about Baclofen

[candy158]

Hi guys, sorry it has been another while since I was on.  But, question for you, I just got back froma Physio appt. (Dr.??) I believe, and he did a check up on me, and said that the Baclofen is NOT for spasms of the muscles, and that I should not be taking it, or the Flexeril either?   Was wondering if any one out there has ever been told that. I was told that it is for the muscle spasms and shudders ( as I call them) , but he said NO, and that it could be making the spasms worse..

He has never seen me before, and that was his findings, and he also said that it could be affecting my balance ( 10mg I take at night time, or other times if it has been bad) .... and making me feel odd at night.  I told him that it has only happened sometimes that my right leg and hip /knee don't seem connected, and it is like I am stepping onto a jelly leg that has a mind of it's own.  ( sorry if this is confusing) ..... anyways, he said to stop the baclofen and ssee if it gets better..  

So, my question is ..... that is what he said, and has anyone else been told that.  Also, about Zanaflex..... now that one did make me feel weird.  It almost left me like I had be anethesized, would fall asleep really quickly, and time would pass, and I would not move, and never felt rested after 6-8 hours of being in bed.  Anyone had that one before also?

I need something for the spasms, but don't know in what direction to go now.  Am seeing my GP tomorrow, and will present this to her as well, but I wanted to have some suggestions first.  

Thanks guys,

take care, and take care of yourself,
Candy

[jensequitur]

I'm glad I was able to help!  When it first started happening to me, I didn't know what to call it.  I thought it might be dystonia.  My first neurologist thought it was some sort of myoclonus, but he never gave me anything for it.

Last year, I had several myoclonic jerks, and it seemed to last all day, or at least until I took a huge nap.  Previously the jerks had involved my torso and arms, but it was starting to affect my legs too.  And my bladder - one of the episodes made me wet my pants.

I described the problem to my new neurologist.  I'd already told her about how my legs felt floaty and weird, and how in the morning my legs would tense up.  Not spasticity, but any movement in the morning made every muscle in my legs tense.  When she heard about this, she said that she's not enthusiastic about giving her patients more drugs, but this was important.  She prescribed Keppra (levetiracetam) which puts a damper on ion channels, and makes them less excitable.

The way I understand it, lesions in the spine are overexcitable, and send out bad signals. These signals in the spinal cord go along ion channels.  An 'improper' signal will reinforce itself and strengthen these ion channels.  So every time I had a myoclonus episode, the ion channels got stronger, and the episodes got worse.

The Keppra is wonderful.  I take one in the morning and one in the evening, and it's really improved my quality of life.  For a year, my knees felt almost normal.  I could get up in the morning and not have to wait out that debilitating straightening of the legs.  (Another form of clonus!)  And most importantly, I didn't have to call in sick because I was having myoclonic jerks.

Just recently I've started to have problems again.   I'm not sure if it's progression, or just because I'm not feeling my best because of the appendectomy.  I don't know what the upper limit is on the medication - my neuro seemed to think that two a day wasn't too much.

[candy158]

lol ..... Sumanadevil.... glad this helped you too...LOL

[Sumanadevii]

Now isn't this interesting!!!  I was just about to call my neuro to up my Baclofen to a stronger strength.  I now have a name for what is happening to me ....myoclonus.  I just looked that word up and it is exactly what is happening to me.  Of course my husband will have to place the call.  I have no idea how to pronounce that word..lol

[candy158]

Thanks guys, it all is going to my Dr. appt toomrrow.  I don't intend to see the physio guy again, it was a total waste of time, I believe..  

I do take the Baclofen sometimes 3 times in a day , depending on the day), but it is still 10mg. each time.  

It does seem to help with my right side, which is my worst.

Jenequitur, thanks for your into..... I have the "shudders", ( I don't really know how else to describe it), my MS nurse called it "violent movements", and then went to the Neuro at the clinic, and that is when the Zanaflex was given, but when it proved not to be helpful, they never came back with another drug to help.  So, thanks for the info on Keppra, I will look into that tonight.

Thank you everyone, Bob, I don't know if it is spascity or spasms, as they don't really tell me, but they see what is happening, and they seem to try and treat me that way, I don't know, have to be more interactive with them, but sometimes, I feel like I and hubby are the Dr's, and they just write the prescriptions.  

I call it spascity because of the stiffness, and lack of movement, or ability to move properly, and the spasms, as more like the MS hug, it hopefully will only last for a short time, and sometimes will take a few days to get better, but the other, does not seem to be better.

Thanks again,
Candy

[jensequitur]

Oh, and another thing that might be confusing the physio.  Some established 'information' says that spasticity helps people with weak legs, as the spastic muscle keeps the leg from being too jelly-like.  However, I think more recent studies have indicated that this idea is false - spasticity doesn't help people with weak legs move better, and in fact has the opposite effect.

[jensequitur]

I think maybe your physio got his wires crossed.  As everybody has said, Baclofen is definitely for the spasms/spasticity.  In fact, Baclofen helps to keep my spasticity manageable, and Flexaril is when I have a spasm.  My doctor

However, it's not for the 'shudders.'  Are you getting some involuntary movement of your torso?  I get myoclonus of the torso, and it's caused by the lesions in my spine.  I'm not sure how your movement manifests, but when I get a myoclonic 'episode' I have a weird tingling in my torso, which then turns into a big jerk of my spine.  

My neuro prescribed Keppra for me, which works kinda like Benadryl - it suppresses the myoclonus, although some days a small one breaks through the barrier.

[Lulu54]

From the National Institue of Health's website
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682530.html


"Baclofen acts on the spinal cord nerves and decreases the number and severity of muscle spasms caused by multiple sclerosis or spinal cord diseases. It also relieves pain and improves muscle movement."

I know all of this is confusing - I hope it helps and your doctor tomorrow will either understand the drug or do some basic research.

best, Lulu

[COBOB]

Baclofen is for spasticity, not muscle spasms.  There is a difference.  Baclofen doesn't effect the muscle, but it effects the spinal and supraspinal nervous system signals that are sent to the muscle.

http://en.wikipedia.org/wiki/Baclofen

Cyclobenzaprine (Flexeril) is a muscle relaxant medication used to relieve skeletal muscle spasms.

http://en.wikipedia.org/wiki/Flexeril

So I'd say he is half correct.  The question is: Are you having muscle spasms or spasticity?

Bob

[NinjaMedic]

Hey Candy,

I was curious as to what he thinks Baclofen is used for? I have a very good friend that was injured 4 different times by IED's in Iraq and Baclofen is the only thing that helps with his back spasms. His back is broken in 4 places and the cause of this spasms. I have read that Baclofen can cause worsening muscle rigidity. Usually this is only seen during a withdrawl type of scenario.  My opinion on medications is how it make the patient feel.  Does it benefit you?  Do you feel worse?  Maybe you feel no difference.  It's also key to weigh the benefits/risks. Maybe he's the type of doc that does not care for Baclofen. If you do stop taking it just be careful!

Elissa

[anon07072023]

I think he's mistaken, because Baclofen does help with spasms - and also stiffness & spasticity.  I definitely can't see how Baclofen would be making this worse for you.  Plus, 10mg is a very low dose. I'm on 60mg a day, with no problems.

My experience with Tizanidine (Zanaflex) was negative, too. It made me feel like I had a hang-over or the flu or something - just not like myself at all. I only took it for a little bit and then asked my neuro's PA for something else.  

Take care,
Kelly