Newly diagnosed, seeking feedback on results

Hi all,

I was diagnosed with severe sleep apnea on 23 March 2020. I was given a DreamStation APAP on 24 March 2020 and have been using it every night since (although first two nights couldn't get to sleep with it on). I just discovered this forum and the SleepyHead software. I live in Japan.

I'm interested in getting some feedback on my results, please see below for my overview to date and the last few nights.

A few specific questions I have are:
1. I don't know my API at the time of diagnosis, but I was told I have severe sleep apnea (average >30 incidents per hour). Do these results reflect that? Is the machine working well?
2. Are vibratory snoring events bad for my health or just noises? Which events should I focus on the most for my health?
3. I recently bought a fitbit and will try looking at my APAP and fitbit data jointly (apparently fitbits can track sleep stages). Does anyone have recommendations about looking at fitbit sleep data for people with sleep apnea?

Hi - your lab results should be yours by law (as they would be in the U.S. and Canada), so see if your doctor (not the lab) will give you a copy - only doctors here can give you results.

You should install Oscar (see top of main page) because it's a step up from Sleepyhead, with better info. but you don't need the calendar.

Don't try to compare Fitbit info with Oscar or other software as it's not much serious use for apnea... I mean I suppose you could look at it, but I wouldn't count on the results telling you anything much.

Snoring won't 'hurt' you (unless it's extreme, and even then not likely to) but it's a sign you should raise your pressure settings - 4-5 min. is very hard to breathe at for most and raising it to 6-7 or even 8 (in time) would be better and get rid of a lot of the snores and hypopneas - especially if you don't sleep on your back. And unless there's some reason your doctor gave you, leave the max setting at 20... won't hurt anything and will give the min. room to rise if it needs to.

Welcome, tom2020! Your numbers are very good, and you seem in general to be doing very well right out of the gate. (Those first few nights? Most of us had them too. They don't count!)

Your machine is doing an excellent job of controlling your obstructive apneas. What you have, in fairly modest numbers, are events that indicate various kinds of partial airway obstruction: hypopneas, flow limitations, and snores.

The big question that should be on your mind is: how am I feeling? Before you started therapy, were you sleepy during the day, foggy, grumpy, blah? If so, you'll be looking for signs of improvement in alertness, cognitive function, mood, and energy. The improvement may come gradually, in subtle stages, so don't fret if you're not feeling it yet. For some people, the process of improvement may extend over a period of weeks rather than days. But then one day you realize you decided to take the stairs without even thinking, or did the math for your checkbook in your head, or let a set-back at work roll off your back.

All that said, I would suggest one change to your settings, and that is to raise your minimum pressure. A pressure of 4 leaves most people feeling air-starved, and most people feel more comfortable with a minimum of 6 or 7. Later on, you may want to inch it up further to give your machine more of a head start on your partial obstructions, but that's not something you need to think about now, in my opinion.

Julie wrote: ↑

Sun Apr 05, 2020 8:40 pm

Hi - your lab results should be yours by law (as they would be in the U.S. and Canada), so see if your doctor (not the lab) will give you a copy - only doctors here can give you results.

Some Japanese doctors tend to be fairly traditional in their attitude, i.e. "I am the doctor, I know best, you don't need to know the details". I might ask for the results at my next appointment.

Julie wrote: ↑

Sun Apr 05, 2020 8:40 pm

You should install Oscar (see top of main page) because it's a step up from Sleepyhead, with better info. but you don't need the calendar.

Do you mean this one? https://www.sleepfiles.com/OSCAR/

Julie wrote: ↑

Sun Apr 05, 2020 8:40 pm

Don't try to compare Fitbit info with Oscar or other software as it's not much serious use for apnea... I mean I suppose you could look at it, but I wouldn't count on the results telling you anything much.

I'm mostly interested in sleep stages, since no breathing data can give you that information AFAIK.

Julie wrote: ↑

Sun Apr 05, 2020 8:40 pm

Snoring won't 'hurt' you (unless it's extreme, and even then not likely to) but it's a sign you should raise your pressure settings - 4-5 min. is very hard to breathe at for most and raising it to 6-7 or even 8 (in time) would be better and get rid of a lot of the snores and hypopneas - especially if you don't sleep on your back. And unless there's some reason your doctor gave you, leave the max setting at 20... won't hurt anything and will give the min. room to rise if it needs to.

