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Spasticity/rigidity help Wise, RNs, everyone!

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  • Spasticity/rigidity help Wise, RNs, everyone!

    I was on here a year ago about spasticity. I have tone/rigid, 2x4 straight spasticity. It increases, my baclofen is increased, it gets worse andTizanidine is added 4mg at night, that didn't help so it was increased to 4mg 3x a day. That did nothing but make it worse so after a couple weeks of it my neuro said to get off the tizanidine completely 2mg at a time 3 days etc. Still I'm taking the 20mg of baclofen 3x a day but the stiffness and rigidity increases at night after the the baclofen starts to wear off. Now all the moving that I can do at night is lay flat on my back or if I can reach the bar on the side of my bed I can pull myself over on my right side with my body still perfectly straight.

    I was tested a couple months ago for a baclofen pump but my spasticity barely showed change...at all. So they said that a pump may not work for me, although I could try another pump test with a much larger dose of baclofen with again the same outcome. They said they had never had anyone require a 2nd test.

    Has anyone been tested for the pump a 2nd time and had it work? Did you have success with the pump after surgery? Is there a more effective muscle relaxer in pill form that can be taken at night that would last more than 4 hrs.? The aching and pain when the baclofen wears off and waking up to the realization that I am rigid from my chest down and still can't move from my waist down anyway hits hard at 3 or 4:00a.m. I fear that it will keep moving up my body or effect my breathing.
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  • #2
    So sorry the baclofen pump does not appear to be a viable option for you.

    Have you been tried on Dantrolene Sodium (Dantrium)? It is an older antispasticity drugs, and not used very often now days. Liver function must be watched on Dantrium, but it can be effective for some people. Valium can also be added for its effect. Clonodine sometimes can be combined with these to see if it can potentiate (make the effect stronger) of these other meds.

    Are you seeing a good physiatrist for this problematic spasticity? I assume you are also trying non-medication management such as daily standing, proning, and regular range of motion/stretching exercises.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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    • #3
      No advice Snuz, just want you to know I am so sorry you are not getting any relief. Keep trying everything you can, there has to be something out there that will help.
      Lisa

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      • #4
        Originally posted by Snuz View Post
        I was on here a year ago about spasticity. I have tone/rigid, 2x4 straight spasticity. It increases, my baclofen is increased, it gets worse andTizanidine is added 4mg at night, that didn't help so it was increased to 4mg 3x a day. That did nothing but make it worse so after a couple weeks of it my neuro said to get off the tizanidine completely 2mg at a time 3 days etc. Still I'm taking the 20mg of baclofen 3x a day but the stiffness and rigidity increases at night after the the baclofen starts to wear off. Now all the moving that I can do at night is lay flat on my back or if I can reach the bar on the side of my bed I can pull myself over on my right side with my body still perfectly straight.

        I was tested a couple months ago for a baclofen pump but my spasticity barely showed change...at all. So they said that a pump may not work for me, although I could try another pump test with a much larger dose of baclofen with again the same outcome. They said they had never had anyone require a 2nd test.

        Has anyone been tested for the pump a 2nd time and had it work? Did you have success with the pump after surgery? Is there a more effective muscle relaxer in pill form that can be taken at night that would last more than 4 hrs.? The aching and pain when the baclofen wears off and waking up to the realization that I am rigid from my chest down and still can't move from my waist down anyway hits hard at 3 or 4:00a.m. I fear that it will keep moving up my body or effect my breathing.
        Snuz, I am sorry to hear this and am not sure what to suggest. This is the first time that I have heard of somebody who does not respond to intrathecal baclofen. How much sensation do you have in the area that you have the spasticity? I am thinking that you don't have dystonia rather than spasticity. This may explain why you are not responding to baclofen.

        Wise.

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        • #5
          Tone and spasticity can cause aching and pain?
          Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

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          • #6
            Still trying to find answers to the spasticity. Twice this week I have gone to sleep at 11:00p (with the help of a Tylenol PM generic and my usual 300mg of Gabapentin and 20mg of Baclofen) I woke up very rigid again from the chest down and had mild pain like my body, touching the mattress, was covered in bruises and some burning on that area too. I've been in a wheelchair parttime for 6 yrs. I still have some feeling to the touch but haven't been able to move my legs at all for acouple yrs. except I can wiggle a couple toes on each foot sometimes. I'm 15yrs. into MS, the last 5 in secondary progressive. About 80% of my spinal cord has been effected by MS.

