Old 06-28-2009, 07:58 PM #1 (permalink)
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Default Sleeping problems

I am having trouble sleeping. I was diagnosed 9 months ago. It is only in my legs right now. I take sleeping medication but now i am only comfortable on my left side . For the past few months i haven't had the ability to roll over in my sleep so i am in the same position all night. By 5am my lower back is hurting so much that i need to sit in my recliner chair for a while til the pain goes away ( i usually take 2 advil). I am still in a regular bed but i will soon have a 'hospital' bed.

What do others do to have a comfortable sleep?
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Old 06-28-2009, 09:12 PM #2 (permalink)
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Sorry to hear of your problems sleeping. I also had those type of problems prior to getting a ROHO mattress. Now I sleep comfortably all night. I also remain in the same position all night as I can't move either. But even not moving all night does not cause me any pain or discomfort with this ROHO mattress.
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Old 06-29-2009, 02:29 PM #3 (permalink)
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I had the same problems but now I have a pillow under my knees and elevate my hospital bed 30 degrees head and feet. Suggested by the occupational therapist. No more pain!
Sometimes you just need minor position changes. I thought that my mattress was the problem but it is still good good.
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Old 07-02-2009, 02:14 PM #4 (permalink)
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What is a roho mattress?
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Old 07-02-2009, 05:36 PM #5 (permalink)
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Check out their website.

Last edited by David : 10-06-2009 at 11:15 PM
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Old 07-04-2009, 05:51 PM #6 (permalink)
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We recently got me a tempure pedic bed that is the "ergo " style (the head and knees will elevate like a hospital bed) Its a queen size, unfortunately it was $$$ however, it is super comfortable. I spent a lot of time at the mattress store, laying on various softness's trying to find which one I could turn over in best before choosing this one.

Funny story, today, the bedroom had this vibration sound, and the floor was vibrating. I thought it was coming from downstairs in the laundry room and kept sending my family down to check the dehumidifier running in there. There was no denying the vibration, and it sounded louder in some areas of the room than others. Finally I sat down on the foot of the bed, and even the bed was vibrating. ~ Which was when it hit me that the bed was vibrating! That was it! The bed comes with a remote control, and it has a vibrate function too (which I'd not really investigated) My purse was laying on the dresser ON THE REMOTE and had activated it.
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Old 07-15-2009, 09:36 PM #7 (permalink)
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ROSE! I've been surfing the forum today and find your posts witty and insightful! Thanks for the giggle! Our doggies hate the vibrator on the bed! They jump like they've been shot!

We were fortunate to get our bed from the ALS Clinic "loaner" closet. Start checking into this now, Patsy! My Andy got his first bed (yes, he's been through 2) paid for by insurance as a medical necessity. Hopefully you have an ALS rep that can walk you through the paperwork. In the meantime, there are lots of foam options out there. There are forms in the shape of cylinders and wedges that we used to pile pillows on top of. Additionally we use memory foam, the best we could afford.

Also, Andy used Gabapentin for nerve pain in his legs. He no longer needs it, but when his legs were spasming and causing him discomfort, it helped. I know painkillers are an option, but we have had poop issues (too binding) and try our best to manage in other ways.

Blessings!
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Old 07-30-2009, 10:44 PM #8 (permalink)
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I also had a problem with sleeping, i think i had insomia. My doctor said that i had to take medications pills.
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Old 08-01-2009, 04:50 PM #9 (permalink)
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Pam,
I doubt you'll catch this post, as you're dealing with so much with Andy right now. But about the dogs and the vibrate, the puppy and the cat were both up in the bed with me, me in the middle, hoping for detente, if not complete peace between them, and the puppy rolled over on the remote, bed starts vibrating like crazy. I stop it, dog is clueless, and does not care, cat spends the next solid 5 minutes, motionless, hanging off the edge of the bed, staring, trying to see under it and discover what it was that made it move.

bettsnirvana,

Lots of PALS have insomnia, it is pretty much expected, I hope the meds help you. If they don't, let your neuro know, and something else can be prescribed. good luck with it!
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Old 08-01-2009, 06:11 PM #10 (permalink)
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I have a vibrating massage cushion on my recliner and our fat cat, Pounce, loves to sit in my chair. All I have to do to get him off the chair is hit the "ON" button to he vibrating cushion and it sends him 3 feet in the air every time. Quite a feet for this 20 pounder!

I think the cat belives the chair is possessed when this happens to him.

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Old 09-21-2009, 12:15 AM #11 (permalink)
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Default Re: Sleeping problems

My husband is in need of some help. We recently got a hospital bed with an alternating pressure pad for him to sleep in. It was great for a night or two. However, he will sleep for a few hours then wake up with terrible back pains. It hurts him to sleep in his permobil chair now, too. Any ideas?
(pain meds really cause intestinal discomfort for him---huge problem)
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Old 09-21-2009, 08:07 AM #12 (permalink)
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Default Re: Sleeping problems

Hi Hopeful, I'm sorry to read about your hubbys pain. I think a call to the ALS physical therapist for a home visit is in order. He or she can pinpoint what exactly is going on and can help with positioning and maybe some foam options for relief. Please keep us posted. I'll keep you in my prayers. Pam
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Old 09-21-2009, 11:52 AM #13 (permalink)
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Default Re: Sleeping problems

I had the same problems before I got an UltraMatic bed and a ROHO mattress. After a few nights I got the pressure right in the mattress and now I sleep all night without having to be repositioned. The bed was expensive though.
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Old 09-24-2009, 10:56 AM #14 (permalink)
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Default Re: Sleeping problems

good for you people !
we live in iran, and we havent got any of those comfortable beds here.
my father has got ALS and now he has breathing problems , he doesnt sleep well-4 hours a day-
he is very week and he just keeps loosing weight.
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Old 10-10-2009, 02:43 PM #15 (permalink)
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Default Re: Sleeping problems

Maryam, My husband also has trouble sleeping for more than 4 hours. He is now on a medication called Ambien for sleep and it is a God send! Could you get your Dad a script for that medication to try it? My heart breaks for you.
How is the political situation in Iran now? Have you heard of United4Iran? It was held here on July 25. "United4Iran is a non-partisan collaborative of individuals and human rights organizations. United4Iran does not promote any political agenda, and they are opposed to any foreign interference or military attack on Iran. Their only aim is to condemn the widespread and systematic violations of the Iranian people’s human rights and to call for full restoration of their human and civil rights.

They came together to organize a Global Day of Action on July 25th so the citizens of the world can stand together and tell their Iranian brothers and sisters: We have heard your voices and you are not alone." I have many Bahai friends from Iran that I love deeply.
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