I think the max setting might actually be 12, not 20. But not sure. Minimum is definitely 4 at the moment. I will monitor it and either ask the doctor to raise it in a few months when I next meet him, or try to do it myself.

Miss Emerita wrote: ↑

Sun Apr 05, 2020 8:41 pm

Welcome, tom2020! Your numbers are very good, and you seem in general to be doing very well right out of the gate. (Those first few nights? Most of us had them too. They don't count!)

Thanks for the encouragement! And yes, after some initial research I quickly found out that most people struggle a bit.

Miss Emerita wrote: ↑

Sun Apr 05, 2020 8:41 pm

Your machine is doing an excellent job of controlling your obstructive apneas. What you have, in fairly modest numbers, are events that indicate various kinds of partial airway obstruction: hypopneas, flow limitations, and snores.

I'm glad to know the machine is doing a good job!

Miss Emerita wrote: ↑

Sun Apr 05, 2020 8:41 pm

The big question that should be on your mind is: how am I feeling? Before you started therapy, were you sleepy during the day, foggy, grumpy, blah? If so, you'll be looking for signs of improvement in alertness, cognitive function, mood, and energy. The improvement may come gradually, in subtle stages, so don't fret if you're not feeling it yet. For some people, the process of improvement may extend over a period of weeks rather than days. But then one day you realize you decided to take the stairs without even thinking, or did the math for your checkbook in your head, or let a set-back at work roll off your back.

That's a good question to ask. And honestly I don't really know. I guess I hoped I'd feel dramatic improvements quickly, but realistically I guess the effects may be subtle/slow, etc. Plus, health is a complex thing and I am working on making some other improvements at the moment, too. I want to exercise more and eat healthier. So hopefully all this in combination with the CPAP/APAP helps me gradually feel better and more energetic!

Miss Emerita wrote: ↑

Sun Apr 05, 2020 8:41 pm

All that said, I would suggest one change to your settings, and that is to raise your minimum pressure. A pressure of 4 leaves most people feeling air-starved, and most people feel more comfortable with a minimum of 6 or 7. Later on, you may want to inch it up further to give your machine more of a head start on your partial obstructions, but that's not something you need to think about now, in my opinion.

Do you think there are any risks with increasing the minimum pressure? I notice on a few of my last nights' sleep that pressure automatically goes down as low as 4, so maybe its not necessary to raise the minimum?

Also, on the night of 2 April I tightened my mask quite a bit, since I felt like it was leaking. Not sure if that is reflected in the numbers at all.

Increase your minimum pressure to 6 cm. This will engage your Flex relief so that your breathing will be easier. It doesn't kick in fully until you are at 6 cm. It is easy to do yourself if you are comfortable doing it.
Go here and request the clinical/provider manual for your machine and it will explain how to get to the clinical setup menu where the changes can be made.
https://www.apneaboard.com/adjust-cpap- ... tup-manual

On your events graph...everything below the H (hyponea) point to the airway trying to collapse and even though it may not completely collapse to the point your earn an OA flag or hyponea flag...all that flagged stuff can impact your overall sleep quality which in turns impacts how you feel during the day.

The minimum pressure is the most critical pressure setting. They idea is to have a good baseline pressure to hold the airway open for the bulk of the night and then be close enough to increase it to the point you might need higher pressures. A lot of wide variation and changing pressures isn't really a good thing. You want the pressure line to be a bit more stable.

Your leaks are fine. Not the prettiest of leak lines but unless they are waking you up you are well within what the machine can compensate for.

That dramatic overnight miracle you were hoping for.....it happens occasionally to some very lucky people but most people find it takes a while to experience it. Some it takes weeks and some it takes months.
There's more to getting good sleep and feeling good than just the AHI number. Sleep quality itself is extremely critical along with the number of hours of sleep.

There are no risks associated with increasing that minimum...heck your machine goes much higher than that for most of the night anyway.

Pugsy wrote: ↑

Sun Apr 05, 2020 9:29 pm

Increase your minimum pressure to 6 cm. This will engage your Flex relief so that your breathing will be easier.

Okay, I raised the minimum to 6. Will compare my results over the next week. What's "Flex relief", by the way? I noticed this was mentioned in the settings, as well, but I don't understand what it means.

