New Mask - better night but having centrals

[ShelleyH]

Hi Everyone.. .

Okay, I received my S9 VPAP Auto on 08/31 and my new nasal pillow mask and got all set up. The first night it seemed to go okay but still woke up with aerophagia (less than with traditional CPAP machine) and thought I would just continue to try the mask a second night.

I also downloaded Rescan software and obtained a SD card reader. The first night I had 5.5 hours and it showed Central Apneas which has never been documented on me before only obstructive apneas. Not a lot of them but some. The second night using the same set up. . . I couldn't sleep with the mask on at all. . . I don't quite know what it was. I was up all night and had terrible aerophagia. I was very sick on Friday the 1st.

I contacted my DME and they had the mask I was looking for FX Quatro and I used it last night with a chin strap for double the protection from the aerophagia. I slept for 6 hours. Input my card into the computer this morning and again, central apneas are documented with one obstructive and one hypopnea. My pressure is not all that high ranging from Insp 12.6 to Exhal 8.8 and total AHI 1.2.

I'm not concerned the number of events going on with the low AHI number. I am concerned that I have the centrals going on period when they have not been detected before at all, especially when I have had surgery in the area of my brain stem and now the instability at that same area.

I'm also concerned that I have a headache when I wake up on the morning for a longer than normal period of time and I'm still really tired.

Since my doctor and DME don't know I have the software or that I know of this information, how do I approach my concerns with them? Do I just com out and tell them?

Thanks,
Shelley

[rdfry]

Hi Everyone.. .

Okay, I received my S9 VPAP Auto on 08/31 and my new nasal pillow mask and got all set up. The first night it seemed to go okay but still woke up with aerophagia (less than with traditional CPAP machine) and thought I would just continue to try the mask a second night.

I also downloaded Rescan software and obtained a SD card reader. The first night I had 5.5 hours and it showed Central Apneas which has never been documented on me before only obstructive apneas. Not a lot of them but some. The second night using the same set up. . . I couldn't sleep with the mask on at all. . . I don't quite know what it was. I was up all night and had terrible aerophagia. I was very sick on Friday the 1st.

I contacted my DME and they had the mask I was looking for FX Quatro and I used it last night with a chin strap for double the protection from the aerophagia. I slept for 6 hours. Input my card into the computer this morning and again, central apneas are documented with one obstructive and one hypopnea. My pressure is not all that high ranging from Insp 12.6 to Exhal 8.8 and total AHI 1.2.

I'm not concerned the number of events going on with the low AHI number. I am concerned that I have the centrals going on period when they have not been detected before at all, especially when I have had surgery in the area of my brain stem and now the instability at that same area.

I'm also concerned that I have a headache when I wake up on the morning for a longer than normal period of time and I'm still really tired.

Since my doctor and DME don't know I have the software or that I know of this information, how do I approach my concerns with them? Do I just com out and tell them?

Thanks,
Shelley

Yes you need to talk to them whenever you have concerns. I personally could care less what my DME thinks. Your Doctor is supposed to be helping you, if the doctor has a problem with you having knowledge about your healthcare then that doctor isn't much of a doctor.

[Mary Z]

You cannot be having many centrals with that AHI. If you're concerned I would talk to your Doc. Certainly just dicuss your concerns with the Doc and DME, never mind about the software. We all have some centrals at different stages of sleep. Sounds like it's nothing to worry about in spite of your surgery.
How many centrals?
I would be more concerned about getting the mask fitting correctly and using the machine all night, every night. You cannot rely on your machine data until you do this. 100% compliance, including naps.

[JohnBFisher]

Almost everyone has some central apneas. In fact, what the machine might have caught is something that is normally thrown out of the scoring during a sleep study. During the transition to and from sleep it is normal to have some central apneas. Those are not included in a sleep study, since they are "normal". But the machine can not determine if you are in that transition state.

The good news is that even with your central apneas, your AHI value is at or below 5. Thus, the obstructive, centrals and hypopneas (all of them) total 5 or less per hour. That's definitely in the normal range and does not need to be addressed.

