Understanding My Results After Sleep Study

[Mr_Ipsum]

Hello,

A newbie here, looking to share my story with you.

So long story short... because of my job (railroad) I have to go through sleep apnea screening. I was given a home sleep study and mailed it back after one night of testing. I go to the doctor to get my results. I was floored when I was told I have severe sleep apnea. I am religious about my sleep.

I've monitored my sleep for the last 1,199 nights using a phone app, I average 7:28 of sleep a night, never had trouble going to sleep or getting up. In fact I made a big change when I began to use my phone to monitor my sleep (Sleep Cycle App) connected with the Hue Light system. I have not used an audible alarm to wake up in the last 2+ years. The lights come on automatically. What a change that made for me. I would often wake up with headaches and angry due to the old fashioned "aaaant aaaant aaaant" of my alarm clock. Now I wake up feeling like I float out of bed, ready to go and rested. I've never had issues with daytime sleepiness, or concentration. I have 2-3 cups of coffee a week.

So my sleep doctor says I have severe sleep apnea, and sends me for a sleep study at a nearby hospital. I go and, let's just say... worst night sleep maybe, of my life. I heard stories that people who deny they have sleep apnea often feel so much better after the first night of titration. I was hoping to be pleasantly surprised, though I don't know how I could feel much better sleeping than I already do. I was surprised as to how bad I felt after sleeping in the overnight study.

Then I go 2 weeks later to my doctor to get my results. The doctor asks how my treatment is going with the CPAP machine?? I had not received one? I asked him what the results from by test were, though I guess not good since he had already prescribed CPAP as treatment. He just said that the results showed I have severe sleep apnea and needed immediate treatment. He goes on more about using the CPAP. I ask him again what the results of my test were, I wanted actual numbers. His response, "oh good idea, let's see"? Now I'm starting to wonder. He leaves the room to print out the results. He comes back and looks at the results and says the same things, about how I did so much better on the CPAP and had severe sleep apnea. I question him further on the matter and he doesn't have any answers, just shrugs his shoulders and says I have sleep apnea and need CPAP.

Now since this is a requirement for my job, I would be forced to use the CPAP in order to work.

I leave the room in disbelief, but something tells me to ask for a copy of the sleep study results. The doctor prints them out and says nothing further.

Upon looking into the print out more closely I have some questions, maybe you guys can help with.

The study shows in the section where different pressures of air for the titration are being tested a few columns...
#CA - I assume "Central Apenas"
#OA - I assume also "Obstructive Apneas"
#MA - Mixed Apneas?
#Hyp - Hypopneas?
#RERA - Respiratory Event Resulting in Arousal?

If this is correct, then the print out clearly shows that I had 1 episode of Obstructive Apnea for the entire night. The print out also shows that I had 39 Central Apneas at the first titration pressure of 4 cmH2O, and then it steadily decreased during the night down to 0.

In addition to this the print out says in the section Impressions: "Treatment-Emergent Central Sleep Apena, Best therapeutic response to nasal CPAP therapy at a pressure of 10 cm H2O." It also says that, "The respiratory events occurred predominantly while in NREM sleep, and consisted primarily of centra apneas and central hypopneas."

My questions is, how can it be that the doctor said I have severe sleep apnea, of over 60 events per hour based on the home sleep study, but I have 1 the entire night in the in-lab sleep study. Not only that, but the result says first thing under impressions that the central sleep apnea I experienced during the in-lab study was a result of the first-time use of CPAP. I did some online research on Treatment-Emergent Central Sleep Apena. To me this would explain the high number of central apneas, no?

I'm already scheduled to receive a second opinion from another sleep specialist.

I don't mean to put down anyone else who has OSA, but I don't suffer from any of the symptoms except some snoring. I've also had close relatives who had OSA, really bad OSA, where they would constantly crash while driving, fall asleep mid-conversation, even while eating and snore loud enough to wake up people in other rooms. I know what OSA is, and what it looks like.

Should I continue with my second opinion. I don't want to receive treatment for something I do not suffer from. Your thoughts?

[HoseCrusher]

In a area that you are not an expert, second opinions can be very valuable. Go for it.

[Pugsy]

By all means keep that appointment for the second opinion.

In the mean time there is some information available that may answer some of your questions.
http://freecpapadvice.com/
Some videos along with some write ups to help put this stuff in easier to understand terms.

Treatment emergent central apnea can happen in about 15% of so of the people who were put on cpap.

What isn't clear from what you have disclosed here is what the results of the first diagnostic test was without cpap use at all.
The fact that you had 1 OA during the use of the cpap machine doesn't mean that is all you had without the cpap machine.

