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    I need spasms treatment options help

    Hi. I'm looking into dif forms of treatment for spasms and would really appreciate any help or advice. I'm a t9-t10 and have been using baclofen pills since 2007 up until last year when a doctor changed me to gabapentin. The meds have had 0 effect and I just take them to take them. I used to get relief when I would stretch but not so much anymore. The two options I was looking into were the botox shot and the baclofen pump. I would prefer the less invasive method if it was up to me. Any info or advice would be greatly appreciated. Thanks

    #2
    .Really sorry to hear you have such a challenge with spasms.

    I find standing in my standing frame really helps as it stretches out the legs and lower core muscles. Swimming really helped as does handcycling in a recumbent as it stretches out the legs and the vibration from the road seems to help bigtime. The less drugs I take, the less spasms I get. The more I stretch the legs and lower core, the less spasms I get.

    Good luck.

    Comment


    • Lucky_
      Lucky_ commented
      Editing a comment
      I tried one day without meds but I feel the spasms were a lil worst that day, dont know if it was just me over thinking me not taking them though. I'll try standing frame a bit more and see if it helps. Thanks

    #3
    i do the botox shots and it seems to help
    to alcohol the cause of-and solution to-all of lifes problems [homer simpson]

    Comment


    • Lucky_
      Lucky_ commented
      Editing a comment
      Is there any side effects to the shots?

    • BRIDGET77
      BRIDGET77 commented
      Editing a comment
      I tried 400 units of Botox. Within 24 hours, my neck could not pick up, I was weak all over, my heart rate was extremely high, I could not take a breath without an extreme effort, It stopped me from moving my legs...that are extremely weak already. I could not sleep more than an hour at night, I sweat from my injury site up...constantly....in the winter, I had autonomic dysreflexia all of the time, I did not want to eat, I lost 8 lbs, my blood work was all off, my hair fell out just touching my head...I lost more than half of my hair, it was a "nightmare" 24/7 for 5+ months. I am just beginning to come out of it. I had it injected on October 15, 2020, in my paraspinous muscles, that spasm all of the time. I had a intramedullary ependymoma tumor removed at T2-T4 in 1994, and another surgery on a syrinx in 1999, both at NYU in N.Y. It has been a horrendous time in my life. I did not think from day to day, minute to minute that I would be alive the next day. I could not find any information on it, that is why I am writing about it. Since then, I have found lots of blogs with similar experiences to mine. Beware....It is a Toxin! It is a Neuro-Toxin!!!! Please be sure you try it on a small location before going to a large amount and on a large area. It was as hard as rehabbing from my spinal cord tumor removal....daunting!!!!

    #4
    Here is the list of meds I've assembled over the years. Most I know nothing about. You may want to try tinzanadine:

    Amitriptyline
    Baclofen
    Cannabis
    Cymbalta (duloxetine)
    Gabapentin
    Hydrocodone
    Keppra 1000mg twice a da

    Mybertriq for bladder spasms. It doesn't cause the dry mouth most of the others do. It can raise blood pressure,
    Neurotin

    Nortriptyline
    Norco 325mg as needed
    Targinact

    tizanadine

    Comment


    • Lucky_
      Lucky_ commented
      Editing a comment
      IV been told by some other ppl that cannabis helps the but I haven't tried yet bc we want 2 have kids and IV heard it's not good ones sperm. Maybe later if we have luck. Iv been on hydrocodone bit it's was more for pain. I'll bring up some of the others you mentioned to a pain management doc I see next week. Thanks

    #5
    That seems weird to me, switching Baclofen for Gabapentin. They aren't the same types of meds, at all, I thought. Baclofen is literally a muscle relaxer, for spasticity. Gabapentin is a nerve pain medicine, for tingles and burning sensations. You can be on both at the same time. If you have both spasticity (and spasms) and nerve pain, then I think you can safely take both. I did for years.

    I don't know if they are the same type of med, or not, really, but I was prescribed both, and each for very different reasons. I assume they both might affect GABA receptors but I dunno. Not a physician.

    If you aren't on any muscle relaxer (like Baclofen or Tizanadine or any others - those are what I use), then yeah, you aren't treating your tone/spasticity/spasm issues at all, really. I'd ask to be back on Baclofen, were it me, and up the dose if it wasn't working - assuming you weren't on max oral dose to begin with.

    Curious what your doctor says about those other meds Tetra mentioned too.
    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

    Comment


    • Lucky_
      Lucky_ commented
      Editing a comment
      Thanks appreciate the info. I didnt know that gaba was for nerve pain, dr never mentioned that. I'll post update after meeting with new dr

    #6
    Ditto what Oddity said about Baclofen. Can't imagine why doc would take you off when you have spasms. I take Baclofen for spasms and Gabapentin for nerve pain/tingles.

