What are the tricks to sleep?

[nona]

Hi PALS, first post here despite being in my fifth year with ALS. I'm a 48 year old woman who lives alone. For the last several months, I have struggled to get a good night's sleep. I am a side sleeper with a bipap. I have minimal pain during the day but at night in bed my hips, knees and shoulders ache and I can't move or roll over to relieve pain. I take a Tylenol /advil / lorazepam cocktail before bed and sometimes that holds until about 5 AM, which is well before my caregiver arrives to get me up. About six weeks ago I got a hospital bed with a standard mattress and I tried sleeping upright but between mask leaks and saliva I got no sleep. Then I was fortunate enough to receive a PressureGuard APM2 mattress from CCALS, but when I use it I wake up with hives from the heat it throws, even when I open the windows by my bed. In NH, in winter. And the air flow won't work properly if the head is raised above 30 degrees, which means I still sleep on my side and the alternating pressure keeps me up all night. I know, princess and the pea... I just want ideas on what works for you? how do you address pain at night? Should I just get a new adjustable mattress for my full bed? Any good luck with hospital beds? Thanks!

 

[ShiftKicker]

It seems counter-intuitive, but a sheepskin mattress topper can really make a difference with regards to temperature regulation and provides a very comfortable surface under your sheet.

If your pain at night is due to spasticity, you may want to think about baclofen or Tizanidine to relieve muscle spasms- with the added bonus of them having a sedative effect.

 

[nona]

thank you, hmmm, sheepskin might work. The hip pain has been dx as bursitis and it affects the IT band and knees. I don't have much in the way of spasms anymore, and Mexilitene helps there. But I like the sedative effect you mention

 

[lgelb]

Sheepskin is nice, but to address joint pain from immobility, I would try a latex overlay, something like the Pure Green brand, on either the the standard or hospital bed for more "give." Many people do not do well with alternating pressure mattresses because you do not control how you are being moved.

With the right fitted sheet (pima cotton, bamboo, something natural), heat buildup should not be an issue with 100% natural latex because it has lots of air chambers.

 

[nona]

I have natural latex on my regular bed, and no heat problems there but it no longer eases the pain. I have good cotton sheets on both beds. Do you think I could put a latex overlay on the PressureGuard mattressthat's on the hospital bed?

 

[lgelb]

The mattresses that move won't really work with overlays on top of the air cells, and that might wear out the motor. If you can turn off the mattress movement and just leave it stably inflated (not sure what your options are), you could try the overlay that way, but of course an overlay isn't really designed for a non-flat surface.

You could also get a medical foam hospital bed mattress to use with the latex overlay. The mattress itself is not that pricey. Being able to be in a non-flat position can really help your joints so whatever you can do with the hospital bed is preferred.

Also remember to support your forearms, elbows, knees, heels with foam if they have pressure points from whatever setup you end up with, e.g. don't let your arms dangle. The knees/heels particularly can relate to your hip pain by compromising hip/leg alignment.

 

[Vincent]

I'm going to go a different route and recommend medical marijuana. It relaxes you, controls spasticity/cramping and helps with pain as well. I use an oil with equal parts CBD/THC. It does come with the old school, Oh no a street drug! But a medical quality consistent dosing it truly is a wonder drug.
Vincent

 

[KateEmerson]

We had a natural latex mattress with a ROHO on top of it , then a good quality wool " mattress pad, then all cotton sheets. We also supported his shoulders with pillows under the elbows. He was a back sleeper and didn't have joint pain other than the shoulders which this combination took care of. He did have heat/sweating problems that were resolved with the wool mattress pad.

 

[nona]

Thank you all for your advice. It seems like the mattress options are :
1. Keep PressureGuard with alternating pressure and cover it with natural wool mattress pad. ~$150
2. Buy standard foam mattress and a separate natural latex topper. ~$300
3. Buy natural latex standard mattress. ~$600

the first choice seems the most obvious but mattress is limited to 30% incline.