Feeling discouraged, need advice

[doom969]

Well, first of all, a HUGE thank you to everyone who took the time to answer.
It makes a world of difference to me, knowing whats normal and whats not, what to expect, etc..
Every bit of advice helps, I read a lot, including the newbie sections of this forum, but its a lot to take on, and I don't have any friends or family members with sleep apnea to help or discuss.
So thanks everyone.

Okay so a bit of an update :
Following the advice yesterday, and some more reading I made the following change
- put the machine back in auto mode
- put min at 9.5, and max to 16
- enabled A-Flex and put the setting to 3 (which made a BIG difference in my comfort level, thanks @pugsy )
and behold , my AHI was down to 6.21, which may not be great, but is a lot better still
Also I feel better this morning.

SO can any data guru or knowledgable person can have a look at my new chart and help point me to where I should go from here ?
From what I see I am thinking maybe max is good, but min could go a bit higher ?
Any other pointers or advice ?

thanks
Dom

[Pugsy]

How did you sleep last night? Wake often?

The Clear Airway/Central apneas we can't expect to stop with more pressure but we can expect to reduce the OAs and hyponeas with more pressure assuming you were asleep when they were flagged.
If you spent much time awake last night some of those flagged events might be related to awake irregular breathing causing the machine to think something happened. Remember the machine only measures air flow and it has no way to know if you are asleep or not.
It can and will flag false positive events in all categories when the irregular awake breathing confuses the machine.
If you aren't asleep they don't count.

Roughly half that AHI was CA/central....so we put that on the back burner for now since we can't expect to reduce it with more pressure.
But the remaining OA and hyponea count could stand a bit of reduction....so yes another 1.0 cm minimum increase I think would be in order.....assuming you tell me you slept decently for the most part last night.
If you tell me you slept horrible and had a LOT of time awake with mask and machine on then don't increase the minimum yet...wait till we see what the results are with decent blocks of sleep.

[doom969]

I had some awake time but not much.
Mostly I had trouble falling asleep as I didn't realize I could use the ramp even with auto mode (duh) I thought it was only in fixed mode for some reason.
Once I figured I could enable the ramp, and with the A-Flex I was much more comfortable and it was much easier getting to sleep.
Also, the nose pillow I have is not very comfy for me, so I will look into that.

couple questions :
- what do you think about the 95% pressure being 14.5, does it mean something ?
- I am thinking about setting the machine to 10-20 for a couple of nights, how does that sound, and would 11-20 be better ?
- Also, anything else stand out to you or anything else I should know ? Like I said I didn't realize for the ramp and A-Flex, so maybe something else obvious is wrong :p
- And any accessories I should look for ? I heard about bungie cord, hose cover, other masks, etc.. Is there anything worth looking into or that most people need/love ?

thanks

Dom¸

ps: pug-pic for your trouble

[Pugsy]

Oh what a handsome little boy. How cute. Later when I have time I will see if I can post a picture of Lucy. Short on time right now.

90/95% numbers are just numbers. The definition is a number where you were at OR BELOW that number for 90/95% of the night.
It is NOT where you spent 95% of the night. The or below part of the definition is often overlooked.
90/95% numbers are easily skewed to the high side with a relatively short period of time spent in the higher numbers.
They really don't mean a whole lot. Unless we are looking at 6 months worth. Short term kinda useless.

You can set the max to 20 if you like...that's what I do with mine. It never gets up there but if for some reason it wanted to it could.
It hurts nothing to have it higher than we ever need. Doesn't affect anything in terms of response or anything...it's just there if needed.
The machine makes the decision. The minimum pressure is your most critical setting. It has to hold the airway open and prevent apneas as a baseline and be close enough to where the machine might need to go for special needs like REM stage sleep or supine sleeping or whatever.
Minimum to 11 won't hurt anything and might be what is needed. Given you have made a huge jump in the minimum in a short period of time I tend to recommend smaller increments to try to avoid discomfort but if you can handle it...go for it.
Your actual obstructive AHI is roughly 3 something...not bad at all in the grand scheme of things and for a newbie...decent.

I gotta run...doctor appt for hubby.

