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Re: muscle spasms

PostPosted: Sat Jan 09, 2010 9:05 am
by marieke
Neurontin is not really used for muscle spasms, though it can help a little. You may want to ask for baclofen to help out for this.

Re: muscle spasms

PostPosted: Fri Mar 26, 2010 2:38 am
by wilky50
I`m not clear on what will work best for me?
My legs seem to temporarily cease up, after a few seconds I can move, but when I am in bed and go from a sideways position to a laying down position, if I don`t straighten out slowly it affects my whole body and it takes me a while to actually straighten out.
What would work to combat this? when I read other peoples comments I am curious as to what is best for me or will it be like the pain killers, trial and error? there are so many different types of things people are using!
I`m also struggling to get the pain relief correct even though I`m now taking the medication as prescribed, I don`t think the strength of the pain killers is right and I am sometimes getting some bad pains in my spine.


Re: muscle spasms

PostPosted: Fri Mar 26, 2010 1:52 pm
by marieblond
straighten out was dificile at me too. I had an "electric" feeling throughout the full body. and the legs vellicated as when a chicken dies... it became better, very slow - but it did. ;;)

Re: muscle spasms

PostPosted: Tue May 18, 2010 8:11 pm
by Suerdlagpunga
I am about four weeks into the new TM life. i dont type very well so pls forgive the shortcuts.

i am not in a wheelchair or a respirator or reauiring catheterization, so i am counting my blessings.

i go into spasms wher emy back arches hard for 10 seconds or more, then the stomach, then the legs and buttocks. i was taken by ambulance the first time it happened when i was first told this is tm and not your multiple sclerosis i already have.

as associate proressor of economics at an engineering school, i see my life slipping away.. i go into spasms whenever i talk for very long, and my hands are almost too weak to type. i cant seem to get anything done. i have a paper already for submission to a journal but cant seem to get it submitted. i am too tired after a few hours woe work to do a=very much.

i asked my neurologist what the prognsis is and he said, qouting, "dont worry, you'll be just the same! or better."

what is the prognosis? and will i ever get my vigor back?


Re: muscle spasms

PostPosted: Wed May 19, 2010 7:19 am
by marieke
You were diagnosed with MS before? Then you having TM is very unlikely, it would be a new MS attack.
Are you on medication for your MS? Meds to prevent/slow down the attacks?
For the spasms you should be on baclofen and/or Zanaflex.

4 weeks is still very early, and it seems that you have conflicting information as to what you actually have (MS vs TM).

Re: muscle spasms

PostPosted: Wed May 19, 2010 11:24 am
by Suerdlagpunga
Thank you for your generous inout.

If this is MS it is a peculiar MS since it attacks both sides equally. It took me out completely from the thoracic on down. And NS doesnt do thaty, right? And this came on fast afyrer a backache the night brfore and i dont get bachaches because it is all fused down there. it was a fast coming ache coming on in minutes. the next day i was taken by ambulance ti thr emergency room when my whole body went into spasms that would not quit. afyer injections i began to relax but the spasms came again the next day. So now they come every day,. The NS was never lije that. MS hit only one side. But this makes both sides tired equally with my hands hurting and my going into spasms all the time.

here's another thing that when the spasms start, i begin to feel euphoric for a while, as though i wwere out of this life and flying above it. And i think neither MS or TM is known for this thing. it is more like epilepsy, where the person geels euphoric just before a grand mal.

and i dont understand why i seize up from trying to talk. i have to stop talking or the spasms totally take over.

thanks for your kind input.

Re: muscle spasms

PostPosted: Wed May 19, 2010 11:51 am
by marieke
You are right, it doesn't sound like MS or TM really... it would be easier if you could get a brain MRI, but that is out I suppose. You could try for a CT scan to make sure there is nothing wrong or obvious in your brain.

Have you had a lumbar puncture? That cold help diagnose MS and possibly rule out other infections.

