Hi, I started taking Baclofen a while ago for night time spasms and it made a massive difference to my life, I never realised how much I was affected until I started getting some proper sleep! I started on 10mg which worked for a while and then the spasms returned. I’m taking 20mg now which, again, worked to begin with but I’ve been much more tired again and my husband says that my leg is spasming while I’m asleep which would explain it.
My question is, will I get to the point that I find the right dose or will I just have to keep increasing it every couple of months? When it works it’s so great and I feel like a different person. I realise that I’m still on a very low dose so hope that there will be a point that I get the right one.
I now take 3 x 10mg tablets a day, which as you’ve said has made a huge difference to my leg spasms so I get a good night’s sleep. My dose has also been increased one tablet at a time, started taking them about a year ago.
I think I was told it’s still a low dose so ye,s you may be advised to up the dose slowly to about 7 tablets a day till you get the optimum level of relief. Don’t increase it without your GP or Neuro/MS nurse knowing though. Have you had a kidney function test? I understand Bacolfen can cause problems.
I have got steadily weaker in both legs, which I put down to Baclofen, but the Neuro doesn’t seem too concerned yet.
I’m about to start Baclofen and my biggest worry is even more weakness to my legs.
The main reason for starting Baclofen is tightness and heavy legs, especially first thing in the morning.
I should of started on the tablets last week but because I was also starting on Amantadine the neuro didnt want me to start them both at the same time, so I started the Amantadine first but I dont think its fully agreeing with me because an hour or so after taking it I feel a bit odd and my legs are more jelly like.
So I’m now considering stopping the Amantadine, then waiting a few days before trying the Baclofen ?
I’m coming to the conclusion that I dont tolerate drugs very well, because I had to come off Carbamazapine a few months ago after just a few weeks.
That’s great, thank you for your reply! The MS nurse said to keep increasing until I find the right level, I was just worried that I’d keep increasing and the spasms would keep returning after a while. Nice to hear from someone who’s done the same thing. I do think the weakness in my legs has increased but assume that’s because they’re not getting a nightly workout! Given the choice I think I’d go for weaker legs and more alertness than better legs and being tired all the time.
Before Baclofen I tried Clonazepan which worked but completely knocked me for six the next day so I could only use it at the weekend when I didn’t have to get up. After that I was really wary about taking something else and it took me ages to take the Baclofen but I’m so pleased that I did. If the tightness and heaviness in your legs is due to night time spasms you might be surprised at what a difference it makes, I never realised how much my quality of sleep was affecting my life until I took Baclofen.
Of course all drugs affect people differently but if you start on the lowest dose of Baclofen it should be a good indicator of your tolerance. I think it might have affected my legs a bit because they’re not getting the night time workout they had with the spasms but I would definitely say that, in my case, it has been totally worth it.
My problem with walking is these surge/jelly/ tremor like sensations in my thighs, it sort of feels like I’m about to topple over so my concentration whilst walking is immense.
I’m on Gabapentine to try and settle these sensations down, but in all honesty I dont really feel there’s any improvement.
In fact theres a possoibility that it’s making them worse, but itsso hard to tell if its the meds or the actual MS.
Getting back to Baclofen I think I’ll first try bit at night to see how my legs are first thing in morning.
I’m not kept awake at night by spasm’s or twitching ect, it’s just that at first thing in the morning when I try to get out of bed I walk like a robot because things are so tight and rigid.
Then sometimes through out the day I can feel my legs tightening and getting heavy.
I take both Baclofen and Cloneazepam. I’ve been on Baclofen for years, and for a long time was at the maximum dosage of 80mg per day. Then I started Cloneazepam and have reduced my Baclofen as a result. Spasming legs is no fun at all. But as others have said, start Baclofen slowly, increase very slowly and watch out for weakness.