goal? I did try to get a few things done as per your suggestions but it appeared that they'd (doctor) prefer to not have someone suggest something they have no training in. So, I remain tired, not driving much unless wife is with me, and taking multiple naps throughout the day making me feel like I'm extremely ancient. However, I've since seen my PCP and he's referring me to a neurologist and ENT. In the meantime, I will try again to get a SD reader and download those programs (probably Oscar). Again, thanks for all your help and ideas. Again, thanks Sierra for all your help!!