How concerned should I be about the length of these Centrals?

[Matt00926]

It's possible there is another cause for the shortness of breath and fatigue. Have you been checked out cardiac wise?

Your tidal volume looks good, and so does your inspiratory times, but it's interesting that you are such a slow breather, causing your minute ventilation to be rather low. This could be normal for your metabolic needs, it just stood out to me as interesting.

Do you have any other symptoms upon wakening such as a headache (that slowly goes away)?

[Sleeprider]

Tell me again, why we waited so long to do this?

I had gone back to the original thread to get your recommendations. On that thread you made several suggestions. On a few nights I did switch to one of the suggestions you gave but I ended up switching back and not trying anything else because I realized how angry my doctor was when I told him that I started off using my mom’s machine to help me get used to therapy before my machine arrived. He also got really angry when I pushed to get the Auto machine when he was only willing to let the sleep tech stay on Spontaneous mode for the sleep study back in June. The doctor was mad that I went out on my own and started learning about all this. So I didn’t change the settings further because I didn’t want to further rock the boat. I wanted him to stop being angry and possibly work with me. 

Now that the new ASV study is done, he won’t look at what I’m doing with my current machine and he’s still angry. So now I will change the settings! 

Last night I went back to that original thread and looked up your recommendation for the Auto setting and decided to give it a try. 

I’m still a bit short of breath and very tired even though it’s noon. But I’m willing to make further changes in the settings for tonight if you think you can help me not wake up short of breath anymore.

It's really rewarding to get your AHI results to a very good range.  Now we work on comfort.  i'd like to first review why you are on bilevel and how your doctor managed to,put you on such high pressure and pressure support.  Is there anything you can offer as to how he arrived at his prescription?  if not, then I'm going to go on our experience to make recommendations for comfort.  Let's first go one more night at these settings, Nd be sure we have a good baseline.

I'm open to what your doctor comes up with, but in the end, you need to fire this guy. An angry narcissist is not concerned about you, and you know that. Your top priority is to get the records of these tests for when you move on..

[LookingForward]

It's possible there is another cause for the shortness of breath and fatigue. Have you been checked out cardiac wise?

Your tidal volume looks good, and so does your inspiratory times, but it's interesting that you are such a slow breather, causing your minute ventilation to be rather low. This could be normal for your metabolic needs, it just stood out to me as interesting.

Do you have any other symptoms upon wakening such as a headache (that slowly goes away)?

Your comment that I am a slow breather is very interesting to me. I'm still way too new at reading the charts and would love for you to explain how you see that. I want to be able to discuss it with a physician at some point. I think that's the root of the shortness of breath.

I have an adult onset form of muscular dystrophy. It's considered one of the most benign types but it's very much effecting my muscles. It's a form that doesn't effect the actual organs but does effect the supporting muscles surrounding the organs. I do know that it is effecting my chest wall muscles and also by diaphragm, shoulder muscles and muscles that support the spinal cord. All the supporting muscle groups needed to breathe normally.

The thing is, when I have pulmonary function testing, I still test in the lower end of the normal range, the total lung volume is around 88-90%. And when I have CO2 testing, I also test in the normal range. So as far as pulmonary in concerned I shouldn't have a problem with shortness of breath.

I had an echocardiogram in January 2018 and my ejection fraction rate was 70%. Considered perfect. Yet the comment was made during the test to a physician in training that there was an obvious slowdown of the rate the blood was flowing from the lung into the heart. A sign of weakening chest wall muscles he said. At some point it will probably cause pulmonary and cardiology problems. My EKG is also not coming out normal anymore but I'm told that it's still in a range that is acceptable so that shouldn't be the cause of shortness of breath. The cardiologist said that unless I notice big changes that I don't need to go back to see him until summer of 2019.

But I can feel big differences in the onset of weakness over the last year. The weakness is much more pronounced and the disease is getting much harder to manage. I can also tell a negative difference in my ability to breath. But the testing doesn't support what I can feel happening. I also know that I breath too slow, especially at night. But am told that I'm still considered in the normal range. I'm told not to concern myself with it. 

I can also say that when I don't use the machine at night, my breathing has changed enough that I'm really short of breath the first couple hours but it usually does goes away. With the machine, the shortness of breath often doesn't go away all day. I have been hoping that with the support of the machine that breathing would get better. I'm still holding out hope that the settings might be able to be tweaked and minimize or stop the shortness of breath. As long as I have shortness of breath, the fatigue and muscle weakness is more pronounced. 

