Newbie Needs Help Self-Titrating

[sleep lover]

Oldies/goodies,
should my vitals be helpful:

my machine: Respironics Remstar Pro C flex +

PSG diagnostic findings:
sleep Efficiency: 73.5%
Sleep Architecture:
Stage N1 sleep: 18.7%
Stage N2 sleep: 53.5%
Stage N3 sleep: 16.2%
REM sleep: 11.6%
Sleep Quality/Fragmentation
Arousal Index: 33.0/hr
AHI: 75.4/hr
AHI while Supine: 91.9/hr
AHI in REM: 84.3/hr
respiratory Events
Apneas 233
Hypopneas 275
Lowest Oxygen saturation: 57%
IMPRESSIONS:
Axis A: Obstructive Sleep Apnea Syndrome - Very severe (327.23)
Axis B: Polysomnogram (89.17)

very severe obstruct. sleep ap assoc w/very severe hypoxemia and significant sleep fragmentation.


I'm new at this and don't understand half of it. I'm 55 and was diagnosed 7 weeks ago. I hardly ever sleep in supine position- cannot fall asleep that way, for what it's worth, so numbers might not be as bad as they look, but then again...

My machine has a heated humidifier with it.

I feel like shit. What I chalked up to before as menopausal and stress related mom issues with 18 year old son, recent shoulder surgery, aches and pains, tiredness, etc., was not so good, but add to it the low oxygen and AHI disturbances all night, it's a wonder I didn't admit to feeling as bad as I did. However, add the trials with the cpap machine the last 6 weeks, including a constant eye twitch, and I'm hitting bottom.

but determined to make this work.

I started out ramping from 4 - 12, but struggled to breath on 4, so the DME put it upto 7 to start, that was better.
Doctor just reduced the 12 to 10.5, but wiped out the ramp and the AHI readout when doing so. I would like to be able to correct these things on my own, not being dependent upon them.

Doc said he doesn't have a clue how to fix the ramp or how to reinstate the AHI info. He said to call the DME, who's maybe said one thing worth remembering. Well, that's something, eh?

Recommendations on how to do it?
thank you, folks, you are most wonderful... don't know where I'd be without your help...

sleeplover

[Julie]

Hi, you don't need the ramp at all if you can stand the first few seconds it takes to adjust to your pressure setting (a very common one and not so high that adjustment is any big deal at all) like the majority of us after the first few nights. It can discourage people from using Cpap if they aren't told it's not needed and they end up starving for air! If you look at your manual, there should be a tip on turning it off (or down/up, whatever).

One thing I'm curious about (ok, nosy ) have you had thyroid testing? You do sound like you're having a lot of trouble and I wonder if OSA is the whole story or not.

[sleep lover]

thyroid's fine, thanks for the asking...

[dtsm]

Can you post your current therapy numbers. Without knowing that, it's difficult to comment or make suggestions.

I have the S8 with the ResScan card and card reader; not exactly sure how to download data on the newer S9 machine. But if you need the software, pm.

[echo]

Did you also have the titration (that's when they hook you up like the sleep study but this time with the CPAP on, so they can find your pressure). If so, what pressure were you 'prescribed'?
If you didn't have a titiration, are they planning on doing one, or are they giving you the at-home trial titration only?

WHY did the doc bring the top pressure from 12 down to 10.5?

[Wulfman]

FIRST STEP, get the software:

https://www.cpap.com/productpage/respir ... chine.html

https://www.cpap.com/productpage/respir ... eader.html

Without it, you're flying blind trying to figure out what you need for a pressure.


Den

[Big Daddy RRT,RPSGT]

Sleep lover,
You have very severe sleep apnea. The good news is that if you get on the right pressure you should feel much better. Be careful with self titration. Too low and your apneas go untreated. Too high and you may give yourself more apneas. If you are unsure about your ordered pressure you could ask your sleep doctor for a trial of Auto from your home care company. The downloads will give you a 95th percentile pressure that works well for many people. As your sleep apnea is so severe you might want an overnight pulse ox on this new pressure to make sure your oxygen level is good.

A detailed copy of your CPAP titration might help you find a starting point for a self titration. Look for pressures that lowered your AHI and arousal index, as well as prevented oxygen desaturation. If you make pressure changes on your own, make small changes, 1 or 2 at a time, use the new pressure for at least a few nights before making another change. Also you may want to make a journal each day. Record the pressure and how you slept 0-5, zero is great, 5 is horrible. Then record how you feel throughout the day morning, afternoon, and evening. 0-5, zero is wide awake energized, 5 is falling asleep inappropriately. Add your scores each day for a possible total of 20. 0-20, 0 is perfectly energized, 20 is horribly drowsy/sleepy. You'd be surprised how difficult it is to remember how you felt on a pressure after a couple of weeks. After you find a good pressure have an overnight oximetry to make sure your oxygen level is good on this new pressure.
Good luck

[fiberfan]

You should be able to find a clinician manual here

[jishy]

Sleep lover,
The downloads will give you a 95th percentile pressure that works well for many people.

