Old 09-27-2014, 11:17 AM #1 (permalink)
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Default Trouble sleeping

Anyone have any hints about how to sleep better? I can't turn over by myself and I just can't get comfortable / I have a sleep by number bed but just can't get it where I am comfortable
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Old 09-27-2014, 11:26 AM #2 (permalink)
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Default Re: Trouble sleeping

I was prescribed a bipap the day I was diagnosed. The mask makes me sleep on my back, which I had never done. When set up right, it is like hypnosis. I fall asleep in minutes, and wake up rested. Be sure it isn't set too high.
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Old 09-27-2014, 11:48 AM #3 (permalink)
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Default Re: Trouble sleeping

I am so sorry. My PALS has a hard time getting to sleep and staying asleep. It is so annoying and exhausting. Some nights are better than others. Luckily we are able to roll her over whenever she needs to change position. My PALS does have a Tempurpedic adjustable bed with an additional mattress pad on top. It may help some but it doesn't solve the problem.

We have gotten all the stock answers and you can give them a shot: no caffeine after 5, melatonin, propping PALS with pillows. chamomile tea, etc. I think you have to keep searching for what works for you. For example, my PALS sleep is not helped at all by the BIPap, though she still wears it. It works wonders for other people. I would check with your doctor and see if there is any medicine they would be willing to let you try. I have read that some people take Gabapentin. It is supposed to help with the aching and can make some people drowsy. I have also read that some people take anti-depressants to aid in sleeping issues even if they don't have depression problems.

Hope you find something that works for you!
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Old 09-27-2014, 12:52 PM #4 (permalink)
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Default Re: Trouble sleeping

Over the past 7 years many people on the forum have had good success with taking Magnesium Citrate. Walmart sells a bottle of Mag. Citrate for about $7. It is a mineral that many people are deficient of and in our household we take it daily. As a result no more constipation, tight muscles, and much easier to fall asleep and stay asleep. There are lots of good articles about it if you search. Here is a little info. from Dr. Mark Harmon. Just search and you can find his full article and many others. Good luck.

"A DEFICIENCY IN THIS CRITICAL nutrient makes you twice as likely to die as other people, according to a study published in The Journal of Intensive Care Medicine.(i) It also accounts for a long list of symptoms and diseases — which are easily helped and often cured by adding this nutrient. In fact, in my practice, this nutrient is one of my secret weapons against illness. Yet up to half of Americans are deficient in this nutrient and don’t know it.

I’m talking about magnesium.

It is an antidote to stress, the most powerful relaxation mineral available, and it can help improve your sleep.

I find it very funny that more doctors aren’t clued in to the benefits of magnesium, because we use it all the time in conventional medicine. But we never stop to think about why or how important it is to our general health or why it helps our bodies function better.

I remember using magnesium when I worked in the emergency room. It was a critical “medication” on the crash cart. If someone was dying of a life-threatening arrhythmia (or irregular heart beat), we used intravenous magnesium. If someone was constipated or needed to prepare for colonoscopy, we gave them milk of magnesia or a green bottle of liquid magnesium citrate, which emptied their bowels. If pregnant women came in with pre-term labor, or high blood pressure of pregnancy (pre-eclampsia) or seizures, we gave them continuous high doses of intravenous magnesium.

But you don’t have to be in the hospital to benefit from getting more magnesium. You can start taking regular magnesium supplementation today and see results.

The Relaxation Mineral

Think of magnesium as the relaxation mineral. Anything that is tight, irritable, crampy, and stiff — whether it is a body part or an even a mood — is a sign of magnesium deficiency.

This critical mineral is actually responsible for over 300 enzyme reactions and is found in all of your tissues — but mainly in your bones, muscles, and brain. You must have it for your cells to make energy, for many different chemical pumps to work, to stabilize membranes, and to help muscles relax."
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Old 09-27-2014, 12:54 PM #5 (permalink)
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Default Re: Trouble sleeping

You may want to glance at my thread entitled "Sleeping Conundrum..." in the CALS section Sleeping Conundrum...

I hope our efforts allow you some options that will help you...

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Old 09-27-2014, 01:12 PM #6 (permalink)
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Default Re: Trouble sleeping

If you cannot turn due to leg issues (like me) but still have some use of hands and arms, a bed rail can help.
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Old 09-27-2014, 01:28 PM #7 (permalink)
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Default Re: Trouble sleeping

Nights are rough for me, I usually go to bed at 10pm, lay there and watch TV till midnight or later some nights. For some reason I tend to playback my life experiences, instead of focusing on sleeping.
Amitriptyline seems to help me relax, often I use melantonin (chewable is much quicker acting). I can still roll over, but my C-pap makes it so I need to be on my back for a good seal.
I look forward to bedtime.....just wish the voices in my head would S.T.F.U., so it didn't take so long to fall asleep.
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Old 09-27-2014, 02:32 PM #8 (permalink)
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Default Re: Trouble sleeping

I'm a fan of Ambien.
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Old 09-27-2014, 02:43 PM #9 (permalink)
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Default Re: Trouble sleeping

I wholly agree on the need for magnesium. It cured the leg cramps I had on waking every morning. I get 150-200% of the daily recommended every day.
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Old 09-27-2014, 05:11 PM #10 (permalink)
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Default Re: Trouble sleeping

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Originally Posted by Schmidhogan View Post
I'm a fan of Ambien.
Not trying to say you are full of "schmit"...but every neurologist that I have spoken to about Ambien says it is not good for us with MND.
I think ambien is great, it knocks me out very well....but I can't get it now.
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Old 09-27-2014, 05:28 PM #11 (permalink)
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Default Re: Trouble sleeping

That's a new one for me Bigmark. In what way is Ambien contraindicated for ALS? It was prescribed by my doctor who is director of the ALS clinic at UCSF. Alex. PS maybe she's full of schmit
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Old 09-27-2014, 07:01 PM #12 (permalink)
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Default Re: Trouble sleeping

Valium, Hydrocodone, Fentanyl, and Morphine. If I'm lucky I fall asleep for 4-6 hours.
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Old 09-27-2014, 11:15 PM #13 (permalink)
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Default Re: Trouble sleeping

I've been taking amatriptylene and tramadol, still have some trouble but I can function. My wife says I sleep better with hydrocodone but I feel kind fuzzy the next day. Still working so alertness is an issue. And after the last bout of constipation i don't trust the harder stuff
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Old 09-28-2014, 12:00 AM #14 (permalink)
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Default Re: Trouble sleeping

I was reading these forums about a month ago and they were talking about the air mats that are used to prevent bedsores and how it was helpful for her son. I ordered one and THANK YOU whoever suggested it. For me it prevents my joints from getting as stiff and really helps me sleep. They can be bought from Amazon for 36 bucks with the pump and mattress the brand name is drive. This is on top of my sleep number and I really like it I never thought that anything would beat my sleep number. I hope it helps. I know how boring it can get when you can't sleep at night. I think last year I watched everything Netflix had to offer because the rest of the family was asleep.
Good Luck
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Old 09-28-2014, 03:10 PM #15 (permalink)
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Default Re: Trouble sleeping

Thank you/ I am going to try that
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