Not feeling better, advice?

[Sleeprider]

Let's take a look at some different data. In your last chart the pie chart obscured a lot of valuable respiratory data, so in Sleepyhead, go to File/Preferences/Appearance and turn off the pie chart. Lets look at another overview of Events, Flow Rate, Leaks and Snores. I'd like to zoom in on the flow rate in an area where you are are taking spontaneous breaths, and in an area where the machine is providing breaths (the black vertical hash on the flow rate). Make the zoomed views 2-minutes in duration so the wave form is visible.

Your median respiration rate appears to be 10 BPM. What is the machine BPM set to? How did you acquire your machine and have it setup? The PRS1 has been replaced by the Dreamstation, and many people do better with the Resmed. I'd like to understand how you came to be using ASV and this particular machine so we can discuss options.

[Easylistener]

OK, my girlfriend is taking a nap so as soon as she wakes up I will grab the SD card and take screen shots of the sleepy head data.. 

As for the machine I will give you my background... 

Back in 2015 I was falling asleep while driving and at work.  I was on a lot of pain meds for my medical condition but I told the doctor that wasn't my main reason I was so sleepy.... So he sent me to the sleep doctor at our company medical center.  He sent me home with a home slep apnea test and I used it for a night.  He said I had bad apnea and sent me to a sleep therapy center and they sent me home with a system one cpap machine.  I used it for a month and saw the doctor again... Based on how I felt and system info he said it wasn't working and I needed a sleep study done.  

So in I went and had one done... They said I had really bad apnea and during the night they couldn't get my ahi down,but got enough info to adjust the machine to help.  So they sent a modem home to add to my cpap so they could watch and make adjustments.  I did that for a month and the doctor looked over my info again and said it wasn't working that I was still having over 100 episodes an hour... 

So he ordered another sleep study with more advanced therapist and fine tuning... After that night they said they struggled but after switching to bipap autoSV mode they made good progress.  So they took my system one cpap and swapped it out with my machine now the system one bipap autoSV machine with modem.  They were making tweaks every night.... This was like a year worth of time here.... My ahi was always about 10-12 even with these settings.... Now at this time my wife left and we started divorce because I couldn't work anymore and I went out on disability.... So I no longer had to get up early for work and I no longer had anyone sleeping next to me that my snoring was bothering....

Now 2 years later I lost 60 lbs and moved in with a great new chick but my snoring was an issue for her as she wakes up at 4am for work... 

So I went to see a pulmonary doc as I no longer could see the same doctor I had before.  I got my two sleep studies and doctors and sleep therapist notes sent to pulmanary doc and saw him... He said boy that machine really wasn't working back when you stopped using it but the 5 nights you used it before you came in it seemed to have been working better... He asked what changed and I explained the 60 lb weight lose and I am no longer on 2,000mg of morphine a night.... 

So he asked if my machine still working and I said yes.  he explained he really didn't like the machine but he knows I am on disability/Medicare with 6 kids and knows money is tight so he would set me up with new mask, hose, filters, ect and see how it will work.... He said he wanted to see me in 3 months to see how it is going.... 

So that was 2 weeks ago and here we are.  I have changed my Epap min down to 10 and that helped me sleep through the night finally and my ahi went from 3-6 to about 4-8 when I did that... So I changed it back and now it's like I get 2 hours of sleep then it just keeps waking me up... So I backed it back down to 11.5 and I go about 5 hours now but can fall back a sleep and get about 7-8....i still dealing with mask leaks but the snugz helped the farting leaks.... The dme is supposed to be calling me about a different mask to try and fix these leaks issues.... The f20 works OK but leaks around the nose and also slips up so my bottom lip falls out as my jaw dislocates as I sleep... It's a med and I think a large would help this issue as that what I had to use when I was using the mirrage fx mask in 2015...i have new cushion coming for that mask that I bought out of pocket to give that a try.... 

So I am willing to try any setting as this point I don't feel good or well rested.... I know my doctor will write a script for a new resmed machine but my insurance is going to complain so I will need some strong evidence to help my doctor argue the new machine, my dme only uses the ResMed machines.... I don't want to spend the 300 bucks that I don't have if it won't help...

