11 Years and almost no Improvement

[sephiro499]

Check my profile: joined 7-2008. I didn't post because only until recently did I even know you could 'read' the machine data on a pc. I kept going back to the Dr; I believe(d) in the system. While I've got an appointment early next year I don't have my hopes up. After reading several books and listening to Dr. Krakows insomnia study. Where he took people suffering from insomnia (some for a decade) -without OSA- and put them on auto Bipap or ASV and saw great results. Then I read another book from a Dr where you can have terrible sleep disordered breathing and have treated OSA, at the same time!

Eventually I realized that whatever was going on with me wasn't being reflected in 'the numbers'. So I started looking into how I could acquire my own data.

I know in the UARS/RERA is sort of a big grey area without the hard and fast rules of either 'stop breathing for ten seconds because of obstruction'.

According to this youtube with Dr Krakow https://www.youtube.com/watch?v=qHuKNfc8Pow The ASV/Auto Bipap basically 'smooths the curve' right? I know that just doing 'curve smoothing' might not have the specificity or be indicative of anything on it's own. Hence the grey area around dx and tx? (Again please correct me if I am wrong).

My numbers are 'always great'. I feel and look terrible. I'm tired but it's more a feeling of not feeling rested. I know that not only are sleep studies subject to different scoring criteria etc. Some (most?) would say that RERAs aren't clinically relevant and won't score them anyway. So your 'numbers can look great' but you can still have fragmented sleep and terrible sleep quality. Like I can't get through the day with Ritalin. Provigil just doesn't cut it. Been on Ritalin for 2 years.

When I was first put on cpap I would wake up constantly and have to pee 2,3, sometimes 4 times per night. Yet nighttime urination is a symptom of sleep apnea! My dr switched me to an auto; I didn't feel any better. I recently bought a Vauto and wish I know about the Resmed iVaps because I would have bought that instead. I seriously doubt my dr would even prescribe me an autobilevel and sure as hell would not give me an ASV since I don't have COPD or similar.

I'll be happy to post my oscar charts but they all 'look fine'. What I mainly want an opinion on is my flow curve. I've got data going back 10+ years because the OG respironics cpap is in the basement. Please advise me and I'll provide whatever data I can find.

Have had 3 sleep studies and an MSLT. But my last study has been over 3 years so that is on my list to update when I see the Dr. Was first titrated at 12 and then 14.

[zonker]

I'll be happy to post my oscar charts but they all 'look fine'. What I mainly want an opinion on is my flow curve. I've got data going back 10+ years because the OG respironics cpap is in the basement. Please advise me and I'll provide whatever data I can find.

i don't mean this in an offhand manner, but what do you mean by "they all 'look fine'"? what does this mean to you? i've found people in the past say it's all good, then post something 3.2 ahi or something.

here is basically how the experts here want the charts to look-

wiki/index.php/Oscar:organize

good luck!

oh and they'll prolly want them highlighted in some manner, but please start with the organization indicated in the link.

[palerider]

When I was first put on cpap I would wake up constantly and have to pee 2,3, sometimes 4 times per night. Yet nighttime urination is a symptom of sleep apnea!

Just because you're "on cpap" doesn't mean it's working. Similarly to just because you're wearing glasses doesn't mean that you can see... if they're the wrong prescription, you still won't be able to see.

I recently bought a Vauto and wish I know about the Resmed iVaps because I would have bought that instead.

Ugh, I wouldn't want to have to sleep with an iVAPS if I didn't have to. The VAuto is the best machine for people that don't have central apnea or lung conditions.

I seriously doubt my dr would even prescribe me an autobilevel

But, you already have one.... I thought you said.

and sure as hell would not give me an ASV since I don't have COPD or similar.

ASVs aren't for people with COPD. they need an iVAPS or a S mode with different settings from normal folks.

I'll be happy to post my oscar charts but they all 'look fine'.

post a couple anyway.

What I mainly want an opinion on is my flow curve.

Why? Again, post charts.

I've got data going back 10+ years because the OG respironics cpap is in the basement. Please advise me and I'll provide whatever data I can find.

See above, data from 10 years ago is pretty much useless, we can't go back and change what was happening to you 10 years ago.

Have had 3 sleep studies and an MSLT. But my last study has been over 3 years so that is on my list to update when I see the Dr. Was first titrated at 12 and then 14.

Well, yeah, if the first three didn't fix things, maybe the fourth, fifth, or tenth will.

