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Thread: Need weirder spasticity/spasm meds to try

  1. #1

    Need weirder spasticity/spasm meds to try

    I've had spinal cord MS for 20 years. Three long lesions spanning C thru T. I've always had spasticity, and frankly it's always cycled in severity with my hormones, but in this year following menopause, my spasticity has gotten worse and worse to the point that I'm sitting here in wheelchair at 1:28 pm with my left leg still in flexor spasm from overnight. A few weeks ago I could walk a "PT lap" in my house using an upright walker but now I can't even stand. Falling daily. Spasticity comes from SCI as a secondary symptom so it's not a flare (I don't get flares anyway). Getting Botox next week. Probably "the pump" after that, which terrifies me due to complications. Want to be sure I've tried everything before the pump, so give me every wild treatment you've heard of or used. What hasn't worked: oral baclofen, tizanidine, clonidine works for two weeks, Valium works but I'd need 20+mg now, gabapentin, pot, dantrolene, clonazepam, l-threonine, have basil oil for massage coming in mail. Smarty pants that I am, went on HRT and got a two week respite but then it came flying back. Help!

  2. #2
    T-10 sci 20 plus years. My spasms we're very bad affected my whole life. I got to where I couldn't anymore. also spasms so bad. I was kicking my wife and leaving bruises on her all the time. I couldn't be intimate i mean nothing. I installed the pump over 3 years ago. Talk about life changing after the got the medication mixture right. Also forms double function, also chronic pain. Taking pain meds for years. I put baclofen in the pump and also hydromorphone. Spasms almost non existant and pain down from a 10 , thoughts of suicide. Down to pain level of 4. It's something to look into and good luck.

  3. #3
    It seems to me that you have tried almost everything. There may be something out there that I haven't heard of. While the pump, like everything, has it's issues, for many it is a godsend. It seems like you may be in that category. And remember, for every bad story, there is a good one.
    ckf

  4. #4
    Quote Originally Posted by SCI-Nurse View Post
    It seems to me that you have tried almost everything. There may be something out there that I haven't heard of. While the pump, like everything, has it's issues, for many it is a godsend. It seems like you may be in that category. And remember, for every bad story, there is a good one.
    ckf
    In scouring the fringes of the Internet, I've run into some odd spasticity drugs that have worked for someone. My APRN neuro (not to suck up, but I LOVE nurses) said she'll give anything a go. She's frankly hesitant about the pump, tho we didn't discuss it at length. Any insights on these or additions?Chlorzoxazone, cyproheptadine, piracetam , progabide, lamontrigine, riluzole, thymoxamine,carisoprodol, orphenadrine, metaxalone, methocarbamol, pentafluoropropane / tetrafluoroethane topical, cyclobenzaprine. When I looked up the topicals on Wikipedia, they showed only industrial uses but I think drugs.com has them as spasticity drugs. Thanks for any input.

  5. #5
    Thank you so much for your response. I'm reading the entire consolidated pump thread right now. Kinda know that's where I'm headed. I'll even have double insurance Jan 1 but don't know if I'll even wait that long. Why am I so AFRAID? Afraid of surgery generally, infection, complications? So far all I see is that everyone loves them yet when I look at articles about complication rates, they seem so high. Does the reaching necessary for BP interfere w stitches healing, pump or catheter moving?

  6. #6
    Any surgical procedure has the potential for complications. One of the reasons for the pre-insertion testing is to try to make sure that the pump is only being put into people who will have a positive outcome. I would also get concerned about who is doing the procedure. Make sure that it is someone who has experience in doing it.

    The reaching for a bowel program should not cause any problems.

    CKF

  7. #7
    As to the medications question - although those meds may have been used for spasticity management in the past, none of them rings a bell with me. That is not to say you shouldn't try them - only that there is generally a reason why a medication falls out of favor, so to speak. I would really look at the side effects and adverse effects before trying them. Just a word of caution.....

    ckf

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