accrn's therapy thread

[accrn]

I am still trying to understand the SleepyHead data.
A little background: I was diagnosed with sleep apnea about two months ago and started fixed level BiPAP shortly after. Initially, my pressures were 19/15, but I couldn't tolerate that. I was getting bubbles of air coming out of the corners of my eyes and it would blow my mouth open in spite of my best efforts. So, my "sleep doctor" lowered the pressures to 15/11. I have been able to tolerate that better. Also, initially I was told that I would only be able to use a FFM since my mouth fell open during the sleep study. I seem to have a very low tolerance to leaks, and slight leak in the FFM wakes me up. I tried a liner, but the leaks still woke me up. My "numbers" looked great when I tried to report that I was having problems, so my doctor said to just keep trying. I suspect that my numbers looked great because I was never able to get really good, deep sleep. So, I started trying different masks on my own. I tried the following FFM masks (DreamWear, Amara View, Simplus, Comfort Gel, AirTouch F20, Quattro, and F30) I've had the best luck with the F30, although any slight leak with it will still wake me up. My husband uses BiPAP also and he was able to train himself to keep his mouth shut to use a nasal mask (N20). So, I thought maybe I could do the same. I tried the P10 and I LOVE it. I can sleep the whole night and wake up feeling like I've actually slept. Instead of leaky masks waking me up, it's just my usual back pain that wakes me when I use it. The problem is, that my doctor keeps telling me that I cannot trust the AHI I'm seeing because he thinks I'm opening my mouth in my sleep and not getting appropriate therapy. I don't know what he is seeing in my data that would make him think that (I've asked and he said there was no way I could train myself to keep my mouth shut in my sleep since it was "so severe" in my study). I suspect that I was opening my mouth when I was untreated because I was gasping for air! He keeps telling me to go back to the FFM where my data looked better. This makes me second guess what I thought was working...
So, I was hoping someone could take a look at my data while using the P10 and see if it supports my doctor's conclusion.
I don't take any medications.

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[Julie]

Looks ok, but I'd raise your min. pressure by at least 1-2 cms and see if your AHI looks any better (and/or if you sleep better - 6 is quite low). Raising pressure can tend to exacerbate leaks, but your leak rate looks excellent actually. Your pressures don't seem adequate to deal with events - they want to go higher as you can see from the graph. Leave the max pressure high though - at 20 or something over 15 anyhow, as it isn't the one that counts re getting enough pressure to stop apneas, the min. one does that. Doctors often (very often unfortunately) don't understand how the machines really work and assume any min. pressure on an auto machine will stop any events no matter how high they are - but it doesn't always work as it takes time for pressure to rise high enough depending on the event.

[accrn]

Looks ok, but I'd raise your min. pressure by at least 1-2 cms and see if your AHI looks any better (and/or if you sleep better - 6 is quite low). Raising pressure can tend to exacerbate leaks, but you'll need to keep trying to fix those otherwise because your pressures don't seem to be adequate to dealing with events - they want to go higher as you can see from the graph. Leave the max pressure high though - at 20 or something over 15 anyhow, as it isn't the one that counts re getting enough pressure to stop apneas, the min. one does that.

6 is my starting ramp pressure. My lower therapy pressure is 11. I am told (from Pugsy on here, thanks Pugsy!) that I have a machine capable of auto settings, but mine are fixed. I cannot make any changes right now because they just change them back remotely. I can ask for the changes to be made.... So, you think my pressure should be 15/13?

Thank you so much for taking a look at this!

[Julie]

No - In fact I personally would not be using the ramp feature at all - for any length of time or setting - just let the machine go to the scripted setting (11) unless you find it very difficult to start there and need a lower 'blast' of air when starting out. Even if you can't change pressure settings, I hope you can disable the ramp without them being difficult. What is your max setting?

[accrn]

No - In fact I personally would not be using the ramp feature at all - for any length of time or setting - just let the machine go to the scripted setting (11) unless you find it very difficult to start there and need a lower 'blast' of air when starting out. Even if you can't change pressure settings, I hope you can disable the ramp without them being difficult. What is your max setting?

Why is ramp bad?
My BiPAP pressures are IPAP 15, EPAP 11.

[Pugsy]

Some people don't understand ramp or someone's need for it since they don't need it. Best to just smile and ignore those people if you like it and/or need it.

