[CPAP] WHY DO I FEEL WORSE?

[FancyCpap]

I am new to CPAP therapy. Have only been using my ResMed Airsense 10 Autoset CPAP machine for a little over a month. I have had no issues with getting use to wearing my AirFit f20. The first night I used the machine I slept most of the night and have had little to no issues with getting use to the therapy since. I know some people do not start feeling better right away with CPAP therapy and that it can take a few months for things to improve, but man I feel awful! I had fatigue and brain fog before starting CPAP but now most days I am so tired I can hardly do anything or think straight. It is taking all my focus and concentration to try and write this explanation and request for advice. I still have to wait 2 weeks to meet with the sleep clinic for feedback. I would so appreciate some advice as to possible adjustments I might make to my machine that could help. I can’t hardly think straight so I hope the info I am uploading is what is needed to give useful feedback. I am posting the results from my home sleep study and 2 nights of machine data. 



  Sleep_Study.pdf (Size: 1.08 MB / Downloads: 9)                

[Gideon]

Welcome to the forum.
Your min pressure is 5, it should not be lower than 7. That allows EPR to work with EPR=3

Your 1st chart had too many centrals so let's cut EPR yo 2, maybe lower later.

[staceyburke]

Welcome to the board. There are a lot of very knowledgeable people on this site and you will start feeling better

A couple of things that would help seeing what will help. You need to turn off the pie chart so we can see more of the left column. And we need to be able to see the flow limits chart.

I would suggest a generic setting for a couple days and then post again.

Min =8
Max =15
EPR =3

That will make your inhale 8 (most adults need at lest this not to be air starved)

Exhale would be 5 (min - EPR)

Max will never get that high it will raise as much as needed to stop your obstructive apnea.

[FancyCpap]

Thank you for the feedback!!!! I removed the pie chart and added in the flow limits chart.  I will try the adjustments for a couple of nights and report back.

             

[FancyCpap]

I decided to only increase my minimum pressure to 7 and did not change the EPR.  I didn't want to change too much too fast.  Maybe this is silly I tend to be very sensitive to medications so always want to take the conservative route with them so decided to take the same route with the CPAP.  I would say my energy is a little better.  I didn't start crashing around 7pm last night like I have been.  I do still feel like I am really having to drag my body around but that is better as well.  But, the brain fog I have been experiencing is still pretty bad.  My AHI's on a couple of the nights after changing the minimum pressure to 7 were the lowest they have been (below 2).  I have my first appointment next week with the sleep lab since starting the CPAP so I hope they don't get all weird that I changed the pressure on my machine on my own.

Besides the sleep apnea which is a very recent diagnosis I was diagnosed with Hyperandrenergic POTS several years ago.  Hyper POTS is more associated with Upper Airway Resistance Syndrome.  But, I could not get the sleep lab to agree to an in lab study where they could see if I had UARS.  They would only allow me a home study which they told me could not tell if I have UARS.  I am just wondering if one has UARS does it just show up as Obstructive Sleep Apnea on a home study or would it just not be detected at all?  I have read that treatment for UARS is the same as with OSA but am wondering if there are things that should be taken into consideration with the types of machines and/or settings used for UARS as opposed to OSA? 

Here is the data from the three nights since changing the minimum pressure on my machine.  Would appreciate feedback.  Thank You.


               

[Gideon]

For UARS the best start in general is a ResMed AirCurve 10 VAuto,
PS= 4 EPAP per CPAP settings, Max IPAP to provide room to work.

[FancyCpap]

I saw my sleep doctor last week for the first time after starting CPAP Therapy. Left feeling very frustrated. She didn’t think I should make any adjustments to my machine because all my data was looking great. Told me to come back in a year. I told her how badly I was feeling and she told me there was medication we could try. I have only been using the machine for a little over a month don’t want to throw meds on top of that!

I made a small adjustment to my machine about 2 weeks ago based on the suggestions given earlier on in this thread. I changed my minimum pressure from 5 to 7. First few nights after doing that I felt somewhat better. Was that because of the adjustments or just the continuing adjustments I would be making to the machine anyway? Probably hard to tell. But, now the last few days with today in particular I am again really tired and have a lot of brain fog. I am very frustrated and concerned because my memory about how I feel over time is just bad. I can barely remember how I felt yesterday let alone last week so making it hard to report to my doctors. And have very little energy and concentration to try and keep a journal or track how I am feeling. Starting to just feel lost in my brain fog which is scary.

It is curious to me that before starting CPAP Therapy I had really low blood pressure – average being between 95/70 to 82/70. I have Hyperandrenergic POTS and I guess UARS is more likely to be associated with Hyper POTS and UARS can cause low blood pressure. Well since starting CPAP therapy my blood pressure has improved now falling more between 109/70 to 96/70. Although, my POTS doctor is saying that the CPAP Therapy would do nothing for my blood pressure?????

So I am posting some data from the past few days to get some more feedback and help. Thought maybe it might be useful to see some of my flow rate events close up as well. The zoomed in data is all from last night. If there is something else that would be more useful to see let me know. I sure appreciate the help and patience with helping a newbie! I know it has only been a little over a month and many people report not feeling well for the first 1-3 months maybe I need to just have more patience????

               

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Here is the zoomed in data from last night. 

                   

[Jeff8356]

I would say start getting your leaks under control. Anything that is going to disrupt your sleep cycle can make you feel tired.

I felt worse when I started. Listened to my dr who turned out to be way wrong. Started taking control of my own therapy from recommendations here and started feelin better. It took many months of trial and error but I finally got it all dialed in. Now i Sleep constantly and my average AHI <-1 almost daily.

So don't give up. Your patience will pay off in the end

[SarcasticDave94]

I'm just adding in a learning experience item, when dealing with doctors, Apnea, and PAP use and settings, first study your PAP settings to truthfully be able to claim you know what you're adjusting and why. Apnea Board will help here. You can base this on OSCAR data, but always include the how you feel factor as well.

Example: you adjusted min pressure, you know that events lowered on OSCAR, and your "how you feel" status is a bit better, tell doc what your did was adjust x and because you feel better for it you believe it was the right thing.

Next, ask doc what he or she thinks about your thought/action process. You're not exactly asking permission, but soothing doc's ruffled feathers because you the untrained medical person shouldn't practice medicine blah blah stuff or you may blow your lungs up or something bad. No PAP can't do it but the old scare tactic is a possiblity of being mentioned.

You the patient can change settings every hour if you choose, it's not a great idea, but just highlighting that you could if you chose to. Your pressure edit doesn't need a new script and takes a few seconds to complete. With doc doing this, you need an appointment next week, convince doc it's necessary, don't forget to pay doc, then a new script the following week, DME makes the edit on week 3. Which sounds better for the patient?

[FancyCpap]

Thanks so much for your feedback.  I am really struggling to try and educate myself on all of this because of terrible brain fog.  If I look at the statistics tab on OSCAR my Average Leak rate over 30 days is 1.68, my 95% Leak rate is 9.60 and my % of time above Leak rate Threshold is 0.06%.  What would be ideal?  Or is there other data I should be looking at concerning Leak Rate?  Any feedback would be appreciated!