Old 09-14-2010, 07:55 AM #1 (permalink)
New Member
 
Join Date: 2010
City: Woodbridge
State: Va
Country: US
Diagnosed: 03/2010
Interest: I have been diagnosed with ALS.
Posts: 81
APL55 is on a distinguished road
APL55 APL55 is offline
New Member
Join Date: 2010
City: Woodbridge
State: Va
Country: US
Diagnosed: 03/2010
Interest: I have been diagnosed with ALS.
Posts: 81
APL55 is on a distinguished road
Default Better off not sleeping

I woke up this morning around 5am went back to sleep,got up at 6 to take my meds in the morning,which I take on the hour for the next 4hrs,well between 7 & 8 I fell back asleep and then I got up, Now I can hardley move from the chest up,every thing feels heavy and my hands are tingling like mad,wasn't like this when I got up,don't even know if I want to try to get out of bed,my legs seem ok so maybe I'll at least try to get to the bathroom,I'm even having trouble typing this,so I think I'll stay up all night and see what happens,do any of you experience any thing like this?I would like to know if this is normal or not.Thanks!
APL55 is offline  
Old 09-17-2010, 07:12 PM #2 (permalink)
New Member (Say Hi)
 
Join Date: 2010
City: northport
State: AL
Country: US
Interest: My husband has been diagnosed/ first opinion
Posts: 5
law6130 is on a distinguished road
law6130 law6130 is offline
New Member (Say Hi)
Join Date: 2010
City: northport
State: AL
Country: US
Interest: My husband has been diagnosed/ first opinion
Posts: 5
law6130 is on a distinguished road
Default Re: Better off not sleeping

sorry you had trouble when you woke up ... i hope things are better for you now ... im new to this site and my husband just recently got a first diagnosis of ALS ... so i cant really say about problems waking up ... since the diagnosis my husband stays up very late every night ... which is not his normal ...

I pray you are feeling better !
Lori
law6130 is offline  
Old 09-17-2010, 08:30 PM #3 (permalink)
Miss's Avatar
Very Helpful Member
 
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,762
Miss is on a distinguished road
Miss Miss is offline
Very Helpful Member
Miss's Avatar
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,762
Miss is on a distinguished road
Default Re: Better off not sleeping

Ugh! My husband stays up late, too! It is not normal for him either.
Miss is offline  
Old 09-17-2010, 11:59 PM #4 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,030
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,030
Al is on a distinguished road
Default Re: Better off not sleeping

I tjhink it might have something to do with being told 80% of patients die in their sleep. Kind of makes you afraid to go to sleep. Irrational ? Possibly, but scary just the same.

AL.
Al is offline  
Old 09-18-2010, 12:17 AM #5 (permalink)
joelc's Avatar
Moderator
Forum Moderator
 
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,803
joelc is on a distinguished road
joelc joelc is offline
Moderator
Forum Moderator

joelc's Avatar
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,803
joelc is on a distinguished road
Default Re: Better off not sleeping

Sounds like a nice way to go and I am not trying to be smart. I would love to go that way.
joelc is offline  
Old 09-18-2010, 04:14 AM #6 (permalink)
New Member
 
Join Date: 2010
City: Woodbridge
State: Va
Country: US
Diagnosed: 03/2010
Interest: I have been diagnosed with ALS.
Posts: 81
APL55 is on a distinguished road
APL55 APL55 is offline
New Member
Join Date: 2010
City: Woodbridge
State: Va
Country: US
Diagnosed: 03/2010
Interest: I have been diagnosed with ALS.
Posts: 81
APL55 is on a distinguished road
Default Re: Better off not sleeping

I think the reason we stay up later or don't sleep is that we are more aware of what's going on with our bodys,in the darkness and quiet we're more aware of every little thing,like now,I woke at 4am and can't get back to sleep.I don't feel tired I just lay their aware of everything,that's when your mind messes with you,you hear your heartbeat,breathing and feel everything,with me it's the fact that when I get up in the morning I'm gonna feel worse than the day before.During the day it's not so bad because other thing distract me and to a point get my mind off things.Maybe in time we'll all learn how to control this....I Hope.
APL55 is offline  
Old 09-18-2010, 03:23 PM #7 (permalink)
Phil M's Avatar
Senior Member
 
Join Date: 2008
City: Snellville
State: Ga
Country: US
Diagnosed: 5/2008
Interest: I have been diagnosed with ALS.
Posts: 623
Phil M is on a distinguished road
Phil M Phil M is offline
Senior Member
Phil M's Avatar
Join Date: 2008
City: Snellville
State: Ga
Country: US
Diagnosed: 5/2008
Interest: I have been diagnosed with ALS.
Posts: 623
Phil M is on a distinguished road
Default Re: Better off not sleeping

I feel that way sometimes...
Phil M is offline  
Closed Thread

Tags
back, bed, fell, mad, meds, night, sleep


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Sleeping in my Chair hn7609 General Discussion About ALS/MND 11 02-18-2015 12:45 PM
hiccups when sleeping veggiepete People With ALS - "PALS" 0 03-16-2014 03:50 AM
what to do with my arms while sleeping seaside General Discussion About ALS/MND 12 10-09-2013 02:44 PM
Sleeping Pillow Kim C General Discussion About ALS/MND 2 09-22-2013 04:16 PM
Why is sleeping so much worse? CGAR People With ALS - "PALS" 5 02-19-2012 02:38 PM
Any tips on sleeping APL55 General Discussion About ALS/MND 6 11-28-2010 06:20 PM
Sleeping/Rib pain Momma General Discussion About ALS/MND 0 08-31-2010 02:48 PM
while everyone else is sleeping... 4mymom Tips, Tricks, and Gadgets 8 08-30-2010 10:38 PM
Sleeping Comfortably Miss Current Caregivers (CALS) 14 07-20-2010 06:07 AM
Help with sleeping rosales20 Current Caregivers (CALS) 4 02-06-2008 09:26 PM


All times are GMT -5. The time now is 03:15 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016