Trust your AHI because if you were mouth breathing enough to impact the machine's ability to record events...it would show up on your leak graph.

Leak is leak no matter where it comes from and will show up if it happens.
I see no evidence of any excess leak on your leak graph. It's probably a prettier leak graph than mine.
Your doctor apparently doesn't understand the machine's reported leak numbers. Pretty much all that leak line you see is the mask's expected/intentional leak and at your pressures...quite normal and what we would expect to see.
I would also just smile and ignore him also.

If you are sleeping good...feeling good in general...I wouldn't change a thing except maybe go to auto mode so I could get FL flagging turned on (it's off right now in fixed mode) and maybe let the machine have a little room to roam.....but it's not urgent that you make any changes.

Trust your machine...it's accurate and trust how you feel. Your body is your best judge....if things aren't working well...your body will let you know.

[accrn]

Some people don't understand ramp or someone's need for it since they don't need it. Best to just smile and ignore those people if you like it and/or need it.

Trust your AHI because if you were mouth breathing enough to impact the machine's ability to record events...it would show up on your leak graph.

Leak is leak no matter where it comes from and will show up if it happens.
I see no evidence of any excess leak on your leak graph. It's probably a prettier leak graph than mine.
Your doctor apparently doesn't understand the machine's reported leak numbers. Pretty much all that leak line you see is the mask's expected/intentional leak and at your pressures...quite normal and what we would expect to see.
I would also just smile and ignore him also.

If you are sleeping good...feeling good in general...I wouldn't change a thing except maybe go to auto mode so I could get FL flagging turned on (it's off right now in fixed mode) and maybe let the machine have a little room to roam.....but it's not urgent that you make any changes.

Trust your machine...it's accurate and trust how you feel. Your body is your best judge....if things aren't working well...your body will let you know.

Pugsy, thank you SO MUCH. Intuitively, I knew you were right... That how I feel is a better judge than the numbers my doctor seems to put so much stock in. My husband told me to just tell the doc that I was using whatever mask he thinks I need and then just do what actually works for me. LOL. I can certainly see how people get discouraged and quit. It seems like so many doctors don't have a very good grasp of the therapy they're trying to prescribe!

[accrn]

I am also looking at purchasing a machine out of pocket (AirSense 10 for her) with income tax refund (providing we eventually have a working gov't again soon). And once I have my own machine I can explore auto mode. I know I've said it before, but once again, thank you so much for your expertise. If it wasn't for this forum, I would still be failing.

[Jas_williams]

You prob find that your machine keeps reverting as your settings are written to the SD card not the DME/DR resetting them for you. Get a new SD card and insert it in the machine (Then keep your old one for the DME) then you can modify your settings using the clinical manual/our advice

[Julie]

The ramp is not 'bad' at all, but if your pressure setting's low (yours is actually medium), and you've set it to take e.g. 35 mins to ramp to your min. setting of whatever (11), you're not getting fully treated until it reaches the min. Unfortunately, Pugsy sometimes finds it necessary to disagree with almost anything I say, so you might want to keep that in mind for future - e.g. because she lives in a dry area, she likes a lot of added humidity, but while when I suggest to someone with issues of a high humidity setting (i.e. having congestion, cold symptoms) that they might want to consider local conditions (Seattle, NJ vs Ariz, Colo) and TRY a lower setting to see IF it helps, Pugsy continues to write that I TOLD the person to turn off the humidity no matter what... which has never been the case, so... draw your own conclusions. Sorry to be part of a snit fest, but it does get tiring to keep being denigrated unnecessarily. Other people do have opinions and experiences after all.

[accrn]

You prob find that your machine keeps reverting as your settings are written to the SD card not the DME/DR resetting them for you. Get a new SD card and insert it in the machine (Then keep your old one for the DME) then you can modify your settings using the clinical manual/our advice

Thank you for that suggestion, but they actually are changing them remotely. I am kind of stuck right now since my insurance is partially paying for the machine. I am hoping to purchase my own soon and then I can "monkey" with my settings all I need to! LOL.

