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ASV/ Central apena - Time for a second opinion?
#1
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.
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#2
I don't see how a responsible and informed physician could look at your results and conclude CPAP is even an option! You have NO OBSTRUCTIVE APNEA. The only solution would be ASV, and I'm curious what settings were determined to be effective. It clearly resolved the centrals 100% and I assume you felt alot better. CPAP would be a disaster. We have seen far too many people come to this forum with central and complex apnea, and CPAP induced apnea, and physicians that seem to be clueless. Most get very good results on ASV, but may suffer through several months of AHI as high as 40-50 needlessly.

I would strongly recommend you change physicians, and perhaps inquire at your sleep center who is particularly good with central and complex apnea problems to obtain a referral. Hopefully this won't be an insurance wrestling contest. Many insurers require patients to fail CPAP, and bilevel before approving ASV. Someone interpreted your study at the clinic, and I'd secure that person's recommendation to your doctor that is being ignored. Get a full copy of your sleep study and any recommendations for your records. You are entitled to all results of tests and studies under HIPAA. Good luck in your pursuit of competent care. We are here to help in anyway we can.
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#3
Thank you sleeprider. It's good to know the sleep drs incompetence isn't something I'm imagining. I'll contact the other sleep center in my area this week and ask how much experience they have treating centrals. If they are experienced I'll ask my PCP for a referral- or someone further away if I have to.


One last question- if my insurance does approve nocturnal oxygen is that worth a try or should I just go straight to a second ASV titration? I can't seem to find much research on oxygen by itself so if any one has personal experience with it that would be great.
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#4
Oxygen gets into a realm I'm not really competent to answer. We have members with COPD and other disorders that require oxygen during the day, and supplemental oxygen at night. The problem is, you start to get into respiratory drive issues. You can search "hypoxic drive" and "hypercapnia" to see what I mean. A number of people here use supplemental oxygen for different reasons, but I'm not about to make a recommendation, or even pretend I could advise you any better on this, than your current sleep doctor (apparently) can regarding ASV.

As far as machines, the answer is clear. CPAP is approved for the treatment of obstructive sleep apnea. ASV has a different purpose that better matches your diagnosis and test results.
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#5
I appreciate your honesty. Thank you for taking the time to answer.
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#6
Hi Feisty Folder,
WELCOME! to the forum.!
I wish you good luck on getting the right machine.
trish6hundred
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#7
Because central apnea is (relatively) uncommon, the great majority of doctors, technicians and researchers seem to have a mindset that all apnea is obstructive. Any search of the literature will turn up obstructive sleep apnea but seldom does central apnea get a mention. So it's perhaps not surprising that your doctor is thinking in terms of CPAP therapy. But it's not an excuse - your numbers are very clear that you have central apnea and a CPAP machine is not the indicated treatment.

As an aside, I used to have terrible insomnia with extremely long sleep latency. After going onto an ASV machine that has pretty much disappeared. A well set up ASV is extremely comfortable to use, and will work with your breathing pattern to lull you off to sleep in no time.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


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