Bilevel machine - advice needed

[LookingForward]

Sleeprider, Is this the machine that would be best? I think this one is the newest version of a Bilevel with ST-A. Or are you thinking of a higher level machine? Am I on the right track?

https://www.resmed.com/us/en/healthcare-...0-sta.html

https://www.resmed.com/us/dam/documents/...er_eng.pdf

When I went to my doctor in the spring and when I went to the previous sleep studies, I printed a copy of that specific website and machine and was told that I don't need it, my breathing was not being affected by the Muscular Dystrophy, all I needed was a regular machine. The doctor wouldn't even consider allowing the sleep tech to test for anything except traditional CPAP and BiLevel. Of course these appointments were before the sleep studies were done and before 2-3 months on a Bilevel machine in spontaneous mode which is now showing so many Centrals.

[Sleeprider]

Your results speak for themselves. You are experiencing numerous central apnea, and the close-up of the flow-rate confirms that they are real. Based on the duration of the events, these are not trivial. About the only thing I can think of that you could add is a recording oximeter to see if the events are causing oxygen desaturation. The monitors are inexpensive (see Supplier #19). I don't know what your doctor was looking at in the Spring, but you probably know if your event rate has increased. Even if he did not see these apnea then, they are more the byproduct of the high pressure support, than the dystrophy. So I suspect that the situation has changed since your doctor last reviewed this. What was the situation then? What treatment prescription was his conclusion then based on? Has he seen these extensive clusters of central apnea.

Give him a fair chance to recognize the problem, but if he simply rejects your concerns, you need to change doctors. Keep in mind insurance requires you to fail CPAP/BPAP before the ST or ASV will be considered. That may explain why you were not tested for any advanced therapy, Do you have any experience with the Cleveland Clinic sleep center?

[LookingForward]

I guess I was thinking that in a round about way the Centrals are also a part of the Dystrophy because the Dystrophy needs the higher pressure support. But I'm open to hearing if I'm thinking in the wrong direction.

I was originally diagnosed with Sleep Apnea in 2016 through the Cleveland Clinic Sleep Center. Although I know that many people have a great experience there, I did not. At that time the sleep study showed that I needed the BiLevel ST based on neuromuscular protocol, I had to fight hard to actually get the machine. I guess the Sleep Tech was new and didn't realized that he wasn't allowed to switch me over to that setting without the doctor's approval. The insurance company was actually the easiest to work with. They didn't hesitate to give the approval. I ended up with an AirCurve 10 ST machine that must not have been set right for me. Every time I used it I felt so starved for air the next morning. This feeling lasted for a few days. I didn't know how to change the settings so the pressure was correct to make it work and the doctor wouldn't help me. He just wanted me to switch to a lower level BiPap machine. I ended up taking the machine back. I waiting two years and started all over again with this new doctor that I now have.

The first sleep study in May was one to watch the CO2 level all night. It also showed I have OSA. The second sleep study in June was the titration with the mask. 1/2 the night on CPAP the second half on BiLevel. From that study came the current pressure settings I now use with the AirCurve 10 VAuto.

I'm not happy about the amount of centrals that I have every night but I also learned on here about a month ago that I needed to fail on the machine that I have in order to really get the doctor to make changes. So with the current machine and the current pressure support I am getting more air every night, even though I'm failing on the machine.

So I'm waiting for the appointment on Thursday and in the mean time trying to figure out what are the most important things to learn before going.

I don't have the results from the other studies. I will be asking again to receive printed copies on Thursday. I'm also going to walk in with some printed pages of SleepyHead showing how many Centrals I'm having per night and close ups to show the Centrals are real. I'm also going to learn more about the AirCurve 10 ST-A before the appointment.

[Sleeprider]

I hope you have copies of your original sleep study and recommendations from the Cleveland Clinic. These can help you as you move forward to try to get the appropriate therapy. They also directly refute the assertion of your doctor that you don't need a bilevel with backup rate. Your experience with Cleveland Clinic is not unique, and I have heard several stories of patients not getting the kind of support they need to succeed in therapy. In your case, the complexity of the therapy should have warranted more intervention and assistance. Of course if you should find yourself in this situation again, the forum can be a good resource for you to get practical advise and support.

The other potential solution for you is the Aircurve 10 ASV. The ASV provides the most advanced therapy of any of the machines. It can provide to you the auto-adjusting EPAP and high pressure support you now use with the Vauto, but more importantly, it can provide a backup to keep you breathing in the event of central apnea, and this can be accomplished at lower pressure. On the ASV, your settings would be simple; EPAP min 8.0, EPAP max 12.0, PS min 6.0, PS max 12.0. These settings would provide the minimum pressure support you now find comfortable, and would automatically trigger inspiration pressure with up to 12-cm of pressure support when you experience a central apnea (no effort to breathe). This would seem to resolve both the need for pressure support for your neuromuscular disorder and the central apnea that occurs as a result of using high pressure support. I think there will be some resistance to letting you try ASV, but I also think it will be the best possible solution.