[accrn]

The ramp is not 'bad' at all, but if your pressure setting's low (yours is actually medium), and you've set it to take e.g. 35 mins to ramp to your min. setting of whatever (11), you're not getting fully treated until it reaches the min. Unfortunately, Pugsy sometimes finds it necessary to disagree with almost anything I say, so you might want to keep that in mind for future - e.g. because she lives in a dry area, she likes a lot of added humidity, but while when I suggest to someone with issues of a high humidity setting (i.e. having congestion, cold symptoms) that they might want to consider local conditions (Seattle, NJ vs Ariz, Colo) and TRY a lower setting to see IF it helps, Pugsy continues to write that I TOLD the person to turn off the humidity no matter what... which has never been the case, so... draw your own conclusions. Sorry to be part of a snit fest, but it does get tiring to keep being denigrated unnecessarily. Other people do have opinions and experiences after all.

Thank you for the suggestion. I can understand what you are saying. My ramp is set for 20 minutes and it usually reaches full pressure before I go to sleep. I just find that "easing" into the full pressure is more comfortable for me. I am REALLY new to all of this, and I am never sure if there are elements I'm missing in my understanding of all of this.

[Pugsy]

Unfortunately, Pugsy sometimes finds it necessary to disagree with almost anything I say,

Only when the information is incomplete or incorrect. Most of the time it is just incomplete and all I do it expand the explanation a bit to be more comprehensive...but you think that means I disagree with you. I am not disagreeing ....just adding further details that I feel might be helpful to someone.

you're not getting fully treated until it reaches the min.

You say the above quite often but you are incorrect when the person is using a Respironics machine (which is what the OP is using here).
If you understood the minor ways these machines respond you would know that Respironics will suspend the ramp if needed when the situation allows (some settings) and is needed IF the person falls asleep and the airway starts to close up before ramp time has ended.
Now it is true of ResMed machines UNLESS they are using the AutoRamp thing and if they are using the AutoRamp feature even the ResMed machines will suspend the ramp and go directly to the business of increasing the pressure if needed.
With the DreamStation...even in fixed mode the ramp can be suspended to address events if need be and the machine can do it.

You mention it like it is the gospel for ALL mentions and it simply isn't. It's incomplete information that is potentially inaccurate depending on the settings and the machine being used.

Respironics has ALWAYS suspended ramp in auto mode if apnea events start to happen during ramp...now they can do it in fixed mode also. My old M Series would do it.

I can't help it if you get your panties all in a wad just because I add information that I might think is useful.
You get to say your opinion and thoughts...I have the same right and I make special effort to avoid personally "confronting" you because I know you take offense so easily. That's your problem though...not mine. You read way more into what I say than I ever intend....

Point out one thing that I was was inaccurate...you won't find it...and if anything I over explain stuff so not incomplete either.
Point out where I have personally attacked you or what you said and

denigrated unnecessarily

As for the "some people don't understand ramp".....you obviously don't. Simple fact of life or you wouldn't keep repeating that gospel about no one gets treated in ramp....that is simply not true now with the machines being used now.

[Gryphon]

You could also look at turning off the modem for a while... then you can go in and setup any pressure changes you would like to try... The machine will keep recording the needed info that "insurance wants" and as far as the DME or Doctors office trying to remote back into your machine to change them back... well unless they break into your house they're not going to be able to do squat.

It's worth a try if you want to try higher pressures etc...

Best of luck.

Gryphon

[Dog Slobber]

I am also looking at purchasing a machine out of pocket (AirSense 10 for her) with income tax refund (providing we eventually have a working gov't again soon). And once I have my own machine I can explore auto mode.

Hi accrn,

I use the AirSense 10 for Her and I really like the the Auto Ramp feature.

It seems to be pretty accurate, every time I look at a nights data I can see when ramp is on, switches off and it seems to line up fairly well when I believe I fell asleep. And if after 30 minutes it hasn't detected sleep onset it will ramp to proper APAP mode.

For competitive purposes my settings are:
Ramp: Auto
Ramp: 8 cm
APAP: 9.6 - 12 cm
EPR: on (3 cm)

What I like about ResMeds Auto Ramp:

• Seems to me fairly accurate
• I can easily tell when I fell asleep
• If I awaken during the night, I often turn the machine off, then on again. This creates a wake up marker on my sleepyhead graphs, and the Auto Ramp lets me know when I'm sleeping again.
  While in Auto Ramp, I don't get flagged with SWJ.

My ramp pressure, 8cm, is fairly close to my minimum pressure 9.6 and typical pressure 11. My only suggestion is to try to get to a point where your ramp pressure isn't to far away from your typical pressure. This way if it detects you need more pressure while in ramp, it doesn't have as far to go to meet your needs.