HELP!

[Pugsy]

Go back to the sleep doctor and show him these reports with truckloads of centrals.
Something is terribly wrong here.
I don't know if you have Complex Sleep Apnea or not...you might.
https://www.youtube.com/watch?v=CU-XTcf ... e=youtu.be
It's no wonder you are sick when using the machine IF (big if) you do have CompSA.
You feel better with a couple of hours of sleep because things haven't had a chance to go to hell in a hand basket. The longer you sleep the worse the centrals seem to be. Why? I don't know. I don't know how many of last nights centrals are maybe awake breathing flags by mistake because you slept poorly or if the bulk of those centrals are the real deal and if they are...you very well could need a different type of machine or at least additional tweaking of your current machine.
Now I don't know about the vomiting or all that stuff but something is not going well with your OSA therapy and your sleep doctor needs to earn his big bucks and help you sort it out.

A bilevel machine (like you currently are using) is often first avenue to try when centrals are a problem but not in cpap mode.
They use them to see if perhaps they can find a pressure that will resolve the OSA and not make centrals worse.

Have you seen your sleep doctor for follow up at all? That is who you need to see right now for sure.

[kaiasgram]

Thanks for jumping back in Pugsy, and I agree something is very wrong with this picture. It's quite unusual to have a bilevel machine running in straight cpap mode and it makes me wonder if someone along the way (doc, doc's assistant, DME...) maybe even made a mistake. I recently caught an error on another forum where this happened. The poor guy was throwing centrals to the tune of over 80 AHI nightly due to a Rx error.

It's also puzzling to me, looking at the stats page, why the doc was increasing the pressure along the way. Obstructive events (apneas and hypopneas) were hovering pretty close to OK from the start, but centrals were not.

[Pugsy]

I am going to go out on a long skinny limb here...I am just doing a big WAG (for those who don't know what a WAG is..Wild Ass Guess)...is that perhaps it's the centrals causing the regurgitation issues...there's sure enough of them to make a person sick.

The last study i had the central apneas/hour was 5.

This may be why the bilevel...I don't know but 5 per hour (don't know if that was with or without a machine and that's kinda important) is troublesome either way.

Since things are really bad and you are physically ill...I don't know that I am comfortable doing the DIYing thing with you to maybe see if we could stumble onto something that would work especially since you have a sleep doctor (I assume) who should be earning his money.
The DME is NOT equipped to make adjustments based on the data shown so I don't know who was doing the recommending of the pressure increases but IF (remember big IF) these are indeed pressure triggered centrals using cpap mode and blinding increasing the pressure is going to do nothing but make the situation much worse.

It's quite unusual to have a bilevel machine running in straight cpap mode and it makes me wonder if someone along the way (doc, doc's assistant, DME...) maybe even made a mistake.

Somebody isn't doing their job very well or made an error maybe based on AHI and gut thinking someone thought more pressure for most situations with AHI that is high but not in this situation until those centrals are removed from the equation as being real...and I don't think we can blame that entire mess last night on SWJ. I would love to be able to do that but I just don't think we can.

I wasn't going to step back in and I was just going to let you handle things because I know you can but I just couldn't not say anything. This just screams out "fix me"... but I don't know where to start and in this situation I am not so sure that I want to go DIYing unless it is to back way up with the pressure and maybe do a tiny bilevel setting and see what happens and ONLY because it is doubtful that he can see his sleep doc tomorrow and might as well try something while waiting for the appointment. This sure as hell isn't working. Going backwards would be the only thing I would suggest in this situation.
So I decided to step back in and then let you agree with me because I knew you would.

[Koree17]

Yah I see him on a regular basis. He's the "Number one" doctor for narcolepsy according to the narcolepsy network. I just saw him the other day and he upped the pressure so I doubt he'd want me coming back in so soon. Where does it show that im having centrals?

[Koree17]

OH and it was a titration study that I was referring to earlier it says I had 5 central apneas/hour.

[Koree17]

So im reading these notes I have further and im suddenly remembering why he was so upset when I came back from that sleep study. "some of the events during rem sleep appeared central. However, there was some difficulty differentiating these events from obstructive, because of artifact in the chest and abdomen belts."

Honestly I trust him. If the nausea doesn't improve after seeing the ENT I'll call him and try to reschedule sooner. I'm going to just straight up ask him next time I see him why things continue to get worse and depending on how he answers I will consider finding a new doctor I guess. Or if he tries to play this off like its not in any way involved with the machine im moving to a new doctor because im just sick and tired of going through this.

[Pugsy]

All those CAs you are seeing...that's clear airway cessation of breathing...Respironics term for "centrals".

It can be difficult to know for sure if these "centrals/CAs" are indeed the real deal because we don't have EEG data available to tell us if you are asleep and even with EEG data as in your titration sleep study they may have difficulties per the mention of artifacts.

These machines don't have EEG capabilities and they just go by air flow but they are pretty darn accurate and while they might mislabel something every now and then...the chances of all those CAs being mislabeled are slim.