[Easylistener]

Here are some zoomed in areas...I hope I got the right sections that you wanted...I took several within that night...My girlfriend is still sleeping so I can't see what my bpm is set at, I don't remember seeing that in the setup area but that doesn't mean it isn't there, which I will look when she gets up.  She is going to the kiss concert tonight so trying to get a little sleep tonight.

Again thanks again for everyones help and patience with me....I am still learning all this stuff and really trying to take control the medical field doesn't really seem to....

[Easylistener]

OK she is up... Bpm is set on auto

[Sleeprider]

Wow, what a story. I agree with your doctor and don't like the machine. If your costs to get the Resmed Aircurve 10 ASV are not out of sight, I'd rather work with that. The 960 is just so slow to respond to events that they happen before the machine intervenes. Not only that, but your machine is broken and should allow PS min to be set. That is a basis for Medicare replacement.

Let's do something really radical. Set the BPM to 9. That is 9 breaths per minute or a breath every 6.6 seconds. and the machine is taken out of the decision.That last screenshot where the OA evens happen, the EPAP is pegged at 15 and the machine has no place to go. Have we discussed a soft cervical collar?

[Easylistener]

Probably way more of my story then you were looking for but would rather have to much info then not enough....

Yes I am not sure who did suggest that but someone did...I actually have several of them and also rigid ones also for when I sublux one of my vertebra in my neck/back....I used it last night and was going to try it again tonight and see if the results are consistent as one night I don't think gives good results as I am all over the place every night...

I also contacted my doctor explaining what I have learned here, all the great thoughts and ideas you all have, and attached some of my info to the email....I asked him for suggestions as I want him to know that I value his thoughts and willing to try several other things if needed.  I explained not being able to change some of my setting and that the machine is reacting very slowly, which I think is why it keeps waking me up...  I am able to afford the new machine if I can get insurance to cover there part as I have a coinsurance of 20% and that all....So after the 12 month rental fee it would be smaller amount that I could handle...There is no way I could afford paying out of pocket for it even a used/refurb unit is kind of out of reach....I don't know how much my machine would be worth, as it has very low hours.....That could offset some of the cost....

Thanks again for all your thoughts and help..

Why do you think the machine has my bpm so high at times...I mean I have seen 15 or more, and your suggesting 9.....Sorry just trying to understand everything and how it works....I am a mechanical engineer by trade so its just in me to try and understand this stuff...I have read lost of articles online but there is so much info i am not grasping all the interactions...

[Easylistener]

I also did some playing around with the settings and it seems that if I bring the Epap max down from 25 it will allow me to change the Ps min by the same amount as the Epap max is down from 25....does this sound right? Epap max is 25 and won't let that go any higher. Although looking at my info I don't get up to 25 very often, 22-23 is about tops... What's your thoughts on bringing Epap down to 22 and Ps min to 2?  Also what is the Ti setting for is that titration?

[Sleeprider]

There it is! If the EPAP max is at 25, there is no adjustment room. My fault for assuming you had the EPAP max at 15. Default settings should be Auto EPAP, EPAP min 5.0, EPAP max 15, PS min 3, PS max 15 and that will be a good place to get back to, but keep your EPAP min at 10.0.

I was not even aware it would allow EPAP max at 25.

[Easylistener]

OK so I made those adjustments but I don't have option for Epap to be auto.... We will see how I do tonight.... I believe back when I was setup we tried these defaults and they moved me because they weren't working but we will give it a try and find out.... Thx for your help....

[Easylistener]

Ok so I changed some things up last night....I changed my epap to 23 and made my Ps min 2....Results where a little better.....I was also wearing the collar again....Below are some results....Any further advice??  I also took off my snugz from my f20 as it wasn't passing the leak check at all...I had to snug up the fit on the mask but I got it to pass the leak check atleast....

I also wondering something...Is it normal for the machine to take almost a min to react to not breathing?  I am steadily breathing at what 8-9 bpm then stop for 50 sec and then the machine forces a breath....Like I said I am new to all this and just trying to learn....I am wondering if the newer machines react faster to things like no breath....