Thought I'd been doing fine; doc disagrees. Help!

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Little Wing
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Thought I'd been doing fine; doc disagrees. Help!

Post by Little Wing » Fri Mar 11, 2016 2:02 am

I've been a long-time lurker on this board since my diagnosis in 2012, but this is my first real query for the collective wisdom of the board.

First, a little of my history:

I've been tooling along for the past four years with my trusty PRS1 560 APAP set to a range of 4-20 cm/H2O, figuring I'd let the machine do its thing. My original doc, who I only saw for my initial sleep study and diagnosis, had me set for a range of 4-6 cm/H2O, which was nowhere near adequate IMHO. I've been religious in my use of the machine when sleeping, I very, very, very rarely sleep without it--usually only because a URI has my nasal passages completely blocked--and have enjoyed AHIs hovering around 2.1 over the past 4 years.

About 5 months after my initial OSA diagnosis, I started having problems with atrial fibrillation and high blood pressure, which I'm pretty sure are related to my OSA. Both are well controlled with medication.

Fast forward to last month, and I finally get around to finding a local sleep doc, having moved away from the area the old one was in about 3 yrs ago. New doc grabs a download from my SD card, agrees that things look decent, but has me narrow the pressure range to 10-15 cm/H2O and orders an overnight oximetry test to ensure that my treatment is as effective as the Encore numbers looked.

Turns out that it isn't.

The oximetry test revealed that my was Sp02 below 90% a good 40% of the night, with an average of 14 desaturations per hour and a lowest measured SpO2 of 81%. My baseline SpO2 was only 90% to begin with, so it had to drop very little to register as hypoxemic. Indeed, my average low SpO2 was only 88.3% so it really didn't drop that much. In truth, it was below 88% only 16 minutes out of the entire night, so I'm not sure why that's so alarming. Most of the night, it varied between 88-93%. (I should mention that I live at an elevation of about 4700 ft)

Nonetheless, my doc's conclusion was that sleep-disordered breathing is still present despite current therapy, and he wants me to do a titration study in hopes that a pressure setting can be found that will keep my SpO2 sats up where they should be.

I've attached the SleepyHead data from the night of the oximetry test in hopes that the experts on here might be able to help identify areas of concern. Right off the bat, the one thing I suspect is my tidal volume, though I'm not sure what normal values would be there. I'm a big guy, 6'2", 300+ lbs, with a max lung capacity between 4-5 liters. My normal breathing when awake is somewhat shallow due to my weight, and I suspect this is also true while I sleep. I have read about Obesity Hypoventilation Syndrome and suspect this might be at play to some degree as well.

Would appreciate anyone taking a look and offering any observations!

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kteague
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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by kteague » Fri Mar 11, 2016 2:12 am

I'm sure someone more knowledgeable than I about data will come along and comment on your report. In general, I have to wonder if evaluation regarding your low baseline oxygen might be better done before than after the repeat titration. Would be interested in hearing other input on this, and if your elevation could mean it's not really a problem. Don't have much to offer, just welcoming you to the group and looking forward to you finding answers and solutions.

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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by palerider » Fri Mar 11, 2016 2:25 am

Little Wing wrote:. I'm a big guy, 6'2", 300+ lbs, with a max lung capacity between 4-5 liters. My normal breathing when awake is somewhat shallow due to my weight, and I suspect this is also true while I sleep. I have read about Obesity Hypoventilation Syndrome and suspect this might be at play to some degree as well.
OHV can be treated with a bilevel machine with fairly high pressure support (the difference between inhalation and exhalation pressures. for instance most people may have a ps of 4-5, but OHV ballpark starting settings are around 8, so the machine's making it easier to breath in.

I scanned back over a chunk of my own data and my median tidal volume is 560ml and minute vent median is 10.2 liters.

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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by stienman » Fri Mar 11, 2016 6:52 am

If your baseline O2 while awake is 90%, you should be looking into lung issues, with the possibility of oxygen support. If you can't breathe while awake, you're going to have a much harder time while asleep.

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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by robysue » Fri Mar 11, 2016 7:58 am

I'm going to chime in with support of the idea that your O2 levels while awake may need to be investigated.

As far as the posted data is concerned:

The RR graph, the TV graph, and the MV graph all show a lot of "spikiness" which can indicate either a whole lot of restlessness or irregular breathing problems that are not directly related to sleep disordered breathing. But none of these graphs show up in the Encore data that your doctor looked at. (Indeed, unless the doc's office made a special effort, the doc most likely didn't even have the flow rate data for the last night in front of him.)