[sephiro499]

I'll be happy to post my oscar charts but they all 'look fine'. What I mainly want an opinion on is my flow curve. I've got data going back 10+ years because the OG respironics cpap is in the basement. Please advise me and I'll provide whatever data I can find.

i don't mean this in an offhand manner, but what do you mean by "they all 'look fine'"? what does this mean to you? i've found people in the past say it's all good, then post something 3.2 ahi or something.

Staff prints out a summary from Encoreviewer. Dr looks at summary and says "your numbers are great". I bought the vauto because someone on Reddit suggested it. I followed the Resmed titration guide available online. The vauto didn't come with an SD card so no data. Will have an SD card by end of the week.

[palerider]

Your numbers are fine... but, there's sometimes... maybe even often, more to it than just the numbers.... specifically for you, your flow rate is pretty variable, leading me to think there's room for improvement, ... I want to see what the VAuto does.

I'd *guess* a decent starting point would be minepap 12, PS 4, and maxIPAP 25.

[sephiro499]

Your numbers are fine... but, there's sometimes... maybe even often, more to it than just the numbers.... specifically for you, your flow rate is pretty variable, leading me to think there's room for improvement, ... I want to see what the VAuto does.

I'd *guess* a decent starting point would be minepap 12, PS 4, and maxIPAP 25.

Was reading my sleep studies and wanted to share the information.

First sleep study was a split night but couldn't because efficiency was at 50%. Sleep time was 3.5hrs. But all of my Apneas were central. 100 Hypopneas, 51 RERAs. Total Res Events 156.

Second study 4.5hrs asleep. Went from 4-11cm. But I spent 2hrs on 5 then 2hrs on 9. Only spent 6 minutes in 10 and 3 in 11.

Third study slept 2hrs. 32mins N1, 85mins N2, 5mins N3, 0mins REM. I spent 0 min in REM?! Titrated 12-16. Yet I only had 1 RERA on 12cm and 0 other events on any other pressure.

Is it fair to say I may be overtitrated?

[palerider]

Your numbers are fine... but, there's sometimes... maybe even often, more to it than just the numbers.... specifically for you, your flow rate is pretty variable, leading me to think there's room for improvement, ... I want to see what the VAuto does.

I'd *guess* a decent starting point would be minepap 12, PS 4, and maxIPAP 25.

Was reading my sleep studies and wanted to share the information.

First sleep study was a split night but couldn't because efficiency was at 50%. Sleep time was 3.5hrs. But all of my Apneas were central. 100 Hypopneas, 51 RERAs. Total Res Events 156.

Second study 4.5hrs asleep. Went from 4-11cm. But I spent 2hrs on 5 then 2hrs on 9. Only spent 6 minutes in 10 and 3 in 11.

Third study slept 2hrs. 32mins N1, 85mins N2, 5mins N3, 0mins REM. I spent 0 min in REM?! Titrated 12-16. Yet I only had 1 RERA on 12cm and 0 other events on any other pressure.

Is it fair to say I may be overtitrated?

"titrated" means, effectively, 'measured'.. so, no.

Also, having too much pressure isn't likely to cause bad, uneven breathing like that. in a small percentage, pressure, even low pressure, can cause emergent central apnea, but your central apnea is completely insignificant at this point.

You can use any old SD card in the VAuto, btw.

[sephiro499]

Your numbers are fine... but, there's sometimes... maybe even often, more to it than just the numbers.... specifically for you, your flow rate is pretty variable, leading me to think there's room for improvement, ... I want to see what the VAuto does.

I'd *guess* a decent starting point would be minepap 12, PS 4, and maxIPAP 25.

Was reading my sleep studies and wanted to share the information.

First sleep study was a split night but couldn't because efficiency was at 50%. Sleep time was 3.5hrs. But all of my Apneas were central. 100 Hypopneas, 51 RERAs. Total Res Events 156.

Second study 4.5hrs asleep. Went from 4-11cm. But I spent 2hrs on 5 then 2hrs on 9. Only spent 6 minutes in 10 and 3 in 11.

Third study slept 2hrs. 32mins N1, 85mins N2, 5mins N3, 0mins REM. I spent 0 min in REM?! Titrated 12-16. Yet I only had 1 RERA on 12cm and 0 other events on any other pressure.

Is it fair to say I may be overtitrated?

"titrated" means, effectively, 'measured'.. so, no.

Also, having too much pressure isn't likely to cause bad, uneven breathing like that. in a small percentage, pressure, even low pressure, can cause emergent central apnea, but your central apnea is completely insignificant at this point.

You can use any old SD card in the VAuto, btw.