[Dog Slobber]

My thoughts:

Take a look at 1:00, it looks like you hit the ramp button. So:

• You either were awake for those events between 12:30 and 1:00. If you were awake those events were transitional, often referred to here as SWJ (Sleep, Wake Junk). And not much concern. When I was dialling-in my settings I would often just disregard events cluster that occurred during time frames where I knew I was awake.
  • Start of sessions
  • End of Sessions
  • Ramp Button pressed
• Or you were awakened

Do you remember how long you were awake prior to pressing ramp?

Now take a look at about 1:50, the machine is increasing pressure, while you're having a bunch Obstructive and Hypopneas. This suggests to me the machine is not getting to the required pressure fast enough to address the problems. The solution is a little more minimum pressure to possibly prevent the apneas or get to where it needs to be sooner.

Your machine peaked at 14.5 cm, which is not at the maximum of 16, but is close, so you may want to consider increasing the maximum, *should* it need to get there. My pressure rarely hit 14, but my maximum is set to 20.

As Pugsy suggested don't be concerned about the Centrals yet, they're not fixed with pressure. But to share my experience with them, for me, as I got accustomed to sleeping with the device and started sleeping better my Centrals just starting subsiding and naturally went away.

Yes, Ramp can be set while using APAP, I'm actually surprised you like it so low (4 cm), a lot of people find it difficult to breathe with so little pressure. As you get accustomed to CPAP you might want to consider increasing Ramp pressure so it's closer to your needs should you fall asleep during ramp time.

what do you think about the 95% pressure being 14.5, does it mean something ?

It means that for 95% of the time you were at or below 14.5 cm of pressure. Kind of arbitrary.

I am thinking about setting the machine to 10-20 for a couple of nights, how does that sound, and would 11-20 be better ?

You're at 9.5cm, I agree with Pugsy, to increase your minimum by 1 or so. Setting to 10.5 or close should be good. See what happens.

I also like setting the machine to 20. Let it take what it needs to take.

But most importantly, it appears you're feeling better and seeing improvement. Keep it up!

[Miss Emerita]

You feel better this morning—that’s great!

So tell me, what kind of pillow mask do you have? I use a ResMed P 10, and I found it very uncomfortable at first. Turns out the technician was wrong to suggest I use small pillows. Medium was better, and then I tried large—much better! I wouldn’t say my nostrils are especially large, but the large pillows sit more comfortably and don’t tend to wedge themselves in my nose. I slightly angle them to get the best fit.

My favorite accessory is my Hose Buddy Hose stand. It gets the hose up and out of the way. Other people use their headboards for the same purpose or other ingenious ways of hanging the hose.

And by the way, I bet you know people who use a machine at night. I’ve learned that two people on my block do, plus three friends. But for expert advice, you’ve come to the right place here.

[doom969]

Thanks for all the feedback and advice.
I am not sure how long I was awake in fact, the thing I remember is having a hard time falling asleep.
I will try setting the machine at 10.5 --20 tonight I think

as for the mask, it looks like the one in the picture but I don't really like it, I am looking at getting a philips dreamwear one with the hose intake on top.

I was hesitant to post here at first, but its been a huge help, all the advice and tips and encouragement.
I can see now that the machine wasn't set properly, but also that I had a big problem with comfort, which is getting better by the night now.
I mean, apnea or not, if its discomfort that prevents good sleep, in the end you are still not rested, or well.
I will stick with the therapy, but I will also look at changing mask, and making my setup better, so that as I get the therapy side dialed in, I can also get more and more comfortable which will also help.

I was very discouraged when I first posted but I feel much more confident now that I am seeing improvements.

One thing I am curious about, are my numbers as bad as the doc told me ?
I mean, I know I have it bad, but I am wondering how bad exactly (sometimes doc may put much emphasis to be sure we get treatement ? )
¸(numbers if first post)

I will report back tomorrow with another night of fine tuning
thanks !