[Mr_Ipsum]

What isn't clear from what you have disclosed here is what the results of the first diagnostic test was without cpap use at all.
The fact that you had 1 OA during the use of the cpap machine doesn't mean that is all you had without the cpap machine.

Very true, I was under the impression that during the sleep study, they technologist would monitor for obstructive apneas and adjust the pressure for titration appropriately until they were reduced. But what happens if no obstructive apneas are present. Does that mean that the initial pressure of 4 was enough to eliminate any OSA?

On the first visit the doctor said I had more than 60 episodes per hour according to the home sleep study.

[Julie]

Just curious, but were any of your relatives diagnosed with narcolepsy? From the sound of it, it seems possible, if not even likely.

[Pugsy]

What they do during the titration sleep study is start you out with a minimal pressure and then adjust upwards as needed to prevent the OAs from happening. So they started with a low pressure probably around 5 cm and maybe that is all you needed to hold the airway open and prevent the 60 per hour your home study showed.
It happens...people can need a relatively low pressure to hold the airway open.
So the lack of OAs on the titration sleep study report doesn't mean that the home study was wrong....it just means that at whatever pressure they started you out on worked well for holding the airway open and preventing the OAs.
But it seems to have caused Central apneas and those might go away with time and they might not but they need watching and the doctor didn't tell you that...he's not doing a good job and that in itself warrants a second opinion.

You have questions and that in itself is enough to warrant a second opinion.
Add that to the doctor's rather nonchalant attitude about something that might or might not be all that important also warrants a second opinion.
You need someone to sit down with you and explain what each part of the study means and answer your questions.

The fact that you don't present with the usual sleep apnea symptoms except for some snoring doesn't mean much.
People can have bad sleep apnea and not snore and they can snore really bad and not have sleep apnea.

Does that home study report mention oxygen levels anywhere?

[Mr_Ipsum]

Just curious, but were any of your relatives diagnosed with narcolepsy? From the sound of it, it seems possible, if not even likely.

We used to think my uncle had narcolepsy back in mid-90s, but later found out it was OSA. He used CPAP for a while and his OSA was corrected. Not sure if he still uses it.

[Mr_Ipsum]

Does that home study report mention oxygen levels anywhere?

Never saw the results from the home study. I wished I had asked.

[Mr_Ipsum]

But it seems to have caused Central apneas and those might go away with time and they might not but they need watching and the doctor didn't tell you that...he's not doing a good job and that in itself warrants a second opinion.

The other thing that I'm reluctant to say, is that since the doctor gets patients from the company my employer uses to do the home studies is he simply milking it? He scheduled appointments twice with nothing to say no results, nothing different from last visit. He would ask me if I heard from this person at the lab or this one from the sleep study company when he always said he would contact them and apparently never did, but off course I pay something for each visit. A little bit of a run around to say the least. I don't want to be banished from these forums for having questions about how a doctor does his job, but this guy is the worst doctor I've ever gone too.

[Pugsy]

If you think that the forum members here will blast you for not wanting to believe the doctor walks on water...don't worry.
We are pretty quick to call a dumb ass .... a dumb ass. Doctor or whomever.

Get a copy of that home study....you are going to need it for that second opinion anyway or else the 2nd opinion doc will want another sleep study without cpap. He still might...but for sure he will if you don't have the first sleep study done at home without cpap.

[Mr_Ipsum]

During my study they started at a pressure at 4 and went up to 10 all while showing 0 obstructive apneas, except for 1 in the middle of the night at either 6 or 8 pressure(I don’t have the test results in front of me at the moment). But why would they increase the pressure if the technologist is seeing that only central apneas are present? Does air pressure help treat the central apneas?

The doctor only mentioned “sleep apnea” not Central or obstructive. He said I had 40(highest was actually 39 at 4 cm of pressure) episodes per hour before the CPAP brought it under control. So those had to be central apneas, is this something that the doctor should have noticed? He never said I had just one obstructive apnea and that the Central ones would go away with time (hopefully) as the test actually shows.

I’m worried that the combination of the doctor’s explanation not matching the printed results and his needlessly scheduling me for appointments with no new information or diagnosis is a little disconcerting.

Or is this a classic case of denial?

[Julie]

You have a right by law to your results, so get them asap and we'll have a chance to help.

[Pugsy]

But why would they increase the pressure if the technologist is seeing that only central apneas are present? Does air pressure help treat the central apneas?

