Twitching

[Chincoteaguer]

Many posts have addressed the issue of twitching and my PALS is now asking me to get feedback from you all about twitching and what can be done.

She is especially interested in why her twitching starts about 2 hours before she falls asleep and not during the day. I suspect it is because she is more relaxed.

She takes Tylenol at bedtime but my daughter wants her to try cannabinol and other M derivatives.

Thanks in advance.

 

[KarenNWendyn]

There really isn’t much that can be done to stop the twitching, to my knowledge. Benzodiazepines such as Ativan relax the muscles and decrease any anxiety or emotional reaction associated with the twitching. CBD oil and THC probably also have a beneficial effect for similar reasons, but there are others here who can probably comment on that.

 

[KimT]

For me twitching is increased with caffeine, stress, and overdoing it. It's always worse at night. When I first wake up, I usually don't feel any twitches. When I start to use my muscles, it starts up.

I take lots of CBD oil and that calms my mind so I don't think about them or even notice them.

 

[Cherise77]

My Dad just starting taking Cannibas oil and so fat he thinks it’s helping with twitching.

Does anyone else have positive results from long time use with cannibas oil?

 

[Chincoteaguer]

Kim/cherish

Daughter brought cannibas stuff today. Oil, ointment, and capsules. Will rub ointment on her painful hip and give her a couple of drops of the oil just before bedtime.

Also got a Salonpas patch at the advice of our newest caregiver

Hoping theses remedies help.

 

[Chincoteaguer]

Gave 2 drops of the CBD oil to my wife at 7pm. Went to bed at 10:30. A little restless at first but my wife went to sleep and did not wake up until a little after seven am. Haven't slept this good in several weeks. My wife's words: "It knocked me out". Of course I got a good nights sleep too.

Is it normal for CBD to have this delayed reaction or was my wife under its influence but still awake to watch her Netflix?

Neither of us were exposed to drugs like M so we are real novices.

Described this to her ALS clinic neurologist and he was supportive. He advised us to keep taking the stuff.

He also wanted to know how I found out about CBD. Told this forum. He asked for the link to the forum and I got the impression he would be discussing this drug with his other patients

 

[KarenNWendyn]

I think CBD does have a calming effect and some folks (including myself) find it useful as a sleeping aid. I know it has also helped my mood.

THC has an even stronger sleep-producing effect. It does cause dry mouth, which for me is extreme (I mentioned this in another thread), so I’m still figuring out how to work with that.

A lot of us were drug virgins going into this. When you have a life-threatening potentiality painful disease, anything that helps is a godsend.

 

[wishmobbing]

Happy to hear about the quick and good results with CBD oil!

 

[Chincoteaguer]

Twitching has been less the past few days. Sleeping is also better. I'm hoping this is a result of several things we've done.

We resumed taking supplements. During the Kidney infection and stone stuff Dr. Did not allow supplements.

We added Magnesium. Twice a day. Also started Tylenol PM at bedtime rather that regular Tylenol.

CBD oil is taken 4 times per day through the tube. We also add more under the tongue when requested.

We have a much stricter schedule for feeding and taking meds. Every thing at the same time every day. This includes at least 50 ounces of water each day.

Bedtime is also on a schedule. 9:30

Thank you all for your input

Ernie

 

[KW1234]

Try a low glycemic diet. I found sugar aggregates twitching. If you are eating a.sugary dessert it might be why twitching increases

 

[Chincoteaguer]

Thanks for your input KW.

Sibyl is fed through the tube. Her only nourishment is Jevity.

She does take crushed ice made from water and sometimes made from frozen coke.

I also give her a fruit ice cycle occasionally.

 

[KimT]

Ernie,
Have you tried Liquid Hope or some other natural formula that doesn't have corn syrup as one of the main ingredients?

 

[KW1234]

Jevity has a high sugar content. Try kate farms

 

[Chincoteaguer]

Haven't tried alternatives to Jevity. Since this is her sole source of nourishment and recommended by home care I did not want to deviate.

For now, twitching is under control.

I am saving all the suggestions should the problem of twitching return.

 

[Nikki J]

Jevity is the standard first line for ALS I think. If she likes it, tolerates it, feels well on it great

A lot of PALS either don’t tolerate it ( my sister did not) or have concerns about the sugar etc and opt for a more food based option like Kate farms mentioned above or other food based feeding. Whatever works, is affordable and comfortable for you both!