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Re: Please help interpret data

Posted: Sun Sep 12, 2021 11:27 am
by jyn15
I'm still playing with the settings, with taping my AHI was 11 last night and 8 pressure. The night before no taping and it was 7.5 AHI. Really inconsistent results. My average pressure is always slightly higher than my minimum so I'll try a 9 tonight. I'll try putting the Flex on 1.

Something to note- I also have Narcolepsy (how did I get so lucky?). I take a sleep med, Xywav which is a CNS depressant. It's been known to worsen apnea and some people develop apnea from it and have to start using a CPAP. The med helps me get restorative sleep which doesn't happen with Narcolepsy due to messed up sleep cycles. It helps me have less EDS but I'm not where I should be since I'm still fighting the apneas. When I had my sleep study I wasn't on the med. It explains why I need higher pressure because it's causing worse apnea.

Is there anything else I'm missing that I can change based on this info?

I'm also seeing an ENT this week for occasional mysterious congestion issues. Maybe he can explain better why I have obstruction issues and check my tonsils. I'm an average weight 28 year old female.

Re: Please help interpret data

Posted: Sun Sep 12, 2021 11:45 am
by Pugsy
When reporting AHI it is also critical to mention the category of events that compose that AHI as well as how we slept in general.

As to widely varying results...it can happen even if we don't change anything in our routines....mainly because we simply don't sleep the same each night.

Re: Please help interpret data

Posted: Sun Sep 12, 2021 12:22 pm
by jyn15
Pugsy wrote:
Sun Sep 12, 2021 11:45 am
When reporting AHI it is also critical to mention the category of events that compose that AHI as well as how we slept in general.

As to widely varying results...it can happen even if we don't change anything in our routines....mainly because we simply don't sleep the same each night.
Here's some recent data. I had a little bit of insomnia a couple days ago so I didn't include it, but felt like I slept good the other nights. Unfortunately the sleep med requires a second dose taken in the middle of the night. But besides that I don't think I had other full wake-ups. Felt like crap waking up all three mornings.

Re: Please help interpret data

Posted: Sun Sep 12, 2021 1:10 pm
by Pugsy
It is no wonder you feel like crap.....the detailed reports are screaming poor sleep quality. Crappy sleep quality.
Now what is causing the poor sleep quality and/or how to fix it is the million dollar question.

First thing I would suggest doing is trying to figure out if those flagged events (all of them and not just CAs/centrals) are getting flagged while asleep or awake/arousal related.

Watch the videos here and bear in mind that while it talks mainly about CAs/centrals we can have false positives/arousal/awake flagged events in any category.

http://freecpapadvice.com/sleepyhead-free-software

These machines can't tell if we are awake or asleep. They only measure air flow.

Tell us what kind of sleep study(s) did you have? Do you have a copy of those results? If you don't...get them.

How did you come to be using these pressures?

Re: Please help interpret data

Posted: Sun Sep 12, 2021 1:53 pm
by jyn15
Pugsy wrote:
Sun Sep 12, 2021 1:10 pm
It is no wonder you feel like crap.....the detailed reports are screaming poor sleep quality. Crappy sleep quality.
Now what is causing the poor sleep quality and/or how to fix it is the million dollar question.

First thing I would suggest doing is trying to figure out if those flagged events (all of them and not just CAs/centrals) are getting flagged while asleep or awake/arousal related.

Watch the videos here and bear in mind that while it talks mainly about CAs/centrals we can have false positives/arousal/awake flagged events in any category.

http://freecpapadvice.com/sleepyhead-free-software

These machines can't tell if we are awake or asleep. They only measure air flow.

Tell us what kind of sleep study(s) did you have? Do you have a copy of those results? If you don't...get them.

How did you come to be using these pressures?
Yes I didn't think something was right. Hopefully I can get to the bottom of it, it's really making life difficult. I have a copy of my PSG and CPAP titration attached. I was titrated for a pressure of 6. From telling my sleep doc that I wasn't feeling any relief, his solution was to raise the pressure to 8 and then 10. I felt like 10 was too much and it was raising my AHIs so I've been trying lower numbers 8-9. Although I didn't try taping on 10- it may have been from leaking. His next suggestion was to get another sleep study to be fit for a BIPAP but I wasn't sure if that was the right thing to do. Thanks for the help.
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Re: Please help interpret data

Posted: Sun Sep 12, 2021 1:56 pm
by jyn15
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Re: Please help interpret data

Posted: Sun Sep 12, 2021 2:54 pm
by Pugsy
Tell us more about the meds you take.

And do the homework to learn how to distinguish awake vs asleep flagged events. This is critical.

Your sleep quality is crap but most likely NOT from apnea related events and contrary to everyone's knee jerk reaction more pressure isn't going to fix crappy sleep if the crappy sleep isn't related to airway issues while asleep.

Re: Please help interpret data

Posted: Sun Sep 12, 2021 5:15 pm
by jyn15
Pugsy wrote:
Sun Sep 12, 2021 2:54 pm
Tell us more about the meds you take.

And do the homework to learn how to distinguish awake vs asleep flagged events. This is critical.

Your sleep quality is crap but most likely NOT from apnea related events and contrary to everyone's knee jerk reaction more pressure isn't going to fix crappy sleep if the crappy sleep isn't related to airway issues while asleep.
What a mystery. And the study showed no RLS so that's not the issue. I'm on the sleep med, Xywav, as well as a daytime med for wakefulness called Wakix. I take it when I first wake up so it should be out of my system by bedtime. I'm also on Cytomel for hypothyroidism. I have 3 cups of coffee every day and the last cup I try to have no later than 1 pm. I take a bunch of supplements, also in the morning so none of those should be interfering with my sleep. I've been tired since I was a teenager and have never woken up feeling refreshed. The sleep med does help in that I used to always be a light sleeper and it actually puts me in a deep sleep, but as the data is showing it's not improving the quality for some reason. I'm at a loss.

