Bilevel machine - advice needed

[LookingForward]

Hi, LookingForward, I'm glad that you've experienced some improvement in your feeling of well-being; that's almost as important as getting your O₂ up (or purging CO₂).  And it's great that your doc replied to you; just wish he had provided a response that addressed your deeper concerns.

I've been a PAPer for decades, but only discovered SleepyHead last winter, and am still a noob/newb about this therapy.  However, Sleeprider has already made the suggestion I would have done: to wit, reconfigure your device.  You've got a week in using the settings that the doc scripted, and prolly have an oximonitor on order.  Give the settings Sleeprider suggested a try and compare the results.  Seems your doc is pretty hands-off, and you have given his preference/assumption sufficient time to accumulate consistent data (albeit not ideal).

BTW, if you don't care to try installing the drivers that  Crimson Nape suggested, a Contec oximeter would still be valuable — although you wouldn't be able to incorporate the data in SleepyHead (SH), you would be able to see your O₂ sat levels each morning and know if you are adequately purging CO₂.  Make sense?

Happy PAPing!

(Please keep us posted on your progress!)

I haven't yet purchased the oximeter. I was trying to see if there was one similar that I could use with my Mac. I looked a little bit into installing the drivers and will need to look again. I'm not real good with that kind of stuff but my husband should be able to help me. I think I'll go ahead and order the one SleepRider suggested and check into installing the driver. Thanks so much.

[LookingForward]

BTW, if you don't care to try installing the drivers that  Crimson Nape suggested, a Contec oximeter would still be valuable — although you wouldn't be able to incorporate the data in SleepyHead (SH), you would be able to see your O₂ sat levels each morning and know if you are adequately purging CO₂.  Make sense?

Happy PAPing!

(Please keep us posted on your progress!)

So you are saying that I don't need to download anything to still be able to see the data, I just can't see it in SleepyHead if I don't download it? 

I ordered the CMS-50F as SleepRider suggested. it's supposed to arrive on Saturday. I think I'm going to try to install the driver but if I can't then I'll should still be able to see the data.

I doubt that I'll hear back from my doctor until sometime next week. I had 87 more Centrals last night. I'm not going to wait until sometime next week to try SleepRider's suggestions for pressure changes. I felt so tired, short of breath and having a hard time functioning this morning. I don't see any reason to keep going that way. At least I have a few things to try now. It will be great to have the Oximeter. That will give me one more piece of the puzzle.

[Crimson Nape]

If you don't install the UART/USB  driver, you won't be able to connect the CMS-50 to your Mac to download the data..  Since the CMS-50 supplied SpO2 Assistant software will only work with a Windows platform, you will have to install #SleepyHead to have a program that will display your data on a Mac.

[Sleeprider]

But Sleepyhead will display the information along with your sleep data.

[LookingForward]

Thanks, I have SleepyHead successfully downloaded and have been using it. I'll download the driver next. By Saturday night, I should have the Oximeter and using it.

[LookingForward]

Hi all, It's been over a month since I last updated this thread. 

I feel at this point that I need to give full disclosure on more of my medical background. I have an adult onset form of Muscular Dystrophy. It's considered one of the more mild types of dystrophy called Myotonic Dystrophy 2. Although it is more mild and I'm currently still on my feet, I've known for many years that the muscles in my shoulders, chest wall, paraspinal and diaphragm are all progressively weakening. Frustratingly though, I've been through several doctors who feel like it for my benefit that they don't tell me exactly what my pulmonary function testing is showing. They just keep saying that I shouldn't worry about it. I'm still in normal range.

The reason for the disclosure is that I did try lowering my pressure for one night to 17 to 12 as per Sleeprider's suggestion. I kept it on Spontaneous Mode. When I woke up the next morning I felt starved for oxygen. I forced myself to stay on me feet for about 4 hours trying to get house work done. By noon I didn't have a choice but to change the settings back to where they were and sit for about 45 minutes using the machine just to get enough air. It did help. Since that time, I've had other days where I feel very short of breath and I just need to go back to the machine to get more air. This is very concerning. 

It really hit home when Sleeprider asked about why the pressure support was so high and the possibility of Hypoventilation. After that night on the machine, I think he is probably right. 

He also suggested that I try to switch to Auto mode but I was concerned to even try it. I didn't want the machine to be able to lower the pressure support since I did so poorly when I changed it so little that one night before. 

