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Kerri

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Hi, I'm wondering if sleep studies show abnormal results with ALS.
I'm not diagnosed but am going to a MDA clinic soon because of fast
progression of severe weakness. I had a sleep study
recently.

My respiratory muscles ache and feel like they
are struggling hard to expand when I lay down on my back,
especially at night when I'm laying down to sleep.
My sleep study results didn't mention anything relating
to these symptoms. (I was awake for an hour in the middle of
the sleep study night with my respiratory muscles aching; had to take pain med. to get back to sleep.)

I'm glad to learn I don't have sleep apnea, but thought I would gain some info.on the struggle my breathing muscles are having.

Does anyone know if the breathing probs. of ALS (and other Neuromuscular
diseases) can show up via. sleep study testing and whether the results
might change with the progression of the disease? Thanks, Kerri
 

CindyM

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Hi Kerry. I'll be watching the responses to this question with interest. I have apnea, for which I use a CPAP machine at night, and lately I have also been feeling like my chest is tight, my head aches all the time, and I feel light-headed and nauseous. The sleep lab didn’t seem to know why this would be, although I have read that if your chest muscles are weak a CPAP can over-power them. I thought the lab would recommend a bi-pap, which still may not mean MND since I hear some folks use one even without having weak muscles.

So, long story short, I went to my local Neuro- the very one who first raised the issue of ALS, but he said he had no idea. So now I will call or email the ALS guy but really, I thought this was a no-brainer for anybody. See what hanging around here does? You get pretty informed, apparently sometimes more than the medical folks. :-D

The sleep lab did say that if I keep having trouble they might do another sleep study and I wondered if they can pick up weak chest muscles that way. Be interesting to see what others have to say… Cindy
 

cheryilyn

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cindy,
have you seen a pulmonoligist?(sp) i have never had a sleep study. i was referred for a breathing test by my 1st neuro and because of the results sent to a pulmonoligist. he ordered a bi pap on my 1st appt.
 

Al

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I was struggling to breathe when on my back and told the Pulmonologist. He had me lie down in his office, saw the way I was breathing and ordered a sleep study. It showed that I needed a Bipap. I wasn't moving enough air and CO2 was building up. They adjusted my pressures last year but this July they were fine even though my FVC is down 20%. Did your sleep lab monitor CO2. In my case for sleep apnea they didn't. With the ALS diagnosis they did. I'd either call the sleep lab doc or make sure you mention it at the MDA clinic. Try sleeping on your side in the mean time. It'll be easier to breathe.
AL.
 

CindyM

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Thanks AL- I think you are right- it is the CO2 levels that nobody is thinking about. Good advice. Cindy
 

hboyajian

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The CO2 test is critical if you are a PALS experiencing severe breathing difficulties. People mostly think about if they are getting enough oxygen to the brain and body (enough volume going into the lungs), but the ability to exhale fully is equally critical in order to breathe out the waste gasses. The CO2 test, for those who do not have experience with it, is an arterial blood test. This makes it more painful than taking blood from a vein, so they don't just do it routinely if a problem is not suspected. The build up of C02 can cause lethargy and eventually cause you to become unconscious. It also makes your blood more acidic, which then in turn eventually causes heart failure. I have heard that being on just oxygen, for a person with ALS, can suppress the impetus for the lungs to breathe out because your body is getting the message that the lungs are doing a pretty good job (at least at getting oxygen to the brain). This is a question to ask your doctor...should you be on bi-pap during the day (rather than just oxygen) in addition to at night?
 

Kerri

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Thanks for the good information. Turns out my sleep study only tested for O2.

Interesting about effects of CO2.

Al, it helps a lot to sleep on my side. I find it harder to breathe sleeping on my left
side than my right (muscles are weaker on the left side of my body, feels like
respiratory muscles are weaker on that side as well),so I sleep on my right side.
Anyone else find it easier to breathe on one side than the other?
 

CindyM

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I find it easier to sleep in a semi-reclining position.
 
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