Resmed S9 Elite, mouth-breathing, rollercoaster

Hi, just a little intro before I explain my situation. After dealing with increasing fatigue over the past year and a half, I had a doctor send me in for a sleep test earlier this year. My father has sleep apnea, however he is obese, whereas I was a young, well built 29yo male with no other medical issues, with my blood test results stating I'm in great health. The test came back positive, with mild apnea when I sleep on my side, and severe when I sleep on my back (I stopped breathing an average of 32 times an hour). The doctor inspected my nose and throat and found nothing out of the ordinary.

For the past 10 years or so I have struggled with throat infections on an almost constant basis, at least 3-4 times and year, and the sickness lasts for about a 2-4 weeks. Before my apnea was diagnosed I had often requested to have my tonsils removed as they seemed to be the main source and starting ground for infections. I also have issues with swallowing sometimes. Many doctors here have denied my request saying that it isn't necessary.

After a few trips to a CPAP provider I was finally offered a trial unit and a nasal mask and began treatment. I borrowed the Resmed S9 Elite, which was the unit I planned on purchasing. I mentioned to the nurse on staff that I tended to breath through my mouth, but she told me I should use a nasal mask as they were more comfortable and easier to use. The first night of sleep was rough, and for the next few weeks I had to get used to sleeping with the mask on my face and not subconsciously taking it off during the night. After a few days I felt like my head had cleared, and within a few weeks I felt like my energy was returning. Within a month I started to slowly get back to myself, going to the gym, and becoming active again, shedding off the extra weight I had gained. I found myself feeling positive, eating healthy with few cravings and feeling better and more energetic than I had in years. For the entire spring and summer I didn't get sick at all, and made a lot more progress at the gym than I ever had.

After 3 months had passed it was time to return the trial unit and purchase my own, which I did with the help of my insurance. Now, here is where things get confusing. Since getting the new unit my energy has slowly declined, and once again I've found myself once again craving sugars, carbs, and caffeine and I've had to stop going to the gym. When I did attempt to go the gym regardless of feeling tired I became sick and had to fight off a throat, chest and sinus infection, all while working a number of months doing overtime (approximately 45-55 hour weeks). For the past 6 months I've worked as a digital lighting artist for film and spent most of my summer in a dark room staring at a screen.

Finally, fed up, and realizing that my tiredness wasn't just in my head, or related to overtime work, I took my unit back into my vender with suspicion that the unit might be defective. The nurse on staff ran the diagnostic on the units software and it came back clear, she checked my hose for holes by holding it up to the light, and then held the end of the hose to her hand to "check the pressure". She said the unit was fine. I felt that these 'tests' (other than the diagnostic) seemed inaccurate, as how can one establish that the machine is giving the correct pressure when you just hold the hose end up to your hand? How can that even come close being a scientifically/medically viable test?

While talking to the nurse I did mention that I had woken a few times to find my mouth slightly open with the air blowing out through my lips. She suggested I try strapping my chin closed with a tensor bandage and see if it made a difference. I took my machine and left, bought a tensor bandage and tried it for the next week. The bandage did seem to help a bit, and I felt a little less tired and hoped that in time things would improve.

A week later I bought a full face mask and I'm now waiting to see my sleep doctor to arrange a titration study with the new mask and explain my issues. Frustrated, I slept Sunday night without even using my machine and woke up feeling pretty good, wore the mask again last night and now I'm feeling today like I'm suffering from jet lag, struggling to focus, constantly yawning and trying to keep awake with coffee.

I guess my question is, has anyone encountered this before? A yo-yo between CPAP working really well and feeling recovered for months, only to find it's no longer effective? I'm feeling less sure anymore that the mask is even the problem and that my machine may be defective. Has anyone had to return a machine before? Are there any better tests that can be run to check the effectiveness of the machine? Should I bring my machine into my sleep doctor for their staff to take a look at? Do vendors get a kickback for selling machines and negative repercussions for returns?

Thanks for your patience in reading my story and any help you can offer.

-Matt

You have the S9 Elite??
It's a full efficacy data machine. Have you downloaded the software so you can see what is maybe happening that might explain your symptoms. See the links in my signature line for information about the software that is available to use with your machine.
Maybe there is enough excess leaking (mouth breathing or whatever) to lessen the effectiveness of the therapy pressure.

I am assuming that you are using identical settings now with this machine as you did with the first machine...same pressure..same EPR etc??

Check the basics first. Sometimes there's a quick easy answer. While it wouldn't be impossible to have a faulty machine...it would be extremely rare.
Besides, you need to be able to understand your data anyway..good education.

You have an S9 elite - all the data is on board. Didn't those DME idiots look at your data to see how you were really doing?

