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+--- Thread: Xyrem - is machine disturbing my sleep? (/Thread-Xyrem-is-machine-disturbing-my-sleep)
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Xyrem - is machine disturbing my sleep? - DebJ - 03-30-2024
Hello,
I take two separate doses of Xyrem* per night for Idiopathic Hypersomnia. Each dose gives me 2-4 hours sleep. I have noticed that during each dose, my respiratory rate graph looks quite different from a night when I do not dose. On Xyrem, the graph shows a period of very changeable breathing rates for about 1 hour that is not there when I don't take Xyrem. This is interesting because Xyrem is supposed to give me deep sleep. Does the spiky respiratory rate period indicate a particular sleep stage?
Xyrem helped a huge amount at first, but not now (3 months later). Either I have developed tolerance or my machine settings are effecting my sleep somehow. I sleep on my side. Xyrem was causing me to choke and wake up coughing and gasping. This is a known side effect so that is why I use the machine. I have mild sleep hypopnea noted in my PSG and moderate to severe EDS in my MSLT study the next day.
Can anyone see any reason from these screenshots to indicate my sleep quality is being negatively effected by my machine? Xyrem causes deep sleep and amnesia so things happen during the night that I don't remember. I'm desperate to get back that good period, as it was life changing.
shows 3mins during the 1 hour of peaked breathing
my breathing soon after I took my second dose. I fall back to sleep almost immediately, I slept another hour like this but my machine records a new day at noon.
*Xyrem (sodium oxybate) is a CNS depressant.
RE: Xyrem - is machine disturbing my sleep? - Sleeprider - 03-30-2024
Your EPR is set to ramp only, so your are racked by high flow limits. Go to Autoset Standard mode and not For Her. Let's do Autoset standard mode, minimum pressure 8.0, maximum pressure 14.0, EPR on Full Time, EPR setting 3. Turn off ramp or set minimum ramp pressure to 7.0.
RE: Xyrem - is machine disturbing my sleep? - DebJ - 03-31-2024
Hi there,
Thanks for your suggestions. I only used my CPAP for my second sleep cycle and changed the settings to what you suggested. The data goes across two days.
The breathing looks much more even and the pressure stayed under 11 for that second sleep cycle whereas the previous night it went over 11 for an hour. I will do a second reply showing zoomed in flow rate graph.
The session on far right is the beginning of second sleep cycle after second dose of Xyrem. The rest of that sleep cycle shows up on the next day.
Same as above, but zoomed in.
Rest of the second sleep cycle that went past noon.
RE: Xyrem - is machine disturbing my sleep? - DebJ - 03-31-2024
Here is a graph showing the level of Xyrem in blood plasma after each dose.
My dose is closest to the orange line (5g per night). My second dose would reach a peak within 30 mins.
I have been having the problem of waking up too soon after each dose. Lately only after 2 to 2.5 hours. It will be interesting tonight to use your settings for both sleep cycles and see whether they are longer.
RE: Xyrem - is machine disturbing my sleep? - Sleeprider - 03-31-2024
I'll look forward to seeing a full night of data. It's hard to draw conclusions from just 1.5 hours, but so far it is typical to see flow limits eliminated and pressure changes become very muted. Note your Flow Limit 95th percentile went from 0.27 to 0.00. This alone is less disruptive to your sleep as you are no longer experiencing respiratory effort related arousals. We will probably reduce the maximum pressure range once we seem a bit more information.
RE: Xyrem - is machine disturbing my sleep? - DebJ - 04-01-2024
Hi
I slept exactly 3.5hr for each sleep cycle. Thats what I should be doing on this medication so I'm very happy with that, getting 7 hours sleep rather and 5 or 6.
The final hour of my second sleep cycle went past noon. More apneas are recorded than usual. Are they actually apneas?
Still woke up tired, have a headache. As I make these changes you suggest, my quality of sleep will become apparent over the course of the day as I see how much stimulant meds I need to stay awake. Yesterday I needed less than usual.
Shows first sleep cycle (3.5hrs) and part of second sleep cycle (2.5hrs)
Final hour of second sleep cycle
Zoomed in last hour on an event
RE: Xyrem - is machine disturbing my sleep? - DebJ - 04-01-2024
There is a difference between this night and the one before. I would have had higher a higher level of xyrem in my blood plasma this night because I stuck to the instructions of not eating 2 hours before dosing and not between doses. Food decreases the Xyrem you absorb.
RE: Xyrem - is machine disturbing my sleep? - Sleeprider - 04-01-2024
If you have the opportunity to switch from CPAP to bilevel, you would get next-level sleep. A bit more pressure support along with a high trigger sensitivity would mostly resolve the remaining issues. It's good you have the Resmed CPAP which gives you 3 cm of pressure support (EPR), but I think it would be a game-change to move to an Aircurve 10/11 Vauto.
RE: Xyrem - is machine disturbing my sleep? - DebJ - 04-01-2024
Thank you for the advice of getting a different machine - an upgrade. My nose can get stuffy, so maybe it will help with that also. Sometimes in-between my Xyrem doses, one nostril would be almost closed off or both will be stuffy and I use saline spray to clear them a bit before my second dose.
Can you see whether I open my mouth at all? I don't think I do because its restricted somewhat by my mask and face shape combination.
This is last night, two sleep cycles on same graph. Same doses as yesterday. Does that periodic-like pattern tell you anything in zoomed in graph?
Many thanks for your assistance. I will be donating for your time as it is well worth it!
zoomed in
RE: Xyrem - is machine disturbing my sleep? - Sleeprider - 04-02-2024
In this case the periodic breathing was triggered by an obstructive cluster at 0400. Most of your events are at the beginning and end of sleep and may be related to sleep transitions or what we call sleep-wake-junk, however there are large leaks when these events occur. You should probably include the leak chart instead of tidal volume or minute vent as leaks appear to be a significant issue. That could be periods you suspect your mouth is open. I think we mentioned you have occasional positional issues, and that is confirmed by the obstructive cluster and unusually high flow limits through 04:40. Some members have used night-vision cameras and recorded their sleep to see how events arise physically. You would see body position and dislocations of your mask, movement and other issues. This might help you to correct or mitigate those issues, and at least understand them.