Help with Ed's Therapy

[Expat31]

Respiration looks just fine, so no issue there.

Yes increase the maximum pressure to 12.

One thing that caught my eye is your ODI (Oxygen Desaturation Index) of 20.43 /hr.

The normal value should be ideally less than 5/hour. So in my non medical opinion, this must be a major cause of your awakenings. You body trying to protect you by  "shaking" you awake in order to ensure improved oxygenation. The root cause of your insomnia perhaps?

Did the doctor suggest at anytime the possibility of having supplementary oxygen?

At play here, there are two important elements  AHI and ODI. 

The AHI on paper is fine, but what about the excessive ODI? Is the latter medically acceptable?

This seems to have been ignored by the doctor. Ask her how it can be treated, This could be the missing part of the puzzle....

What I would do is to record a week's worth of oxygen data on say an excel sheet, or use OSCAR's stats and show to the doctor, asking her opinion if this is normal.

I would ask perhaphs tests of lung capacity or other related potential issues to explain this, nothing to do with sleep apnea, as she says you are effectively cured as AHI<5.

I noted that you had  severe AHI of 80 events per hour. I was surprised that relative modest pressure settings have just about totally eliminated your AHI, but your ODI has not improved. Curious....

A final though, what was the ODI figure in your sleep study? Anything else in there that may give some clues?

[Grateful Ed]

I also find my oxygen data interesting. I would point out that the 20.4 ODI is using the 3% drop criterion. If I use a 4% drop (which is the default setting in the software that comes with my oximeter), the ODI becomes a more respectable 6.7. I'm not sure which criteria are more "correct".

I have tried to talk about my SpO2 data with my sleep specialist but she wouldn't engage. She dismissed my oxygen data, saying that it's not as important as the AHI and there is no consensus about the number of desaturations. The sleep lab that she is affiliated with doesn't even mention the ODI in the PSG report. For my diagnostic study, it simply says that my average SpO2 during sleep was 92% and the minimum was 80%, with 7.5% of total sleep time spent with a saturation below 89%. According to her, my OSA is fully under control by my CPAP therapy (i.e, AHI < 5), case closed. She didn't want to hear about my data, so you can imagine that the topic of supplemental oxygen never came up.

While I don't have a baseline ODI to compare to, I think I can safely say that my SpO2 has improved on therapy. By my own oximeter measurements, I spend an average of 0.4 min (0.1% of total sleep time) below 89%. So that seems much better than what I experienced in the sleep lab without CPAP.

And FYI, I had lung function tests conducted about 9 months ago and everything was normal.

Nevertheless, I do wonder whether the frequent desaturations are disrupting my sleep, even if I am not dropping super low. I will collect additional data. Whether I will be able to discuss these with my sleep specialist is another matter.

Ed.

[SeePak]

Hey Ed.

Welcome!

You appear to be very willing to suggestions and trial which is great!

However,..

Careful with your testing strategy, cause i see large changes from day to day.

Like EPR1 then EPR3 next day.
pressure min max changes in there too !!

I'm pretty confident you will NOT get what you are looking for very quickly or easily!!

Pick your strategy, whatever you find most convincing etc., and keep it for at least a couple days.

Now, getting started at the right point, that could be tricky !!??.........

[SeePak]

BTW, i have been on total manual CPAP for 35 years.

Nuttin' Fancy!

Still hangin' in there!

[Expat31]

There is a big difference betwen 20.4 and 6.7. A triple value for a 1% change.

You may be particularly sensitive to such changes in desaturation.

This is probably not a valid comparison, as likely based on different nights, but at least can give an idea of the order of magnitude. 

For a valid comparison, a week's worth of data would be needed to be collected for both 3% and 4% and averages compared. Obviously not a  practical endeavour.

However, difficult to argue with a type of doctor that has a fixed opinion and resists considering any other possible options.

So I guess the focus left is down to settings. 

What I did personally was something like this:-

My optimal settings regarding just AHI, were minimum 10, maximum 12, which gave me an AHI of on average just less than 2 AHI. The make up of this were simple hypopneas, with the occasional one or two obstructives. Flow limitations were also low, so in theory all was well. 

On the face of it therapy working perfectly. But still lousy sleep quality.

So time for serious action, 

Long story short, I upped minimum  to 14,2, and maximum to 16 incrementally over about 8 days.

The AHI improvement was only marginal, down to around 1, BUT the quality of sleep became amazing.

