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KimT

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Nov 18, 2014
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PALS
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08/2015
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The Beach
I went last night. I was in bed on what the RT described as an "auto BiPAP" We tried the nose and the nose/mouth. The nose/mouth seemed more comfortable, although the plastic was pinching my face. Long story short: I didn't get to sleep. I was there from 9:30 until 3:30. He tried different settings and nothing seemed to let me breathe in my normal rhythm (which is on the slow side.) I'm primarily a nose breather but do open my mouth off and on.

This is the local place. Supposedly the pulmo is going to call me to "discuss" what was going on. I have a return to Mayo next Wednesday and one of my doctors is in Sleep Medicine. I'm glad I kept the appointment. I will take my PFT and original sleep study to see what he thinks.

Now I have bad sciatica and cramps in my glutes. Heating pad here I come.

The RT asked me if I had any medicine I could take to sleep. I took a benzo but it didn't help.

When I got home, I was out in 15 minutes and slept for 5 hours with one awakening.
 
Typical isn't it Kim!

My sleep study was a waste of time too, as I didn't register enough continuous sleep for true analysis.

Re the BiPAP: it should adapt to your rate of breathing. I notice when I've a bout of myoclonus, which makes me very agitated, my breathing noticeably quickens and the machine responds appropriately. When I slow down my breathing, the machine reacts too.
 
Don't be discouraged, Kim. RTs typically don't know how to titrate PALS with BiPAP, and most don't bother with the trigger/cycle/Ti settings that mediate how long/how slow/how deeply you breathe. There are settings that will work for you, promise.

Larry never got out of stage 2 sleep at his study (there are 5) even when he had "only" obstructive apnea, pre-ALS.
 
When I had my first study (without the BiPAP) I did OK. I agree that the RT didn't understand how to regulate the settings for me plus when I'm first in bed my breathing has always been irregular. I'm a chest breather but try to take some deep breaths to relax. I got to be a chest breather because diaphragm breathing used to send me into SVT (I thing the Vagal nerve set it off.) I have way less SVT since I gained 30 pounds (I was always very skinny until Remeron :)
 
Since insurance wouldnt pay for one in a facility,I did a home test . I have had a cpap for 5 years. My pals couldnt imagine how I could sleep with something on my face. He uses a face mask with his trilogy now and cant imagine sleeping without it!
 
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