My machine is set at 6-20, but my median is always about 7.4 and 95th percentile about 8.8.
Do you think I should I try setting it about 7.4 and start from there?

[sleep lover]

Can you post your current therapy numbers. Without knowing that, it's difficult to comment or make suggestions.

I have the S8 with the ResScan card and card reader; not exactly sure how to download data on the newer S9 machine. But if you need the software, pm.

Hey Echo and others who responded:

PSG diagnostic findings: treatment findings:
sleep Efficiency: 73.5% 88.1%
Sleep Architecture:
Stage N1 sleep: 18.7% 7.4%
Stage N2 sleep: 53.5% 55%
Stage N3 sleep: 16.2% 15.75%
REM sleep: 11.6% 21.9%
Sleep Quality/Fragmentation
Arousal Index: 33.0/hr 6.0/hr
AHI: 75.4/hr 2.1/hr
AHI while Supine: 91.9/hr 2.4/hr
AHI in REM: 84.3/hr 2.7/hr
respiratory Events
Apneas 233 8
Hypopneas 275 6
Lowest Oxygen saturation: 57% 91%
IMPRESSIONS:
Axis A: Obstructive Sleep Apnea Syndrome - Very severe (327.23)
Axis B: Polysomnogram (89.17)

[echo]

Good improvement on the "treatment" PSG!

Now, what PRESSURE did they tell you to use after the "treatment" PSG?

[Big Daddy RRT,RPSGT]

Sleep lover,
The downloads will give you a 95th percentile pressure that works well for many people.

My machine is set at 6-20, but my median is always about 7.4 and 95th percentile about 8.8.
Do you think I should I try setting it about 7.4 and start from there?

Jishy,
If you have used this auto setting 6-20 for at least several nights the 95th percentile should be a good number. The 95th percentile is usually considered the sweet spot, not to high, not to low. To over simplify it's an adequate pressure 95% of the time. Many factors can change our need for pressure night to night. For example If you sleep in one position and don't drink alcohol or take pain meds or sedatives you may do very well on this pressure. Give 8.8 a try, you may do well on that.

After a least a few nights, If you don't sleep good and feel good during the day then open the range a little and see if this is any better. I think 2 above and 2 below the 95th percentile is a good starting range...6.8-10.8 If you still are not sleeping and feeling good and your previous reports on 6-20 show many nights with a certain Max pressure like 12 (or whatever) you could use this as the upper number. Apparently you need this max pressure at least some of the time. If you are very pressure sensitive then you could also start lower but you may have some respiratory disturbance until it titrates up. There is some trial an error.

One caution, if you have severe sleep apnea, oxygen desaturations can be a problem. Once you find a good range you can ask your doctor for an overnight oximetry at home on your best settings to make sure your oxygen level is stable while you sleep.
Good luck

[speaker626]

Big, others,

Just realized I may still be confused re 95th percentile. Just using the available data on the unit, not the software, it shows daily "pressure" as 13.2 (give or take). It also gives me AHI, AI and HI. Is this Pressure an average (or even median) for the night or simply the highest pressure reached during the night? The info is all via the efficacy menu.

My confusion is that the original pressure on original machine (just a normal cpap) was 8 but I got zero relief after months of trying.

Does it make sense to bring up the lower number from what I set at 6 (vs the default factory 4 as it didn't feel like any air at 4) to 8? I'm used to a steady 8 anyway from original machine (this was my prescribed pressure following titration at lab). My thinking is that if the 13.2 is about the average or even the highest number reached, going from 8 to 13.2 should cause me less disturbance (mask being blown off my face) than a pressure change of 4 or 6 flying up to 13.2. And, by my logic, if the pressure change is less (lower part of window to highest) it "might" get there sooner when unit detects apnea or HI and prevent them.

In summary, using my logic, I would set the lower at 8 and the upper a couple points higher than the 13 and change, maybe 15. Does this make sense or not? I could even set lower at 9 (or more)
as with the EPR, this is also quite comfortable for me.

By the way, the HI's are the problem per the nightly data. The AI's are pretty low. I buried this part of my question on AI v HI in the wrong thread but I could find and post here if it would help. No, I can't use the software (v 3.10) because I can't find a card reader.