So basically I'm told that both pulmonary and cardiology testing is fine. It doesn't matter to physicians if I can tell a big difference. At this point, I fully believe the root of the shortness of breath could very well be from the Dystrophy. But officially I'm told that it doesn't effect me enough yet. 

I'm fortunate that I'm not prone to headaches, even from sleep apnea. So no, that isn't an issue. 

I also only take vitamins and minerals. I have No prescription medications. Every once in a while I take an Advil before falling asleep if my muscles are hurting. But most of the time I only take it maybe once a week. 


Thanks for your comments and observations.

[Matt00926]

Thanks for sharing that information. Your central apneas could be due to muscle weakness in the diaphragm, which particularly occurs during REM sleep, since you have a muscular dystrophy. Judging by the distribution of your AHI (100% is centrals), it's possible that you don't even have regular obstructive sleep apnea...meaning your airway does not become obstructed while sleeping.

Maybe you just need ventilatory support via a bi-level machine with a backup rate. In that case, a machine with the S/T mode would be preferable to the ASV, in the setting of a muscular dystrophy. S/T mode will augment ventilation and increase muscle rest. ASV constantly targets 90% of your own recent minute ventilation; so if your ventilation is inadequate on its' own, the machine will constantly underventilate you because it keeps resetting the natural baseline.

VAuto mode is meant to respond to obstructive sleep apnea events, and does not really provide ventilatory support beyond the modest PS of 4. You can of course increase the PS in VAuto mode, but once you increase the PS too much treatment emergent central apneas can surface...which I suspect is a possiblity in your case, as the decrease from PS 6 to PS 4 basically eliminated your centrals. But I bet you could do PS 6 with a backup rate and get the same great results, if my above theories actually have truth to them.

Pulmonary Function Testing is not necessarily helpful in the setting of muscle weakness, as the tests are mostly designed for lung/airway diseases (to find restrictive or obstructive defects). What is most important is measuring your forced vital capacity while sitting up and lying down.

Your CO2 levels also may be normal during the day, but it's possible that you're hypoventilating at night when you sleep, and then your body is blowing the excess CO2 off all day. It's really hard to say though, because your tidal volumes look pretty normal assuming you're of average height. But you could have an inappropriately low breathing rate that does not allow for adequate ventilation.

What we don't know is the exact reason you stop breathing at times during the night. If you were able to borrow a S/T machine with a backup rate somehow, you could easily test by enabling s/t mode and checking the spontaneous trigger % value results for a night of sleep, with an artificially set very low backup rate, to let you spontaneously trigger as much as possible. If the % is low, it's definitely possible muscle weakness is the reason.

[LookingForward]

Tell me again, why we waited so long to do this?

I had gone back to the original thread to get your recommendations. On that thread you made several suggestions. On a few nights I did switch to one of the suggestions you gave but I ended up switching back and not trying anything else because I realized how angry my doctor was when I told him that I started off using my mom’s machine to help me get used to therapy before my machine arrived. He also got really angry when I pushed to get the Auto machine when he was only willing to let the sleep tech stay on Spontaneous mode for the sleep study back in June. The doctor was mad that I went out on my own and started learning about all this. So I didn’t change the settings further because I didn’t want to further rock the boat. I wanted him to stop being angry and possibly work with me. 

Now that the new ASV study is done, he won’t look at what I’m doing with my current machine and he’s still angry. So now I will change the settings! 

Last night I went back to that original thread and looked up your recommendation for the Auto setting and decided to give it a try. 

I’m still a bit short of breath and very tired even though it’s noon. But I’m willing to make further changes in the settings for tonight if you think you can help me not wake up short of breath anymore.

It's really rewarding to get your AHI results to a very good range.  Now we work on comfort.  i'd like to first review why you are on bilevel and how your doctor managed to,put you on such high pressure and pressure support.  Is there anything you can offer as to how he arrived at his prescription?  if not, then I'm going to go on our experience to make recommendations for comfort.  Let's first go one more night at these settings, Nd be sure we have a good baseline.

I'm open to what your doctor comes up with, but in the end, you need to fire this guy.  An angry narcissist is not concerned about you, and you know that.  Your top priority is to get the records of these tests for when you move on..

As I just posted in my reply to Matt, I have an adult onset form of muscular dystrophy, called Myotonic Dystrophy 2. It's one of the more benign types yet still effects me a lot. For more info on that and how that correlates in this, please refer to my reply to Matt.

As far as being on bilevel, I tested needing it during the sleep study. I need that extra help to breathe back out without air being forced in continuously. The only explanation giving for the high pressure support was that is what the sleep tech found to stop the apneas. I was also talking pain meds during the sleep study because I couldn't sleep flat without back pain. I believe the pain meds could have had a negative effect my night of sleep. I don't take them at home. 