Re: muscle spasms

PostPosted: Wed May 19, 2010 12:32 pm
by Suerdlagpunga
Thank you for replying so quickly. this is a really a lifeline for me. i live in the united arab emirates. for locals they just fly them to france or germany for a work-up. but that doesn't go for expat workers here.

the drs here have me on lyrica, 300 mg, 2x per day; and Epanutin, 100 mg 2x per day. but the spasms break through at times. i can feel them coming on becaise there will be a kind of tingling along the back or shoulder muscles just before the spasm. after a few of these all-over body spasms, im seeing stars.

the lumbar puncture is out because all those vertebrae are fused up so no place to get a needle in.


Re: muscle spasms

PostPosted: Wed May 19, 2010 12:36 pm
by marieke
Both those drugs are used for pain and not very good on spasms. Ask for Baclofen (lioresal) as a firts-line drug for them, and Zanaflex (tinzanindine) if you need "extra", if the baclofen isn't working enough at the higher end dosage (100-120mg a day).

Re: muscle spasms

PostPosted: Wed May 19, 2010 1:54 pm
by timu

I just have a question.
Why do you suggest baclofen first and zanaflex as the "'extra" if needed?
Is one safer than the other or is baclofen typically more effective?



Re: muscle spasms

PostPosted: Wed May 19, 2010 1:57 pm
by marieke
Because Zanaflex is much stronger at lower doses and takes a lot longer to adjust to AND it is "harder" on your liver. When you are on it you need to have your LFT's checked regularly.
The side effects are stronger too (fatigue, blood pressure drop, syncope..). It is great for a nightime dose if that is all you need. I take it 3x a day and it took a long time time to get to the dose I needed.

Re: muscle spasms

PostPosted: Thu May 20, 2010 5:30 am
by timu

Thanks again for the great information. I just sent my Dr. a copy of the pkg insert [I love the Web] and asked her about testing my liver function.
We did not get a baseline before we started but I have been taking 2mg 3x/day for close to a month.
I am weening off the baclofen because of the severe dry mouth side effect.{ I just take 10 mg in the morning]
Do you take a much higher dose? I did not really build up to this dose I just started taking it with my Gabapentin.
I guess I have to start reading these package inserts much more carefully again [if my Dr.s and pharmacists are not going to it]

A related question is...I take 3,000 mg of gabapentin in 3 doses a day. I think I read you might suggest taking this over 4 or 5 doses during the day to keep a more constant level.
Have you suggested this?

Right now I take 1,200 at 9 pm, 900 at 5 am and 900 at 1 pm

I think I would switch to 900 at 9pm, 600 at 5 am, 900 at 11 am and 600 at 5 pm
I always feel my best in the morning and by late afternoon I feel much more pain.

I cannot see any reason not to do this other than I have to remember to change my schedule.

Do you think it might be helpful?

Thanks again,

Re: muscle spasms

PostPosted: Thu May 20, 2010 7:53 am
by Sew

I take 2400 mg of Gabapentin in 4 divided doses.
600mg at 7am, noon, 5pm, 10pm or other 5 hour periods ie: 8am,1pm,6pm,11pm. Just whatever suits my schedule.
When I first got TM I was on 3200 mg per day but always in the 5 hour time periods.
I also was on 80 mg of Baclofen to start divided into the 4 equal doses of 20mg each.
I cut the 3200 Gabapentin to 2400 and the 80mg of Baclofen to 40 mg about 5 yrs ago.
The 5 hour periods are sometimes extended to 6 hrs if I forget my time but usually this keeps the pain level more or less constant.
For about 3 years now I take 4 mg of Zanaflex at bedtime too. My neuro told me that the Zanaflex at this amount wears off in about 3 to 4 hours. I found it very hard to stay awake with this med when first starting to use it. I had to work up to it over a period of time.

I have now had TM for almost 7 years.
Heather in Calgary

Re: muscle spasms

PostPosted: Thu May 20, 2010 8:09 am
by marieke
I take 100mg of baclofen a day in 4 doses (20 x3 and 40 at night). I used to take 3600mg of gabapentin in divided into 4 doses, I now take Lyrica 2x a day.

The Zanaflex I take 3x a day, 2mg in the morning and at noon, and 3mg at night. I used to take much more throughout the day, but lowered it in order to help with the fatigue.

Re: muscle spasms

PostPosted: Thu May 20, 2010 9:32 am
by ann
Hi Marieke

How much Lyrica do you take in a day.