From our stand point here...we have to assume they are the real deal until proven otherwise because to do otherwise would be to potentially ignore something that could be very important.

If he has seen these reports and these boat loads of CAs...I don't know what to tell you.
You don't by chance have an overnight recording pulse oximeter to check your oxygen levels during these bad nights do you?
Maybe he is thinking that they are post arousal centrals and if the obstructive stuff gets under better control then the CAs will reduce. I have no idea what he is thinking or the reasoning behind it. It wouldn't be impossible for those CAs to be post arousal (you are maybe sort of awake and don't remember it) especially since you say you slept poorly.

I am not familiar with Xryem or any of its potential side effects.
Since I would assume you take it even when you don't use the cpap machine (and aren't made so ill) that it isn't the meds making you so ill. Is this correct? You take the meds on the nights you don't use cpap and you aren't made ill?

Have you been able to spot any pattern as to good nights vs bad nights?
Like is 2 hours or maybe 3 hours going to give you okay data and okay sleep and not be so ill...and/or when do things start going to hell? Is it 4 hours or 5 hours or when?

[kaiasgram]

Maybe he is thinking that they are post arousal centrals and if the obstructive stuff gets under better control then the CAs will reduce.

But the obstructive stuff has not gotten under better control (looking at the Statistics screenshot). Meantime the Central index is going up. So the doctor needs to be re-evaluating his reasoning if indeed that was his reasoning.

[Koree17]

No I don't have anything to monitor my oxygen levels. Xyrem works really crazy. That's all I know. It's a level 3 controlled drug and he prescribes more people xyrem than anyone else in the state. I really feel like I don't have much of a choice to go with what he says. I'm just going to see if I can get this nausea thing under control. My grandparents are calling me a hypochondriac, which is crazy. I've had plenty of doctors say its allergies, but allergy medication does not help. Ive had the sleep doctor says its the xyrem but you are correct I have never had issues with mucus without using the machine. If I take the xyrem but don't use the machine I wake up feeling great, but xyrem worsens apneas so its incredibly dangerous not to use the machine.

[Pugsy]

but xyrem worsens apneas so its incredibly dangerous not to use the machine.

In what manner does it make apneas worse? I don't see it suppressing respiration but maybe it does.
Edit...apparently it can suppress respiration. That could lead to the over shoot under shoot cycle that triggers CompSA centrals.

I just looked it up
http://en.wikipedia.org/wiki/Sodium_oxybate
nausea and vomiting is a known side effect (along with some other rather ugly side effects) and I don't know the half life or how much or how often you are taking it but it wouldn't be impossible for it to be making the nausea and vomiting worse.
Perhaps you could dig deeper in regards to how long it stays in your system at whatever dosage you are taking

Going out on another skinny limb here and just another WAG in that maybe the really crappy night's sleep is partly a factor in feeling so ill during the day and maybe the meds are partly a factor...and any other meds you may be taking.

[kaiasgram]

This is from an FDA document on the side effects of Xyrem. The full text on Xyrem is here: http://www.fda.gov/downloads/Drugs/Drug ... 089830.pdf



So nausea and vomiting are common side effects of Xyrem. I wonder if the reason you only experience these symptoms when you use the machine is because you're getting such crappy sleep on the machine with all those centrals going on. In which case the problem isn't so much being on a machine as it is being on a machine that is configured all wrong for you.

This is a very complicated situation -- don't worry about "bugging" your doctor by insisting on an earlier appointment. You need close monitoring because your PAP therapy is not stabilized yet and you are feeling so sick.

Please do keep us posted and don't give up hope, and don't hesitate to advocate for yourself with the doctor(s). We don't have the expertise to tell you what to do in this case but we can sure see that there's a serious problem with your sleep apnea treatment that is not being addressed.

[kaiasgram]

Pugsy, we were researching xyrem and typing our posts at the same time, and it looks like we have the same WAG about why he might be feeling so sick following nights when he uses the machine. If the pressure setting on his machine (especially the increased pressure) is causing excessive centrals and trashing his sleep, then he's more vulnerable to experiencing the xyrem side effects(nausea and vomiting).

Sure would like to hear from Sludge on this one.

[Koree17]

I will definitely keep updating this. I want to thank all of you. My own family thinks im a hypochondriac (just like they did when I told them for years I had narcolepsy). I know something is wrong and im not going to let him cut me off and answer me before I finish asking a question next time. It's just nice to know im not crazy in thinking things are not working.

[Pugsy]

Ahhh...it can suppress respiration similar to how opiates suppress respiration.
I didn't see that at the Wiki link and didn't go any further as I am short on time.
Thank you Kaiasgram for showing me that little tidbit.
Could very well be a factor in those centrals.
It could be triggering CompSA.

[Koree17]

Oh and for the record. last night was probably not a very good night to use. Like ive mentioned he had to lower my xyrem dose because of my blood pressure. last night was my first night trying to sleep on the lower dose and on top of that im trying desperately to find a position I can fall asleep in other than on my stomach..... its not going well. The other two nights would be much more common