Up All Night

guwainengle · 09-13-2007, 05:33 AM

Does anyone know how/why loss of sleep is related to ALS? I can only sleep for @ 1 hour at a time and then am up the rest of the night.

G

ltr · 09-13-2007, 07:45 AM

G - ALS is not the only disease that causes this problem, so please don't relate your being unable to sleep as a sign of ALS. I, too, went through that stage, and still do sometimes, where I could only sleep in one hour intervals. Between the vibrating, twitching, nervous feeling in legs and chest and somewhat of a "speedy" feeling, I could not sleep. I know many pals use amitriptylline for sleep. It is not a serotonin drug, so maybe it will help for you. It does cause dry mouth, though, and pals also use it for that. Many others on her use sleep aids. I know Annmarie and Jamie take Ambien. If you try something short term, maybe this will go away.

joelc · 09-13-2007, 09:38 AM

Are you using a bipap yet? You could be waking up because of breathing issues and retaining too much CO2. I have had this problem. Are you getting up with headaches? That too would be a sign you need a bipap.

Even using a bipap I was having this happen all this week......the machine was being tempermental and fighting me so I switched to my backup machine last night and slept all the way through.

How is your sress and anxiety level these days? Maybe some medication could help.

Good luck!

guwainengle · 09-13-2007, 10:09 AM

I have a cpap from past sleep apnea a few years ago-and was actually going to hook it up and try it again, but my wife says I don't snore when I do sleep- But had a sleep study in June and they saud my Apnea went away and all was Ok-- During the sleep study -- do they check for CO2 levels?

Anxiety is at an all time high--- Headachs are not prevelant other than some tension headachs from I believe all this stress, but they are occasional.

I find myself laying in bed not being able to get asleep after I originally wake up mostly, and as soon as I get hit with a twitch my mind starts racing.

G

joelc · 09-13-2007, 10:45 AM

Sounds like your problem is likely anxiety. Ask your doctor to prescribe something for it, you need to sleep better as this will also help anxiety. Someone else will have to help here as I don't take any medication for anxiety so have no experience.

Take Care

guwainengle · 09-13-2007, 12:27 PM

Thanks for the advice- I think it is a nasty circle though-- symptoms to stress to symptoms to stress. Just trying to find an answer.

G

Al · 09-13-2007, 12:56 PM

Strange you should mention it G but ALS cured my sleep apnea too. I had it and when I did the sleep study for Bipap they said it was gone. Went from 38 incidents to 2 per hour. CPAP is not good for ALS patients as a rule because it doesn't let you exhale fully. I'd be thinking like Joel that some Ativan or some other anti anxiety med would help.
AL.

ltr · 09-13-2007, 08:58 PM

The reason I asked G not to relate his sleep problems to ALS is because G hasn't been diagnosed with ALS. It just causes more anxiety to relate every symptom to ALS, which in return makes sleeping difficult......thus a sleeping aid!

robc · 09-16-2007, 02:53 PM

I have mostly upper motor neuron disease and have sleep problems. Getting better now that i'm so fatigued all the time, but if i overdo it then the pain and uneasiness in my legs, hand cramps, and shoulder pain tend to wake me then it is hard to sleep.

Slow release melatonin 2.5mg and marijuana help. Ativan has never failed me but i don't like to take it often. Tylenol pm sometimes works but I only take one so I'm not so groggy in the am.

My wife called amnitryptaline my "cranky pills" because they made me so groggy and irritable in the morning.

For me, cutting back to part tome at work made the biggest impact on my overall well being. I didn't realize how much I was overdoing it. Now I get good sleep about 4 nights a week.

Hope you're able to find something that works for you.

guwainengle · 09-16-2007, 04:47 PM

My cramps really come and go-- but the unsteadiness is starting to set in.. Interesting fact on the marijuana-- I don't think I can go there yet. I probably would gain 50 lbs-- and be up all night eating. Plus knowing the company I work for -- they would never hesitate in checking- In PA we have no chance of getting medical use of this product accepted. I am thinking about trying to cut back on the work load-- but I cover 3 states and I feel if I ask to go part-time -- they may say no time. Because I am not officially diagnosed- I would not even be covered under the Americans with Disabilities Act. And with the economy really getting tough out there-- I am sure they would love to hire another person for half of my wages. When the night comes I actually hate going to bed because I know it will probably be no sleep. Interesting though-- during the day I can sometimes fall asleep for 1/2 hour and then feel good. A power nap-- Thanks for the info--

G