I have no idea why they might have gone from 5 cm (or whatever low pressure) up to 10 if there were no OAs.
I can't get inside the tech's head...sorry. Maybe he was thinking maybe it would help with the centrals (which is doesn't usually but again I can't be inside his head) but more pressure when centrals seem to be popping up just because of pressure isn't the usual way to go unless there is a real need for more pressure because of the OAs.
Heck...maybe their lab protocol says that they have to go through so many minutes at such and such pressure up to a certain point.
Different labs can vary their standard protocols and sometimes those protocols don't have much common sense built in.

More pressure with a regular cpap/apap machine won't necessarily help deal with the central because with the central the airway is already open but there is no breathing effort. Hold your breath for 10 seconds...that's pretty much what a 10 sec central is like. Your airway is open but no air is open. There is no effort to breathe.
When you have a 10 second obstructive apnea the airway is blocked either fully or partially by airway tissue but you will be making an effort to breathe...but you can't move enough air.

Treatment emergent central apneas when the person has obstructive sleep apnea to start with...makes the person end up with a diagnosis of Complex Sleep Apnea
See this video
https://www.youtube.com/watch?v=CU-XTcf ... e=youtu.be

Now sometimes when people get centrals because of the cpap pressure needed to treat the obstructive apnea the body will adjust and the centrals will go away on their own. It can take some time though and the doctor has to decide how bad it is and does it warrant giving it time to see if they go away or not.
So this is where the doctor needs to be involved and decide just how best to proceed in each individual case.
Sometimes things are so bad for whatever reason the doctor doesn't want to give it time and the patient gets put on the fast track for one of those machines that will actually force you to breathe when you don't breathe on your own.

The regular cpap/apap machines can't increase the pressure fast enough or high enough to actually force you to breathe.
This is where one of the other specialty bilevel machines might be chosen....one of the NIV Non InVasive machines...ventilators of sorts.
They have what we call back up rates and if you don't breathe enough on your own the machine will give you a big burst of air quickly and essentially breathe for you.

Or is this a classic case of denial?

Well I hate to rain on your parade but I will bet my last dollar that the home study showing 60 obstructive apneas is probably fairly accurate. It's rare to get a false positive with the home studies showing that many apnea events.
Not impossible I suppose but if you were my spouse...we would be learning about masks and supplies and deciding which machine you would be using.
I know you would rather that the home study be wrong...and I can't say as I blame you but the only way to prove it is a sleep study done in a lab with a tech in attendance. Chances of it showing an AHI less than 5.0 when the home study showed 60 AHI...about like a snowball's chance in hell of surviving. Now miracles can happen but I have never seen a home study with an AHI of over 30 end up with less than 5 when repeated in a lab. I have seen reports of the home study showing maybe 7 or 8 AHI and a repeat in lab study showed less than 5.

You quite possibly have something fairly serious going on. I would want to for sure know what the oxygen levels went to...my sleep study showed 53 AHI in REM and 12 in Non REM and my oxygen levels dipped to 73%. That's scary low...
So get yourself fully informed and understand the reports and get a copy of that home study...it's very important besides just that 60 number that they came up with.

Read this blog when you have time
http://adventures-in-hosehead-land.blog ... -test.html

Keep that second opinion appointment and in the meantime do some heavy duty homework reading up on all this stuff.
I suspect that you will need it.

[edfreeman]

During my study they started at a pressure at 4 and went up to 10 all while showing 0 obstructive apneas, except for 1 in the middle of the night at either 6 or 8 pressure(I don’t have the test results in front of me at the moment). But why would they increase the pressure if the technologist is seeing that only central apneas are present? Does air pressure help treat the central apneas?

The doctor only mentioned “sleep apnea” not Central or obstructive. He said I had 40(highest was actually 39 at 4 cm of pressure) episodes per hour before the CPAP brought it under control. So those had to be central apneas, is this something that the doctor should have noticed? He never said I had just one obstructive apnea and that the Central ones would go away with time (hopefully) as the test actually shows.

I’m worried that the combination of the doctor’s explanation not matching the printed results and his needlessly scheduling me for appointments with no new information or diagnosis is a little disconcerting.

Or is this a classic case of denial?

I think most of the forum would agree you're being railroaded (pun intended) by this doctor. Maybe you need treatment, maybe you don't, but I'm suspicious about your ability to sleep soundly and awaken refreshed with no daytime sleepiness prior to the tests, you'd be a rare bird if you also had severe apnea. Still, the "maybe you need treatment" part has to be run to ground, and as Julie and others have said, you have a right to all medical records from the 2 studies you've had to examine them and consult with another sleep doctor. For your job, I'd get that 2nd untreated test in a heartbeat if the next doctor wanted one.

[ShinRyoku]

Sounds very fishy to me. Glad to hear that you are getting a second opinion!

Definitely get a copy of your home study report. I wonder if they could have mixed you up with someone else.