            I just don't understand why the spasticity is not too effected by any muscle relaxers and why oral Baclofen works some for about 4hrs. but intrathecal baclofen directly in my spinal cord doesn't work at all!

            Wise, do you know why Baclofen doesn't come in a Time Release?

            Anyway thanks for letting me ramble. And thanks for all the replies
            "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

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            • #7
              Snuz, I wish like anything that I knew something to suggest or had something to offer besides heartfelt empathy. MS in the cord is terrifying and nights are the worst, for all kinds of reasons. I hope and pray that a med or combination of meds will be found to help you soon and that you'll be able to get some real rest and relief.
              MS with cervical and thoracic cord lesions

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              • #8
                Originally posted by november View Post
                Tone and spasticity can cause aching and pain?
                On the HSP/PLS support group I'm part of, we run about 50/50. Half of us get high amounts of pain from spasticity, and the others get none. There doesn't seem to be a lot of middle ground.

                Plus, there is the secondary pain... spastic but weak muscles pulling on joints in all sorts of unhealthy ways causes everything from chronic tendonitis to bad joints and bad backs for those who are still ambulatory.

                I am sorry to hear of your situation, Spuz. I was a functioning insomniac before they got my spasticity under control at night (with Tizanidine, in my case). I hope they can at least get you some decent sleep!

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                • #9
                  When is rigidity bad enough to go to the ER?

                  Hi all,

                  Just checkin in. I have spent the last few nights so rigid from the chest down that my husband had to come in and move me. I requested some Valium at night but called my neuro's office twice over the past 10 days...and nothing. When the usual drugs don't work well and even a Baclofen pump doesn't work...what then? I have scoliosis and can feel my ribcage being torqued.
                  "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

                  Comment


                  • #10
                    Originally posted by Tokahfang View Post
                    On the HSP/PLS support group I'm part of, we run about 50/50. Half of us get high amounts of pain from spasticity, and the others get none. There doesn't seem to be a lot of middle ground.

                    Plus, there is the secondary pain... spastic but weak muscles pulling on joints in all sorts of unhealthy ways causes everything from chronic tendonitis to bad joints and bad backs for those who are still ambulatory.

                    I am sorry to hear of your situation, Spuz. I was a functioning insomniac before they got my spasticity under control at night (with Tizanidine, in my case). I hope they can at least get you some decent sleep!
                    I concur with the above. I have PLS...and I get a high amount of pain from spasticity...have not found an answer to managing it. Hope you find some relief
                    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

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                    • #11
                      Finally got ahold of the neuros office

                      They finally called me back about something more for spasticity. I asked for Valium only to be taken at night. They said they would rather have me try Zanaflex first, even tho I already had tried Tizanidine 4mg (the generic of Zanaflex) up to 3X a day and it did nothing at all so spent a couple weeks titrating up then a couple weeks tapering back off. Now I get to titrate some Zanaflex!!! Whoopie!!!!!
                      "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

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                      • #12
                        Oh Snuz, the frustration you must be feeling! I hope to high heaven that the titration process will be manageable and that the Zanaflex will WORK!
                        MS with cervical and thoracic cord lesions

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                        • #13
                          Zanaflex constipated David within just a couple of days. Enough that it scared me and I told them no, that won't work. Hope you find some relief soon.

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                          • #14
                            I went to the pharmacy and was told that I couldn't have my Gabapentin because I switched Drs. and the old one said no ,even tho I had 4 refills, and they didn't know who else to ask for approval, my Drs. share the same PA who handles my meds. Then I also couldn't have the Zanaflex because it was a brand name and my insurance had turned it down!!!!!!!!!!!! So here it is Saturday and I will have to wait 'til Monday to TRY to reach my Drs. office and someone who cares!!!!!!!!!!!! I'm not happy. Thank you for listening...lol!
                            Last edited by Snuz; 10-30-2010, 04:26 PM. Reason: left something out
                            "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

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                            • #15
                              There must be someone taking call for your doctor, if the doctor himself isn't on call...I would tell the answering service that this is an emergency situation (and I believe it truly is) because your entire torso is spastic and you simply can't go through a weekend without the meds.
                              MS with cervical and thoracic cord lesions

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