Central and Obstructive Sleep Apnea - Anyone here besides Me

[dormirjespere]

I have central as well as obstructive sleep apnea. I would love to share information and experiences with anyone having both, as well as anyone with obstructive sleep apnea only. My unit is a Phillips Respironics Bipap ST, which is set to provide a steady 12 pulses of air/minute at bipap pressure of 13/9. It has taken awhile to get used to. I've had sleep apnea for over 25 years. It was diagnosed 25 yrs ago, but insurance back then said it was not severe enough that they would pay for machine. The criteria have changed over the years as research has demonstrated the deleterious effects of sleep apnea on overall cardiopulmonary health, etc. At the time my apnea was rediagnosed in 2010, it was diagnosed as severe obstructive apnea. I was prescribed a bipap set on 16/12 with full face mask. That pressure blew me away. They did another sleep study, changed rate to 14/10. As a result of that study, they also found that I had central apnea as well, meaning that the brain no longer consistently sends signals to the diaphragm to contract. So even with the bipap, unless I used the new version Phillips Respironics bipap ST, I would still have significant periods of apnea. Now the settings are 13/9, and I use a Quattro Mirage full face mask. I've been using these since May 2011. I have been doing pretty well with these, though still have some periods of apnea.

If I fall asleep on the couch while watching TV, no bipap, I'm unable to drive the next day (unless I have the freedom to use bipap for 7.5 hrs sleeping). When I'm working, I don't have that luxury. I have to call in sick. That is not good.

Sorry this is so long. I just joined today, this is my first post.

Thanks for reading this, anyone who can get through it!!!

[Jonathan9891]

I have a much milder case than it sounds like you do, but I do have both as well. I started with just obstructive but apparently the CPAP machine itself can in some people provoke central apnea events. It's all new to me as I've only recently be diagnosed and am only 4 nights into my therapy, so there's still a lot to get used to. I hear many people say they do eventually become downright attached to their machines, but while I'm somewhat more used to the machine after several nights it sure seems like a big leap to think of being really into it....

[Kohkie]

Welcome Aboard!

I too am fairly new to the forum. I was diagnosed with severe sleep apnea 3 and a half months ago and put on a CPAP a week later, just before Thanksgiving. Since then I spend as much time as possible in the forum learning from the old-timers. I have learned how to:

Find the clinical manual for my machine;
Adjust my pressure, Use the machine in Auto CPAP or straight CPAP;
add a bacterial filter because I have allergies;
Get the software and read the reports;
Improve my AHI;

I am currently running my machine on straight CPAP at a pressure of 12 and for this last week my average AHI is 1.3, which is fantastic. But all is not wine and roses. Today I couldn't go to work, I have a long commute, and just could not get to sleep last night. So no matter what you do there will always be some bad nights. However, on average, my sleep has improved by leaps and bounds since I've been on CPAP and I sleep better than I have in years. You have a lot to look forward to

[Grand-PAP]

Anyone here besides Me

¡Hola! Bienvenido dormirjespere,

This response if primarily to bump your post back to the top and to answer your question -- Yes, there are MANY here to work with you. Actually, I'm surprised that a whole host of frequent posters haven't weighed in yet. I'm sure they will.

First a recommendation. In your post you indicated that you use a PR BiPAP ST. However, if you go back to your profile and change the equipment to TEXT, all future posters will instantly know which equipment you have and it will allow them to give you more specific advice.

You use the same mask that I use. Personally, I feel it is a very effective mask, especially considering the higher pressures that you are using.

I'm also new to ASV therapy and therefore, not knowledgeable enough to give much information. I will mention this and hopefully some with greater knowledge will expand. As I understand it, your BiPAP ST does have "some" ability to deal with your Clear Airway Events -- I'm not sure how effective it is. Again, as I understand it, the machines that are more specifically designed for Clear Airway Events are the PR BiPAP autoSV or the ResMed VPAP Adapt SV. Again, hopefully others with BiPAP ST experience will be able to give you better insight.

though still have some periods of apnea.

