Dr wants me to stop CPAP - with low O2 and high CO2

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
marxxx
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Dr wants me to stop CPAP - with low O2 and high CO2

Post by marxxx » Thu Jan 29, 2015 2:54 pm

Hello all,

I am relatively new here and having a problem - hoping all the experts can help out a bit.

Long story short, I have several issues contributing to on going fatigue and lack of quality sleep. I was diagnosed with mild sleep apnea (exacerbated to severe in REM sleep) last year, AHI was 10.6 in non rem sleep, 41.7 in rem sleep.

The big area of concern to me is the respiratory data -
The mean oxygen saturation during the study was 92.0%, with a minimum oxygen saturation of 73.0%. The patient spent 5.7% of sleep time with an oxygen saturation below 90%. The maximum end-tidal CO2 was 59 mmHg and the minimum EtCO2 was 30 mmHg. The patient spent 72.3% of sleep time with an EtCO2 above 45 mmHg and 23.0% above 50 mmHg.

To expand on this my study was 344 minutes of sleep
I was at 45-49mmHg EtCO2 for 170 minutes
50-54 for 74.5 minutes
55-59 for 5 minutes.

As for the O2, (again 344 minutes total)
at 91-100% for 296.7 minutes
81-90 for 22.7 minutes (19 of these minutes occurred in REM sleep)
71-80 for 1.05 minutes.

I went to a new sleep dr this week seeking advice for leaks, arousal throughout the night, and waking up between 3 & 4 am. He wants me to discontinue the use of the cpap and see how I feel. He says I am a mild case and the CPAP is likely irritating me (and waking me up) more than it is doing good.
I questioned him on the data that I posted above and he feels the oximetry numbers are transient and don't really show anything to be concerned about. I did get them to agree to order an oximetry test in home (yes I know I can buy a meter, but not sure EXACTLY sure how to interpret the data or convince them of treatment based on that). Before doing the oximetry test he wants me to go a few days without the cpap to see how I feel - then get the test.

I'm sure he knows what he is talking about, my concern is that doctors can be in such a hurry they miss info or misinterpret info.

What does everyone think? Should I be concerned with the respiratory data from my study? Should I stop using the CPAP as suggested?
I have had one other overnight oximetry test and also showed me desat to 75% for about 17 seconds. 80-88% for 3 min 5 seconds and the rest above 88%

Thanks in advance for all the advice!

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Pugsy
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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by Pugsy » Thu Jan 29, 2015 3:03 pm

I would be concerned if I were in your shoes and my OSA is similar to yours.
In Non REM sleep my AHI was around 12 I think but in REM sleep it was 53 per hour and my sleep lab study showed drops to 73% in terms of O2 saturation. I don't remember how long it was low though. I do know that I was having some killer headaches though and those went away once the oxygen stabilized with effective cpap therapy.

Using your own overnight pulse ox is really simple and easy to evaluate though...Don't let that scare you.

Also...sleep apnea is more than just oxygen levels....it's sleep quality and arousals and poor sleep in general.

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musculus
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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by musculus » Thu Jan 29, 2015 3:33 pm

The doctor may be right that your sleep could be better off without CPAP, but definitely wrong saying mild apnea is OK without medical control.

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marxx

Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by marxx » Thu Jan 29, 2015 5:02 pm

Thanks for the responses guys.

The Dr specifically said that I am being over treated and he thinks the cpap may be irritating me.

I am concerned about the therapy. I didn't ask to be taken off. I was hoping to get a new mask or get some insight.
I am not really intimidated by using an oximeter. I just don't know when the levels are bad or need treated. Also, I don't think the otc meters will track CO2 which from what I understand was high.

I was blown away that he suggested stopping using the cpap.

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Pugsy
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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by Pugsy » Thu Jan 29, 2015 5:14 pm

marxx wrote:I am not really intimidated by using an oximeter. I just don't know when the levels are bad or need treated. Also, I don't think the otc meters will track CO2 which from what I understand was high.
Generally 88% oxygen sats are the cut off mark for most insurance in terms of requiring supplemental oxygen and in my own sleep lab studies there was a specific mention to "so and so time below 88%". Easy to spot on the pulse ox reports with a big red line.
You are correct about Carbon dioxide levels though....I don't know of any OTC way to measure those.

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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by palerider » Thu Jan 29, 2015 6:48 pm

Pugsy wrote:
marxx wrote:I am not really intimidated by using an oximeter. I just don't know when the levels are bad or need treated. Also, I don't think the otc meters will track CO2 which from what I understand was high.
Generally 88% oxygen sats are the cut off mark for most insurance in terms of requiring supplemental oxygen and in my own sleep lab studies there was a specific mention to "so and so time below 88%". Easy to spot on the pulse ox reports with a big red line.
You are correct about Carbon dioxide levels though....I don't know of any OTC way to measure those.
I recently found that there ARE non-invasive co2 monitors... but they're not cheap.

