Needing more and more sleep

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wmilo

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Feb 14, 2018
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236
Reason
PALS
Diagnosis
10/2017
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US
State
PA
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Zelienople
I've progressed from 7-8 hours of sleep per night pre-DX (3 years) to now getting 9-10 hours per night, plus typically a 1-2 hour nap during the day. This isn't causing any problems, except for the nagging feeling that I'm not being "productive". Not that I'm productive when I'm awake - someone must have scolded me for being lazy. :)
Is this amount of sleep typical for we PALS, or do sleep requirements vary as much as other aspects of ALS?

Thanks,
 
Good question. I also need 2-3 more hours of sleep a night. I'd stay in bed longer if I didn't have to eat and pee.
 
ALS is at least in part a disease of metabolism. Energy requirements and therefore the need to replenish them are higher. So I wouldn't sweat that as long as you wake up refreshed. But if you're waking up unusually often, feeling air hunger, dizzy, headaches, confused, irritable when you get up or need to sleep, that would be a sign to reconsider your BiPAP settings (always happy to help) or your BiPAP wearing schedule, and/or your nutrition/hydration.

Best,
Laurie
 
Laurie,
I have used a cpap for 4 years prior to my diagnosis. People are always surprised when I say that I have sleep apnea. I'm 4"11 103lbs. My question is I'm having my first lung function test next month. What would be the criteria for me changing from the cpap to a bipap. I'm currently not feeling any shortness of breath.
 
At best, depending on your machine, the CPAP allows for a 3cm difference ("pressure support") between IPAP and EPAP. In MND, the recommended minimum difference is 4 and more often higher -- essentially, as part of the goal to keep a minimum EPAP so as to reduce the work of breathing muscles that get weak in MND. The absolute minimum of 3 or 4 may not work for your apnea at this point but as the MND progresses, it may. So you will always want to monitor that, and I'm happy to help. The point is, CPAP isn't set up to minimize EPAP. That's most often the reason that PALS move from CPAP to BiPAP (as my husband did as well).

However, with UMND, respiratory impairment is typically more mild than ALS and often comes later in the game. So I don't know what influences, if any, MND has had on your respiratory function as yet.

If it turns out that you are dealing with both MND and the pre-existing sleep disorder, then, depending on the type of apnea(s) you have -- central, mixed, obstructive, and in what ratio-- there is a BiPAP model that will allow for more tailored pressure support while supporting the EPAP or range that will address your apnea. A Trilogy or Astral in AVAPS-AE or the equivalent mode would as well, but depending on your FVC/MIP, those may not be reimbursable at this point.

Have you had recent PFTs? That would tell you more clearly where you are and what reimbursement you might be eligible for in re the BiPAP.

Best,
Laurie
 
I'm having my first PFT next month so I have no baseline as of yet.
 
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