You might also want to zoom in on the individual events and see how long they last. This too is something that is not available in the standard Encore report that the doc most likely looked at. It's possible that the remaining OAs are still long enough to be causing you some unexpected problems.

Overall, the baseline SaO2 seems to be low enough to warrant investigating and the drops in night time SaO2 that don't seem to be explained by the AHI data is also worth investigating. If this were me, I'd agree to have another titration study done and I'd ask about whether testing for OHV should be done as well.

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GettingBetter
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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by GettingBetter » Fri Mar 11, 2016 10:00 am

Just so I understand, your sleep doctor ordered testing that says you are not doing as well as your self-analyzed testing may indicate. In addition, the same doctor that caught the issue has recommended another titration study to set the pressures and maximize your therapy.

Okay, so why are you asking for additional "doctoring" from an internet forum when you seem to have a real doctor, with a medical degree and obviously catching issues that the internet or yourself have not caught? I don't get it.

Why can't you trust the doctor that actually is practicing medicine?
Little Wing wrote:I've been a long-time lurker on this board since my diagnosis in 2012, but this is my first real query for the collective wisdom of the board.

First, a little of my history:

I've been tooling along for the past four years with my trusty PRS1 560 APAP set to a range of 4-20 cm/H2O, figuring I'd let the machine do its thing. My original doc, who I only saw for my initial sleep study and diagnosis, had me set for a range of 4-6 cm/H2O, which was nowhere near adequate IMHO. I've been religious in my use of the machine when sleeping, I very, very, very rarely sleep without it--usually only because a URI has my nasal passages completely blocked--and have enjoyed AHIs hovering around 2.1 over the past 4 years.

About 5 months after my initial OSA diagnosis, I started having problems with atrial fibrillation and high blood pressure, which I'm pretty sure are related to my OSA. Both are well controlled with medication.

Fast forward to last month, and I finally get around to finding a local sleep doc, having moved away from the area the old one was in about 3 yrs ago. New doc grabs a download from my SD card, agrees that things look decent, but has me narrow the pressure range to 10-15 cm/H2O and orders an overnight oximetry test to ensure that my treatment is as effective as the Encore numbers looked.

Turns out that it isn't.

The oximetry test revealed that my was Sp02 below 90% a good 40% of the night, with an average of 14 desaturations per hour and a lowest measured SpO2 of 81%. My baseline SpO2 was only 90% to begin with, so it had to drop very little to register as hypoxemic. Indeed, my average low SpO2 was only 88.3% so it really didn't drop that much. In truth, it was below 88% only 16 minutes out of the entire night, so I'm not sure why that's so alarming. Most of the night, it varied between 88-93%. (I should mention that I live at an elevation of about 4700 ft)

Nonetheless, my doc's conclusion was that sleep-disordered breathing is still present despite current therapy, and he wants me to do a titration study in hopes that a pressure setting can be found that will keep my SpO2 sats up where they should be.

I've attached the SleepyHead data from the night of the oximetry test in hopes that the experts on here might be able to help identify areas of concern. Right off the bat, the one thing I suspect is my tidal volume, though I'm not sure what normal values would be there. I'm a big guy, 6'2", 300+ lbs, with a max lung capacity between 4-5 liters. My normal breathing when awake is somewhat shallow due to my weight, and I suspect this is also true while I sleep. I have read about Obesity Hypoventilation Syndrome and suspect this might be at play to some degree as well.

Would appreciate anyone taking a look and offering any observations!

Image

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Julie
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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by Julie » Fri Mar 11, 2016 10:43 am

Yes, but it's always interesting to get other objective(?) opinions from people who've possibly 'been there, done that'.

Little Wing
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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by Little Wing » Fri Mar 11, 2016 11:08 am

GettingBetter wrote:Just so I understand, your sleep doctor ordered testing that says you are not doing as well as your self-analyzed testing may indicate. In addition, the same doctor that caught the issue has recommended another titration study to set the pressures and maximize your therapy.

Okay, so why are you asking for additional "doctoring" from an internet forum when you seem to have a real doctor, with a medical degree and obviously catching issues that the internet or yourself have not caught? I don't get it.

Why can't you trust the doctor that actually is practicing medicine?
Very simply: because this doctor has not yet earned my trust. Until he does, I'm going to get outside opinions to help serve as a cross-check for what he recommends.

Now I have one question for you: with that attitude, what the hell are you doing on this board?

You do realize that this board exists to help people get educated about their condition and treatment so as to be more effective advocates for their own care, right?

You seem to be of the belief that doctors are always right, they never make mistakes, always look at the problem from every angle and never miss anything. In other words, you're living in fantasyland.

