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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.
 

susanf

Senior member
Joined
May 26, 2011
Messages
647
Reason
PALS
Diagnosis
06/2011
Country
US
State
fl
City
Palm Harbor
That's the most ridiculous thing I ever heard. What a waste of your time not to mention it wasn't an accurate study.
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Bill43,

If your neuro thinks you need a BiPAP and wants you to have one, he can prescribe and manage it himself. The main reason for the sleep study is to make sure whether or not you have other sleep issues that need to be accounted for. Plus, it keeps the insurance companies happy.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Congratulations you have seen the often talked about beach town moron. It never ceases to amaze me where these people get their certificates. Do they still make Cracker Jacks?

AL.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Do you live close to Orlando? 20 minutes of sleep isn't enough time...and I certainly didn't have leads on my throat. I hate Florida hospital, but they have a great sleep study lab. My neuro didn't want me on a cpap...and I convinced the pulmonary doc to agree and the loaners at ALSga loaned me a bipap, then I confirmed the settings Allen told me to use with him.

The neuro insisted a cpap shouldn't be used. If you can get here, you can get a real sleep study, and I can pick you up and let you wait at my place til your wife can pick you up.

Your tech was an idiot. I only slept 2 hours the first night...but that was just me, not the place. And they always do a follow up with a trial of cpap/bipap!
 

susanf

Senior member
Joined
May 26, 2011
Messages
647
Reason
PALS
Diagnosis
06/2011
Country
US
State
fl
City
Palm Harbor
When my daughter was 3 months old she had a sleeps study at Tampa Gen. They were excellent.
 

Bill43

Member
Joined
Nov 21, 2011
Messages
10
Reason
PALS
Diagnosis
04/2011
Country
US
State
Florida
City
A Small Beach Town
Thanks for the offer Notme, I'm still waiting to hear from my pulm doc, he's the one that ordered the test but the test was done by a tech who works in my neuro docs office and she's on vacation. If my pulm doc is going to be stubborn I'll visit the ALS clinic in Jacksonville this Thursday and talk with the experts.
 

Tom's Support

Distinguished member
Joined
Mar 1, 2010
Messages
199
Reason
CALS
Diagnosis
08/2000
Country
CA
State
ON
City
Leaskdale
This is why Tom will not be going to sleep camp. We got the mask (250 IS VERY PRICEY FOR A BIT OF PLASTIC) and the machines will be arriving in 6 weeks, but we get to pay for them! I would have preferred a loaner. We are going to play with the dials ourselves till we get it right. No sleep camp councellor is going to mess with us but Sunnybrook doesn't know that just yet. We want the machines first.

Good luck, I am sure you will get your air. Don't let them make you go back to camp.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
My machines were paid for by the CEP. How come you have to pay?


AL.
 
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