Sierra

I think one thing to consider is that the apnea treatment industry is not very old. It only goes back to the early 1980's and it was pretty crude back then. The discovery and use of insulin for diabetes in comparison started 60 years earlier. My observation is that the industry is in a state of major change. The method and who does treatment varies widely from country to country and region to region. Some treat it as a very serious disease, and others that it is an elective treatment.

In the US under the government and private insurance thumbs, it seems to be very prescriptive. The expectation is that you will do an in lab sleep study, if positive then an in lab titration test, a trial CPAP (not APAP), if that fails then an APAP, and If that fails a BiPAP, and if that fails than perhaps an ASV. In Canada we seem to be all over the map. Some provinces cover the cost. Some do not. Some will allow prescription from a home study test, and some will not.

And, then there is the industry politics and financial realities. In the province I am in, the cost of a CPAP is not covered by government health care, only private insurance. The government however has allowed in the home study sleep clinics without any requirement to have a doctor on staff as long as they consult one to read the test results. He(she) does not even write the final prescription. That is left to the GP that ordered the test. I doubt my GP really even knows what a CPAP looks like. These clinics cover their costs by charging exhorbitant prices ($2400) for equipment available on line for $850. This has the "old boy" in lab sleep clinic people who have invested in facilities to do the in lab and titration tests all upset. They have now lobbied the government to upgrade the standards to force these upstarts to have a doctor actually on staff, although it does appear to only be somewhere. They have also forced higher education standards for the technicians administering the testing, and dispensing the machines. Here is a link to the news story on it. The regulations are still not going to be in force for another couple of years or so.

The other problem in the industry, and that may be more widespread across countries is that the profit seems to be wrapped in the sale of a machine and frequent supplies at exorbitant mark up prices. The on line stores are cutting into their game. But, the issue is that they ideally want to test you, get a diagnosis and prescription for a machine, sell you and expensive machine, and then hope you never come back for help or have any questions.

My thinking is that the on line stores are here to stay, and the at home sleep study is going to become the first line of diagnosis, followed by an immediate trial of an APAP, not a CPAP. In the future this is going to drive down the cost of equipment sold by clinics and they are going to have to become more responsive to their patient needs. For example train them to monitor their results adjust their own machines, rather than keep repeating titration tests, and adjusting machines for patients.

Bottom line? One needs to look after their own interests. The better you understand how the industry works, and understand the basics of treating the condition, the better you can look after yourself. Just my thoughts...

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.

My thoughts are that if your apnea is all obstructive, the APAP can adjust pressure quite effectively in most cases. However, most often a narrow pressure range is more effective than a wide range. Bringing the minimum pressure up tends to have more effect than increasing the maximum pressure. If there is significant central apnea, one may be able to do better with a fixed pressure.

This said, a picture is worth about 1000 posts. If you want to post a SleepyHead screenshot of your Daily Detail report I could be much more specific with comments, and help you out on how to read the report. It would be helpful to post a shot of where you were getting to with the fixed 14 cm and a typical one now with the auto range. If you need any help posting the screen shot, just ask.

The alternative to waiting for another appointment is to make your own pressure adjustments if you are comfortable doing that. Some are, and some are not. If you need help doing that, just ask. Here is a link to the technical manual for your machine. The Provider Menu instructions start on page 4-18. You can read it over and decide if you feel confident making changes. I can make a pressure change on my machine in about 15 seconds. It just depends what you are comfortable with.

I agree that positional issues can cause clusters of obstructive apnea, and in that case some find a cervical collar helpful.

What I noticed is that the higher frequency of OA occurred with the full face mask and the higher pressures. The other possibility is that the clusters may be sleep wake junk (SWJ), if the mask was uncomfortable and sleep was disturbed. Once it starts to occur the machine can chase the events with more and more pressure, kind of like a dog chasing their tail.

Rich, SWJ sometimes happens when we are restless and repeatedly drifting off and waking up again. Sometimes you can recognize it by looking at the flow graph zoomed in on the area of interest where the clusters occur. Just put the mouse over the cluster of events and left click repeatedly (at least on a PC), or keep pressing the up arrow. This will let you zoom in and see how the events appear in detail and whether or not you are likely sleeping or not. Post one of those zoomed in screens and I will give you my thoughts. To reduce or eliminate the zoom, just hold the down arrow down.

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!

If you have figured out the Provider menu. I would suggest three changes:

• Minimum pressure: 6.5 Cm
• Smart Ramp: enable or on
• Ramp Start Pressure: 6.5 cm

This should hold your pressure at a fixed 6.5 cm until you fall asleep. Then it will let the machine start controlling it in Auto starting at 6.5 cm.

Once you get your feet on the ground, I agree with bonjour's suggestion to use SleepyHead. It is free, but if you can get good AHI results and a good sleep, it may be more that you want to bite off at this time. The goal for treatment is to get under 5 for AHI, and ideally down to the 1.0 range.

Interesting. Some plastics have a significant water content. Soft contacts are an example. Perhaps what you are accomplishing is getting some water back into the plastic.

I have heard the vomit risk before. But, then think what it would be like if one vomited into a full face mask. That would not be very nice either! Yes, I also fold over one end to get a removal tab.

Ok, one option would be to go back to your provider and ask them to increase the minimum pressure to 6 or 7 cm if it is set lower, and the ramp start pressure to 6-7 cm. The ramp start pressure cannot be set higher than the minimum pressure.

If you want to set it yourself it would be helpful to know where the machine is set to now. To do that you have to go into the Provider Mode Screens. To get into Provider Mode you have to hold down the ramp button and the control dial button at the same time for 5 seconds. See page 4-18 in the manual at the link below.

DreamStation Tech Manual

If you could post what your setting are in the Therapy Screen. Also go to the Info screen and find out if there is a 90% Pressure value(s). Post them here and we can go from there. To get back to your user menu select the Home icon.