Bipap S/T Test (No AVAPS) - Interesting

With my doctor's blessing, I turned off the AVAPS on the Trilogy last night and ran it in basic Bipap S/T Mode -- I increased the IPAP to 14. All other settings I left the same.

I don't think ONE night is enough to make a firm determination, however....

I woke up a couple times, but not as much as I have been. The pulse ox alarm never went off and the report this morning shows a low of 93%. Pretty good for me.

Since doctor okay'd this, I may leave it this way for a few days and see if the daytime fatigue improves at all.

Madalot wrote:With my doctor's blessing, I turned off the AVAPS on the Trilogy last night and ran it in basic Bipap S/T Mode -- I increased the IPAP to 14. All other settings I left the same.

I don't think ONE night is enough to make a firm determination, however....

I woke up a couple times, but not as much as I have been. The pulse ox alarm never went off and the report this morning shows a low of 93%. Pretty good for me.

Since doctor okay'd this, I may leave it this way for a few days and see if the daytime fatigue improves at all.

Well, that sure sounds promising, Maddie! You're right, one night is not enough information to reach any conclusions; but if this improved result continues for the next few nights, you're onto something! Fingers crossed that your sleep DOES continue to improve and you start to feel a little more energy during the day.

Thanks, BB. I appreciate that.

Last night's experiment resulted in something unexpected (for me) and distressing.

A couple years ago (before breathing machines) I was having SERIOUS leg pains at night, like severe muscle cramps. My doctors have me on a couple medications for it and since being on the ventilator, I have had almost no problem with leg cramps.

Last night, they came back with a vengence. Woke me up numerous times and kept me awake because of the pain.

I don't know if it's a coincidence or if AVAPS was doing something weird that alleviated this problem. My overnight pulse ox was okay, but there were movement artifacts so it's not giving me any lows to read.

I wish I knew if this was because of no AVAPS or something else, but I sure as heck don't want to go through that again tonight. I'm not sure what to do tonight now -- whether to keep doing the bipap s/t only or turn AVAPS back on.

Madalot wrote:Thanks, BB. I appreciate that.

Last night's experiment resulted in something unexpected (for me) and distressing.

A couple years ago (before breathing machines) I was having SERIOUS leg pains at night, like severe muscle cramps. My doctors have me on a couple medications for it and since being on the ventilator, I have had almost no problem with leg cramps.

Last night, they came back with a vengence. Woke me up numerous times and kept me awake because of the pain.

Oh, I'm so sorry to hear that. FWIW (and I don't know if this might apply to you, or if it's even an option), my uncle had complete kidney failure and endured dialysis for 11 years before his body finally gave out. During that time, he suffered from terrible cramps in his legs and toes. He took Quinine to alleviate the problem, and he said it worked. He bought it OTC.

I don't know if it's a coincidence or if AVAPS was doing something weird that alleviated this problem. My overnight pulse ox was okay, but there were movement artifacts so it's not giving me any lows to read.

I wish I knew if this was because of no AVAPS or something else, but I sure as heck don't want to go through that again tonight. I'm not sure what to do tonight now -- whether to keep doing the bipap s/t only or turn AVAPS back on.

I don't have any input on that, as I'm nowhere near qualified to even make a guess. There are only two nights of BiPAP to go by (one better and one worse), so it's impossible to conclude anything. If you just can't tolerate the cramping again, I'd put the ventilator back to AVAPS mode (at least until you can question the sleep doc about the possibility that the return of the leg pain is linked to the BiPAP therapy).

Whatever you decide to do tonight, I sure hope you have a better time of it. (hugs)

Most of the people I know that end up with leg cramps end up reviewing their electrolyte and mineral balance. My cardiologist uses Emergen C to keep the cramps away, and recommended it to me.

I went without AVAPS again last night to find the leg pain again, especially early this morning. I'm going to turn it back on for the next couple nights and see if it helps.

The pain is difficult to describe. It reminds me of the worst flu I ever had where the first sign of a problem was aching in my legs (I ended up in bed for a week). It's not exactly cramping, but just horrible, horrible aching.

Talking to a couple people from here, it seems that leg movements in REM sleep are not the norm??? And aside from one indication in Non-REM sleep, ALL my limb movements are in REM sleep.

Still waiting to hear from my neurologist about this, but I'll probably call his office today to push it along.

Madalot wrote:I went without AVAPS again last night to find the leg pain again, especially early this morning. I'm going to turn it back on for the next couple nights and see if it helps.

The pain is difficult to describe. It reminds me of the worst flu I ever had where the first sign of a problem was aching in my legs (I ended up in bed for a week). It's not exactly cramping, but just horrible, horrible aching.

