11-20-2016, 05:32 PM
ASV/ Central apena - Time for a second opinion?
I was recently diagnosed with central sleep apnea, then had a titration study for cpap then a second for ASV. The study was originally to look for plmd, not apnea, I usually sleep straight through for the first 6 hours of sleep then start to jerk awake as my Parkinson's meds wear off. I take a nap once a month max. My sleep doctor and I are currently in disagreement, he wanted to give cpap a try for a month to see if the centrals that existed before treatment will disappear in time. I feel that since prior to asv titration he was warning me away from cpap that's a bad idea and I'm starting to get the sense he doesn't have that much experience with centrals and that his technician doesn't either (the practice is so small that there is only one technician covering two locations)
I want to make clear I am open to using a machine as long as it's not objectively making things worse.
Complicating factors-
-I have delayed sleep onset disorder, if I get to sleep before 3am it's a great night, wake up at all my sleep studies was 6am
-I take pain meds and have been diagnosed with Chiari one malformation as well as Parkinson's disease all of which cause apnea. My sleep dr thinks the pain meds are the cause of my apnea, my neurologist thinks my Parkinson's is the cause ( becuase a few years ago I had sleep study and my AHI was 0.5, at the time I was taking twice as much pain meds as I am now and the only thing that's changed is the Parkinson's) I freely admit I don't know who's right.
So with all that said here's the numbers from my studies
Sleep study 1- diagnostic
Notes- slept 7 hours night before, my father called while I was trying to fall asleep, the sensors were driving me nuts
TIB-454 minutes
TST-146 minutes
AHI- 15.2
Low Sp02- 86%
RDI-15.6
Sleep efficacy-32%
Sleep latency-235 minutes
REM-13.5%
Average Spo2-95%
Time spent with spo2 below 90%- 20 seconds
AI- 14
HI- 1.2
REM AHI- 6.2
Central AHI- 13.2
RERA total-1
Arousal index- 14.4
Awakening index- 1.2
Sleep study 2- cpap
Notes- slept 3 hours night before- pretty relaxed- was instructed to take double my usual dose of Ativan- also this time the head of the bed was raised like my bed at home is- breathing against the pressure didn't bother me at all- the sensors were more bothersome than the mask- I kept wondering if it was even blowing because I couldn't feel it- however it did make my ears pop and I swallowed so much air that my appetite was decreased for two days- and I am currently struggling to keep my weight up
TIB-485 min
TST-285 min
AHI- 14.5
Low Sp02- 90%
RDI- 23.3
Sleep efficacy- 59%
Sleep latency- 140 min
REM- 8.2
Average Spo2- 95%
Time spent with spo2 below 90%- 0
AI- 14.5
HI- 0
REM AHI- not given
Central AHI- 13.6
RERA total- 42
Arousal index- 28.5
Awaking index- 7
Sleep study 3 asv titration
Note- slept 9 hours night before- had a very upsetting conversation with my mother who has dementia immediately prior to arriving at sleep study- the conversation left me wondering if she was hallucinating again. I also found the oscillating noise of the machine hard to sleep through- the next morning I thought I hadn't slept at all- however I did not struggle with ear popping or swallowing air. I did have average leak rates of 35%
TIB- 427 min
TST- 185
AHI- 4.2
Low Sp02- 85%
RDI- 22.5
Sleep efficacy- 44%
Sleep latency- 75 minutes
REM- none
Average Spo2- 96%
Time spent with spo2 below 90%- 3 minutes
AI- 1.6
HI- 2.6
REM AHI- not given
Central AHI- 0
RERA total- 56
Arousal index- 30
Awaking index- 13
My sleep felt more fragmented at all of my studies than it usually does. I had a headache for days after studies number 1 & 3 indicating to me they were not my normal.
So at my last appointment my Dr suggested that we try cpap and hope the centrals resolve themselves- his argument was I'd slept the soundest during that study- I pointed out I was the tiredest during that study, and can't afford to have my calorie consumption under a thousand a day due to air swallowing. He sent me home with a recording oximeter to try to get data to support insurance covering overnight oxygen by itself. But with my O2 numbers so good that's unlikely.
To me it doesn't seem sensible to go on cpap for one fewer apnea a night and a difference in O2 stats that could be explained by the head of my bed being raised (the de-sats in my first study was during my one obstructive apnea)
So am l wrong about giving cpap a try for a month? If oxygen is approved should I give that a try? Or is it time to seek out a second opinion and find a sleep center with more experience with ASV titration? I'm just so frustrated with the whole process that I want to give up and focus on my other health issues for right now (I was first referred to this dr in JULY) and I know that frustration can lead to poor decision making, so I'm asking the opinion of people with more experience in this area. Am I thinking it's time for a second opinion out of pure frustration or because the numbers actually support a second opinion being a good idea?
