Ventilator Downloads - Input Requested Pls.

Madalot wrote:Do I need to leave a gap between min & max ipap? I have been trying to adjust to having the minimum ipap at 17 (thus the ramp) but is it a problem to have the min & max at 17 & 18? I thought it might be and that's why I said I would use about 15 as the minimum.

I do not know. I have very little understanding of the mechanics involved with ipap minimums and maximums.
15 seems reasonable though. If you do happen to be particularly sensitive to any pressure changes then I would limit them as much as possible but obviously keep your own comfort in mind. Gotta get to sleep before you can stay sleep.

I bet someone with practical expertise will chime in and offer a better way to rationalize the ipap choice.

Pugsy wrote:

Madalot wrote:Do I need to leave a gap between min & max ipap? I have been trying to adjust to having the minimum ipap at 17 (thus the ramp) but is it a problem to have the min & max at 17 & 18? I thought it might be and that's why I said I would use about 15 as the minimum.

I do not know. I have very little understanding of the mechanics involved with ipap minimums and maximums.
15 seems reasonable though. If you do happen to be particularly sensitive to any pressure changes then I would limit them as much as possible but obviously keep your own comfort in mind. Gotta get to sleep before you can stay sleep.

I bet someone with practical expertise will chime in and offer a better way to rationalize the ipap choice.

For me, I fall asleep just fine with an ipap anywhere from 13-15 (my normal is 14). I find that 17 is too high for me to fall asleep and that's why I've set it as my minimum, but use the ramp. With these settings, the ipap with the ramp is starting at 11, which is a bit low for me to fall asleep (can't breathe easily) but it gets up fairly quickly and around 12.5, I'm falling asleep.

I've been trying to adjust to NOT waking up at 17 (thus why it's the minimum with the ramp) but obviously I'm still waking up at 17 or higher -- 19 or higher.

I feel like I'm spinning my wheels, but this seems another reasonable course -- lowering the maximum. But I would like suggestions about where to put the minimum.

I would suggest 15 ipap if you are comfortable with it. That is less variation than 13 (on the chance any variation is disrupting since it gives a smaller window).

Pugsy wrote:I would suggest 15 ipap if you are comfortable with it. That is less variation than 13 (on the chance any variation is disrupting since it gives a smaller window).

Thanks so much, Pugsy! I really appreciate this.

Unless someone else comes in and has a good argument for something different, that's what I'll do. I plan on using my pulse ox monitor as well to make sure I don't start having serious desaturations at these settings.

From my VAST experience...

While my situation is not at all similar to yours, I actually have gone through this process.

The sleep doctor had my RT set the pressure of my machine at 5 - 18. My cardiologist, and the wealth of information here, helped me dial in the best pressure.

At first, I would wake up with the machine blasting air at high pressure in my face. The problem seemed to be that in APAP the machine compensates for leaks by increasing pressure. Once the leak is removed, it takes a long time to ramp the pressure back down.

My solution was to change to CPAP. The problem was figuring out what pressure to use. I wear my mask very loose and expect some leaks as I roll over, and in reviewing leak data I find that the high leaks are transient.

Looking at my data I picked a pressure that was a little lower than my 95% pressure. I then used my oximeter to monitor for desaturations. After a few months of monitoring and tweaking, I finally settled on the lowest pressure that would prevent O2 desaturation below 90%.

During this whole precess, I recorded, but chose to ignore the airflow data. The pressure adjustments were done based only upon oxygen saturation.

Once this was done, I then looked at the airflow data and did some final adjustments in an effort to minimize my airflow based AHI number. While my airflow AHI remains elevated, I was able to nearly cut it in half. With that said my airflow AI is almost always below 1 and I can't remember the last time I recorded an oxygen desaturation below 90%.

If you want to "play" a little...

Adjust your machine maximum pressures down to a point where they are comfortable and not waking you up, the monitor your O2 levels to see what they are doing. Your airflow data may jump a little, but I would put the benefit of a restful nights sleep over machine scored airflow data.

Keep in mind that there is a lot more to sleep disorders than oxygen desaturation, and that blowing air up your nose doesn't solve all sleep disorders. It may be that increasing pressure to the point of causing you to wake up may be counter productive. At this point in your efforts, suffering through an increase in airflow scored events may be overshadowed by getting a restful nights sleep without waking up several times due to the high pressure.

As always there is the other side of the story. Your machine may be responding to some distress you are having. Limiting the pressure of the machine will limit its ability to respond. I don't know if oxygen desaturation is the best way to monitor this, but still think that it will give you a good indication of what is going on.

HoseCrusher wrote:Keep in mind that there is a lot more to sleep disorders than oxygen desaturation, and that blowing air up your nose doesn't solve all sleep disorders. It may be that increasing pressure to the point of causing you to wake up may be counter productive. At this point in your efforts, suffering through an increase in airflow scored events may be overshadowed by getting a restful nights sleep without waking up several times due to the high pressure.