[Big Daddy RRT,RPSGT]

Just realized I may still be confused re 95th percentile. Just using the available data on the unit, not the software, it shows daily "pressure" as 13.2 (give or take).It also gives me AHI, AI and HI. Is this Pressure an average (or even median) for the night or simply the highest pressure reached during the night? The info is all via the efficacy menu. this is your 95th percentile

My confusion is that the original pressure on original machine (just a normal cpap) was 8 but I got zero relief after months of trying. Because you needed something more like 13 cmH2O probably

Does it make sense to bring up the lower number from what I set at 6 (vs the default factory 4 as it didn't feel like any air at 4) to 8? I'm used to a steady 8 anyway from original machine (this was my prescribed pressure following titration at lab). My thinking is that if the 13.2 is about the average or even the highest number reached, going from 8 to 13.2 should cause me less disturbance (mask being blown off my face) than a pressure change of 4 or 6 flying up to 13.2. And, by my logic, if the pressure change is less (lower part of window to highest) it "might" get there sooner when unit detects apnea or HI and prevent them. 13.2 is not your average but rather your 95th percentile..simplified meaning is that it is effective 95% of the time. Your average (median)pressure is usually lower. Your max pressure is higher. It might be good to know your max and mean pressure. Have your DME download and prints some reports for you.

In summary, using my logic, I would set the lower at 8 and the upper a couple points higher than the 13 and change, maybe 15. Does this make sense or not? I could even set lower at 9 (or more) as with the EPR, this is also quite comfortable for me.If you are pressure tolerant you might try 10-15, that is 2 above and two below your 95th percentile. If you feel like 10 is too much to start set a ramp time and pressure that is good for you like 8 for 15 minutes basically to your comfort. If you still feel poorly you could set the upper pressure to your max pressure off your printed reports. That way you have the extra pressure in reserve when you need it. There is no one way to do it. Trial and error. The main thing is stick with each change for several nights before making new changes.

By the way, the HI's are the problem per the nightly data. The AI's are pretty low. I buried this part of my question on AI v HI in the wrong thread but I could find and post here if it would help. No, I can't use the software (v 3.10) because I can't find a card reader.[/quote]You are probably having hypopneas while your machine is working it's way up to your 95th percentile pressure. It's hard to know without the reports. I hope this helps your understanding.

[speaker626]

Big D,

Great! Thank you ! That makes perfect sense. I understood it all and will be patient with changes. Don't have DME due loss of job/insurance right after titration but hopefully will have soon.

I want to add something so I can feel like am helping not just always asking for help. Not that this is of any major significance but we use in my work. The subject is different ways to define "average." Average is just that- and it's also called mean. You add up numbers and divide by how many numbers you have. Median is a bit different. You stack your numbers high to low and take the one in the middle if you have an off number of data points- that's the Median (or average of two in middle if you have an even number of data points). The reason is that this way (median) doesn't worry about the extreme numbers that might be random chance occurance or due to something unlikely to repeat. Thus, you have a better "average" of what's going on with median than the "average" you get with mean method as median method takes into account the extremes that really aren't fair as they "skew" the results. Kids will ask "but what if you have a lot of those outliers (extreme random chance occurance numbers or high inconsistance extremes). Easy- Then those all get stacked and they are then taken into account in that they have more significance the more there are; they aren't so inconsistant. Then you use examples.

Betsy is an o.k. student. She usually is a low B student in XYZ class but she is in danger of becoming a C student pretty easily. She could also do REALLY better if she'd stop smoking pot. Here's how we prove all this: Here are her scores from xyz class:

Mean: 81, 78, 83, 79, 82, 97 -the average is: (add 'em up and divide by 6) 83.3

Median: 97, 83, 82, 81, 79, 78 82 plus 81 divided by two is 81.5 This is a more accurate reflection of Betsy and it turns out the 97 was right after rehab (waste of money as she relapsed after 48 hours but she got to meet a lot of cool rock stars). Yes, if one more data point added, you would have 7 and no math to do; just take the one in the middle and that's the median. Obviously, with tons of data the differences in mean and median become far more evident. Here, with mean, we just see that she is a solid low B student , but with median, we realize she is in serious danger of becoming a C student. If we just went by her report card and not looked at all the test scores that made it up, we lose the potential to identify WHY there may be extremes in her test scores that we can correct (prevent the situation/environment that are associated with them). And we can talk the parents into sending Betsy off to a rehab again (with fewer rock stars) via objective evidence.