    Comment


    • Lucky_
      Lucky_ commented
      Editing a comment
      Thanks. I guess the dr was just trying dif meds on me to see if any worked better bc I was having no results with baclofen any more

    #7
    On Baclofen taking 20mgs 4x/day. The Tizanidine made so very sleepy. I hated it. Weed made my spasticity worse, which bummed me out. Had high hopes for it. .......

    Comment


      #8
      Thanks for all the advice. I see a new dr this week and I'll bring this up and I'll update y'all on what they advice. I was on baclofen 4x20mg a day and didnt really see any dif. The only thing that ever gives me any relief from 30mins up to an hour is when I lay on my stomach and wait for on big spasm that lasts like 30sec and after that releases I'm good. Makes me think that there's a dif issue that's more pressure release related

      Comment


        #9
        1 comment

        • #3.1
          Lucky_ commented
          15 Apr 2021, 11:37 PM
          Is there any side effects to the shots?

        i havent had any side effects not sure of the dosage i cant remember but she said its very little
        to alcohol the cause of-and solution to-all of lifes problems [homer simpson]

        Comment


        • Lucky_
          Lucky_ commented
          Editing a comment
          How may times have you gotten the shots?

        #10
        Originally posted by Oddity View Post
        That seems weird to me, switching Baclofen for Gabapentin. They aren't the same types of meds, at all, I thought. Baclofen is literally a muscle relaxer, for spasticity. Gabapentin is a nerve pain medicine, for tingles and burning sensations. You can be on both at the same time. If you have both spasticity (and spasms) and nerve pain, then I think you can safely take both. I did for years...
        As you all know a med can affect a person differently from it's usual affect. I found gabapentin to be synergistic with baclofen. It amplifies the anti-spasticity affect just enough to make my life bearable. I use 30 mg/day of baclofen and 1200/day of gabapentin.

        Comment


          #11
          Originally posted by Tetracyclone View Post

          As you all know a med can affect a person differently from it's usual affect. I found gabapentin to be synergistic with baclofen. It amplifies the anti-spasticity affect just enough to make my life bearable. I use 30 mg/day of baclofen and 1200/day of gabapentin.
          Yeah. True: I was on daily 80mg oral Baclofen and 2400mg Gabapentin for many years. I'm just on 40mg of Baclofen now, with similar results. Still have nerve pain and tone but it's tolerable most times. I was a zombie on those meds, but now I can be more active even if a bit less comfortable sometimes.
          "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

          "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

          Comment


            #12
            Originally posted by Oddity View Post

            Yeah. True: I was on daily 80mg oral Baclofen and 2400mg Gabapentin for many years. I'm just on 40mg of Baclofen now, with similar results. Still have nerve pain and tone but it's tolerable most times. I was a zombie on those meds, but now I can be more active even if a bit less comfortable sometimes.
            Happy you found that improved dosage! 2400 mg of gabapentin is quite a load. It took me 2 years to get over feeling sleepy with 1200 mg. plus the baclofen. I supplement with marijuana at bedtime with aa highly sleep inducing strain, but i'm not really happy with the side effect. Nor with the cost!

            Comment


              #13
              The doc suggested me getting off of gabapentin and started me back on baclofen. I'm going this week for the shots just a lil hesitant bc I don't fully know if there is any side effects long term I should worry about that maybe weren't discussed. Do the shots cause any damage to the spots where they are being injected?

              Comment


              • SCI-Nurse
                SCI-Nurse commented
                Editing a comment
                What kind of physician is this one? Gapapentin has been used for spasticity in MS, but rarely does anything alone for people with SCI. Tizanidine would be the most frequently used alternative to baclofen in people with SCI.

                Botox works best for select smaller muscles. It can't be done on every muscle and works poorly on big muscles like the gluts or hamstrings.

                Do you also prone (lay on your stomach) for at least an hour daily, and stand on a regular basis? In addition to regular ROM exercises, these can reduce spasticity in many. (KLD)

              #14
              There are some older drugs that might help. But they have downsides as most drugs do. Valium is a good muscle relaxant. It is addictive but is my goto spasm med for short term use. There is also Dantrolene, which was one of the first meds that targeted spasticity in people with SCIs, MS, etc. However, it can damage the liver. They have their downsides, but may be something to try if desperation overrides the risks. Staying warm, doing easy ROM, and massaging the muscles help to keep my spasms down. Mine are worse in the morning when I start to move around after laying in bed all night.

              Comment


              • Lucky_
                Lucky_ commented
                Editing a comment
                I'll ask about valium and see what they say. I'm better in the mornings when I wake up but my spasms get worse as the day goes on.

              #15
              This physician is a neurologist. I think I'm getting four shots, one in the back of each leg and then one on the inside part of my legs. I only lay on my stomach when I exercise or at night before I sleep, and I use the standing frame like once a week sometimes. Other than that I do some scratches just to relief pressure. I'm trying to start to get on the standing frame more regularly but have trouble bc of the spasms kicking my feet out of place so I only get on it when they are calm. I just got back on baclofen but if that doesn't work I'll see if the want to try me on tizanidine.

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