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Sierra

Sierra
Joined Jul 2018
Bio

CPAP: AirSense 10 AutoSet

Set to CPAP Fixed Mode

Pressure 11 cm

Ramp: Auto

Ramp Start: 9 cm

EPR: 2, Full Time

Mask: ResMed AirFit P10 Nasal Pillow

Canada

Sierra
Joined Jul 2018
Bio

CPAP: AirSense 10 AutoSet

Set to CPAP Fixed Mode

Pressure 11 cm

Ramp: Auto

Ramp Start: 9 cm

EPR: 2, Full Time

Mask: ResMed AirFit P10 Nasal Pillow

Canada

What I see is:

  • the machine was set to a fixed CPAP pressure of about 8 cm from Oct 29 to Dec 6, with pretty poor AHI results averaging about 20-22
  • From Dec 7 to Dec 11 it was in Auto mode with a minimum of 8 cm and max of 14 cm. Results were much improved. Averaging perhaps about 12?
  • From Dec 13 to 17 it was in CPAP mode with increased fixed pressures each day from about 10 to 14. Results did not improve each day in step, but that is not unusual.
  • From Dec 18 to Jan 6 it was in fixed CPAP mode at 14 cm. Results are the best you have had to date, but still not great. Average about 10 for AHI?
  • From Jan 7 on it seems to be in Auto mode with a minimum of 10 to a max of 14. Results to my eye are about the same as the fixed 14 cm, and perhaps even a bit better.

You can get a more accurate read of the average AHI for each mode from the SleepyHead Statistics page. Each time you change the treatment settings it should start a new line, with the start and end date, the average AHI, and what the settings were. That would let you compare the modes tried to date more accurately. A duration of one night at a certain setting is fairly meaningless though. I think a minimum of 7 days is required to give the mode a fair evaluation, and a month is better still.

If you can post a daily Detail page it would be much more helpful. January 7th would be a good night to post. Are you using the Flex setting on the machine? If so, one possible quick improvement could be to turn it off or set it to zero.

A couple of sayings come to mind. One is that we cannot change the past, but we can learn from it and change the future. Another is the answer to the question, "how do you eat an elephant?" - One bite at a time.

With those thoughts I would perhaps not divide the issues up into single tiny bites, but bundle them into small boxes. For example:

Box 1 - Sleep related disorders

  • restless legs
  • Periodic Limb Movement Disorder
  • REM Sleep Behavior Disorder

It strikes me that these issues can be related and that one solution might work for them all. I have been doing a bit of research on the RBD. It seems like the treatment recommendations are pretty consistent. Melatonin is the first choice and if that does not work then clonazepam is next. The issue with clonazepam is that it may aggravate obstructive and/or central apnea, so that is something that needs to be watched closely. I found some evidence that if clonazepam does not work there may be some benefit to trying one of the Z-Drugs like Ambien (zolpidem). I am no medical professional and you would want to go down this road with the help of your neurologist, and if there are impacts on your apnea, the sleep doctor too.

Box 2 - PAP Equipment Mechanical Issues

  • hose springs a leak
  • the mask gets dislodged during the night again and again and again
  • the hose starts dripping
  • hose starts zapping him

These would seem to be the easiest to correct with a new machine, new heated hose, and automatic humidifier. The mask part as we all know is a never ending search. My biggest breakthrough was realizing I really did not need a full face mask, and a nasal pillow even with mouth taping and a chin strap is a better solution. But each will likely come to their own individual solution. Small things like a satin pillow case, and a down alternative fill pillow can help too. Forums like this are good to get ideas from but we all need to choose the fixes that work the best for us.

Box 3 - Illness

  • he gets the flu

I'm a believe in the flu vaccine and make sure I get it each year. I got my first one way back in 1975 or so when there was the first big H1N1 scare. It was the vaccine that was supposed to have killed a bunch of people, but I got it and survived quite well. The even bigger issue is making sure to get the best vaccine for pneumonia. Seniors don't really die of the flu, they die of the complications from flu like pneumonia. There are two vaccines needed to get the best protection. Ideally one should get the Prevnar 13 one first, and then the Pneumovax 23 a year later.

Box 4 - Apnea Monitoring

  • apnea

I'm not sure what your specific issues are, and how you are doing with AHI. I find SleepyHead to be the only reasonable way to view the data and make some sense of it. If you were to post some daily reports that concern you, I would be happy to comment. Sometimes some fresh eyes from others can uncover opportunities.

Hope that helps some. Again, my suggestion is to separate the issues into small packages and address each package independently. Small changes over time in the right direction can add up. The Japanese call it Kaisen. The idea is to make small changes but with each one an improvement over the last. Do everything you can to not slip back. They believe this works better than the concept of major breakthroughs, followed by regressions.

When you were first diagnosed, how much information did you received about sleep apnea?

Very little. The clinic used a Phillips NightOne at home system. They gave me just enough info to do the one night trial with it. My wife had been diagnosed 3 years before me, and I thought I knew a fair bit. I should have done more research on it before going in for my diagnosis. For example I knew there was a difference between central events and obstructive, and asked what my breakdown was. She told me, and I did not know enough to ask any follow up question like "how likely are my central events to be treated with a CPAP?" She also told me that a CPAP was likely to cure my type II diabetes, which is total nonsense.

Who gave you that information?

In the clinic my GP doctor sent me to, there is no doctor. I think the company uses a contract doctor to read the sleep study and make the diagnosis. I think I figured out he resides in another province a few thousand km away. Obviously there was no opportunity to talk to him. There is a sleep technician at the clinic which talks to you, but I suspect based on what she told me, she has pretty minimal qualifications.

Where else have you gone for information?

The internet is invaluable. The only trick is in being able to distinguish between credible sources of info (about 2%), and the 98% which is not so credible, and mainly a sales pitch for something. A start is to focus on the .org sites, and not the .com ones.

Was there any support for questions or issues after?

I went back once after getting the trial machine from them. That was only to return the trial machine and tell them I was not buying it for $2400. From my wife's experience I knew ahead of time that I was never going to stay with the clinic, and was just going to buy the machine and mask package on line for $800-900. Not surprisingly they didn't want to talk to me much, after I told them that.

Were you told about other options than a CPAP machine?

I was aware ahead of time of the dental appliance option and had done enough of my own research with my diagnosed AHI of 37 that I knew I was not going down that road.

Were you given options on what machine or mask you used?

No, there was no option. I was given a ResMed AirFit P10 mask and a Fisher & Paykel SleepStyle machine to try free, and buy at $2400. Based on my wife's experience with a ResMed S9, I knew I was going to buy a ResMed. The SleepStyle machine was a brand new model, and not supported (and still is not) by SleepyHead. And worse still I believe it is unable to distinguish between central and obstructive apnea events. It increases pressure in response to both, and can't give you a breakdown of the apnea event types. Fortunately I was able to exchange machines with my wife during the trial and collect enough SleepyHead data to know how to set up my new AirSense 10 AutoSet when I got it. I do have to give her credit for the P10 mask though. I am about to try my 6th mask, but so far the P10 has worked the best. It is also one of the cheapest masks, so that may have been the real reason for the choice!

In short that is how I have gotten to where I am. Treatment of my mixed central and obstructive apnea has not been easy. It has taken me 9 months to get AHI under 2.0, and get a fairly restful sleep. And, there is still room left for improvement. There is always one more mask and pressure setting to try!