Old 01-09-2017, 04:26 AM #1 (permalink)
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Default Sleeping and Breathing

For the last week I am unable to sleep very much because even with my Bipap on I cant get breath lying down. My Bipap is adjusted to the "highest" setting according to the therapist.

I do have an adjustable bed but have never been a person who can sleep sitting up or on my back. So I have it inclined to as much as I can handle. I try and sleep in my recliner but again I can't really sleep sitting up.

I do not take any prescriptions, but have been taking Melatonin, it helps with immediately falling a sleep but then I wake with "air hunger", I fall asleep for a short time, wake again and repeat.

I know my breathing has taken another turn for the worst but I would like to sleep.

Thoughts or suggestions?
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Old 01-09-2017, 05:35 AM #2 (permalink)
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Default Re: Sleeping and Breathing

Pete I always slept on my stomach or side, never on my back, before als.

I adjusted, took a few weeks or so.

Having your legs inclined also will help breathing.

I dont take any meds either, so I cant recommend any

Sorry, I dont have helpful ideas - Pat
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Old 01-09-2017, 08:23 AM #3 (permalink)
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Default Re: Sleeping and Breathing

Hi Pete,
My husband is having the same issues. I give him melatonin and Benadryl, and it does helps him sleep for several hours. He is sleeping in his recliner.
Take care
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Old 01-09-2017, 10:58 AM #4 (permalink)
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Default Re: Sleeping and Breathing

Pete, I find that I breathe better with a pillow under my knees. I switch from back to right side throughout the night. The thing that wakes me up is pain. I'm sure Laurie will weigh in.
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Old 01-09-2017, 10:58 AM #5 (permalink)
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Default Re: Sleeping and Breathing

My husband has always slept on his side and he's still able to with the head of his bed inclined just enough to ease his breathing. (We have a temperapedic split-king adjustable bed.) But what helps him the most with his sleep is medical marijuana. I make the tincture myself--just a small amount of THC in the dose he takes at night, none during the day. He does not get "high" with that amount but it helps him relax.

(BTW - He has been on Melatonin and a bipap for many years due to REM Behavior Sleep Disorder and complex sleep apnea. It was when ALS began affecting his sleep that we added the small amount of THC. Worked like a charm.)

Last edited by 4tloml : 01-09-2017 at 11:04 AM Reason: Added more info-the BTW
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Old 01-09-2017, 11:19 AM #6 (permalink)
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Default Re: Sleeping and Breathing

I could never sleep on my back either, Pete, and tell I had to. They put me in bed on my back and put pillows under my shoulder and arms and under both feet. Then I raise my head and legs into a zero gravity position. Then take the medical marijuana and put on bipap and sleep comes for almost 8 hours.
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Old 01-09-2017, 11:27 AM #7 (permalink)
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Default Re: Sleeping and Breathing

Agree, Pat, many people elevate the head in bed but it's doing it with the lower body too that creates that sweet-spot "zero gravity" position. It takes some trial and error.

If your IPAP is at the highest setting, Pete, there are still other settings that can be tweaked, since it's not just the peak flow but how much how fast how long when. I'd be happy to help if you send me your settings. Most often the IPAP is set too high because everything else is being ignored, and then your lungs can't handle the flow for very long.

Best,
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Old 01-09-2017, 02:27 PM #8 (permalink)
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Default Re: Sleeping and Breathing

Quote:
Originally Posted by azgirl View Post
I could never sleep on my back either, Pete, and tell I had to. They put me in bed on my back and put pillows under my shoulder and arms and under both feet. Then I raise my head and legs into a zero gravity position. Then take the medical marijuana and put on bipap and sleep comes for almost 8 hours.
How many milligrams of THC do you take? Do you take it right before bed or a couple of hours before bed? I've been using CBD oil (Charlotte's web) for about a year and just got some THC in candy form.
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Old 01-09-2017, 03:39 PM #9 (permalink)
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Default Re: Sleeping and Breathing

If the issue is breathing, rather than pain, then MM may help but learning to sleep in a partially upright position and getting the bipap settings readjusted need to happen first.

Pete I hope your bipap settings can be tweaked to suit.

Chris was the same, at first he could not sleep with his head raised at all in bed. Then he started sleep in his recliner chair for a good part of the night. Once he moved into the hospital bed we could keep him good all night. So you will adjust, but using pillows to prop yourself in a regular bed may not be a good answer.
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Old 01-09-2017, 07:33 PM #10 (permalink)
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Default Re: Sleeping and Breathing

Pete, Steve has always been a side sleeper. We got the adjustable hospital bed, bought a good mattress and elevated his feet. We also bought a large neck pillow. It took a couple of weeks to get fully used to sleeping on his back but he did. He now has to sleep in almost a fully elevated position but was able to get used to it quickly.
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Old 01-09-2017, 07:38 PM #11 (permalink)
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Default Re: Sleeping and Breathing

MM is also prescribed for pain. I've known PALS who go off Oxy and Morphine when they start using the right combo (for them) of MM. Problem here is some states don't have approval, some states (like Florida) have approval but the legislators are holding up licensing and the dispensaries.
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Old 01-12-2017, 04:32 PM #12 (permalink)
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Default Re: Sleeping and Breathing

Hi, I wake up every few hours with breathing problems too. I sit up awhile and rehydrate my mouth with water, (and it ends up hydrating my nasal passages for whatever reason), then go back to sleep again. I sleep on my side, don't use the BI-PAP, and just elevate my head a bit with a fatter pillow. I have bulbar onset and constant drooling, so have a napkin stuffed in my mouth at all times and this routine seems to help me the most. Hopefully you will find it useful for you too.
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Old 01-12-2017, 08:54 PM #13 (permalink)
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Default Re: Sleeping and Breathing

Pete, I have the same problem. Will go to bed, fall asleep and wake up every hour. Was driving me nuts. Finally mentioned it to my hospice doctor. She prescribed Ativan. I hesitated taking it for a week, but then decided to give it a try. I have used it now for three nights and it works. I can sleep through the night with just one interruption or none. Bill
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Old 01-13-2017, 09:54 AM #14 (permalink)
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Default Re: Sleeping and Breathing

An RT once explained that the human body is designed to breathe best when upright and to sleep best when reclined, which is a dilemma for PALS and one of the reasons night-time BIPAP is often prescribed. I believe it is unreasonable to expect a comprehensive and accurate assessment of a PALS' individual, specific night-time respiratory needs to be performed in any way other than at bedside by an ALS-literate RT. Sadly, that can be very challenging to arrange, but we found that it paid off to put in the effort to make this happen. There are just too many variables and things that only a trained eye can perceive to expect a good assessment remotely. The 2nd best alternative is to get an ALS-literate RT on the phone or text messaging while making various tweaks to the BIPAP. I also agree with the poster who suggested sleep drugs. In our case, the doctor prescribed Valium and Mirtazapine. This is a question to be discussed with the MD.
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Old 01-14-2017, 05:48 AM #15 (permalink)
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Default Re: Sleeping and Breathing

I also took video of steve sleeping to show the rt.
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