night spasms

[ronwv]

my mom says that every night, after about 2-3 hrs sleep, her arms(forearms) tense and draw up toward her chest.
Then her legs will start.
She has to force them back down to ends the spasms, then can hardly sleep he rest of the night.
Any experience with a similar situation? any ideas on what may help?

 

[BethU]

Ronwy ... I have had the same experience with my hands and feet. Usually in the middle of the night, my foot will start to pull back toward my shin. Very painful! If I try to straighten my foot up, it will start drawing backward (or sideways) toward the back of my leg. Once it happened in both feet simultaneously. I discovered that if I get out of bed and put weight on my feet, the spasm will stop. It has happened during the day, also ... and I am really afraid of its happening when I'm driving.

On my hands, occasionally my left hand will cramp and pull down and back to my arm. I have also had individual fingers do that, too ... . So far, I have been able to pull my hand or fingers back in position, and that releases the cramps.

I don't know what these things mean; I always figure they're a preview of coming attractions, but I don't know if it's possible to prevent them.

I believe others have mentioned this on the Forum, and there might be some good answers if you do a search. Hopefully, someone with more knowledge than I've got will provide you with more info.

In my case, these episodes lasted several months, but I haven't had any recently.

Good luck.

 

[Al]

Hi Ronwv. A lot of people get cramp relief from Quinine or Baclofen. I use both and have no cramping. Quinine can be bought in some states OTC and others it is prescription. GNC stores sell a product with Quinine. Baclofen is prescription.

AL

 

[CindyM]

Hi Ron-Al is right. Without quinine I would not be able to function. I have the same issues you mentioned at night but only after I over-did it druing the day. I used to get these cramps during the day all the time, but the quinine holds it down.

 

[Al]

Check www.gnc.com and type in leg cramps in search. They have mail order if no stores near you.

AL.

 

[kelly]

My hubby is on baclofen and gabapentin sems to help with the night time pain, Definitely stressful to wake up in pain. Take care. Kr

 

[ronwv]

Thanks all.
I'll pass this along. This is a great help for one of her most pressing issues right now.

 

[CindyM]

Thanks for the tip about the over the counter supplies, AL. I am getting ready to go to see my family for a few days and I am afraid my new prescription will not come in before I leave. I cannot imagine a five hour plane ride without quinine!

 

[ronwv]

well, Doc says he doesnt like Quinine. Wrote a script for baclofen but really didnt want too. The reasoning is its a muscle relaxer and doesnt want anything to weaken muscles even more. He dismissed quinine right away. My mom is trying magnesium supplements for now. Maybe its not bad enough yet to force the issue. Id think sleep would be paramount.

 

[Al]

So if Doc doesn't like Quinine tell him not to take it. How much experience has he had with it? How much experience has he with ALS? If it might work for your mom he should let her try it.

AL.

 

[paula-jane]

Hi Ronwv,

It's a shame to hear a doctor say something like that. Just curious.. is the doctor an ALS specialist? Most doctors familiar with ALS will explain the drug to you as pros and cons and let the patient with ALS make the decision. I don't think it's respectful for anyone to deny someone with an illness such as ALS the chance to cope with their symptoms. Again, most doctors with ALS experience will be doing what is right for the patient. Personal and professional opinions are two different things.

Both Quinine and Baclofen can help to get the spasms under control... the spasms can become so painful and the stress related to the spasms and the resulting lack of sleep is NOT good for PALS. It is a medical fact that stress can lead to illness and injury and that's a dangerous thing for PALS. Neither drug is going to cure her, but, they sure do help PALS cope better. Yes, they are muscle relaxers... but that is when physio usually comes into the picture. What's the worst that can happen? They don't work for her and she stops taking them.

As a caregiver, it is very important to understand and anticipate the next step for your PALS; where the disease is heading... it's much easier to advocate for your loved one. This forum is the perfect place for you to gather your questions and take them to the doctor for answers. Don't be afraid to politely challenge an answer from the doctor that does not sit well with you.

Good Luck!
Paula.

 

[Jennifer51]

Hi ronwv....I would agree with baclofen being a muscle relaxer...The dose I was given wiped me out, no strength left at all, so I reduced it to where I get the benefit but not the extra weakness. I understand reducing it should be done slowly to prevent more side effects...also Quinine...It has been said before by many, if you dont want the pills for quinine...drink it ...it is in a good quality tonic water....I drink it all the time, dont like it, but I drink it mixed with orange or some other drink...very rarely get cramps any more.

 

[brooksea]

Does Canada Dry Tonic Water do the trick? I looked it up on Wiki and supposedly the FDA limits the amount of quinine in tonic water in the US. Just wondering how much one would have to drink for benefits.

My husband asked for something for muscle cramping and spasms at the last clinic and was told that "they" have found that nothing is really effective in pALS. So, we went to GP and got a muscle relaxer. Not really a good solution.,

 

[ronwv]

i read that it would take gallons of tonic water to get a therapeutic effect. Im sure its better than nothing.

My moms neuro. is supposed to be the most familiar with ALS in the area. Is there a list of ALS docs avail.?

 

[Al]

If you go to www.alsa.org they have all the clinics etc. set up by state. You should be able to get information there.

AL.