Another newbie with "issues"!

Hi All,

I've been reading through past posts and am now ready to join in! I am a new user - been through two unsatisfying sleep studies, a trial on a straight C-pap machine and am now on an M series Auto machine with C-flex (setting is 3). I am unhappy at the thought of being tethered to a machine for the rest of my life, but I've got to get a decent night's sleep.

I was diagnosed with severe apnea at 39 episodes per hour. The sleep doctor recommended a setting of 16 (which I guess was necessary to reduce the AHI score to near zero) which felt like a wind tunnel, and the machine howled - not much of an improvement over my snoring for my wife. The DME reset it to 14, but I was getting a lot of awakenings and was still tired throughout the day. We switched an an auto-pap at my urging. It was initially set at a range of 4 - 14 by the DME based on a week long auto-pap titration study which showed a >90% score of 10.6 and no significant activity over 14 mg. My AHI score was 6.4 (nothing to be excited about, I gather).

I was given a chin strap to use because I tend to mouth breathe, especially when I sleep on my side. I have difficulty falling asleep on my back. I hated the bulkiness of the headgear and I suspect that I was continuing to mouth breathe occasionally while on my side. Based on my review of the postings, I changed to mouth taping about a week ago which, surprisingly enough, I find quite acceptable. So leaks don't seem to be a problem - my system leakage score is about 27.

I have since raised the auto-min to 5.5 b/c the 4 mg was not giving me enough oxygen. In the past week, though, my >90% score is creeping up on the seven day average from 9.1 to 10.2, and my AHI index has gone from 6.1 to 8.4. I am still waking up several times a night and I am tired the next day. I'm clearly heading in the wrong direction.

I'm not sure what to do. I can get into the provider menu myself but I don't know what changes need to be made. Should I reduce the range of auto settings, or increase the auto max to 16, or try switching to c-pap mode...?

Any suggestions? I am committed to making this work for me. I like to understand what I'm told to do so if you all would kindly attach an explanation to your recommendations I would appreciate it.

Thank you.

I think you should raise your minimum pressure to 9 cm (8 if 9 seems too much) for a few nights. You don't need to do anything with your maximum pressure just yet, until you see what happens with the raised minimum pressure. If 9 cm (or seems high as you fall asleep, set the ramp for say 20 mins at 6 or 7 cm. I don't think you will need ramp - at least not for long. If it were me, I would also change to C-Flex to a setting of 2. A setting of 3 may be giving you too much exhalation relief and disturbing your sleep as you go back up to inhale.

The minimum pressure is the key to optimum therapy. If your 90% is 9 or 10 cm, it takes too long to get from 4 (or even 5.5) to 9 or 10 cm and you are not getting adequate therapy for your sleep apnea while your pressure goes from 4(5.5) to 9 or 10.

You may have to raise your minimum again unless the AHI improves.

Don't worry about your maximum right now. If this doesn't help, you may have need to raise your maximum but give it a few days to see if your AHI goes down.

If or when you get software and a card reader (and it is a good idea to get it), you will know better what is happening while you sleep and will have something to go on to change the maximum.

Your AHI, in the LCD screen, for the time you've had it is enough to go on for a minimum pressue change, in my opinion. As long as you have a spread of about 3 cm between minimum and maximum pressures it's fine for now.

Those are my thoughts anyway. Hope it helps!

when taping the mouth, it helps to roll the lips inward so the tape goes on the skin and not the tender lips

I agree about raising your min. pressure. When I first started on my auto pap , my DME set my pressures from 5-15. I now have it set at 8 -12, I usually run between 10-11 and last night it was 9.4. Good luck, it all takes awhile to get use to and soon you will be unable to sleep without it. I'm by no means an expert, but allot of these folks know what they are talking about on this forum.

Rosie

Thanks for the recommendations. I'll increase the automin to 8.5 and leave the automax alone for now.

Generally speaking, should the automin be near the 90% pressure? And what is the ideal range between automin and automax - 3, 4, 5 points?

Last night I raised the automin to 8.5 (automax is still 14) and settled down with taped mouth hoping for the best.

I discovered that my 90% went to 11.1 and my AHI increased to 8.9 (seven day averages) last night.

I continue to head in the wrong direction!

Any recommendations, please?

Thanks.

Could you post your machine and mask in your profile so we can see what you are using?

7 day average sounds like Respironics. Those averages can be misleading at times. Did you happen to reset the values to zero so you could see exactly what happened last night without factoring in the other nights.
What mask do you use? What was the leak rate? Still not seeing any improvement in our general physical status?
More exact information is needed? Do you plan to get the software for your machine so that you can see exactly where the trouble areas might be? I was backsliding also until I got the software and saw why my averages were misleading. I have a thread started that delves into my detective work if you want to read it.

In my case it was a combination of too low of a minimum pressure and leak rates. Just playing with various pressure settings and watching only AHI doesn't give much to go on. The more information you can share, the better someone will be able to more specific ideas. There can still be significant leak rates even with taping if mask isn't fitting properly.

I'm sorry. I thought my equipment was being posted and I can see that it was not. I think I was able to change the settings so you can see it now.

Thank you.