Talking to a couple people from here, it seems that leg movements in REM sleep are not the norm??? And aside from one indication in Non-REM sleep, ALL my limb movements are in REM sleep.

Still waiting to hear from my neurologist about this, but I'll probably call his office today to push it along.

Yes, please do. Sorry to hear that sticking with the BiPAP settings hasn't produced better results. Can you tell if you experienced more or less arousals/awakenings last night? Were they what you usually experience, or were they due to the leg pain?

It's starting to sound like the lower number of awakenings during the first night on the BiPAP settings was a fluke (or, at the least, a small gain that seems to be producing even more disruption due to pain), but I hope the neurologist (or someone, anyone) can provide you with an explanation or a theory that'll make sense of it. Hang in there, Kathy.

BleepingBeauty wrote:

Madalot wrote:I went without AVAPS again last night to find the leg pain again, especially early this morning. I'm going to turn it back on for the next couple nights and see if it helps.

The pain is difficult to describe. It reminds me of the worst flu I ever had where the first sign of a problem was aching in my legs (I ended up in bed for a week). It's not exactly cramping, but just horrible, horrible aching.

Talking to a couple people from here, it seems that leg movements in REM sleep are not the norm??? And aside from one indication in Non-REM sleep, ALL my limb movements are in REM sleep.

Still waiting to hear from my neurologist about this, but I'll probably call his office today to push it along.

Yes, please do. Sorry to hear that sticking with the BiPAP settings hasn't produced better results. Can you tell if you experienced more or less arousals/awakenings last night? Were they what you usually experience, or were they due to the leg pain?

It's starting to sound like the lower number of awakenings during the first night on the BiPAP settings was a fluke (or, at the least, a small gain that seems to be producing even more disruption due to pain), but I hope the neurologist (or someone, anyone) can provide you with an explanation or a theory that'll make sense of it. Hang in there, Kathy.

Thanks BB. I appreciate that. The day got away from me with a lot going on and I never was able to make that call to the neurologist. I want to make sure I'm not leaving and I had to today. I'll call his office tomorrow.

I'm not giving up, but maybe changing my expectations. I may have to face it that this is as good as it's going to get. There may not be any answers at this point.

Madalot wrote:I'm not giving up

Good. Glad to hear that.

Madalot wrote:but maybe changing my expectations

It's a delicate balance, that. There is always the possiblity of finding things that help.

Madalot wrote:I may have to face it that this is as good as it's going to get.

There is a process to trying things. The trick may be to keep the process constructive and hopeful.

Madalot wrote:There may not be any answers at this point.

Here is an off-the-wall theory for one possible reason for the increase in leg discomfort:

It may be that on nights when your sleep is more restful that you have less movement for longer periods of time during the night, so you may need to schedule some awakenings in order to change positions, as counter-intuitive as that might sound. (A night of fragmented sleep is a bigger problem than having a few awakenings.) Less movement can sometimes mean better sleep but worse circulation with fewer position changes for some patients. Adjustments in therapy can mean changes in how the body handles fluids, and that can take a while for the body to adjust to. In the meantime, if you start sleeping more soundly with one form of treatment compared to another, you may need to schedule a few awakenings in order to change positions during the night a little more often if that helps circulation.

That is little more than a guess, so file it as such.

jnk wrote:Here is an off-the-wall theory for one possible reason for the increase in leg discomfort:

It may be that on nights when your sleep is more restful that you have less movement for longer periods of time during the night, so you may need to schedule some awakenings in order to change positions, as counter-intuitive as that might sound. (A night of fragmented sleep is a bigger problem than having a few awakenings.) Less movement can sometimes mean better sleep but worse circulation with fewer position changes for some patients. Adjustments in therapy can mean changes in how the body handles fluids, and that can take a while for the body to adjust to. In the meantime, if you start sleeping more soundly with one form of treatment compared to another, you may need to schedule a few awakenings in order to change positions during the night a little more often if that helps circulation.

That is little more than a guess, so file it as such.

Thank you, my friend. I think this is a sound theory and for whatever reason, using AVAPS tends to wake me up more, and in doing so, makes me move which helps with the leg pain. I turned AVAPS back on last night and what do you know -- no leg aching.

I've started a new thread "Acceptance" which kind of says where I am...and it's good.

Not a good idea to start taking Quinine:

"Quinine should not be used to treat or prevent nighttime leg cramps. Quinine has not been shown to be effective for this purpose, and may cause serious or life-threatening side effects, including severe bleeding problems, kidney damage, irregular heartbeat, and severe allergic reactions."

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000648/