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MVFinVA

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My PALS was diagnosed in May 2017. He has ALS/FTD, feeding tube placed in May with continuous feed, Bipap starting in May at night, is all upper body and can still walk but will assistance. When he received the bipap he immediately adapted to it and slept twelve hours the first night. In fact he fell asleep ten minutes after it was put on. He now asks for it during the day, usually the late afternoon. During the last month he has gotten VERY restless when he goes to bed at 10pm. He says he is tired, but he moves his legs around a lot, asks to get up to go to the bathroom at least once an hour and doesn't settle down into a real sleep until between 1 and 2 am. I take him to the bathroom at 7am, adjust his bed to an angle and hook him up to the feeding pump. He immediately falls into a deep sleep and sleeps until about 11:30-noon.. He may ask to go to the bathroom about 10am. It doesn't matter if I get him up earlier in the day. Saturday I got him up at 9am because our house was being re-roofed, noisy! He was still very restless that night.

I am wondering if the bipap settings need to be adjusted. He can't tell me how it feels to him because of the FTD. I have noticed that after a trip to the bathroom his breathing is very rapid when he is back on the bipap. We have a clinic visit in two weeks and they will test his breathing, but I was wondering if there is anything I should ask. We take the bipap to every appointment and they download the data and adjust the machine. So far his breathing was been the same since May and there have been no adjustments. They have been very happy with the data so far.

Or could there be something else causing the restlessness? Any advice would be appreciated.

Mary
 

lgelb

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If his breathing is more rapid when he is taken off the BiPAP, I would start leaving it on (is it more rapid or different at the point you take it off or only when you turn it back on?). Assuming he really needs it during sleep, it gets to be a bigger and bigger adjustment to come out of sleep and switch to a waking pattern, if that made sense. Does the same thing happen if he wakes up in the morning -- can you try the same thing without the trip to the bathroom? And that would make sense to try in clinic as well.

Also, the next time it happens, note the time and ask the clinic to look at that data in that light. What machine does he have? There is a free app that can help you decipher things. Is the machine set to show you data while the machine is going? If not I can help you set that up.

The restlessness could be if the settings are not helping him ease into deep sleep quickly enough, yes -- which could require adjustment in either direction. Again, watching the screen can help you see which way to adjust.

Best,
Laurie
 

MVFinVA

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When he gets back from the trip to the bathroom his breathing is more rapid before I hook him up to the bipap. After the bipap is on it takes a minute or so for his breathing to adjust to a slower pace.

His breathing is more rapid when he is off the bipap at rest too. He asks for it now during the day and is on it from early/mid afternoon through the night. He sits up in an adjustable bed during the day, or a recliner. We have noticed he slides down in the recliner, intentionally and not, and that makes it harder for him to breath. He also prefers the bed so we are generally defaulting to the bed unless he asks for the recliner.

He wants the bed flat to sleep. He likes to sleep on his side. Could the lowering of the bed at bedtime also be making his breathing more difficult?

After I take him to the bathroom in the morning, adjust the bed up and connecting the pump he goes immediately back to sleep. It is the period from getting in bed (10-11) and 1:30-2 where he is restless. He will usually go to the bathroom between 1 and 2 and then fall into a deep sleep.

It is just such a contrast from when he first got the bipap. Then he would fall asleep 10-15 minutes after putting it on.

His machine is the Philips Respironics Dream Station. I know I can look at data when it is going, but the only thing I really check or sort of understand is the leak rate. Since we determined the nasal pillows work for him leaking hasn't been a problem.
 

lgelb

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I think there at least two things in play. His breathing gets faster without the BiPAP because he needs to be on it. He's not getting enough air without it.

And his restlessness getting in bed sounds different than his demeanor throughout the day, so I think your comment about the flat bed is on point. That makes it harder to breathe even on his side. Have you tried gradually over time making the bed less flat so he can get used to it? Normally at least a 10% head angle works better, and the lower part of the bed can be adjusted accordingly to support his side sleeping, with foam blocks if needed.

Also, try to look at the screen when he is sleeping and take a picture of the settings (1) and data (2) if you can.
 

MVFinVA

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Bipap 1.jpg

Bipap 2.jpg

These are pictures of the screens during the day. Are these the correct screens?

Mary
 

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Just throwing it out there - is it possible it is restless leg syndrome?
 

MVFinVA

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Thanks Tille, but I don't think so. I was just speaking to our daytime caregiver and she agrees with me that he is also more confused during the day:( So whatever it is, we are in the middle of changes again. It feels like just as we adjust, new changes come along. This is SO STINKING HARD!!!!! I know you understand the pain of losing your PALS to FTD before the ALS.
 

lgelb

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His RR (30) is too high with a low VTE so settings definitely need work. I'll PM you.
 
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