Interestingly enough, since starting on bipap, if I support my legs and neck well at night, I can sleep flat when I'm getting the extra oxygen. 

I have been able to get the results of the CO2 sleep study in May and the Titration study for apnea in June. I don't have the printed results of the pulmonary function testing in June, nor do I have the results of the titration study for the ASV machine in October. I need to work on getting both of those. 

Since my doctor is so unresponsive, it's going to take some work getting those results. But eventually I will. 

I'm also in agreement that my doctor needs to be fired. I just thought it was best to do that after I get the new machine.

[Matt00926]

If you get short of breath while lying down, when not using the bi-level machine, in the context of your MD it probably means that you most likely have some diaphragm weakness. The breathing muscles are at a disadvantage in the supine position, and your vital capacity actually decreases in said position. The bi-level machine augments your ventilation, assisting you with the work of breathing, which is probably why the breathlessness goes away when lying down masked up.

With all this information I would honestly try to seek out a MD/neuromuscular specialist. It's quite possible that you need a machine purely for mechanical reasons - to rest your muscles, not to treat OSA. Sleep studies are often not helpful because muscle weakness can be misinterpreted as OSA events when you don't take a breath because you physically cannot, not because of complex sleep apnea.

I wouldn't be that surprised if you got an S/T machine, seeing all those central apneas go away even with the increased PS.

[Sleeprider]

Before we go too far down the rabbit hole, a normal respiration rate generally falls between 12 and 20 BPM. Yours is low, but unchanged in rate and volume when we compare your original prescription 18/12 and the one I suggested at 9-16 PS 4. This forum, and the non-invasive positive pressure ventilation we are familiar with, does not deal with altering respiration rate, other than CA and OA reduction.

With your Myotonic Dystrophy, you need pressure support to maintain tidal volume, but your doctor's prescription of 18/12 PS 6.0, resulted in too much wash out of CO2, resulting in central apnea. By reducing the pressure support to 4.0 cm, that CA was eliminated without reducing tidal volume. I do not have oximetry data to show your SpO2, but another general rule of ventilation is that higher PEEP (positive end-expiratory pressure), or minimum EPAP can increase blood oxygenation. So by reducing EPAP to 9.0 we may have lowered SpO2, even though, AHI is improved. Pressure was lowered for comfort, but you can raise EPAP min back to 12 cm, and see if that reduces the feeling of breathlessness. If you do that, the settings are EPAP min 12, PS 4.0 and IPAP max 18. This looks like your original prescription, but is in Vauto mode, and with PS4 instead of 6. This may improve blood oxygen levels without triggering CA, but we really won't know without an oximeter.

Do you understand? You do not need to make this change, but I'm trying to explain the respiration impacts of higher vs lower EPAP, and telling you the CA you had, was the result of too much PS.

[SarcasticDave94]

LookingForward, whatever proves best direction for you, I sincerely wish that is what you get ASAP.

FWIW: Odd that, on the normal respiration rate Sleeprider mentions, is from 12 - 20 bpm. I regularly note 9-11 for myself. Maybe from my COPD? IDK.

Latest nap reading according to the ASV: respiration of 11, minute volume of 7.3L, and volume of 620 mL.



PS I'd supply charts, but SD reader died. On the PC that is.

[Matt00926]

According to the American Academy of Sleep Medicine, and I believe ResMed's titration protocols as well, when treatment emergent centrals arise (as such when you increased PS from 4 - basically no centrals - to 6), you have to take into account the underlying pathology if any, and assess the patient, to determine which fork in the road you take.

You can of course back off the PS, you can apply a backup rate in the S/T mode, or you can use an ASV which of course uses a backup rate. What you do depends on the patient, and the goals of PAP therapy for said person.

For now I would suggest staying with the PS of 4, monitoring your oxygen saturation if you have access to a pulse oximeter that can record, seeking out a MD/NMD specialist who also is accredited in sleep medicine, and firing your current sleep doctor.

[LookingForward]

I decided to wait a few night before making any more changes in the settings. I wanted to see if the AHI would go up a lot since the first night of switching to Auto a four nights ago. I thought for a night or two that maybe I didn't need the ASV machine. That maybe the Auto would continue to work. Two nights ago the AHI went up to 8.22. Last night it was at 4. It looks like I do still need a higher level machine. I've had a few obstructives and hypopnea this week since the pressure is lower, but not many. I should also add that in last two nights I changed my mask to a Resmed P10. I don't think that changed the AHI be wanted to mention it just in case.


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