It was rather like a sledge hammer crushing a nut, but worked a dream. I believe it stopped these remaining pre-hypopneas events that were hidden from view. That's the best explanation I can come up with at the moment.

I now have just a flat line of pressure, which only kicks up a bit just to deal with the odd stubborn obstructive event. Of course on APAP mode.

So to summarise, once you get to a situation when AHI is about as good it gets, make a serious jump in pressure like above. 

For me it was a 4cms jump, and I was able to cope with this, with no adverse impact on leak control. 

Only you will know if a jump is doable and at at what final minimum pressure level, with maximum pressure at 2cms above.

How this makes some sense.

We are all different, and may or may not work for you.

Maybe worth trying.

[SeePak]

Yes expat.

The key there was to get to a pressure that is reliable for AHI and events.

And reliable depends on a LOT of factors, so you need time to test for sure, i agree.

[Grateful Ed]

Thanks SeePak and Expat.

I'm starting to appreciate the need to go slow here. I'm not messing around with the EPR anymore - I'm leaving it at 3 for the time being, which I find more comfortable. And I will collect data from multiple nights before making gradual changes.

Interestingly, my sleep specialist reached out and recommended that I go with a constant pressure of 10.4 cm (my 95th percentile pressure).

This leads me to a question: If I go with a constant pressure, do I use CPAP mode, or just stay in APAP mode and set both the min and max pressures to 10.4? Does it make a difference?

Thanks
Ed.

[Expat31]

I would say keep to APAP mode, and of course EPR 3. The minimum pressure should be high enough to do the basic job, plus enough to kill off the "invisibles", with a seperate maximum pressure being a security measure to deal with the odd exceptional  "stubborn" obstructives that the minimum cannot cope with. 

I believe this method it is the best of both worlds.

You should end up then with a graph that is mainly a flat line, with an appearance of a fixed pressure, with a very few bumps for the exceptionals.

I consider this approach is the best way to have visibility of any future changing therapy needs. 

If you have a pure fixed pressure, minimum=maximum, this sort of sensitivity achieved above is unavailable.

The examples of the settings in my previous post may not be exactly those that are suitable for you, but at least a place to start.

[SeePak]

Ed.

I will be watching your results very carefully, i am very interested.

Please continue to share.

To answer your question about sleep doctor and CPAP mode...

I have been doing that for 35 years!
I have had great nights and stinkers.
So has everybody else had similar results at times with AUTO CPAP

The auto can go crazy sometime, ramping up to max presssure then down to min. pressure, and people talk about that on this website and on the internet.

Others can't believe you could do without auto cpap !

Find a good zone where you feel better, easier said than done for sure, then you can try other settings and see how it goes.

I always shoot , if possible, for ONE PRESSURE, NO EPR and go from there.

What's not to like about your data of Oct 13 and 14 ? maybe it changes given another night or two, but i would never give up on that if i got it until i really had some data on how i was feeling after a few days.

Oct 15 and 16 had one good night, then suddenly hypopnea appear. But maybe will be better in a night or two,

I can point you to many different studies out there about sleep types and cpap machines and EPR usage good or bad.

Might be time to go back to that 'Deaf Sleep Doctor' advice, straight CPAP, one pressure, with or without EPR !

But give it some time.

Also, have you heard of Patrick McKeown?
Breathwork, for me, most important.

The CPAP machine DOES NOT FIX you !
Nor can it make you breathe right.
It is meant to keep airway open.
And that is affected by you and what you eat, drink, exercise, rest, spirituality.

Breathwork before bed, up to 15 min, will put you in a rest state and get off to a great start for sleep.
Exercise will keep your body producing CO2 which gets Oxygen out of your lungs and into your cells.
If that system is NOT working right, you WILL HAVE lots of problems!

I come from same side of the tracks as you, possibly same sleep doctors.
If it was easy, everyone would have the answer!

And from the results out there, i would be suspect of anyone who says they do!?

[Grateful Ed]

Just an update, I've done the past three nights at pressures of 10-12 with EPR 3. On two of the nights I took SpO2 measurements.

Data are attached. The numbers generally look good, although I continue to have a large number of SpO2 desaturations (45.3/hr and 19.7/hr using the 3% definition, 10.5/hr and 4.0/hr using the 4% definition).

My clinical symptoms are largely unchanged. My sleep quality is still fragmented, and I'm still struggling with sleepiness at some points during the day.

I'll keep plugging away...

Ed.