Thank you so much for your time and for letting me vent.
I want to make clear I am open to using a machine as long as it's not objectively making things worse.
Complicating factors-
-I have delayed sleep onset disorder, if I get to sleep before 3am it's a great night, wake up at all my sleep studies was 6am
-I take pain meds and have been diagnosed with Chiari one malformation as well as Parkinson's disease all of which cause apnea. My sleep dr thinks the pain meds are the cause of my apnea, my neurologist thinks my Parkinson's is the cause ( becuase a few years ago I had sleep study and my AHI was 0.5, at the time I was taking twice as much pain meds as I am now and the only thing that's changed is the Parkinson's) I freely admit I don't know who's right.
So with all that said here's the numbers from my studies
Sleep study 1- diagnostic
Notes- slept 7 hours night before, my father called while I was trying to fall asleep, the sensors were driving me nuts
TIB-454 minutes
TST-146 minutes
AHI- 15.2
Low Sp02- 86%
RDI-15.6
Sleep efficacy-32%
Sleep latency-235 minutes
REM-13.5%
Average Spo2-95%
Time spent with spo2 below 90%- 20 seconds
AI- 14
HI- 1.2
REM AHI- 6.2
Central AHI- 13.2
RERA total-1
Arousal index- 14.4
Awakening index- 1.2
Sleep study 2- cpap
Notes- slept 3 hours night before- pretty relaxed- was instructed to take double my usual dose of Ativan- also this time the head of the bed was raised like my bed at home is- breathing against the pressure didn't bother me at all- the sensors were more bothersome than the mask- I kept wondering if it was even blowing because I couldn't feel it- however it did make my ears pop and I swallowed so much air that my appetite was decreased for two days- and I am currently struggling to keep my weight up
TIB-485 min
TST-285 min
AHI- 14.5
Low Sp02- 90%
RDI- 23.3
Sleep efficacy- 59%
Sleep latency- 140 min
REM- 8.2
Average Spo2- 95%
Time spent with spo2 below 90%- 0
AI- 14.5
HI- 0
REM AHI- not given
Central AHI- 13.6
RERA total- 42
Arousal index- 28.5
Awaking index- 7
Sleep study 3 asv titration
Note- slept 9 hours night before- had a very upsetting conversation with my mother who has dementia immediately prior to arriving at sleep study- the conversation left me wondering if she was hallucinating again. I also found the oscillating noise of the machine hard to sleep through- the next morning I thought I hadn't slept at all- however I did not struggle with ear popping or swallowing air. I did have average leak rates of 35%
TIB- 427 min
TST- 185
AHI- 4.2
Low Sp02- 85%
RDI- 22.5
Sleep efficacy- 44%
Sleep latency- 75 minutes
REM- none
Average Spo2- 96%
Time spent with spo2 below 90%- 3 minutes
AI- 1.6
HI- 2.6
REM AHI- not given
Central AHI- 0
RERA total- 56
Arousal index- 30
Awaking index- 13
My sleep felt more fragmented at all of my studies than it usually does. I had a headache for days after studies number 1 & 3 indicating to me they were not my normal.
So at my last appointment my Dr suggested that we try cpap and hope the centrals resolve themselves- his argument was I'd slept the soundest during that study- I pointed out I was the tiredest during that study, and can't afford to have my calorie consumption under a thousand a day due to air swallowing. He sent me home with a recording oximeter to try to get data to support insurance covering overnight oxygen by itself. But with my O2 numbers so good that's unlikely.
To me it doesn't seem sensible to go on cpap for one fewer apnea a night and a difference in O2 stats that could be explained by the head of my bed being raised (the de-sats in my first study was during my one obstructive apnea)
So am l wrong about giving cpap a try for a month? If oxygen is approved should I give that a try? Or is it time to seek out a second opinion and find a sleep center with more experience with ASV titration? I'm just so frustrated with the whole process that I want to give up and focus on my other health issues for right now (I was first referred to this dr in JULY) and I know that frustration can lead to poor decision making, so I'm asking the opinion of people with more experience in this area. Am I thinking it's time for a second opinion out of pure frustration or because the numbers actually support a second opinion being a good idea?
Thank you so much for your time and for letting me vent.