[LookingForward]

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.

Sleeprider, Thank you for the offer to talk some more about this issue. I'm sorry that I haven't gotten back to you sooner. My days have been busy and when I go to sit down, I generally fight not falling asleep. Concentration and memory have not been right for a while. 

I can see how the iVAPS Therapy provided by the ST-A and the ASV would be a good thing for me. 

With all the centrals, a machine that can target ventilation at the alveoli would be a huge plus for me.

It's funny how I knew I wasn't taking breaths but your wording that I'm missing breaths really hit home. And with 120-200 Centrals a night, often lasting 25-45 seconds or more long, that's a lot of missing breaths and It finally makes sense why I'm so fatigued all day and often feeling short of breath for a while after I wake up. 

Through reading the Sleep Lab Titration Guide, the graph on page 35, showing Breaths Per Minute now made sense too. It shows the patient effort and then no patient effort (which describes my nights) but how the Intelligent Backup Rate kicks in and makes the patient take the breath(s) that would have been otherwise been missed. The AirCurve 10 VAuto can't do that. 

Another part of the Guide on page 41 that shows "Setting TiControl" caught my attention as to how low on that chart my respiratory rate is. When looking at my past SleepyHead charts, my average Respiratory Rate for most nights shows that 95% of the night my rate is averaging between 12.5-14.5. I think since Aug 9, when I first started seeing my results I've only had 2 or 3 nights higher than 14.5.

Considering that chart only goes down to 12, that's pretty low.

When I go my appointment tomorrow I don't know if I should focus on the ST-A or the ASV though. Maybe either would be fine if the doctor will agree. 

I'm still trying to figure out Rise Time, Trigger & Cycle Sensitivity, Tidal Volume and so many other things. As I've said before, every time I learn something new it shows me how much I don't know. But I have a willingness to learn. And I'm very thankful for so many others on here that do have a lot of knowledge about all of this.

[LookingForward]

I hope you have copies of your original sleep study and recommendations from the Cleveland Clinic. These can help you as you move forward to try to get the appropriate therapy.  They also directly refute the assertion of your doctor that you don't need a bilevel with backup rate.  Your experience with Cleveland Clinic is not unique, and I have heard several stories of patients not getting the kind of support they need to succeed in therapy. In your case, the complexity of the therapy should have warranted more intervention and assistance.  Of course if you should find yourself in this situation again, the forum can be a good resource for you to get practical advise and support.

The other potential solution for you is the Aircurve 10 ASV.  The ASV provides the most advanced therapy of any of the machines.  It can provide to you the auto-adjusting EPAP and high pressure support you now use with the Vauto, but more importantly, it can provide a backup to keep you breathing in the event of central apnea, and this can be accomplished at lower pressure.  On the ASV, your settings would be simple; EPAP min 8.0, EPAP max 12.0, PS min 6.0, PS max 12.0.  These settings would provide the minimum pressure support you now find comfortable, and would automatically trigger inspiration pressure with up to 12-cm of pressure support when you experience a central apnea (no effort to breathe). This would seem to resolve both the need for pressure support for your neuromuscular disorder and the central apnea that occurs as a result of using high pressure support.  I think there will be some resistance to letting you try ASV, but I also think it will be the best possible solution.

I do have the copies of the final results of the Cleveland Clinic from two years ago that shows that I needed the Backup Rate. I don't have the actual full report of the whole night. I'm planning to ask again for the results of the May and June 2018 Sleep Studies tomorrow. It will be interesting to see the difference. 

I know that my ability to breath on my own at night has declined in the last two years. Two years ago I did have to sleep in a reclining position, but I woke up feeling fine and could function fairly well. Now when I wake up after a night of breathing on my own, I'm short of breath for several hours or sometimes into the afternoon. I'm so exhausted just from trying to get enough air. So no matter the result tomorrow I don't have a choice but to stick with the machine I'm now using just because I breath better in the morning after using the machine, even after all the centrals. 

I also looked a little bit into the EEEP information that you gave me the link to. I'm going to need to read that again too. It looked like a possibility to try. But for tonight and the 5 or 6 hours that I'll have before my appointment tomorrow I'm going to concentrate on learning more about how the ST-A and ASV would be helpful for me. 

Thanks for the offer to help after you now know about the Dystrophy and with the settings on a different machine. I value your input.

[Sleeprider]

The problem is self evident and you can't tolerate the lack of sleep and loss of basic functionality due to fatigue. Your doctor should help. The data you have shown with all the centrals should help. Take the original recommendation showing the need for backup rate! If you doctor just refuses to listen, you must find one that will. Let us know how the appointment goes.

[LookingForward]

I had my appointment a little while ago. 