[ShelleyH]

[Mary Z wrote: You cannot be having many centrals with that AHI. If you're concerned I would talk to your Doc. We all have some centrals at different stages of sleep. Sounds like it's nothing to worry about.]

I had 1 - obstructive event, 6 Central events and 1 hypopneas. . not much for most of you I'm sure but I have never had ANY centrals show up whatsoever on ANY report.

I realize that the AHI is low and that's great and I'm happy about that but my concern is the central apnea due to the fact that the neurosurgeon that requested the 2nd study is looking for this specifically. In previous studies (including sleep studies and previous reports from previous machines), I had no central sleep apnea. One of the doctors concerns is that 2 years since being diagnosed with OSA and my other medical issues is that the other medical issues (Chiari Malformation, Craniocervical Instability and Tethered Cord Syndrome) can cause central sleep apnea, hence the reason for the 2nd sleep study which was not fully completed but my doctor decided to try this BIPAP machine.

My question is how do I approach my doctor and/or the DME with this information that I have since they don't know I have the software.

Has anyone just come right out to the their doctor and said. . . I have downloaded the software and here is a report and it says this. . .ie whatever it was? And this concerns me?

I understand the importance of mask fitting, getting used to the machine,ect. . .I've been doing that for over 2 years with limited success:( I have had friends pass away in the meantime from sleep apnea.

I have been assertive with them in the past regarding researching information but this is different. It's almost like stepping on their toes.

Thanks,
Shelley

[imsleepynomore]

Shelly you hired your doctor to help you if your not fully honest and hide information how can he really help you .Withholding the fact you have downloaded information and are trying to help yourself may bite you later. If this doc can't handle this maybe a different doc would be advised.

[Mary Z]

Yes, we have come out and admitted to having the software and taken in our own reports for the doc to see. Many docs are glad you are following your therapy. Since your software is showing results not seen in your sleep study and because of your medical issues I think it's important to bring the centrals to the docs attention. The desire to follow your own treatment given your medical conditions should be reason enough to have the software. Some docs are not impressed and pooh-poo your data. If that's the case and he refuses to address your concerns, I would remind him of the issues with your neck and the concern that it will cause central apneas. If he is not helpful that would be enough reason for some people to change docs. The very fact that you are on Bilevel leads me to believe he/she will listen to you. No one has ever gotten in trouble for having the software- it is readily available, don't worry about downloading your own data. Good Luck.

[Pugsy]

I had 1 - obstructive event, 6 Central events and 1 hypopneas. . not much for most of you I'm sure but I have never had ANY centrals show up whatsoever on ANY report.

It is possible during a sleep tech attended PSG study that a few centrals were present but the tech may have discounted them because they didn't meet the criteria for centrals There is some criteria involved and unfortunately the machines don't have access to all the other criteria factors. If you turn over in bed and hold your breath while readjusting yourself this could possibly be flagged as a "central" by the machine but a sleep tech would not have... It is also possible to have sleep onset centrals when you are going in and out of sleep cycles. Sleep tech would have seen the sleep stage to make sure you were asleep. The machines do a good job but they only have access to one of the parameters needed to make an ideal call on a central. It has some limitations.

I also had zero mention of centrals in my sleep studies. For 2 years I used M series machine that did not even score centrals. I get this new PR S1 machine and low and behold I have a few centrals every now and then. Always at least couple a night. Some nights more. I sense that you are really worried about the "centrals" and to alleviate your concern I guess it would be best to get reassurance from the doctor but in the meantime.. A handful of centrals over the night is nothing to worry about. We worry when we see much more than a handful of centrals an hour, every hour, all night long.

[ShelleyH]

Thanks for all the support and answers! Yes, I'm worried about the central apneas. Mainly because it is one of the things the neurosurgeon is looking for to determine whether or not to do surgery for the instability which I'm not excited about. But it makes sense the more I am researching sleep apnea and centrals and reading posts here. So thank you for calming my fears.

And yes, I will be taking this information to my doctor next week for further follow-up.