Beyond xPAP... What's next?

[HoseCrusher]

Obstructive sleep apnea responds well to the PAP treatment, but it seems that sleep disorders often go beyond simply making sure your blood oxygen levels are adequate. I have noticed that several people respond well to simply using PAP treatment, but then there are a whole bunch of others that feel just as tired as they were before treatment.

Excluding physical damage to the lungs and blood problems, it is pretty simple to adjust the PAP to a point where the airway is kept open and you can breath all night. A person in good overall health will respond to this by seeing an increase in blood O2 levels, and a reduction in desaturation events.

My journey through all of this has been interesting. My cardiologist asked me if I snore. I told him that my wife snores, but she tells me that I do to. Also, my wife has noticed that I stop breathing at times at night. I never gasp, but simply start back up again. It is more like a pause. A sleep study was recommended and I purchased a recording pulse oximeter to get an idea of what was going on with me, prior to the study.

In the few weeks prior to my study I discovered that my O2 levels were OK on average, but I did have some brief periods of desaturation. My average O2 level was around 96.5% for the night.

I wore my pulse oximeter during my sleep study. When I reviewed my data I found that I had an average O2 of 96.5%, but I did have 19 desaturation events below 90%. The lowest I recorded was 80%, but I noticed that I lost signal just before that event. This happens when I rolled over, so I checked the sleep study report, and they actually recorded 76% and noted that I rolled over at that time. I spent about 50 seconds below 90%.

That was the largest desaturation, but there were others, so it was looking like I was experiencing some sleep apnea. I have no symptoms.

My sleep report comes back stating that I have severe sleep apnea and had a respiratory event about every minute.

At this point I am thinking this is all a scam. The medical community funnels people to the sleep doctors and they all enjoy a vacation in Paris or other exotic location. I found it interesting that everyone that I discussed this with have never heard of anyone going through a sleep study without being diagnosed as having sleep apnea.

Further research had revealed a few that made it through, but there still is a lot that goes on behind the scenes. In my case I have no symptoms, so I have nothing to compare before and after results with. I can look at SpO2 levels, but that is about it.

I pick up the APAP machine and try it out. The first thing I notice is that my average SpO2 levels hoover around 96.5%. Before APAP I was at 96.5%, after APAP I am still at 96.5%. Interesting...

I did notice that after APAP I rarely have a desaturation that drops below 90%. That is an improvement.

Also, my wife has noticed that I am not snoring, and she has not noticed me stop breathing.

So, here I am 5 months later. I still have no symptoms. I have some improvements, but my average O2 level is still at around 96.5%. I have only had 1 or 2 desaturations below 90% in this period of time, and they didn't drop below 85%. I think I no longer have apnea.

I review the data on my machine and notice that my AHI hoovers between 6 and 8 on average over a month. Individual days see the AHI sometimes as high as 10 or 12, but then it drops down much lower. To me this indicates that something else is going on.

This brings me to the original question of this post. What is the next step? My APAP is working well as evidenced by my lack of desaturations. Am I to understand that pumping the pressure up will result in less "arousal's" and give me better sleep?

[Emilia]

You don't say what your pressure range is on the auto. The AHI you quote is too high, as under 5 is considered normal, with getting as close to 0 being ideal. Do you know what your titrated pressure was from the study? Better yet, do you have a hard copy of your study to view? If not, you should get it....it is your right to have it. If you could be more specific about your study results, other than a dx of severe, give us your pressure range, and any issues you may be having with your mask, it would help us give you advice.

Best of luck!! Keep us posted and get those detail on here for us to see.

[Janknitz]

Edited to add: The S8 Escape you are shoing in your profile is NOT an APAP. So my assumption below that you don't have efficacy data may be wrong if you posted the wrong machine

I think you are making some erroneous assumptions here:

You are assuming that your inexpensive home pulse oximeter was better calibrated than the sleep lab's, so therefore the sleep lab diagnosis was a scam. Perhaps your pulse oximeter is off--have you calibrated it?

You are assuming that oxygen desaturation is the only negative effect of apnic events. Oxygen desaturation is a serious concern, but it's not the ONLY concern with apnea. During apnic "events" adrenalin and other inflammatory hormones are secreted, pulse rate increases, putting more strain on the heart. There can be atrial fibrilation. Blood pressure rises. The autonomic nervous system is stimulated more than it should be during sleep. There can be changes in the pressure gradients in the airway, causing a vacuum effect that pulls stomach contents and acids into the airway, causing more inflammation and irritation, swelling, and further narrowing of the airway. Multiple arousals and poor quality sleep, impaired REM sleep can all have an effect on brain function. These all have long-term negative effects on your health, with or without oxygen desaturation. So the fact that your O2 sat levels are not significantly bad to begin with or changed on CPAP does not necessarily mean that you are not getting other benefits from the treatment or that apnea is not a problem.

