After a night in bed...

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rose

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I would have said after a night sleeping, but I'm not having a lot of success in the sleep department lately.

In the morning, my hands act weird. It used to be just my right hand that would curl up (while sleeping) and my pinkie finger would move like "trigger finger", now its both hands with the jerky movement. And my right hand has three fingers that trigger. It improves as the day wears on, although they do stay jerky, never completely back to normal.

Also, my balance is worse first thing in the morning.

Has anyone else experienced this?
 
I have both sleep problems at night and movement issues in the morning. I now sleep much longer than I used to; 8-9 hours vs 5-6 but I frequently waken and stay awake for an hour or two at night. The mornings are my worst time of day. I am so stiff, legs especially, that I can barely get out of bed and onto my scooter. My balance is worse and my legs weaker than at any other time. Like you Rose, things gradually improve until about noon and then I plateau until bed time.
 
When do you all take your Meds. Les is on a schedule of 6:30 am, 12:30pm 6:30 pm 12:30 am If he has a real restless nite, I do not wake him at 6:30. Only problem, when I wake him he is grouchy, when I do not wake him, he is even more grouchy. Mornings are real tough for him. the best is wake up a 6 am, take meds, go back to sleep till 10am. HUGS Lori
 
I have more or less given up on mornings, evenings, ec. They are for the wimps without ALS. I just sleep when it overtakes me - all afternoon yesterday, do things when I CAN, do restful things like reading when that is ALL I can do. Sort of respect night and day, but really live more on a 24 hour schedule instead of 12 + 12. Follow the body.
Receiving friends is the worst cos I LOVE to see them but talking with them drains me out like a bath with no plug..............;;;;
Canno say about the walking as straight into the whchair. But whereas I used to love breakfast, have no appetite at all firss thing am now.......;;
Fing disease!
 
Lori,

I'm asking for new meds at my clinic visit in June. Nothing I've taken will keep me asleep except for the Ambien CR. Medicare prescription plans don't cover the CR, just the regular Ambien, and I wake up after about 4 hours with it. Lunesta doesn't do anything for me. Last time at clinic they decided to try me on Mirtazapine (Remeron, Avanza) which is an antidepressant. It actually helped my appetite, but also doesn't really help me sleep. Baclofin helps me sleep, but I swear it makes me weaker, so I don't like taking it. Part of the sleep problem is related to breathing, I'll take the bipap off because its bothering me (water dripping from condensation, nose itching, whatever) then I feel like I'm suffocating, and get awake being annoyed, part of it is my legs when they're aching... towards dawn I'll usually fall back asleep, and then the cat will be outside meowing to be let in, and the dog (who is actually a good sleeper) goes into "Lassie" mode and makes sure I'm awake to let his little pal in (sigh) I think we're actually going to have to install a pet door so they can be more self service!

John, I'm not glad you have this problem, but as you do, thanks for responding. Misery loves company :) The stiffness kind of sort of makes sense, but the balance and weakness (I'm weaker too) why this would be is just weird.

IrisMarie, You've the right idea in sleeping when you can, I'm sorry your progression keeps rolling on!
 
pet flap is ESSENTial. now it is warm we just leave all the doors open all the time. Much less trouble
 
I have morning stiffness and weakness which gets better when I've been up for a while, drunk some water--which is the first thing I do.

Rose, has amitriptyline ever been discussed for your sleeping? It works well for staying asleep throughout the night, at least for me. AmbianCR didn't do much for me--like you, four hours and then BAM I was wide awake. Amitriptylene is in my system for 12 hours but doesn't make me sleepy, so I try to take it twelve hours before I want to be awake.

I need a lot more down time.... phone calls take a lot out of me, not to mention actual visits. Rose, just a thought, but you've been really working hard on the gardening. Maybe a couple days of rest for your hands will return some of their old quality.
 
Well this is not what I wanted to see. I was expecting the "rode hard and put away wet" story. *sigh*

Rose, I still wake up in the middle of the night. I do not take anything specifically for it. I did find, that if I accepted it, and wasn't pissed off when it happens , it is so much easier to fall back to sleep.

wet dreams my friend.
Glen
 
I just knew now that you were back you wouldn't be able to resist that thread!
 
ive been having a lot of jerky movement of my legs and it annoys me. neuro said massage helps. i only take hydrocordone at night about 9 pm. i go to bed at 10 but fall asleep at 2am and wake up after 2 hours, 1 hour awake 2 hours and so on. i hate ALS.
 
Just bad balance in the morning for me (knock on wood) I take a ambian, and a zanax before bed. Ambian knocks me out, and the zanax keeps me down for a while, but then the cat starts getting in my face around 5am. I give her a few pets, and usually go back to sleep for a hour or 2.
 
I used to sleep right through the night but recently I am waking up a lot, sometimes it is to hack up a goo ball and sometimes just because. Last night I went to bed at about 12:30 after watching a movie with Andrew and couldn't get to sleep until 3. Got up at 10 and I really felt wobbly but then I always do in the morning. Not looking forward to Bipap, I don't even like wearing pajamas, can't imagine how I will deal with a mask and hose.

I have only had one finger to the curl up thing so far and I really don't want any others doing that thank you very much!
 
Maybe it has something to do with the MOON! Web has had the same issue the past 2 weeks...Barry, he has severe claustrophobia so the BiPap might be a true challenge IF WE EVER FIND A DME TO GIVE IT TO US! arrggggg No finger curling yet but incredible increase in the fasciculations everywhere, spasms and weakness. :[ Both of us are sleep deprived...
 
Rose and all with fingers curling:

You may want to look into resting hand splints. These have been ordered for my husband. You wear one at a time every other night, so you have one free hand in case you have to get up and pee (for those still mobile) in the middle of the night. My husband was hesitant to have these ordered, as they are a bit cumbersome. The tech guy from ALSA told us his father had ALS and wore these at night and he believes it saved his hands from deteriorating rapidly. Therefore he was able to type and use a switch with his hands longer to communicate. That convinced my husband!

As for sleep: My husband tried amytriptyline, but he felt like he had a drug hangover all day long. He takes Zolpidem (Ambian) when he wants a good nights sleep, but that doesn't always do the trick. Ambian CR made him do weird things, very weird things. I wouldn't let him take that stuff any longer after the first couple of nights.
 
Just bad balance in the morning for me (knock on wood) I take a ambian, and a zanax before bed. Ambian knocks me out, and the zanax keeps me down for a while, but then the cat starts getting in my face around 5am. I give her a few pets, and usually go back to sleep for a hour or 2.

I jinxed myself...didn't sleep worth a darn last night! :roll:
 
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