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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by chunkyfrog » Thu Jan 29, 2015 7:24 pm

You mentioned this is a new doctor. So this doctor was not the one that prescribed the cpap?
If there was another sleep doctor, what happened to him?
This guy scares me. My apnea is not as severe as yours, but going without cpap would leave me a wreck.
Perhaps you need a mask liner, until you get used to therapy.

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marxxx
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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by marxxx » Thu Jan 29, 2015 7:38 pm

Pugs - Thanks for the info. I don't know if I would need O2 treatment. I did ask one of the doctors and was told cpap would take care of it.

Frog - this is a new Dr. My first sleep dr prescribed the machine at 4-20 and sent me on my way. It seemed his methods were not consistent with what others are getting (like not having another study with the cpap treatment).
I made an appt with the dr most recommended in my area. I had to wait almost 6 months to get in with her (I go next month). In the mean time my primary recommended me to this dr - I didn't think it would hurt to go - but then again it may..... At this point I am trying to gather as much data as I can to take next month. Oximetry reports and the like may help whoever I end up sticking with.

The one thing I have learned it's not every doctor is right for every patient. I think it's important to pick our doctors and try to find the best one for us.

Thanks all!

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Julie
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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by Julie » Thu Jan 29, 2015 7:42 pm

What machine (full name and model #) do you use, and what mask?

marxxx
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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by marxxx » Thu Jan 29, 2015 8:16 pm

I use the resmed S9 autoset.
I have used the following masks over the last several months -
Mirage quattro, quattro air, f&p flexfit 431 and a set of pillows. I did great for the first several weeks after I got my new quattro air (smaller size), but my numbers soon climbed back up and leaks got worse. I changes sizes and tried the other masks.
I have been reading some impressions of some of the newer masks, willing to try just about anything.

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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by Wulfman... » Thu Jan 29, 2015 9:19 pm

What are your current machine pressure settings?

And, are you using software to monitor your therapy?


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Goofproof
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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by Goofproof » Thu Jan 29, 2015 9:42 pm

When you graduate medical school at the bottom of your class, what do they call you, Doctor!

What do they really know, my daytime O2 was 90, so he put me on O2 for 9 months. Then he removed the O2, I still tested at 90 awake. Now he has me on O2 again 2 years later, when he started it the last time, I tested 94 in the daytime. Spain that to me Lucy! However I do do better at night with 3L of O2 added, so we will call it necessary. Jim
Use data to optimize your xPAP treatment!

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marxxx
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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by marxxx » Fri Jan 30, 2015 10:56 am

My original Dr had it set at 4-20 auto. I got a new mask that seemed to help, but I am unsure of the exact date. I think it was in October. Shortly after this I made several changes in pressure and finally settled on 9-16 the narrowed that to 11-16. It seemed to go great for a while.
Major leaks were at or near zero for bout 6 weeks, and my ahi was usually under 1 (sometimes almost zero). For some reason this all started climbing mid december. The major leak rates are all over the place - routinely between 15 and 40 and as high as 59.58%.
I recently the machine back 4-20 (in lieu of stopping it all together).

Also, I am using both the resmed software and sleepyhead to track progress. Unfortunately most of the graphs aren't all the meaningful at this point. I'm sure it will come with time....

Thanks for all the replies!

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Julie
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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by Julie » Fri Jan 30, 2015 10:59 am

Hi, the one thing I don't think will help you is to have set the machine back to 4-20... you're making it much harder on yourself to leave the low at 4. I understand you're frustrated but Pugsy should see this note (she's the resident expert in everything ) and give you some direction on the rest of it.

marxxx
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Re: Dr wants me to stop CPAP - with low O2 and high CO2

Post by marxxx » Fri Jan 30, 2015 11:28 am

Julie,

I can see that being an issue. I thought it was worth a try instead of just discontinuing.
I'm sure there are lots of people here who are frustrated with their doctors - but I don't see how they can charge so much and do so little. None of them have looked at the data on my card. I take printouts and try to give info, but none of them dig deep enough IMO. I took my raw data to the last appt and the dr never bothered to look at it. Simple said to discontinue based on the summary - that my apnea is mild.
The resp therapists seem to put a bit more effort in, but even they don't know what to do and have pretty much thrown their hands up at my situation.

I'm not sure how much of it is therapy not working and allowing to wake vs other variables.