So again I ask: just what the hell are you doing here?

I don't really care to know your answer, and in fact would prefer that you not post in this thread again. You're clearly not interested in the sort of discussion this board was created to foster, so please just go away.

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GettingBetter
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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by GettingBetter » Fri Mar 11, 2016 11:45 am

Little Wing wrote:
GettingBetter wrote:Just so I understand, your sleep doctor ordered testing that says you are not doing as well as your self-analyzed testing may indicate. In addition, the same doctor that caught the issue has recommended another titration study to set the pressures and maximize your therapy.

Okay, so why are you asking for additional "doctoring" from an internet forum when you seem to have a real doctor, with a medical degree and obviously catching issues that the internet or yourself have not caught? I don't get it.

Why can't you trust the doctor that actually is practicing medicine?
Very simply: because this doctor has not yet earned my trust. Until he does, I'm going to get outside opinions to help serve as a cross-check for what he recommends.

Now I have one question for you: with that attitude, what the hell are you doing on this board?

You do realize that this board exists to help people get educated about their condition and treatment so as to be more effective advocates for their own care, right?

You seem to be of the belief that doctors are always right, they never make mistakes, always look at the problem from every angle and never miss anything. In other words, you're living in fantasyland.

So again I ask: just what the hell are you doing here?

I don't really care to know your answer, and in fact would prefer that you not post in this thread again. You're clearly not interested in the sort of discussion this board was created to foster, so please just go away.
Well, the Doctor you do not trust is the one that found your problem!

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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by Janknitz » Fri Mar 11, 2016 12:19 pm

I'm pretty impressed with your doctor:
1. He looked at your data
2. He ordered further testing
3. He has cause for concern and he recognizes it
4. He made plans to investigate further.

I'll bet your follow-up with your former doctor was something along the lines of "Are you using the machine? How do you feel? Good, keep using it." Did you trust him??

Trust THIS new doctor, he's got your back.
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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by 49er » Fri Mar 11, 2016 12:30 pm

LW,

I agree with Janknitz and GB as one who normally doesn't trust doctors. This guy seems like a gem to me.

49er

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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by robysue » Fri Mar 11, 2016 2:07 pm

Janknitz wrote:I'm pretty impressed with your doctor:
1. He looked at your data
2. He ordered further testing
3. He has cause for concern and he recognizes it
4. He made plans to investigate further.

I'll bet your follow-up with your former doctor was something along the lines of "Are you using the machine? How do you feel? Good, keep using it." Did you trust him??

Trust THIS new doctor, he's got your back.
+100

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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by palerider » Fri Mar 11, 2016 2:49 pm

Little Wing wrote:
GettingBetter wrote:Why can't you trust the doctor that actually is practicing medicine?
Now I have one question for you: with that attitude, what the hell are you doing on this board?
...
You're clearly not interested in the sort of discussion this board was created to foster, so please just go away.
well, you certainly pegged the role that self styled "getting better" plays... bullshit troublemaker.

very perceptive.

how many years has the advice been "get a second opinion?"

welcome

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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by bwexler » Fri Mar 11, 2016 2:55 pm

The first thing I would do/have done is buy my own recording oximeter (CMS50 i). Then I would gather a week or two of data.
I would look at the close up details and then post images here, since the details of the graphs are still Greek to me after 5+ years.
Unless you need to go to BiLevel or ASV like I did, I am not sure what you would gain from a new titration study that you can't get from Sleepyhead and this board.
If you do go for a new titration study, make sure they are equipped to test BiLevel and ASV while you are there. Also it would be appropriate if they were also at 4700 feet and not down in the valley.

The lab I was originally scheduled for was not even equipped for ASV, they had the notion I was coming in for a simple split night study. It wasn't until they called me to take a cancellation spot at their other branch location that we all got things straight.
This just goes to prove the meaning of ass u me.

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GettingBetter
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Re: Thought I'd been doing fine; doc disagrees. Help!

Post by GettingBetter » Fri Mar 11, 2016 3:40 pm

palerider wrote:
Little Wing wrote:
GettingBetter wrote:Why can't you trust the doctor that actually is practicing medicine?
Now I have one question for you: with that attitude, what the hell are you doing on this board?
...
You're clearly not interested in the sort of discussion this board was created to foster, so please just go away.
well, you certainly pegged the role that self styled "getting better" plays... bullshit troublemaker.

very perceptive.

how many years has the advice been "get a second opinion?"

welcome


PaleBoner just likes playing doctor without a license. No license required for bullshit troublemakers - ie those that call out the bullshit of internet medicine when you have a competent Doctor.