Bill43
Member
- Joined
- Nov 21, 2011
- Messages
- 10
- Reason
- PALS
- Diagnosis
- 04/2011
- Country
- US
- State
- Florida
- City
- A Small Beach Town
After having two appointments for an overnight sleep study cancelled because they said the "machine broke" I finally went in last Wednesday night and it turned out crappy.
The bed was a Murphy bed that folded down from a wall cabinet, one step better than a sleep sofa and maybe two steps better than an army cot. The pillow was a larger version of an airline pillow. The room was hot and humid, no air circulation and the building was two blocks from a railroad track.
The technician wired me up to 25 sensor leads, two sensor bands around my chest and abdomen, 2 sensors in each nostril and a oxygen sensor on my finger. Got into bed about 10 pm and tried to go to sleep. The tech had placed the black box that all the sensors were connected to right next to my head beside the pillow and tied most of the slack from the sensor wires into a loose knot. I have a hard time rolling over and that made it almost impossible. The lead on my adams apple (to monitor snoring) was so tight it felt like it was cutting into my skin when I inhaled. I layed there two hours and got maybe 20 minutes sleep before the first train went by. At three hours the tech came in and said the doctor had requested that I use a cpap for a couple hours and then a bipap for a couple hours.
He placed a nose mask on me and turned the machine on and told me to go back to sleep. For some reason every night my nose gets stuffy sometime during the night. It's been this way for the last few months and that night was no exception. I had a really hard time trying to breathe through my nose, especially exhaling. The tech came back in and asked what the problem was and I explained it to him. He said he saw no reason to use the bipap because the air pressure had to be set higher on it and if I couldn't breathe using a cpap I wouldn't be able to with a bipap. He said he was going to recommened that I be placed on oxygen not a bipap or cpap.
I asked if he had a full face mask so I could try the cpap machines breathing through my mouth. He said they did have one but he had already ended the study. I asked why he ended it and he said when I was asleep he only saw "one event" and that's not enough to need a cpap or bipap machine. He said most people who need cpap have as many as "60 events" an hour. I asked what he meant by "event" and he said it was when you stop breathing....apnea.
I explained to him I didn't have apnea I had ALS. I don't stop breathing I just can't get enough air in and co2 out. He repeated that all I needed was oxygen and started taking the sensors off.
By this time it's 2am and I'm a little pissed. He said I could leave if I wanted to but I couldn't. My wife drove me there and then went back home. I tried calling home but my wife takes an ambien before bed and nothing wakes her up til sunup. He said he would drive me home but I didn't even have a key to my house. I began to feel like I was intruding on this guys time, like he wanted me out of there. I said there was nothing I could do until my wife came to pick me up at the agreed upon time of 5:30am. So I spent the rest of the night in a recliner dozing in and out of sleep, listening to the trains and breathing through my mouth.
I guess this means I won't see a bipap in the immediate future after the tech makes his recommendation.
The bed was a Murphy bed that folded down from a wall cabinet, one step better than a sleep sofa and maybe two steps better than an army cot. The pillow was a larger version of an airline pillow. The room was hot and humid, no air circulation and the building was two blocks from a railroad track.
The technician wired me up to 25 sensor leads, two sensor bands around my chest and abdomen, 2 sensors in each nostril and a oxygen sensor on my finger. Got into bed about 10 pm and tried to go to sleep. The tech had placed the black box that all the sensors were connected to right next to my head beside the pillow and tied most of the slack from the sensor wires into a loose knot. I have a hard time rolling over and that made it almost impossible. The lead on my adams apple (to monitor snoring) was so tight it felt like it was cutting into my skin when I inhaled. I layed there two hours and got maybe 20 minutes sleep before the first train went by. At three hours the tech came in and said the doctor had requested that I use a cpap for a couple hours and then a bipap for a couple hours.
He placed a nose mask on me and turned the machine on and told me to go back to sleep. For some reason every night my nose gets stuffy sometime during the night. It's been this way for the last few months and that night was no exception. I had a really hard time trying to breathe through my nose, especially exhaling. The tech came back in and asked what the problem was and I explained it to him. He said he saw no reason to use the bipap because the air pressure had to be set higher on it and if I couldn't breathe using a cpap I wouldn't be able to with a bipap. He said he was going to recommened that I be placed on oxygen not a bipap or cpap.
I asked if he had a full face mask so I could try the cpap machines breathing through my mouth. He said they did have one but he had already ended the study. I asked why he ended it and he said when I was asleep he only saw "one event" and that's not enough to need a cpap or bipap machine. He said most people who need cpap have as many as "60 events" an hour. I asked what he meant by "event" and he said it was when you stop breathing....apnea.
I explained to him I didn't have apnea I had ALS. I don't stop breathing I just can't get enough air in and co2 out. He repeated that all I needed was oxygen and started taking the sensors off.
By this time it's 2am and I'm a little pissed. He said I could leave if I wanted to but I couldn't. My wife drove me there and then went back home. I tried calling home but my wife takes an ambien before bed and nothing wakes her up til sunup. He said he would drive me home but I didn't even have a key to my house. I began to feel like I was intruding on this guys time, like he wanted me out of there. I said there was nothing I could do until my wife came to pick me up at the agreed upon time of 5:30am. So I spent the rest of the night in a recliner dozing in and out of sleep, listening to the trains and breathing through my mouth.
I guess this means I won't see a bipap in the immediate future after the tech makes his recommendation.