My APAP is working well as evidenced by my lack of desaturations.

I notice that my AHI hoovers between 6 and 8 on average over a month. Individual days see the AHI sometimes as high as 10 or 12 . . .

I don’t think you can assume that your APAP is working as well as you think. These AHI numbers are too high and indicate that you may not be getting optimal benefit from your machine. It would help to take a look at your data to see why your numbers are still so high (they should be below 5, good therapy is well below 5 all the time)--then you might actually FEEL some benefit from your therapy. You might have leak issues, or the pressure may not be optimal. Unfortunately, you were suckered into a brick that lacks efficacy data, so you’re blind to what you need to know to improve your therapy. And you are using this blindness to base your assumptions upon.

At this point I am thinking this is all a scam. The medical community funnels people to the sleep doctors and they all enjoy a vacation in Paris or other exotic location. I found it interesting that everyone that I discussed this with have never heard of anyone going through a sleep study without being diagnosed as having sleep apnea.

It’s very true that apnea is a cash cow in American medicine right now. But the sleep labs and doctors who treat it don’t really care if you get a positive diagnosis or not, they are making the bulk of their money up front on the testing and interpretation. From what I understand, they don’t make much at all on the follow-up unless they own or get kickbacks from DME suppliers.

If you tread this board enough, you will see there are some people who are having symptoms (primarily fatigue) and are quite upset that they got though a sleep test and are told that they DON’T have sleep apnea. So again, I think it’s an erroneous assumption to believe that nobody goes through a sleep study without being diagnosed. However, if health care providers do a reasonable job of pre-screening (looking at jaw and airway structure, snoring, something like the Epworth scale, etc.) before sending people for sleep studies, it only makes sense that the majority of screened people tested will have sleep apnea to some degree or other.

And, consider my HMO, Kaiser. I am not a big fan of Kaiser, but I do have to say that they are proactive about sleep apnea, even though it COSTS them money in the short term. Theoretically, the less testing and care they give, the more money they make. Yet they have a very aggressive policy for referring members for sleep studies and treatment and fairly generous DME coverage for CPAP equipment and supplies if you are diagnosed (and have DME coverage). Why? Because the theory is that this will SAVE them money in the long run by preventing the long term effects of untreated sleep apnea. If apnea was a scam and a cash cow—believe me that Kaiser would not be covering it since Kaiser is both the insurer and the provider and there would be no incentive spending good money after bad data and treatment.

[Goofproof]

The equiptment you have showing in ICONNY (Worthless) instead of text form is mis-matched so we can't guess what you or using or how. Jim

[Breathe Jimbo]

If you raise your pressure too much, you might induce central apneas, which are another can of worms. You don't want to raise your pressure too much for that reason.

[HoseCrusher]

Emilia,

The initial range on the APAP was 4 - 20. After having several "run aways" while on APAP, I switched it to CPAP. With help from my cardiologist I self titrated to eliminate desaturations. I ended up with a pressure of 10.5.

My sleep study did not involve any use of xPAP. I do have a copy of the study, and have very minimal to no issues with the mask. I did have the small diameter fail on me, hence my username...

My situation is "less than ideal." My sleep physician tried to explain what my report meant, but what I came away with was that my sleep is fractured. Since I don't see any symptoms of that, I am a little skeptical of some of the meanings behind the findings. My wife and I like to snuggle as we sleep, and this tends to "fracture" sleep. I love to snuggle, and as long as I wake up well rested, I don't think a little fracturing of sleep is that big of a deal.

I was left with the APAP machine to do the titration.

My cardiologist seems to be more interested in my sleep quality and has given me pointers on how to take a little different view of the pulse events. He looks forward to reviewing the pulse oximeter print out I bring with me during visits.

The technician that instructed me on the use of the machine wanted data to show compliance, and we had a discussion about how the insurance company is only interested in compliance and they seem to care less if the treatment is effective. He checked the data and said that everything was looking good. I am a little unusual because I started with no symptoms and still have no symptoms, so I guess I agree with him.

I have not heard from my sleep doctor. I would have thought that a follow up sleep study with me using the xPAP device would demonstrate how well things are going, but that has not happened.

As far as the AHI goes, I think this particular machine scores that a little high. I put more importance on the pulse oximeter data at this time, because it is something that I can relate to and easily measure. Since I can demonstrate that I have eliminated desaturations, how important is the AHI index?

Also, are apneas without desaturations significant? Why and how?

[chunkyfrog]

Stress hormones.
You may not be aware of them, but they are released whenever your breathing is interrupted (apnea)
They cause all kinds of bad stuff to happen to your heart, brain, and lots of other stuff inside of you.
Many people never know it until it kills them.
Sorry, that's how it works.