Ok I appreciate your analysis. I'm going to backup the save data and take the SD card out of my 3ds game console. I know I'm getting a new one in 2 days, so I'll be able to capture data tonight!

[zonker]

Ok I appreciate your analysis. I'm going to backup the save data and take the SD card out of my 3ds game console. I know I'm getting a new one in 2 days, so I'll be able to capture data tonight!

so, santa knows you've been good?

[palerider]

Your numbers are fine... but, there's sometimes... maybe even often, more to it than just the numbers.... specifically for you, your flow rate is pretty variable, leading me to think there's room for improvement, ... I want to see what the VAuto does.

I'd *guess* a decent starting point would be minepap 12, PS 4, and maxIPAP 25.

Was reading my sleep studies and wanted to share the information.

First sleep study was a split night but couldn't because efficiency was at 50%. Sleep time was 3.5hrs. But all of my Apneas were central. 100 Hypopneas, 51 RERAs. Total Res Events 156.

Second study 4.5hrs asleep. Went from 4-11cm. But I spent 2hrs on 5 then 2hrs on 9. Only spent 6 minutes in 10 and 3 in 11.

Third study slept 2hrs. 32mins N1, 85mins N2, 5mins N3, 0mins REM. I spent 0 min in REM?! Titrated 12-16. Yet I only had 1 RERA on 12cm and 0 other events on any other pressure.

Is it fair to say I may be overtitrated?

"titrated" means, effectively, 'measured'.. so, no.

Also, having too much pressure isn't likely to cause bad, uneven breathing like that. in a small percentage, pressure, even low pressure, can cause emergent central apnea, but your central apnea is completely insignificant at this point.

You can use any old SD card in the VAuto, btw.

Ok I appreciate your analysis. I'm going to backup the save data and take the SD card out of my 3ds game console. I know I'm getting a new one in 2 days, so I'll be able to capture data tonight!

If there's room on the SD card, the VAuto should just write what it needs, and not mess with your 3ds data.

[sephiro499]

I really struggled with leaks last night. Swapped my pillows to a nasal mask then back agian. Was so tired I took a nap at 10.45 slept some then woke up for a bit then went back to sleep. My mouth was really dry this morning. Maybe opening my mouth? Will do mouth taping tonight.

[palerider]

I don't think I've ever seen a flatter VAuto trace... for tonight, try dropping the minepap down by 1.

On your Oscar chart, do a right click on the y axis for the leaks chart and turn on the dotted line at 24lpm. (that's what the leaks should be under)... it makes a little more sense of the chart and what's "ok" leak and what's "too much".

[sephiro499]

Only Santa can fix these leaks.... I use a swift FX nasal pillows. They fit ok it seems until I fall asleep and my upper lip (which it rests against) relaxes. I have other masks but it seems like I'm either never able to fit them properly or they just don't 'work' for me.

I think part of the problem is the 'climate line?' on this new Resmed machine is less flexible than the one from my Respironics machine. I've also noticed the climateline is thinner? The resmed line is a right angle. Can I use a straight tube with it?

Merry Christmas Everyone

[palerider]

Only Santa can fix these leaks.... I use a swift FX nasal pillows. They fit ok it seems until I fall asleep and my upper lip (which it rests against) relaxes. I have other masks but it seems like I'm either never able to fit them properly or they just don't 'work' for me.

I think part of the problem is the 'climate line?' on this new Resmed machine is less flexible than the one from my Respironics machine. I've also noticed the climateline is thinner? The resmed line is a right angle. Can I use a straight tube with it?

Merry Christmas Everyone

Yes, you can use a plain tube, you can also toss your climateline into the dryer for a minute up to a minute and a half.. (possibly two depending on how hot your dryer gets, how fast... check the hose after a minute and every 15-30 seconds afterwards, and take it out when it looses it's stiffness.

If you use a plain tube, be sure to set the tube type on the machine, otherwise your pressures will be way off.

If it's as you think, your 'upper lip relaxing', then fit the mask with your face (and lip) relaxed.

[sephiro499]

Tonight I will try small pillows instead of medium. I found a very informative fitment guide by Resmed (swift fx nasal pillows) on youtube; far better than the 4 image pictogram I was previously able to find. Unfortunately I can not fit the headgear like the video but I came close.

I have a very long narrow face and was excited to try the p30i. It isn't big enough and they don't make anything bigger than standard (for the headgear). I hope the medium dreamwear headgear will fit when I receive it.

Half way through the night I will check the SD card so as to intervene mid-night to try to stop any leaks.