FVC and Sleep issues

[codyclan]

My husband is bulbar onset. At the last clinic visit his FVC was 58%, however, he is feeling pretty good and is not exhibiting many symptoms of breathing issues so the doc did not think we needed to look at a bipap at this time. He said because his mouth and lip muscles are so weak, the numbers may be depressed because he does not have a good seal on the mouth piece. Recently, I have noticed that when he sleeps there is a clicking noise, not snoring per se, but a significant loud, rhythmic click, that corresponds with his breathing rate and seems from his throat area, so I am wondering if a night time bipap is necessary. He sleeps all night and generally sleeps on his side. I am also wondering if it is time to get extra pillows or have him prop up a bit when sleeping. He is somewhat resistant to changing his routine to accommodate progression--tends to be reactive not proactive. Anybody have any advice to try before the next clinic visit?

 

[MaxEidswick]

>He is somewhat resistant to changing his routine to accommodate progression--tends to be reactive not proactive.

I can relate

 

[GregK]

I would suggest you request a sleep study where your husband wears an O2 sensor during the night.
This will show if his O2 sat is dropping.

Also an arterial blood gas can show if he's retaining CO2.

 

[MaxEidswick]

>I would suggest you request a sleep study where your husband wears an O2 sensor during the night.

Ditto that! and get a pic of him wired up

.

 

[codyclan]

Oh that looks comfy and cozy, Max! We will ask about a sleep study!

Tracy

 

[affected]

CLASSIC MAX!

I have wondered how anyone sleeps at all in these sleep studies!

A friend PALS here locally went for one recently and he wanted to go pee FIFTEEN times during the night. After they nearly dropped that box into the toilet the staff made him use a urinal which impressed his wife enormously as he has always refused one lol

 

[Nuts]

Yes, ask for the sleep study. We were able to bypass it as hubby had been diagnosed with slep apnea in the past AND I recorded the sounds he was making. Two surgerys and weight loss had cleared up the sleep apnea, but ALS brought it back. No one had suggested using the Trilogy before that because his FVC (sitting) was good, but now I keep hearing how it's a great idea to use it at night and that doing so will probably give his diaphram an extra year. Now the only clicking sound I hear his the Trilogy ramping up when it senses that he's not breathing. BTW--mine had no problem breathing in the morning, but woke up groggy and bleary eyed---until he started using the machine.

 

[GregK]

Geez, mine was a simple clip on the finger hooked to a small box...

Anyhow, ask for the blood gas too.

 

[Vincent]

I just started using a bipap overnight this week. What a treat waking up without a headache and being able to read without words dancing on the page. Mine was ordered when my FVC dropped to 54%. I also don't creep my wife out with weird breathing patterns. Everybody wins.......
Vincent

 

[azgirl]

My daytime FVC is stil at 88%, but the sleep study showed breathing at dangerous levels. I had no symptoms that I had realized.

On bipap now for 2 months at night and notice more energy. My doc is having all patients do sleep study early

 

[MaxEidswick]

>Geez, mine was a simple clip on the finger hooked to a small box...

tx vs co, sure miss my mountain

 

[rosec]

My husband's ALS was diagnosed in 11/2009, he went for his sleep study in 01/2010, and received his bipap in 03/2010. At that time his FVC was about 85%. He has been using it ever since whenever he slept. He switched to a Trilogy about 18 months ago.