Not sure I can discuss these meds? Anyway the big 3 muscle relaxers I know of are Baclofen, Tizanadine, and Dantrolene. Have any of you had success with one of these? I have tried all 3 for spasticity and I might as well be taking candy…nothing.
My Neurologist is now suggesting Gabapentin: your thoughts?
Gabapentin is used to treat nerve pain rather than spasticity.
Do you have nerve pain ?
@Nigelglos I have nerve pain down the arm from cervical stenosis. The Doc. says it has been known to help with spasticity. He is a well known neurologist in New Jersey.
Looks like you are getting two for one as it hopefully assists with nerve pain and Google has this
The NICE MS Guideline also recommends gabapentin as one of the first drugs to try in the treatment of spasms and spasticity.
I have tried Baclofen and Gabapentin. Neither has made any noticeable difference. I was taking 2,700mg of Gabapentin and the only effects were to turn me into a zombie. I’m currently trying a low dose of Amitriptyline, but they don’t seem to be having much effect either. I’m also trying CBD oil, but it’s early days yet.
I’m running out of things to try. Botox didn’t help either.
Everyone has different experiences. I hope you have more luck than me!
Hi, I’m 6 years post following a hemorrhagic stroke which paralysed my left side. I’ve been taking Baclofen and Amitriptyline since I was in hospital and can honestly say, neither have been very effective. I have also had botox injections whuch weren’t very effective either. I do sometimes wonder what my spasticity would be like if I wasn’t taking any of these ??
Sorry this reply isn’t very helpful, just trying to be honest. There maybe someone on here who has great results. Hope you find something that works well for you.
Regards Sue
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@Susan_Jane
@MinnieB
Thank you both for the info. It certainly is frustrating eh?
I’ve noticed when taking a dose of baclofen or tizanidine and it wears off, my spasticity comes on stronger.
Just a thought,… You could try looking on websites like patientslikeme.com - It’s not the only one in it genre- they gather people’s experience at the intersection of different conditions and the same medications and The same conditions and different medications. They’re not as friendly to use as one would like but with a bit o’ digging you can find info that then is the beginning of a search through the pharmacopoeias and or can often lead into research papers where you can get further insight
Unfortunately the only way to find out is to stop taking them or reduce your dose in conjunction with a pharmacist
I found that if I take any item for a while, just reducing the dose is enough to make me feel pretty awful. That though I think was often the withdrawal of the medication. Have to get through this phase which isn’t very nice to get to the genuine benefit (or not) of what the medicine was giving you.
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@Nigelglos I spoke to a good friend who was on Gabapentin. She stopped abruptly and she went into a deep depression that lasted for months she actually wanted to “not” go on living. It was that horrible. Thank goodness she is much better now. The internet has many stories of bad side effects… So…I just don’t know if the risk is worth it.
Sorry: I’m sure the drug may have helped many others, I’m just a bit paranoid.
Sorry, apologies,just in case my post wasn’t clear, I know there are real dangers in just stopping. They need a gradual change, these are acting in your central nervous system and not ones to mess with. The guidance that comes with it is full of warnings about suddenly stopping.
Underlying it all, ideally you only want to take medication at the correct dose for you and for the optimum benefit (with tolerable side effects) and really not a mg more.
If there is real doubt about a medication and it’s benefit, definitely one to discuss with a healthcare professional about working out what difference it truly makes.
At the time when I moved from pregablin to gabapentin, I had breathing difficulties. I spent a day having to consciously make each breath. Absolutely exhausting and a bit scary.
I was moved back to pregablin asap
With hindsight, I think it’s likely that the problems I had were one of the odd things that happens post stroke and it was just a pure coincidence. I mentioned it to a consultant this week who said it would have had nothing to do with gabapentin. I have had these odd breathing incidents since which further confirms it for me. At the time tho, it looked for all the world that it was the change in medication
Your good friend’s experiences shouldn’t really put you off as what has happened to them is what is expected to happen with going straight down to zero. If anything, it perhaps could give you confidence that the notes that come with the drug are correct ?
Just to add, in addition to the time to step up to the correct dose, there is quite a time for the benefit to kick in, may be 4 weeks after reaching the suggested dose. This process is painfully slow
@Nigelglos Very Good points and noted: thanks.
I wonder if that breathing problem is like mine. I didn’t know that my spasticity was also affecting the muscles around my ribs ( serratus magnus ?) On days where my spasticity is strong, it is hard to take a full breath.
Funny thing; I took my first 300mg. dose of Gabapentin last night as experiment. It actually kept me awake all night. So many have said it is a sleep aid.