[split] Doctor won't help improve Vauto settings

[JohnCondor]

H,
I'm looking forward to feedback from the users and moderators. I too have had problems with the air pressure settings being so high I could not comfortably breath. Air is being blown into my stomach and I have to fight the machine to regulate my breathing. I have told my doctor about this more than once and he insists that I continue to use the machine with the prescribed settings to get data on my therapy progress before making any changes.

It seems ridiculous that the doctor isn't willing to listen to my feedback and make some minor changes that could make it possible to use the machine. Right now the best I can do is 30-45 minutes before I give up and turn off the device. Last night I wanted to throw the machine across the room but it would wake up my wife and there would be water everywhere. 

After several months of going back & forth with the doctor I tried changing the settings myself to lower the pressure. I was given the settings by one of the techs at the DME rental company... I could actually sleep up to 6.5 hours and the events per hour went as low as 8 on one night. The average was still 15-25 per hour - much better that the previous numbers of 35-50.

I recently sent a message tot he doctor saying the machine is not helping at all and I can't use it with the current configuration. I said I was so frustrated I am considering returning the equipment. The insurance company has been paying for the rental but if I don't show any significant benefit they will stop paying for the device.


It's been several days and I have not heard from the doctor. I don't know what will happen so I joined this forum to get some insight and possibly some helpful advice. (I also thought about changing doctors).

[Sleeprider]

John, this is an excellent question, and we are here to put the power in your hands to take control of your therapy. First step is going to be to download the free OSCAR program and upload data from your Aircurve 10 to Oscar. This will give us the details needed to analyze your therapy and setting and get you on the right path. Hopefully your device has a SD card and you have a computer, laptop or Mac available. If any of those elements is missing, let us know.

Sleep doctors are poor caregivers. I recommend that most people discontinue routinely seeing a sleep specialist and transfer their care to their main GP doctor. Your regular doctor is capable of issuing prescriptions and ordering therapy revisions through your DME without tripping over his ego. I'm certain we can get you on the right path. Your event rate is quite high, and we need to see the Oscar data and graphs to know why it's a problem. A high residual AHI is typically either central apnea or a positional issue. What kind of events are you experiencing? Your current profile shows 20/16 as your settings which is a pressure support of 4.0. There are a lot of solutions we can use, depending on the problem, and some of them you doctor doesn't have a clue about. Let's see the data.

[JohnCondor]

Hi,
Thank you for the encouragement. Being tired and cranky all the time sucks. It's also scary to be nodding off while driving, falling asleep at traffic lights, and losing focus so often it takes and hour to respond to an email or fill out a simple online form.

I'm reviewing the instructions for using Oscar software. I was able to download the data from the AirCurve 10 ASV. I hope to take a screen shot of the appropriate data and attach the image to a message.

For most of my life I just thought I was a "light" sleeper, when actually I was a "non-sleeper". Then after the motorcycle crash in 1985 and spending 5 days in ICU on a ventilator while fully awake/conscious, I was getting even less sleep. Anyway, I finally went thru the long and difficult process of getting diagnosed for the 2nd time with sleep apnea and made the commitment to using a CPAP machine.

Thanks again

[Sleeprider]

I look forward to helping.  I'll attach the default decision tree for titrating the ASV, but we often optimize to minimize the amount of pressure change and pressure support allowed to enhance both comfort and efficacy.  Getting your chart will let us quickly see where the problems lie and move on from there. Until your last post, we did not know you were using ASV. Please modify your profile to show this as your machine. https://www.apneaboard.com/forums/usercp.php You have achieved Member status now, so you can post links to images you host on sites like Imgur as well as use attachments.

[JohnCondor]

[attachment=59787]

Hi,
I updated my profile to show the AirCurve 10 ASV machine. I am attaching the sleep study report for background info and history of my apnea treatment.
I'm not sure yet how to setup the Oscar software to display the best information to help you understand how the machine is working for me.

I'm reading thru the documentation.

A sidenote of possible interest - I have been experiencing sleep paralysis episodes periodic for the past several years. I would have them once a month or less. Since I started the apnea treatment these episodes have increased dramatically to several times a month and recently a few times a week. The other night I had 3 episodes in one evening. 

They usually happen when I am reclining while watching TV or when I doze of when reading. When I doze off I will be between sleep and wakefulness when my apnea kicks in. My brain wakes up and says "you need to breath". I am not able to move at all at first then I start to struggle to wake myself up. I have a really hard time moving my arm or leg. I can't speak or even may a loud noise. I start shaking my head and sometimes that wakes me up. If it doesn't I try really hard to lift my arm. Sometimes I can lift it up but I still have no control and my arm drops back down. By then I have started to panic. I have had the occasional hallucination - like seeing a person who is not there.

The other night during a particularly frightening episode that lasted 20-30 secs, I was able to force myself into a sitting position but I still didn't wake up. My head flopped forward and I was having a hard time getting and air. I finally woke up and was in a lot of distress as I tried to breath normally.

My wife is often asleep on the couch in the same room and can't hear me. Once when she was awake and witnessed the sleep paralysis she thought I was having a seizure or heart attack.

I have mentioned my sleep paralysis to all my doctors and none of them thinks I should worry about it. They have no treatment or suggestions other than don't fall asleep in a recliner. Unfortunately, I have these episodes during the night after I have gone to bed and been asleep for a while.

It is really scary - even writing this is making me emotional. I feel like I'm completely nuts.

And maybe this is just one of the possible consequences of decades of untreated sleep apnea.

[Sleeprider]

In my signature are a number of links to our wiki articles. You should read the Organize Your Oscar Charts http://www.apneaboard.com/wiki/index.php...ganization

Also, if you are prone to sleep paralysis with positional sleep apnea, we will see that in the charts, however you may want to read the article on Soft Cervical Collars http://www.apneaboard.com/wiki/index.php...cal_Collar

Your attached sleep study is really interesting, however you may want to redact personal information. You can manage that attachment at any time in your User CP if you do not want that information posted. https://www.apneaboard.com/forums/usercp.php The study was all based on spontaneous CPAP and bilevel and did not include ASV. Once we know your current settings, I'm sure we can get you on the right track.

[JohnCondor]

Thanks, I deleted the attachement.

[SarcasticDave94]

The ASV may be a higher level machine, but if I can set my own anyone can. Dr. Dolittle isn't required. You have up to 4 pressure settings and mode, besides comfort items. Show the data and we can advise and you'll be doing better within a very short time.