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  • SCI-Nurse
    replied
    I don't have anything to add that hasn't been said. I do know that each person reacts diifferently to medications and sometimes that means trying different combinations. I would also encourage you to prone not just at night but before you get up in the morning. That may help. And as you find your spasms decrease, even a little, try standing more. That plus ROM seems to be the key for many of my patients.
    ckf

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  • Lucky_
    commented on 's reply
    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.

  • Lucky_
    replied
    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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  • SCIfor55+yrs
    replied
    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.

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  • SCI-Nurse
    commented on 's reply
    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)

  • Lucky_
    commented on 's reply
    How may times have you gotten the shots?

  • Lucky_
    replied
    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?

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  • Tetracyclone
    replied
    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!

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  • BRIDGET77
    commented on 's reply
    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!!!!

  • Oddity
    replied
    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.

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  • Tetracyclone
    replied
    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.

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  • wheelin 48
    replied
    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

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  • Lucky_
    commented on 's reply
    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

  • Lucky_
    commented on 's reply
    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

  • Lucky_
    replied
    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

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