
Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.

deleted_user
This is my first post in the MS Support Group looking for input. I'm a great one for sharing my experience and information, but not asking. I'm hoping it will get easier for me to ask. I have been figuritively holding my breath since my dx. Here goes... I am very sensitive to meds and take reduced doses. Months ago I started taking Baclofen for spasms and stiffness, titrated at 5 mg, 5 mg, 10 mg daily. I almost always missed the mid dose. The spasms really began to escalate and I finally conceded to taking a higher dose - (10/5/10). The spasms and stiffness continued to worsen, went to 10/10/10 and then 10/10/20. Two days after the last increase, my body was in what felt like one big spasm from head to toe, I had a screaming headache, and I was in pain (I have a high pain threshold). My whole body was hot, like a layer of heat under the skin. My housemate called my primary and he said come right in. I went outside and rubbed snow on my arms and the back of my neck and on my face. (I'm not going to tell you that I stood in the snow barefoot because it sounds too crazy.) To shorten this already too long story, he did an exam, stat blood work, we discussed the med change, and he told me to stop taking the Baclofen and see what happens (to call if I got one iota worse). I was in tears and could hardly walk one step in front of another for the pain.
It is two days later. The headache gone. The pain gone, the feverishness gone. I am walking better than I have been in weeks. The spasms reduced by 80% or more. I can not believe the difference.
I believe Baclofen is a fantastic medication and I am shocked that I had the reaction I did. To have worsening spasms and stiffness from a med that treats the same - I never would have connected the two (that's why I love my doc). This is not a diss of Baclofen. I would like to know if anyone else has had this type of reaction to it, or to higher dosing. Be well.
It is two days later. The headache gone. The pain gone, the feverishness gone. I am walking better than I have been in weeks. The spasms reduced by 80% or more. I can not believe the difference.
I believe Baclofen is a fantastic medication and I am shocked that I had the reaction I did. To have worsening spasms and stiffness from a med that treats the same - I never would have connected the two (that's why I love my doc). This is not a diss of Baclofen. I would like to know if anyone else has had this type of reaction to it, or to higher dosing. Be well.
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I was prescribed Baclofen upon diagnosis in 2007 and decided, after a couple of months, that it was really doing anything. In the last month, I started having more severe difficulties with stiffness and so I started back on the Baclofen and now take a 10mg pill 3x's a day.
It makes me a bit drowsy and I get occasional headaches, but so far, it does seem to help.
I worry a lot about dependency, and the reason I like this particular subject matter because it will help me figure out if it's helping or creating problems.
That's terrible what happened -- it sounds almost like an allergic reaction. Glad you figured it out right away and hope you will find something that will work for you.
After my dx I was prescribed 30mg daily. After 4 years I went up to 40mg. But here is the thing...I sometimes forget to take the 2nd dose and I seem to function better.
My neuro explained to me that taking too much does away with the needed spacity to walk.
I wonder sometimes if it stops working for you after so many years.
luv
heather
This way I can at least tell my doc I Tried one.
Hope you get everything straightened out ......... Good luck
i think they are very similar-all three--i take baclofen and tizadine--i had to keep incresing tiz. to stop rls--M
maybe grabbing at straws=but i am beginning to wonder if these drugs are making my symptoms worse--
i plan on getting something else for rls--
any suggestions
When I posted last I was very scared, it took me forever to even finish the post, my whole body was shaking and jerking by that time.
I went to lay down, felt this burning inside my body, diagonally between my hip and belly button on the right side.
Then my legs started spasming and shaking.
I NEVER had an event like this before in my life, the ONLY thing different was taking the baclofen. Food was the same, activity was the same.
LDN got rid of my RLS for the most part, when I'm really fatigued it comes back slightly. But what happened last night makes RLS look like a picnic.
I didn't think I was going to wake up today