As always there is the other side of the story. Your machine may be responding to some distress you are having. Limiting the pressure of the machine will limit its ability to respond. I don't know if oxygen desaturation is the best way to monitor this, but still think that it will give you a good indication of what is going on.

And this is what is got me so frustrated - nobody knows, for certain, exactly what is going on. The recent sleep study was SUPPOSED to be figuring this out, but...well, that's the past and I need to stop being pissed off about it.

My doctor is good with my dropping the maximum ipap to 18. My respiratory therapist was here a bit ago for monthly visit and I ran this by him. He agrees that I probably should have the minimum ipap around 14-15, giving the machine a little room to do something.

So, we'll try this tonight and see what happens. I can only use the tools I have (pulse ox monitor, vent downloads and how I feel) to gauge success or failure.

The last few nights have been a bit strange so I really can't be sure if the lower maximum ipap is helping at all. My instincts are saying no.

Wednesday night (first night) I don't remember. I seemed to wake up just as much.

Thursday night -- had nasty runny nose (again) so I took Nyquil to stop it. Can't use that night to base anything on.

I got a download to see if either Wednesday or Thursday nights SEEMED any different. The downloads are all looking the same to me at this point. The pulse ox from Wednesday night had a problem and showed a dip down to 73%, but I question the accuracy.

I was going to do a real test last night (that was my plan) but I was upset -- new DME still can't give me an answer about whether I own the Trilogy, whether I still am renting it or if I have the option to go either way. It's been 5weeks and I can't wrap my mind around why they can't get an answer.

Plus, they've had my Trilogy almost 8 weeks now and the email I got about it yesterday is indicating it will be at least another 2 weeks.

I was so pissed last night I told my husband to take the cart with the Trilogy, my mask and the oxygen concentrator and roll it off the front porch into the rain. Of course he refused to do that, but in the end, I refused to use it last night at all.

And yes, I am paying dearly today. I have a headache and feel awful. But I was so ticked off last night that I just could not use it. My husband usually sweet talks me into using it even if I don't want to. He didn't say ONE word last night so that should give you an idea of my frame of mind...

My...

Doesn't the air smell fresh after a rain...

HoseCrusher wrote:My...

Doesn't the air smell fresh after a rain...

LOL --

These new settings (maximum ipap 18 instead of 23) are working out okay. My oxygen levels are NOT suffering for it. I spend a good 10 - 15 percent of the night between 90 - 95, but that's fine. The reports look really good.

I am still using the Ramp (which I hate having to do) because if I don't, as soon as I start to doze off, the pressure increases and disturbs me. Last night, I wasn't falling asleep, so by the time I got to the dozing part, the Ramp was done and it was already at 15. I felt the pressure increasing and looked -- sure enough, it was around 15.8 and going up steadily.

So, I Ramped again and fell asleep before it could bug me.

But...I still woke up 4-5 times from 1am until 6:30 am. One point, my husband asked me if I was okay and said I had been moving around A LOT. I said I had just woken up so if I was moving, I was moving in my sleep.

So....

Back to the ballerina theory...

I would love to come up with a better theory, but it seems that there is a ballerina hidden inside of you and the only time you let it out is when you are trying to sleep...

OK, back to reality.

What is causing you to move around? We have explored pain and restless leg as possible causes, but that hasn't panned out. Your oxygen levels are good, so it isn't your body calling out for more oxygen. Your family isn't up and around making noises. You aren't in a hospital where they wake you up every hour to see how well your are sleeping.

Do you remember your dreams? Are you having repeating nightmares?

Thyroid and insulin levels come to mind, but I am sure you have already looked into that.

Another possible area to explore is grief. Grief comes when we experience a loss. You have experienced a loss of some of your muscle tone, and the ramifications of that may be sliding you into the grief process. While not the same magnitude as the grief from loosing a family member, it is still a loss and can trigger the grief process.

Unfortunately, the grief process is very complex.

The long and short of it is that I am running out of ideas and am grabbing at straws. Feel free to ignore all of this, but rest assured that you are in our thoughts and prayers, and I will keep looking.

HoseCrusher wrote:Back to the ballerina theory...

I would love to come up with a better theory, but it seems that there is a ballerina hidden inside of you and the only time you let it out is when you are trying to sleep...

LOL -- I'd make one ugly ballerina, that's for sure!!!

Dreams -- I frequently remember dreams, but not always. Saturday night, I woke up, mid dream, an hour after going to bed. I can't tell you NOW what it was about, but I remembered it vividly that night and into the next day.

I am almost 100% positive that there is not outside stimulous waking me up. Since I've been using the Ramp (which I still do NOT like), IF I make a point of restarting it every time I wake up (which I don't always), it DOES confirm and validate that I am, in fact, waking up anywhere from 4 or 5 (or more) times per night. Again, these are FULL awakenings, not just a light/casual waking up and turning over.