Re: Please help interpret data

Posted: Sun Sep 12, 2021 6:34 pm
by Pugsy
Well....first of all
jyn15 wrote:
Sun Sep 12, 2021 5:15 pm
daytime med for wakefulness called Wakix. I take it when I first wake up so it should be out of my system by bedtime.
Is far from being out of your system by bedtime.

https://accp1.org/ACCP1/5Publications_a ... 21964f0608
Elimination: The median half-life of pitolisant is approximately 20 hours (7.5 hours to 24.2 hours). The apparent clearance (CL/F) of pitolisant is 43.9 L/hour and renal clearance accounts for < 2% of the total clearance of pitolisant.
The most common adverse reactions (≥ 5% and twice placebo) for WAKIX were insomnia, nausea, and anxiety.
And your "sleep med" isn't totally innocent either.
https://www.webmd.com/drugs/2/drug-1798 ... ideeffects
drowsiness
dizziness
difficulty sleeping
excessive sweating
muscle tremors
nausea
vomiting
anxious feelings
Your narcolepsy obviously muddies up things and both meds can mess with sleep quality.
I think something you really should be having a chat with your doctor about. Is it 100% of the problem??? I doubt it but I expect they play a significant part.

In the meantime do the home work and lets see if those flagged events are real asleep events or not.
I am betting most are arousal related. It's a huge learning curve though...the evaluation of the flow rate to learn to spot awake breathing vs asleep breathing....but it can be done.
Remember anything flagged when not asleep doesn't count in terms of airway issues. It's sleep apnea and not awake apnea for a reason.

I am typing one fingered due to hand surgery and a splint but I have lots of old posts talking about flow rate evaluation.
So I can't point you to all my past examples right now. Just doing this bit has been a real challenge.
If you search my past posts they are there though....not sure which search parameter would be best though.

Re: Please help interpret data

Posted: Sun Sep 12, 2021 7:06 pm
by jyn15
Pugsy wrote:
Sun Sep 12, 2021 6:34 pm
Well....first of all
jyn15 wrote:
Sun Sep 12, 2021 5:15 pm
daytime med for wakefulness called Wakix. I take it when I first wake up so it should be out of my system by bedtime.
Is far from being out of your system by bedtime.

https://accp1.org/ACCP1/5Publications_a ... 21964f0608
Elimination: The median half-life of pitolisant is approximately 20 hours (7.5 hours to 24.2 hours). The apparent clearance (CL/F) of pitolisant is 43.9 L/hour and renal clearance accounts for < 2% of the total clearance of pitolisant.
The most common adverse reactions (≥ 5% and twice placebo) for WAKIX were insomnia, nausea, and anxiety.
And your "sleep med" isn't totally innocent either.
https://www.webmd.com/drugs/2/drug-1798 ... ideeffects
drowsiness
dizziness
difficulty sleeping
excessive sweating
muscle tremors
nausea
vomiting
anxious feelings
Your narcolepsy obviously muddies up things and both meds can mess with sleep quality.
I think something you really should be having a chat with your doctor about. Is it 100% of the problem??? I doubt it but I expect they play a significant part.

In the meantime do the home work and lets see if those flagged events are real asleep events or not.
I am betting most are arousal related. It's a huge learning curve though...the evaluation of the flow rate to learn to spot awake breathing vs asleep breathing....but it can be done.
Remember anything flagged when not asleep doesn't count in terms of airway issues. It's sleep apnea and not awake apnea for a reason.

I am typing one fingered due to hand surgery and a splint but I have lots of old posts talking about flow rate evaluation.
So I can't point you to all my past examples right now. Just doing this bit has been a real challenge.
If you search my past posts they are there though....not sure which search parameter would be best though.

Oh my goodness I will not bother you with anymore questions for a while, please rest up that hand! I really appreciate the investigating. I'm going to try to understand the concept of awake vs apnea arousals with those videos. Right now it all sounds pretty confusing and hard to understand with a sleep deprived brain. I will try skipping the Wakix for a couple days and see if that affects the sleep quality. Then possibly take a short break from the Xywav. My body would probably appreciate a break from them anyway.

I was still incredibly tired after using CPAP for 6 (?) months so the next step was getting a MSLT to test for Narcolepsy. It's a daytime sleep study where you take 5 scheduled naps every 2 hours. I fell asleep for all 5 naps in an average of 6 minutes which indicates severe daytime sleepiness and Narcolepsy.

I will see if I can find the posts you mentioned.

Re: Please help interpret data

Posted: Wed Sep 15, 2021 6:03 pm
by jyn15
Well, major update... I went to the ENT today and it turns out I have a deviated septum. I had no idea. No wonder CPAP isn't working for me. I'm trying a prescription nasal spray for 30 days and if it doesn't help I have to get surgery.

I was reading some posts on here about it but does anyone have experience with it and treating it improving the apnea?

Re: Please help interpret data

Posted: Wed Sep 15, 2021 6:57 pm
by zonker
jyn15 wrote:
Wed Sep 15, 2021 6:03 pm
Well, major update... I went to the ENT today and it turns out I have a deviated septum. I had no idea. No wonder CPAP isn't working for me. I'm trying a prescription nasal spray for 30 days and if it doesn't help I have to get surgery.

I was reading some posts on here about it but does anyone have experience with it and treating it improving the apnea?
maybe this one will be more illuminating?

https://www.cpaptalk.com/viewtopic.php?t=171752