Pugsy wrote: ↑

Sun Apr 05, 2020 9:29 pm

Your leaks are fine. Not the prettiest of leak lines but unless they are waking you up you are well within what the machine can compensate for.

I'm not waking up by them (as far as I recall), so probably it's fine. By "not the prettiest of leak lines", do you mean that it could be better? How so and what could I do to improve it?

Pugsy wrote: ↑

Sun Apr 05, 2020 9:29 pm

That dramatic overnight miracle you were hoping for.....it happens occasionally to some very lucky people but most people find it takes a while to experience it. Some it takes weeks and some it takes months.
There's more to getting good sleep and feeling good than just the AHI number. Sleep quality itself is extremely critical along with the number of hours of sleep.

I might start to journal a bit to track my more subjective symptoms and alertness.

Pugsy wrote: ↑

Sun Apr 05, 2020 9:29 pm

There are no risks associated with increasing that minimum...heck your machine goes much higher than that for most of the night anyway.

That's true. I guess this is all still new to me. I'm also slowly realising that I guess I will always use this machine now. Not sure how I feel about that yet.

Maybe it needs saying that 4 is the default min. setting... you couldn't go lower if you wanted to and as I said most people find it hard to breathe at all there... and 20 is the default max (not 12) so keeping it low (or lower than 20) only prevents the min. setting going higher if it needs to at some time - not helpful. Flex relief (or EPR on Resmed machines) makes exhaling easier for those who find it difficult... not everyone does, but it's there if you want to use it, though you'll likely find your AHI a bit higher then, but it's not a major problem.

Thanks, Julie!

tom2020 wrote: ↑

Sun Apr 05, 2020 10:46 pm

Okay, I raised the minimum to 6. Will compare my results over the next week. What's "Flex relief", by the way? I noticed this was mentioned in the settings, as well, but I don't understand what it means.

Flex is exhale relief. With Respironics there are 2 forms...CFlex and AFlex....AFlex is the newer version and available when auto adjusting pressures are used. It is based on the force of your breathing how much you get...and more of a timing of the drop during exhale than it is the actual drop. It can make the breathing feeling more natural and less chance of that suffocating or stifling feeling.
It's meant to make a person more comfortable and at ease with breathing with the machine. It's an optional feature...some people don't care for how exhale relief feels but some people really like it. I tell people to try it and see...hurts nothing to try it.

There used to be a nice explanation at the Respironics website but they moved it and I can't find it now.
But I saved this.

"I'm also slowly realising that I guess I will always use this machine now. Not sure how I feel about that yet."

I can remember confronting that kind of realization many decades ago when I started needing eyeglasses. It can be a little sad to know that your body no longer functions as well as it once did. But keep in mind: you have a completely safe and non-invasive way to treat your apnea, and in time you will feel that using your machine is no more complicated or interesting that putting on glasses to read.

Thanks, Pugsy, for the explanation!

And thanks, Miss Emerita, for your words. I also wear glasses, and I guess that's a fairly similar analogy. Probably one big difference for me is that I have never known someone else or seen someone else using a CPAP/APAP machine, whereas I have seen people wear glasses before. Anyway, it's something I'm getting used to, and I think I am starting to feel some benefits already, actually. They are subtle, but they are noticeable.

You might be surprised about the number of people you might know that have sleep apnea and use cpap once the word gets out.

When life gives you what you think are lemons....make some lemonade. Look for the positives instead of dwelling on the negatives.
I know it can be tough and sometimes just plain annoying.....Next month I will have been on cpap 11 years now and I admit that sometimes I wish I could just sleep "normally" or like I used to but the cold hard fact of life is I can't so I sigh and mask up every night.
Everyone with any sort of health issue will usually have to do something they find annoying and sometimes really annoying.
Be it giving yourself insulin or taking some sort of medication that comes with unpleasant side effects or whatever.
We do it because we have to so that we limit the damage done to our bodies and our overall health. Think of cpap as a preventative pill to swallow...preventing that heart attack or stroke that comes up short and leaves you a vegetable.... or in my case prevent killer morning headaches from low oxygen levels which not only give me a nasty headache but damage all my organs....or prevent having my sleep interrupted by having to get up and pee every hour on the hour with a painfully full bladder each time.