Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

I am pretty sure I've seen a post about baclofen but I don't recall what was said. I know a lot of you take it.
I was given baclofen and it worked really well. My TN pain was so much better but I had a terrible reaction to it. I had very bad shakes/jerks, almost a foot wide (not sure I'm phrasing that correctly). My hands would slam down on my desk or in my lap when I tried to hold my hands up. And I also had electrical sharp pain in my hands down to my finger tips. It was extremely painful. I couldn't touch or pick up anything without the electrical pain.
I could not find the jerks listed but did find tremors. I don't define tremors like that. And I couldn't find the electrical pain listed but I did find reference to CNS symptoms. It was definitely nerve pain. It was like having TN pain in my hands and fingers.
I also had breathing issues but I'm not sure if it was my heart or lungs. I felt awful and I felt something in my chest.
It cleared about two days after I stopped the medicine. For whatever reason, I thought I would try it again. I took a half pill this morning and I felt the same thing, smaller jerks, some pain and an awful feeling in my chest. I guess I wanted to relieve some of my pain and wanted to be sure it was the medicine.
Has anyone had anything like this?
Liz

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Comment by Liz K. on October 5, 2010 at 12:57am
Hi Erin,
Thanks for your post. A lot of people are on it. I sure hoped it would work. And it did but the side effects were terrible. I don't understand how the nerve pain in my hands were so bad but in my face it worked. But my test with the small amount proved it was definitely the baclofen. I would have increased it again but my breathing was so affected. Maybe the doctor has something else he can try.
Liz
Comment by Erin on October 4, 2010 at 10:27am
Oh my Liz...that is scary! I am on Baclofen 40 mg but haven't had such dramatic side effects...i almost feel it is doing nothing. I wish you well. :)

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