This general comment hits at the heart of what posters will need. You've given good information regarding your pressure settings. However, what posters will need is information regarding your events. If you can share information regarding your sleep studies, that would be helpful. Additionally, if you haven't yet begun, you should probably use either EncorePro and/or SleepyHead Software to access your statistical results. That will allow you to evaluate your therapy. PLUS if you provide the information regarding your AHI results, it will help posters here. In addition to your AHI, we will need to know the breakdown -- the Obstructive Apnea Index, Hypopnea Index and the Clear Airway Index. Depending upon the results you might at a later date want to post some of the graphs.

If you don't have the software and/or don't know how to use it, include that in your next post and we can give you directions.

Again, I just wanted to make sure you know there are many here to help! If you can do the above, it will make it easier for all to help.

¡Buena suerte con su terapia!

[JohnBFisher]

... I've had sleep apnea for over 25 years. It was diagnosed 25 yrs ago, but insurance back then said it was not severe enough that they would pay for machine. The criteria have changed over the years as research has demonstrated the deleterious effects of sleep apnea on overall cardiopulmonary health, etc. At the time my apnea was rediagnosed in 2010, it was diagnosed as severe obstructive apnea. I was prescribed a bipap set on 16/12 with full face mask. That pressure blew me away. They did another sleep study, changed rate to 14/10. As a result of that study, they also found that I had central apnea as well, meaning that the brain no longer consistently sends signals to the diaphragm to contract. So even with the bipap, unless I used the new version Phillips Respironics bipap ST, I would still have significant periods of apnea. Now the settings are 13/9, and I use a Quattro Mirage full face mask. I've been using these since May 2011. I have been doing pretty well with these, though still have some periods of apnea. ...

You are not alone. I've probably had sleep apnea for almost 40 years at this point. I distinctly remember my sister complaining that I snore just like Granddad - and I was about 13 at the time. I am also certain (based on his snoring and heart problems) that our Granddad passed away due to obstructive sleep apnea.

Like you I was treated initially only for obstructive sleep apnea. But due to a degenerative neurological disorder, I found that I developed central sleep apnea. I had a *hard* time getting doctors to pay attention to it. And unfortunately, the high blood pressure and ibuprofen I took for the morning headaches led to chronic kidney disease. I have written to a couple of those doctors to make it clear they should not ignore symptoms like that in the future. Of course, no response since they don't want to admit to medical liability. But I hope others can avoid my problems.

In my case the central sleep apnea is VERY severe. I would stop breathing for more than a minute at a time. In fact the BiPAP that I had would turn itself off (the Auto OFF feature assumed that I was no longer wearing the mask so would turn itself off after one minute). And it would do that over and over and over again. I was in bad shape until I was titrated with an ASV unit about two and a half years ago.

Since you do have central sleep apnea, I would definitely talk with your doctor about it. An ASV unit can feel like a miracle if you have moderate to severe central sleep apnea. It has been clinically shown (objectively - not just how someone feels) that it is more effective than an ST unit in addressing central sleep apnea.

Essentially the ASV unit acts as a ventilator when you fail to breathe. By doing this is helps break the cycle that leads to many of the central apneas.

But it does have some problems. An ASV unit almost always causes more leaks in the masks than any other unit. Those can be controlled, but it does take some time to adjust to it. The other odd thing is that it tends to be harder to adjust to how the pressure changes with an ASV unit. Again, you can and will adjust to it. Just don't expect it to be as easy as other units. It is a bit more of a challenge.



If I fall asleep on the couch while watching TV, no bipap, I'm unable to drive the next day (unless I have the freedom to use bipap for 7.5 hrs sleeping). When I'm working, I don't have that luxury. I have to call in sick. That is not good.

Sorry this is so long. I just joined today, this is my first post.

Thanks for reading this, anyone who can get through it!!![/quote]