Without the ventilator, I still wake up, but not as fully as I do on it. It's more of a groggy/sleepy awakening that I barely remember.

I still an going on the premise that I am super sensitive to the pressure changes and that's what is waking me up. I also have a question that has me a bit perplexed....

Why is the machine increasing the pressure up to as much as 20 (sometimes to the old max of 23) when I've had it maxed at 18 for a while and everything seems fine? No desaturations and no significant change in the ventilator download data. I don't understand what would make the machine increase the pressure to that point several times during the night, but having it set lower isn't showing any problems. In fact, the pulse ox reports seem more stable on the lower maximum ipap (but I only have 2-3 days of it).

I just don't understand it.

I would like to try straight bipap s/t again, but I found that when I did NOT use AVAPS, I felt worse during the day. I don't fully understand that either, but the reality is I feel LESS bad using AVAPS.

I'm not going to discount the grief theory, but I'm not positive I'm onboard with it either. I am moody as hell, but if you figure that I've been on this silly machine since February 2010 and my sleep has been like this since then, it's no wonder I'm moody.

I'm getting back into the mode/mindset where I put off going to bed for as long as possible. Where I had gotten good about going to bed (to sleep) between 10 & 11, I'm irritated at the awakenings so I delay it as long as possible, sometimes up to 1:00 - 2:00am. That is way too late for me.

Blech. I think I'll go take a nap -- and yes, I will use my machine.

Madalot wrote:I still an going on the premise that I am super sensitive to the pressure changes and that's what is waking me up. I also have a question that has me a bit perplexed....

Why is the machine increasing the pressure up to as much as 20 (sometimes to the old max of 23) when I've had it maxed at 18 for a while and everything seems fine? No desaturations and no significant change in the ventilator download data. I don't understand what would make the machine increase the pressure to that point several times during the night, but having it set lower isn't showing any problems.

Just by going what you've said here, I wonder if there would be any benefit to lowering the maximum IPAP yet again. My first thought was that you would benefit the most from "straight" instead of "auto", but I'm not sure if that is possible on your machine. If not, then maybe just lowering that upper limit a little more may help some more. If you are able to minimize the pressure variances, maybe, just maybe your sleep could improve at least a little, and your daytimes may, just may, be a little "less worse".

Just another idea to think about.

I don't know why I didn't think of this earlier, but it seems your machine is suffering from an inferiority complex...

It sits there cruising along and just wants to show off a little by increasing the pressure.

Perhaps you could just drop a couple of aspirin into the humidifier tank and have a straight talk with your machine... I'm sure it realizes its just a loaner and is picking up on some hostility.

jbn3boys wrote:Just by going what you've said here, I wonder if there would be any benefit to lowering the maximum IPAP yet again. My first thought was that you would benefit the most from "straight" instead of "auto", but I'm not sure if that is possible on your machine. If not, then maybe just lowering that upper limit a little more may help some more. If you are able to minimize the pressure variances, maybe, just maybe your sleep could improve at least a little, and your daytimes may, just may, be a little "less worse".

Just another idea to think about.

This machine can be set to run as a cpap. I thought about this as well, even going so far as to think about doing straight bipap s/t (doctor and RT's INSIST I have a back up rate).

I just got up from that nap I said I was going to take -- down on the couch at 1:00. A phone call at 1:24, but down again until 4:04. How many times I woke up, I am not sure (at least 3 - maybe 4), but I can remember two dreams that I woke up from -- and each time I woke up the ipap was at maximum (or one tenth of a point below). I reset the ramp each time -- I think.

When I was asking my pulmonologist what she thought of my getting an opinion from a neurologist, her response to me was this: It may be worth getting input from the neurologist, although most of the time (at least here at [her facility]) they do not really focus on the respiratory issues which are a major part of your sleep problems.

When I relayed this to the Fellow that wanted to make the referral to a SLEEP neurologist, he came half unglued at this "insult" saying that respiratory was a part all of their training. But it sent me a message that no matter what I do, I need to keep the respiratory aspect of it (ie my disease involvement) in the forefront of my mind -- or at least that was my interpretation of her comment.

But...I pretty much got a 2.5 hour nap (1:30 - 4:04) and I am tired, shaky and feel half horrible. This is what my nights are like.

I guess I was referring to a "straight ventilator" as opposed to an "auto ventilator", whatever that would mean. I'm just concerned that the varying of your pressure is an issue for you. There are some people on "regular" cpap who do better on straight cpap and others who do better on auto cpap. I thought the same might be true for you on your ventilator. (I'm pretty clueless when it comes to ventilators, so take that with a grain of salt.)

My regular sleep doctor is actually a neurologist. I see nothing wrong with seeing a neurologist as well as a pulmonologist. At this point, I would say a fresh set of eyes would be a good thing. It can't hurt anything, that's for sure.

Here's to good sleep...for all of us!