[Tired Linda]

HC,
The first thing you need to do is look carefully at your equipment and make sure it matches what you have listed here. You are showing a ResMed machine with a Respironics humidifier....are you sure that's correct?

Then, you need to read, read, read, everything you can that's available here.

Post results of your sleep study here for us to look at. That's really the only way anyone can make any sort of suggestion.

I didn't have "symptoms" either. I finally got to the point where I couldn't stand being teased about my snoring anymore. I talked to my regular doc, who asked me some questions, and referred me to a sleep doc. I saw the sleep doc, who asked me some questions, looked in my nose and at my throat, asked me more questions, and scheduled me for a study. I didn't just get "shuttled" into a test. The rest is history. I do have a problem. I started reading everything I could find on this site. It didn't take me long to realize I did have symptoms, just didn't know what they were...creeping blood pressure, forgetfulness, weight gain, depression, heart palpitations. Keep up with that stuff and the real damage gets done, atrial fibrillation, stroke, you name it. I became determined that this was going to work NO MATTER WHAT.

And, finally, you are not getting nearly enough information about your therapy with compliance data or weekly averages. You need a fully data capable machine and the corresponding software to be able to monitor your apneas, hypopneas, AHI, vibratory snores, flow limitations, and leak rate for your mask every single night to be able to judge whether you are getting the correct therapy.

The learning curve here is astronomical, but there is a lot of good information here and a lot of people who are willing to help if you are willing to listen and learn.

TL

[HoseCrusher]

Janknitz,

Perhaps your assumptions are off...

I have verified the performance of my pulse oximeter with those used in the hospital. It also was in good agreement with the sleep labs with the exception of the one desaturation event. I stated that my unit lost signal during that event. The rest of my data matched the sleep labs data, so I don't think calibration is an issue.

While my initial impression was that the diagnosis was a scam, I have softened my thoughts and decided to explore this further. I have seen a change in SpO2 levels after starting xPAP and my wife has told me that I don't snore any more, and she has not observed me not breathing. The part in question is the significance of the arousal's and the sleep fracturing.

My pulse rate did increase during the large desaturation event that occurred during my sleep study. It went from 51 BBM to 53 BBM. Since I normally fluctuate more than that, I am not sure it is significant.

I have reviewed many nights and days of data and there are some occasions where there is a significant change in heart rate associated with a desaturation, however the frequency of those doesn't seem to have changed from pre xPAP to several months of being on xPAP.

I am under the impression that people experience apneas all of the time. The problem comes with obstructive apnea. When I go swimming I subject myself to apneas and have adrenal releases and increased hear rate. Is swimming bad for me?

I have not figured out a way to wear my pulse oximeter while swimming, but it would be an interesting study.

I am questioning how simply monitoring breathing translates to AHI. If that is all that it takes to come up with that index, why do they look at brain waves, O2 saturation, and heart rhythms during the sleep study. How much weight is given on the machines reported AHI during titration? My "informed speculation" is that they are looking at other parameters.

I have spent a lot of time reading past posts and did find a couple of cases where a sleep study did not end up with a diagnosis of sleep apnea. I do understand that with proper pre screening those that do a study are most likely suffering and would recieve a diagnosis. If you had continued the quote a little further you would have found that I also said

"Further research had revealed a few that made it through, but there still is a lot that goes on behind the scenes."

I am interested in what goes on behind the scenes. The studies I read involving heart health all seem to refer to desaturation events. I am interested in finding any research on non desaturation, non heart rate changing apneas.

You seem to put a lot of faith in the AHI reported by the machine. Perhaps you can inform me on what basis it is calculated.

While my initial impression was that all of this seemed like a scam, I fully realize that sleep disorder breathing is a real problem. xPAP therapy opens the airway, but I am not convinced that it resolves all the issues associated with sleep disorders. That brings us back to my original question. Once you have opened up the airway and eliminated the obstruction, what's next.

[HoseCrusher]

Goofproof,

The machine given to me is the ResMed S8 Series II Escape II Auto that also has the H4i humidifier.

[HoseCrusher]

Linda,

I love your avitar...

Sorry about that, I thought the selection was ResMed. I have changed it.

My sleep study indicated:

# of Apneas & Hypopneas: 146
AHI: 29.9
NREM AHI: 29.0
REM AHI: 35.1
All Respiratory Events: 250
RDI: 51.2
Min SpO2%: 76.0
Mean SpO2%: 96.5

As I mentioned earlier, my main concern was with desaturations and pulse events. Now that I have that under control, I am looking further.

I don't think the machine that was given to me offers much in the realm of data. As I pursue this further I will probably end up having to come up with a different machine.

[HoseCrusher]

Chunkyfrog, You mentioned stress hormones and their production by apneas. Do you have any specifics on this?