One night is not enough time to decide that a certain pressure setting is not working for you. You need 3 or 4 nights to decide whether or not a pressure change might help. Yes, that's a 7 day average but at a variety of pressure settings so your average is based on several different pressure settings. You need 3 or 4 nights anyway, at this setting to form any conclusions.

You shoud "zero" (reset) your LCD screen, probably each day for awhile to see what happens each day.

Here's how - To reset LCD tharapy data (does NOT erase any data form the Smart Card)

1. Hold down the < and > (arrow) buttons while plugging in the power in the back of the machine - wait for 2 beeps or 5 seconds and relase the buttons - just like getting into the therapy menu to change settings.

2. Press the (>)button and navigate to the Therapy Screen".

3. Press and HOLD down the (-) minus button for 5 seconds and/or until the therapy data is reset to ZERO (0.00)

4. Press the (>) button to scroll back to the main menu. Press the "on/of" button to exit the therapy screen.

The next morning you will see on the last night's data. Without the software, this gives a better picture of at least, the minimum data for each day.

If you do this, tomorrow morning you will only see 1 night's data. Then you can see a 7 day average at this setting. If you want to see just the night before's data, do this every morning after you get the data from the LCD screen. Keep a writen record of each day and then you can see if the minimum pressure may have to be increased again. I expect it will. You should increase slowly (.5 to 1 cm at a time), so your body can adjust.

I would leave your settings where they are for tonight and try this.

Your machine is exactly what I use.
Couple of questions. What is your leak rate average showing?
How do you feel?
I see Hawthorne has posted how to modify your averages.

Yes, Pugsy is right! Information on your leak rate will be helpful to us as well!

If you post that, we can maybe try to corelate it to the AHI and the minimum pressure setting.

Thank you all for the responses.

I will zero out the system as you have recommended and keep track of the daily numbers.

My leak rate is 28 - it was never very high (31-32), but when I started taping my mouth shut it improved.

Generally speaking, should the automin be near the 90% pressure? And what is the ideal range between automin and automax - 3, 4, 5 points?

Victor

Vick.....

You're doing just fine....your attitude is perfect......and things will be better quickly.

As for the spread between min and max pressures....4 or 5 points is OK.....just use good common sense.

Since you now have the mouth leaks under control, I suggest that you turn your attention to the mask. You may want to put a blob of Lansenoh Lanolin on each nare before you put on the mask. This stuff helps make a better seal.....and keeps your nares "happy" (comfortable). As I squeeze it out of its tube, I use about a 1/4" blob per nare. Just gob it on......it can't hurt a thing.

Once you've conquered mouth AND mask leaks......and have your internal airway pressure steady, you'll be able to more easily determine the perfect machine setting.

Finally, get the software and a card reader as soon as possible. Having the data it produces makes ALL the difference. Unless you have software, it's like driving without headlights on a dark night....you can't see clearly where you're going....and you can't see where you've been.

Gerald

I boosted my minimum to 10 and my 90% stays in the 11-12 range. I had the advantage of seeing (using the software) that at 8 and 9 cm I was throwing enough apnea events to affect the way I felt the next day. My averages were in the 5-7 AHI range but I felt like total crap the next day and had my usual headache. Wulfman suggested I bump up the minimum and Ozij suggested I leave max wide open for a few days to see where things ended up. Bear in mind that I had already confirmed that I didn't throw any central apneas in my initial sleep study. Increasing pressure possibilities too much can trigger central apnea events. From the way my data seems to be gathering I will likely settle around 10min and 14 max as I do seem to hit 13 occasionally.

This is why I asked how you felt??? If feeling improvement then if it were me I would leave it at the 8.5 you have as minimum and maybe 2 points above your 90% range (if no history of centrals). Then give it a week or so to see how the daily averages tally up. If you aren't noticing any improvement then you may still be throwing just enough events at the lower range to affect the way you feel. You might consider nudging up the minimum in small increments. Your leak rate is good so we can't blame it on that. Without the software all we have to go on is daily averages and how you feel.

Also one thing to consider also if you are still feeling bad is that averages can be misleading sometimes. Example with a leak rate average. Suppose you had 6 hours of sleep and for 5 hours of that sleep you didn't have much leak but during the last hour you moved around and dislodged the mask so that the leak was fairly significant enough to affect therapy. Overall average might still be within an acceptable range but that last hour really messes up how you end up feeling. I find that my last hour of sleep consistently has the worse leak. LOL

I am a newbie myself and I can really only tell you what I have done and what I might do under your circumstances if I were in your shoes. Regarding what is a perfect range between minimum and maximum pressure settings? I am not sure there really is one. It all depends on what works best for the individual. Obviously we don't want it too low because the machine will take to long to get to the pressure needed to address the event but some people need a lower minimum for their breathing comfort. A range of 8.5 to 13 is certainly a good starting point though.
Brenda

Hey, you guys are great!

I really appreciate the help.

In terms of how I'm feeling with the therapy... I felt that long tired achiness of exhaution go away within the first week (that was about 6 weeks ago). I'm still tired throughout the day, some days I feel more refreshed than others - not consistently so. Lately it has been worse which is why I became concerned.

How do I get the software and the reader? Will it come with instructions on how to interpret the data?

Victor