Fasculations

[joni51]

My husband seems to be tired all the time. He says the fasculations make him tired. It is nothing for him to stay in the bed 11 hours per night. I know he don't sleep well from all the twitching and jerking.Is this normal with als? I know he is very depressed. He takes something for it , but it don't seem to help. I just feel so helpless in this...

 

[abbas child]

Joni, lack of sleep can cause depression, and depression can cause lack of sleep (or continual sleep). Has your husband ever tried taking amitriptlyene for sleep? Not everyone can take it, but typically, taken two hours or so before bedtime, it helps us stay asleep, creating a deep stage four sleep. In the beginning, if he does try it, he will be zonked most likely all day for a few (3-4 probably) days. Then that wears off, and he'll just be slightly out of it first thing (for me, a glass of water followed by a cup of coffee gets me into high gear). Amitriptylene helps nerve pain, dries the mouth (some), is not addictive or expensive. Most doctors will prescribe it, as it's been around for ages, if you ask for it.

I think that we work so hard at doing so very little, we do need more sleep. I go to bed right after dinner and am in bed for a good 12 hours, using the computer, watching a movie and reading. I sleep 7-8 hours. I also have to take a nap most afternoons. I think from what you're describing, your husband is getting poor quality sleep at best. I hope that this helps...
Ann

 

[TedH5]

What are his breathing levels? Is he on Bi PAP? Before I went on BiPap I was feeling extremely tired and would wake up still feeling tired. The BiPaP has helped with that for me. Don't get me wrong I still get tired easier then pre ALS but I have noticed a difference with the BiPAP.

 

[joni51]

Ann when we go to Emory Tuesday I will tell the Dr about it. I hope you are doing ok. Ted I don't even know what a Bipap is...lol I am sure the Dr will probably suggest some of this stuff. His breathing levels have actually never been checked. I would really appreciate it if you all can think of things I need to ask Dr Glass about , to please post for me so I can write them down to ask him. I just don't know , and I know most of you do. Thanks Joni. Ted I still hope you get in the trial

 

[abbas child]

Joni, you might message "Judith" (Judy) about the amitriptylene, as she began with too much, cut it in half, was zonked, then Wham! It took away nightime pain, let her sleep through the night, and she told me yesterday she now looks forward to going to bed, rather than feeling dread. The drug used to be called Elavil. The generic and only name now is "am--uh--trip--ta--lene" (Amitriptylene).

Too much activity or stress causes a lot of fasiculations for me along with a lot of cramping.

 

[Katie C]

Don't wait for the doc to suggest... ask! The more knowledgeable you are the more respect you will receive from your medical team, which will improve your access to information. I totally agree the first two things I thought of were depression and CO2 level. Either of these warrant a call to your neuro, the sooner the better.

 

[sadiemae]

Another med is Mirtazapine. It is an antidepressant, and when taken at a low dose(7.5mg) it helps with sleep, and helps to stimulate the appetite. In higher doses, the sleep effect goes away. Les has been taking it for a week, and it works great for him. The amytriptiline didn't help for sleep with him.

 

[joni51]

I am certainly going to write these things down to take with me. Thanks all!

 

[Phil M]

Lack of good sleep makes the fasics worse too.

 

[Gail]

I take Baclofen for the fasiculations. I take half the dose in the daytime and a whole dose at bedtime. It helps me sleep. I take Ambien too but it doesn't keep me asleep. The Baclofen does. I am on a vent so I don't have BiPap issues.