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Fpm3

Member
Joined
Jan 3, 2016
Messages
13
Reason
PALS
Diagnosis
10/2015
Country
US
State
Pa
City
Yardley
Over the past couple months I've had increased difficulty sleeping. I've started listening to Zen radio on pandora which I believe get me to sleep but I wake after 2 hours. I don't think I've slept more than 2 hours at a time for a while now. I wake because I'm uncomfortable and struggle to move. Also the weight of the blanket annoys the hell out of me. I always slept on my stomach, but my shoulder is freezing up and it gets painful when laying on my stomach. I also have some drooling and at times feel as though something is stuck in my throat which I constantly try to clear.

I've checked my oxygen levels which is consistently between 94% to 96% and don't not use any breathing appliances.

Any advice would be greatly appreciated.

Thanks, Frank.
 
Hi, Frank,
The lightest effective blankets I've found are the Berkshire Blankets Softec (BBN). I'm a bit fanatical about blanket weight myself, as I currently use two + two sheets, in alternating layers, since I can't tolerate central heat.

If your shoulder is already subluxated or you've lost muscle in it, you want to be very careful with exercise (holding the joint in its socket or approximating that), but you can still do massage/range of motion during the day to try to extend your stomach-sleeping days. Your clinic's PT should be able to show you this, or if you are eligible for home health, you can get a PT to come out and get you started.

Still, the day will come when that won't work, so you might try sleeping in another position to see what kind of supports you will need (arm, knees, heels, etc.) so you can be prepared. And sleeping on your side or back might help your shoulders either way.

The best pillow we found for shoulder support is the Sleep Better Isotonic Exquisite Comfort Visco Shoulder Pillow. My husband's shoulders were both sublux'd. But he was only able to sleep on his back; thus, my caveat.

I don't know what your lung function is, but if you're waking up feeling like you need to clear your throat, BiPAP could help by ensuring a constant air flow and thus finessing some of the mucus/dryness, in part through humidification as well. In turn, you might achieve deeper sleep stages that would enable you to stay asleep for longer periods at a time. To see how much deep sleep you're getting, you can get a rough approximation with the Sleep Cycle app if you have an iPhone or iPad. I'm sure there's something similar for Android.

Do you have the drooling/stuck throat thing when not in bed?

You can probably guess the next thing I'll say -- might be time for a hospital bed, because when you lie flat on your stomach, your shoulders are just being pulled apart (kind of literally), and having the head elevated usually helps breathing/mucus/saliva flow as well because it is easier for liquids to stay down, if that makes sense. Your airway is a series of valves whose function is gradually compromised by ALS. And while I would normally recommend a foam overlay for any bed to get deeper into sleep, might make more sense to invest in one that fits your next bed, if that switch is not too far away.

Best,
Laurie
 
Hi Frank,

I ended up having a sleep study done in December. It wasn't done at the Clinic but in my home town facility. I had 15 apneas and 68 partial apneas. The study said I snore severely. I did not know this but only knew that I woke up once choking and I was waking up frequently during the night. I also had reduced REM and reduced delta (no surprise.) I am not a heavy woman, never had sleep problems before. My average baseline for oxygen desaturations was 96% and the minimum SaO2 during a desaturation event was 93%. I showed the results to my ALS doctor and he wants to do another pulmonary function test and then decide what to do. Most of my "events" where when I was sleeping on my right side. I switch from right side to back and always have.

I also have acid reflux and that complicates matters. I do have an adjustable bed and have had one and a memory foam mattress cover. Both help.
 
thank you both for the feedback. it is very helpful.
 
Have you tried Melantonin? It helps me fall to sleep, and stay asleep for several hours.
If your insomnia is from anxiety or stress related, perhaps you could ask you doc for Trazadone. That will knock you out. I prefer Ambien, but my neuro doc says it is not a wise decision to taken if you have MND. :)
One other thing.....Melantonin has the least amount of morning grogginess for me. The other two I mentioned have drowsy side effects in the am. Also, if you decide to try Melantonin, get the chewable tablets because it is faster acting.
 
A full sleep study is unnecessary to determine if you need BiPAP and to get it covered by Medicare/insurance. Your pulmonary doctor can an assess the need by sending you home with a fingertip monitor to record your respiratory rate and pulse overnight. The recording is then analysed for episodes of apnea and severity. This and a diagnosis of ALS is all that is needed for Medicare/insurance coverage. Shallow breathing and apnea are expected as ALS progresses and getting BiPAP is standard medical care. It doesn't have to be complicated unless your doctor is unfamiliar with the problem. And pulmonary function test results from testing done while you are awake, upright, and forcing maximum breathing does not correlate to apnea or shallow breathing during sleep. Another pulmonary function test will show if your respiratory status has deteriorated since the last one, but it will not show the need for overnight BiPAP.
 
yes, melatonin works well
 
Thanks. Melatonin sounds simple enough to try, so I'll give it a shot. Will also ask about the finger tip monitor.
 
I should have explained that the fingertip monitor needed for an overnight at home sleep study is not a standard oximeter. It is one that records all the information for later analysis.
 
Frank it depends on the reason you are having trouble sleeping.

If it is fear/anxiety (perfectly reasonable) then something like melatonin will work.

However, trouble sleeping is often one of the early indicators that you are not breathing well at night. Add to the the pain issues of course.

What concerns me is that if it is purely pain from position at night, then taking something to make you sleep longer is not addressing the issue.

Do you sleep in a hospital bed? Have you had your breathing tested, especially laying down?

I do know that for Chris, pain was the first real issue with sleeping and it took a long time to convince him to use the hospital bed. He would be up and down all night, and sleep between bed, lounge and recliner chair, changing often.

Then once he added Endep, he began to sleep. However, he would not accept using a bipap, and I know he would have slept better for longer if he had.

Please keep us posted on whatever strategies you try.
 
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