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New member
Mar 20, 2008
I'm new to this forum, but I have been living with ALS for 11 years. About a month ago, I had a traech put in and I am now on a vent. Before I had to be put on the vent, I was just using a BiPap and I would sleep pretty good, only waking up once or twice during the night to be turned. But ever since I have been on the vent, I can't sleep more then a couple of hours at a time, and that is on a good day. Most of the time, I am up about every hour, and that's with taking about 3 different things to help me sleep.

Does anyone have any recommendations of a perscribed medication or an over the counter supplement that helps get a full night's sleep? I've tried Ambien, but since I had to crush and dissolve it to go down my feeding tube, I had a bad reaction because the timed release part had been dissolved. Am I alone here, or have others had the same problem? And if so, what did you find that helped you sleep?
Welcome to the forum. I have not had much help with Ambien. It may help some people, but not me. I also have short periods of sleep at night, but it's because of leg pain that keeps waking me. I have tired numerous things to try to help.

It seems the ones that have helped me the most are Valium and Klonopin.

Klonopin (clonazepam) may be habit forming. It was given to me first for restless leg syndrome, but I found out it helps me sleep.

I would definitely get with my Doctor ASAP and see what he recommends.
Mike or aka Quadbliss might be able to help with this one.
I take Resteril (sp?) for sleep. But, what bothers me about your situation is the apparent connection with your vent. I am wondering if your settings are not too high.

I am going to have to check into the restless leg medicine. There are times where I wakeup and my legs hurt or my feet are numb.

As for the vent settings, I have no idea how to tell if they are too high or too low. I was in the hospital for about 3 weeks after going on the vent, so I assume my doctor and the respiratory therapists had plenty of time to figure out the perfect settings. Maybe I should have mentioned I had to have emergency surgery to remove my gall bladder less than a week after going on the vent. I don't know if that has anything to do with my lack of sleep or not. I just want to get a good night sleep, and any recommendations would be greatly appreciated.

Mike and Al are right. I take Klonopin and Tim takes Restoril. It works for us.

Hi Wade- I'd take a look at Mike's hint. (Quadbliss) My immediate reaction to reading your post was that this might be related to the bipap. And welcome to the forum! Cindy
I believe a good balance of rest and activity slows progression. Sleep is important! You should talk to your doc. :-D

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