[acv]

Hi - first post, but not first visit. Mom (who has ALS) was taking 10mg Baclofen a.m. and 20mg p.m. for leg spasms. Was ok for approx 6 months. Spasms came back at night- really severe - Mom's now taking 200mg Quinine at night. Reduced Baclofen to 10mg at night. It's been approx 5 days and she's noticed more strength in her neck muscles (she wears neck brace most of the time). My question is to those who have bad night spasms and may have used either of these meds. Is anyone using both meds? Does anyone just use Quinine and remain spasm free? It'd be great for Mom to get even more strength back by quitting the Baclofen... Thanks! Really! This site has been so helpful!

[♥ Al]

Hi acv. AL again. I took Baclofen when I was first diagnosed in oct 2003 and after a while it didn't seem to be working and I had read about Quinine at 300mg and asked my doc about it. I started taking it and gradually weaned off the Baclofen. For about a year and a half I have been cramp free and just 3 weeks ago they started up again. Once again I talked to the doc about the Baclofen and he said start with one a day and see if it helps. Took that for a couple of days and needed another half pill in morning. Still crampy so I take one at night and one in am and that seems to help night time cramps. Legs still cramp when I sit at the computer for a few hours though. So I'll go to bed shortly to stop the cramp in my hamstring that I have now. By the way doc said cramps coming back is just progression of muscles wasting. Hope this helps. AL.

[Barbie4]

Thanks for asking your question about night spasms and cramping.
My friend just this week, has been complaining about her legs jerking in the night and keeping her awake. It has really messed up her sleep. I will give her the info that you and AL have talked about. I don't think she is taking Quinine yet.

Have a good day to both of you.

Barb

[SoniaT]

Hi everyone,

Just wanted to let you know that my mom (who had ALS) took between 200mg to 300mg daily of Gabapentin (also called Neurontin) for her spasms and cramping. I don't have ALS but I take 2400mg a day for restless leg syndrome.

I hope this can help someone.

Take care everyone,

SoniaT
Vancouver, BC

[acv]

Hello - Thanks so much for responses. The 'in theory' opinion is nice, but reality is a little different - thanks for sharing your experiences. I guess we'll stick with the program for now as Mom is finaly getting some sleep at night.
Al: we've discovered that every time the spasms start up again, she's left with a new 'progression'. Mom (and us too!) get discouraged when they start up, 'cause she knows something won't work right once things calm down... One day at a time - right?
Sonia: the Neurontin wasn't recommended for her because it may affect breathing ability and Mom has pseudo-bulbar - can't swallow anymore (she's using a PEG) and they don't want to aggravate her respiratory condition. But Mom could have used that before as she has always suffered from restless legs.
Barb: Mom's legs were jerking too - kept waking her up- but I think baclofen is usually the first med. prescribed ...
Take care all

[SoniaT]

Hi ACV,

I'm sorry I couldn't have been of more help to you. My mom also had pseudo-bulbar and had great difficulty swallowing, so I know where you are coming from. I hope you can find something that works well for her comfort as well as yours as I'm sure you are worried sick.

Hang in there, I think the greatest gift you can give to an ailing parent is to be there for them.

Take care,

SoniaT
Vancouver, BC

[acv]

Thanks Sonia
My Mom is currently in hospital, she's stabilized, but she's waiting to go to a long term care facility as its all gotten to much and we can't provide 24hr support. She misses going online very much (this site is one of her favs) but she thanks all for your responses and good wishes.

[♥ Al]

Hi acv. Sorry about your mom's deterioration. Any way you could take a laptop into the hospital once in a while so she can stay connected?