I was hoping that maybe the Centrals would somehow correct itself if I gave it the month before going to my appointment. That hasn't happened. I will try to upload some screenshots. I have a Mac and I'm still trying to figure out how low I need to lower the resolution so that I can upload an image yet still be able to clearly see the screenshot. If anyone knows that resolution number, please let me know. 

On September 19 when I checked my SleepyHead report, it shows an AHI of 25.80, Total Centrals for the night was 211, the longest one lasting 57 seconds!!

I've had a good number of nights with Centrals lasting in the 30's and 40's seconds. I'm going to try to upload the images from Sept 19. Most night's my AHI is between 13-20. Almost all of them are Centrals.

My appointment with the pulmonary/sleep doctor is this Thursday. I was all set to go in with printouts from SleepyHead and ask about being changed to an ASV machine. But over the last two days I was reading Joseph's journey to get his ASV machine and clicked on the link that Sleeprider posted of ResMed's Sleep Lab Titration Guide. On page 31 it says that ASV is not cleared for people with neuromuscular disease. So does an iVAPS also take away Centrals like the ASV? 

This is the wording on the guide. Hopefully I can add this into the post.

• ASV’s algorithm is not cleared or appropriate for the following patients:
  - Chronic and profound hypoventilation
  - Moderate to severe COPD
  - Restrictive thoracic or neuromuscular disease
  
• ASV will likely under treat patients with the above condi- tions, and you should consider moving to iVAPS
  

[LookingForward]

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[LookingForward]

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[LookingForward]

If someone can suggest a better way to post a clearer picture using a Mac. Please let me know. Those don't seem so clear.

Also should I be focusing on an ASV or an iVAPS or some other machine?

Thanks to all for this wonderful and very informative board. Every time I read through threads I learn more yet walk away realizing just how little I know about Sleep Apnea, SleepyHead, Centrals and how Myotonic Dystrophy 2 changes the whole picture.

Hopefully I will walk out of Thursday's appointment with test results and either an appointment for a new sleep study or a new machine. The AirCurve 10 VAuto isn't able to do what I need it to do.

[Sleeprider]

You need to be on an advanced bilevel machine known as BiPAP or VPAP ST-A. The main difference is that the ST is intended for treatment of hypoventilation, and while it will follow your spontaneous breathing, it also has a timed function to trigger inhale pressure when you do not spontaneously do so yourself. Thus the name ST (spontaneous/timed). The A version is for AVAPS (Average Volume Assured Pressure Support) which is an automatic function that ensures your tidal volume requirement is met on a breath by breath basis.

Your revelation about medical conditions is important because this is the kind of neuromuscular disorder that the ST-AVAPS is designed to treat, and Medicare/Medicaid requires a diagnosis like this to qualify for the provision of this advanced (and expensive) ma chine. You are using a high pressure support to relieve the effort of respiration, but the Vauto has no backup function, so when you don't initiate a breath, it simply sits at EPAP pressure and waits. I can get into a lot of more complex issues why that pressure support may increase the number and severity of CA without a backup rate, but I'll save it for now. Your tidal volume is pretty good thanks to the pressure support, but you're missing a lot of breaths, probably because of "hypocapnea" which is the result of the pressure support removing carbon dioxide. This results in additional CA events.

You need to discuss this problem with your doctor. Make sure you do y our research on the Resmed Aircurve 10 ST-A so you understand how it works and who it is intended to help. You are on the wrong machine, and this can be fixed pretty quickly, but you will probably have to do a sleep titration test to demonstrate that you benefit form the ST-A function. Here is a search to get you started https://www.google.com/search?q=VPAP+ST-...e&ie=UTF-8

Please do some reading, then come back and let's talk some more. I don't want to throw too much at you all at once, but you can start by informing your doctor of this problem and the need for reconsideration of the type of therapy you are getting. There is a relatively unknown therapy that could reduce your CA events, but it is a bit unconventional. Enhanced Expiratory Rebreathing Space (EERS) is a modification of the mask and tubing to increase the rebreathing of your own exhaled air. http://www.apneaboard.com/wiki/index.php...ace_(EERS) This may or may not apply to you, but it icapable of reducing central apnea event rates from 20 to 40 to less than 1 per hour.