The Doctor seemed like he didn't remember me even mentioning the Centrals before. And he must not have reviewed the June Sleep study again before talking to me. He said that May and June Sleep Studies didn't show Centrals. I did get copies of them and the June Study says that at 18/12 fixed pressure that it did control all Obstructives but not the Centrals. The study recommended the doctor following up on the Centrals and if they persisted to try a Bi-level with a Back Up Rate.

The Doctor said he had never seen Sleepy Head reports.  Although I gave some to his secretary in August. Plus also sent messages to him through MyChart. At first he tried to say that I only brought him one or two rare nights and the centrals probably resolved themselves. But I also printed the SleepyHead Overview page and gave that to him so that he could see that the Centrals have been there all along and are not resolving themselves at all. He also said that he's never heard of Clear Airway Events and didn't know how I expected him to believe that the are Centrals. But I brought zoomed in pages from Sleepyhead, the one's I've posted on here. He looked close and agreed that they were legitimate Centrals. 

When he realized I knew as much as I did, he asked me if I know which machine controlled Central and I told him an ASV machine. He then agreed that I needed a new sleep study using an ASV machine to figure out the correct settings. He asked if he could keep my Sleepy Head printouts to help the sleep tech figure out the correct settings for me.

I asked about the Bi-level ST-A and he felt that part of the problem two years ago was due to the backup rate. He felt the ASV was a better choice and made more sense for me now and in the future as my respiratory needs change. He wanted the sleep tech to adjust the settings so that the backup rate wasn't kicking in very often.

He also said that he was going to tell the lab tech that he wanted the Min EPAP to stay at 12 and have them set the higher number above 18 to stop the Centrals. 

So he is starting the process again for the new sleep study and new machine. In the summer the process took about 8-9 weeks. So I'll be using my current machine for a while yet.

[Sleeprider]

That is a great outcome!  Now we need to work on him a little more...

Here is the Resmed recommended titration protocol for AutoASV. It starts at EPAP min 5.0, EPAP max 15.0, PS min 3.0 and PS max 15.0.  I already suggested your ASV settings could be EPAP min 8.0, EPAP max 12.0, PS min 6.0, PS max 12.0.  As you can see, his recommendation is at the top of the range I have previously suggested.  We need at least 8.0 EPAP for OA, and we need the 6.0 PS min to preserve your comfort and tidal volume. PS max can range from 12 to 15 to ensure hypopnea and centrals are treated. It is very important that your doctor pay attention to not just your EPAP, but the fact you need that minimum pressure support, or you will not get the titration you need. In fact centrals may not show up, or you may not sleep if you are given only the 3.0 PS min in the Resmed protocol.

You may end up needing an EPAP of 12, but a titration should not start at what we assume to be the target. A good way to guide the technician would be to start below your current EPAP pressure and use normal titration techniques to determine the need for higher pressure, because you are going to get more comfortable therapy at a lower pressure provided it works.  So ask the doctor to "titrate" the pressure starting at a lower pressure than your current machine, increasing EPAP if needed to address OA, maintain your needed PS min of 6.0, and use the pressure support maximum to treat the hypopnea and centrals. This approach is consistent with the recommended titration protocol and may yield effective treatment at a lower EPAP pressure. There is certainly no harm in trying to make lower pressure work, especially since you want to be issued a modern auto-ASV. The objective should be to find an effective range that uses the advantages of auto ASV rather than try to determine a fixed pressure. 

You're almost there, now read this protocol and ask any questions:

[LookingForward]

I don't think I'll have an opportunity to discuss anything with the doctor to be able to start the EPAP pressure lower. He's a doctor that doesn't want to answer questions or change anything until my next appointment, after I get through the process again of insurance approval, sleep study, DME, using the ASV machine for at least 31 days before next appointment, according to insurance rules. My next appointment is on Dec. 31.

So at this point I'm on my own with the help on the forum to get this figured out. I think my best chance to get the pressure adjusted differently is to go in well informed at the sleep study and talking to lab tech while being wired up for the night.

I have a couple beginning questions. I'm sure there will be more coming. I've read on here somewhere that adjusting to the feel of the air pressure on an ASV is different from the BiLevel S. Do you know the difference in how it feels so I can be prepared for the sleep study?

Also I'm still trying to read though and absorb RobySue's Sleepy Head Information just to learn the basics. You've mentioned that the ASV as two different EPAP numbers but you aren't mentioning an IPAP number. Why two different EPAP and no IPAP?

I also like your suggestion to start the EPAP at 8 for the study and go up from there. Why 8? I'm guessing because I'm currently using and EPAP of 12 so anything lower than 8 would be too low, I wouldn't feel like I was getting enough air.

Another question, does the ASV have a fixed pressure setting so that I can be assured that on auto it doesn't go below 6?

I did ask the doctor about my current setting the with PS at 6 and ask how he knew that I would need it that high. He looked confused and said that number was what the lab tech found worked best for me. But I know that when I went to PS of 5 (17/12) for the one night I couldn't function the next day until I changed it back to PS 6 (18/12) and sat breathing through the machine for almost an hour.