[TropicalDiver]

One thing I am curious about, are my numbers as bad as the doc told me ?
I mean, I know I have it bad, but I am wondering how bad exactly (sometimes doc may put much emphasis to be sure we get treatement ? )

Using AHI, mild is between 5 and 15; moderate is between 15 and 30; severe is above 30. So you are well into the severe range. That said, there have been worse AHI measures posted here. OTOH, my 86 got my sleep doc to get me a machine so I could walk out the door with one same day....

[Janknitz]

Your sleep apnea is pretty bad, but we're going to help you dial in optimal treatment and you WILL start to feel better. Mine is pretty bad too, and at first (once I was getting optimal treatment) I felt kind of tired and really craved sleep because my body was needing that sleep. But on the other end I would feel so GREAT when I woke up. Calm and comfortable for the first time in 40+ years. You can get there too!

The mask you are using is the Swift FX and you should put that in the profile. I have the Dreamwear and really love it. I used to like the Swift FX back in its day except that there was always condensation in the nasal pillows and I felt like I always had a wet dog nose. While you are waiting for the Dreamwear, try the other sizes of nasal pillows as suggested. The pillow should rest gently against your nares, with nothing crammed up your nose--just a little tip of the nasal pillow cone should be inside and not touching anything.

You are doing great, sticking with this. Hang in there.

[SDBud]

Hello everyone.

So here is a condensed version of my story :

I have been diagnosed with severe sleep apnea, my ahi where about 104 on my back, which is about 50% of the night and 64 the rest of the time.
(oxygenation got down to 68-70, pulse up to 110(max), longest pauses where 70secs, with an average of 21 secs)
I had asked myself to get a sleep study because I suspected I had it.
Doctor said I was quite a severe case.

I now have had my CPAP machine for 8 nights, a philips dreamstation apap.
I have slept with it all night, everynight since.

Trouble is I don't feel well rested of better that much. I seem to think a bit more clearly but that is about it.
I feel tired in the morning, and have even woken up with headaches a couple of days.

for the first weak my ahi where an average of 12-14 with the most in the early 20's and lows at 10.

I called back my therapist, explained the problem, and she shifted my machine to constant pressure of 9, yesterday. ( with a 20min ramp, 4 to 9)

Took me months before I could use my machine all night. Even then, AHI was usually still over 5,
and I DIDN'T really feel better.

In March, I adjusted my pressure myself (after reading MUCH here), and dropped my AHI overnight
to less than 1, and recently, I've had 6 of the last 10 days with ZERO events.

And I feel MUCH better when I wake up in the morning.

Trust how YOU FEEL, not what someone else says you should accept.

[Pugsy]

Your diagnostic AHI is pretty high but I know of one person whose AHI on the diagnostic sleep study was over 170 per hour numbers.
You are bad but I have seen reports of worse.

We do for sure need to get your therapy optimized though...no giving up on cpap for you.

Be patient...we will get there.

[doom969]

Just a quick update :
what a difference, I am now down to about 3-4 AHI
I now use 11min to 20 max, with some comfort settings tweaked, things go very much better.
How would you suggest I proceed from here ? What would be the way to proceed forward ?
I am looking at getting a new mask, to be more comfortable.
Also, quick questions, Since setting the min to 11, my teeths kinda hurt in the morning, is this common ?
I am still feeling tired in the morning ( more than before I got my CPAP) but the numbers get better, so I guess the rest will follow

thanks again

[doom969]

* edit graph for clarity

[Pugsy]

Refresh my memory please.....what mask are you using?
Also...how many times do you think you wake up during the night? I see at least 1...
How is your sleep quality in general?

[doom969]

I believe the mask is Swift FX nasal pillow ?
As for how many times I wake up, well i'd say 3-4.
I am still having trouble with the hose, the fact that it is in front does not help.
I am thinking about getting the philips dreamwear one.
as for my sleep quality, it is hard to say.. as you can imagine I haven't slept profoundly or well in a long time.
I still wake up and have trouble finding sleep as well as waking up early.
I do think I need to get more comfortable and sleep better, but I am unsure as to how to go about that
Also, I'd like to get my ahi even lower if possible. of course.
I wear the mask all night, every night.
I think I have adjusted the comfort setting to the best I'll be able to.

thanks again