Get Sleepyhead and down load your data and look and see how you are doing breathe by breathe. Look at the top of the page for the first thread in the first box for more details.

I know that they did download my data, and I did see that they brought it up. The nurse spent about a minute or two looking it over. The machine itself updates me every night telling me my AHI numbers and the like. It's always been really low, always less than 3, and usually around the 1.1-1.4 range. The unit hasn't given me any errors during use, and my mask fit has always been a green happy face. I'll have to download the data tonight and take a look. Especially at last nights data as the sleep was really terrible. My mind is in a fog today and I'm more exhausted than usual. I find it so puzzling as to why things were working so well before and so awful now. When I started feeling tired again this summer I did go into the machine and turn off the EPR as it was turned off during my trial unit. It certainly felt more effective afterward, but obviously not enough. Beyond that I haven't touched the settings and I keep my pressure set to 9, which was what my doctor prescribed me to.

Oh another thing I've experienced it having my limbs go numb during sleep for no apparent reason. For instance, I'll wake up with my hands resting lightly on my chest with absolutely no feeling. I wake up and have to rub them to get circulation back into them. My blood pressure has always checked out fine with doctors. I'm not sure what is causing this as nothing is cutting off the the circulation.

Mr Smiley face for leaks doesn't turn to Mr Frowny face unless leaks exceed 24 L/min for 30% or more of the night. It takes a lot of leaks to get Mr Frowny face to appear so I don't always want to rely on him for leak evaluation. I like to look at the leak line itself to see what went on. Numbers and % are easily skewed so I prefer to go straight to the leak graph.

When people initially do well on therapy or maybe don't ever do well there can be a host of things that might be suspects. Some are related to the cpap machine and therapy effectiveness but not everything. We just usually start with the obvious and rule that out first because if therapy isn't optimal for whatever reason we have to suspect that as a number one culprit for not feeling so great until we rule it out. Then we move on to other things which might affect how we feel.
There's so much more to feeling better and sleeping better than just the numbers on the reports.
Hours of sleep? Fragmented sleep? Meds? Pain? Comfort? General health issues? Insomnia? and a long list of other stuff .

Traiven,

First of all, Pugsy has given a pretty complete list of things that can and should be investigated as potential causes for your current downward trend in how well you're feeling.

But this caught my eye as a person who has SAD problems:

Traiven wrote: After 3 months had passed it was time to return the trial unit and purchase my own, which I did with the help of my insurance. Now, here is where things get confusing. Since getting the new unit my energy has slowly declined, and once again I've found myself once again craving sugars, carbs, and caffeine and I've had to stop going to the gym. When I did attempt to go the gym regardless of feeling tired I became sick and had to fight off a throat, chest and sinus infection, all while working a number of months doing overtime (approximately 45-55 hour weeks). For the past 6 months I've worked as a digital lighting artist for film and spent most of my summer in a dark room staring at a screen (emphasis added).

Has the increasing fatigue, the craving of the carbs and caffeine, and the lack of energy to go to the gym increased with the decreasing of daylight now that fall has arrived?

You say you spent much of the summer in a dark room staring at a computer screen. Are you still spending most of your working life in a dark room staring at a computer screen?

Have you traditionally had more problems with brain fog, fatigue, sleep problems, and (perhaps) moodiness in the winter months relative to the summer months?

The reason I'm asking these questions is two-fold:

1) It's possible that you've got a vitamin D deficiency starting. You might want to add a vitamin D supplement to your diet so that you know you're getting enough vitamin D. (One symptom of a vitamin D deficiency is a lot of fatigue.)

2) It's possible that the lack of natural sunlight in your life is triggering some seasonal affective disorder (SAD) symptoms. The traditional self help for SAD is to get more really bright light in the morning when you first get up. But natural light is scarce in the early AM at this time of the year, and hence a lot of people with SAD symptoms use a light box. The light box has bulbs in it that are capable of simulating the level of sunshine in the early morning hours on a very clear day. If SAD is part of the problem, light therapy (i.e. using the light box every morning for about 15-30 minutes) may help bring back some of the energy.

Hey robysue, thanks for your input. I've been on a vitamin D supplement for months, and had my vitamin levels checked and cleared in the past month. I had already started working in the mostly dark room by mid-spring, when I still had a lot of energy. My apartment also has massive windows so every morning I wake up to sunlight and it's only become dark out at night within the past month. I also make sure to take at least a few breaks during the day to go for 10-20 min walks around in daylight, and try to eat my lunches outside.

My average sleep time is about 7.5 hrs a night. On weekends I can sometimes get a bit more. I usually aim for 8 hours a night as I always have. I'm on no medications and have no other medical issues. I do get the odd night of restlessness, but nothing more then usual. For instance, I was at risk of unemployment recently, and wasn't having the best sleep. Last week I found I was having my contract extended for another year and I've received a bonus. My sleep hasn't improved and in fact I had worse sleep. One thing I did note was that my bad night of sleep last night, I also woke up at least 6 or 7 times.

I should be back home in a number of hours and will be able to get my data loaded up. Are there any specific graphs I should share?

Traiven wrote: I should be back home in a number of hours and will be able to get my data loaded up. Are there any specific graphs I should share?

The summary data from the last several weeks would be useful, as would the summary data from a period when you were feeling well.

It would also be useful to see the following graphs from the detailed data for 1-3 nights that you think are pretty typical of what's going on now with your sleep:

The events chart
The flow wave graph
The leak graph
The flow limitation graph
The snore graph

We DON'T need to see the pressure graph since you are using an Elite---unless you are making very liberal use of the ramp feature off and on throughout the night.

Robysue

Wow! Okay so reading my graphs has been very enlightening!

When I was first given a machine my sleep doctor set me to a pressure value of 7. This I stuck with for a number of months. When I had my titration study done they told me that 9 was my optimum pressure. Whenever I adjusted my machine up to 9 I felt like I didn't sleep as well, but eventually forced myself to go up to that number.

Well low and behold, looking at the graphs I've found i'm having an awful lot of central apneas! I've been diagnosed with obstructive sleep apnea, so the presence of these in my data is a bit of a shock. They actually outnumber the obstructive apneas nearly 2 to 1, especially the times where the pressure was increased to 9. When the pressure was set to 7 it appears that I have far fewer central apneas, but some are still showing up. This explains why I was waking up with my hands and feet feeling numb! - EDIT - From the looks of things many of the central apneas at 7 are when entering sleep, or even happened when I was awake with the unit on. At the higher pressure they seem to be more common during the sleep, although it's hard to tell if I've woken up during these times.

Last night I slept without the machine and actually felt pretty good today. I wasn't a blaze of energy, but my head was clearer, and I was a lot sharper. I'm considering sleeping without the CPAP unit, but on my side (which is the position I had only mild sleep apneas during my initial sleep study), or lowering my pressure back to 7, which in the very least minimized central apneas but ensured my obstructive apneas were being taken care of. I'll be meeting with my sleep doctor on Friday so I may print out this data. I'll try to compile my graphs so I can get everyone's input on here as there may be more there that I'm not seeing.

Okay, here are my graphs:

The last graph is one of the most recent nights of sleep that was terrible, and represents the apex of my sleep troubles. The other two are random selections from earlier in the month when my pressure had be set to 7 by the nurse at my vendor because she didn't have my prescribed 9cmH20 prescription on file. After a few days I decided I might as well change it back myself instead of travelling halfway across the city for a 3 second adjustment.

Thanks for your help everyone! Hopefully I can figure out what's going on.

How come your flow limitations are upside down? BTW..they look pretty ugly. Lots of activity going on there. Don't know if that has any clinical significance or not but might warrant investigation.
Normally they look like this with axis on the bottom and then going up. My FLs are really pretty boring. Yours aren't.

Hi - another thing (re your numb hands) is that you could have an incidental problem with your neck (cervical spine) that account for the symptoms and I wonder if you shouldn't try a Pap pillow (Google them) to allow you to sleep on your side, avoiding a lot of apneas that back sleeping encourages (as well as not necessarily being good for your back or neck). Do you at least use some kind of wedge/pillow under your knees when back sleeping? I'd also look into whether you might have carpal tunnel syndrome, unrelated to OSA, but certainly not helping anything sleepwise.

The events actually look kind of boring on these graphs since you say the one cluster at the beginning of the night on Oct 24 was likely scored when you were awake. And I'm certainly not seeing any clusters of CAs that look troublesome.

But as Pugsy pointed out, that flow limitation graph looks pretty ragged.

As for why the flow limitation graph is upside down: What version of ResScan are you using? Way back when in ResScan 3.** or other when I was still using an S9, this was the way the FL was shown. It was reversed in the next version or two of ResScan (still a ResScan 3.** if I recall). Perhaps ResScan has switched the graph yet again?

robysue wrote:As for why the flow limitation graph is upside down: What version of ResScan are you using? Way back when in ResScan 3.** or other when I was still using an S9, this was the way the FL was shown. It was reversed in the next version or two of ResScan (still a ResScan 3.** if I recall). Perhaps ResScan has switched the graph yet again?

I didn't know that in those older ResScan versions that the FL was the other way. That may explain things. They are still showing the FL graph like mine shows..and have been in the last 4 version of ResScan that I have used...and the last one is 4.3 which is what was used to get that example I showed.