My legs spasm frequently throughout the day and night. If I get an itch in my leg, before my brain is able to process that I need to reach down and scratch it, my leg will spasm on its own to attempt to alleviate the itch. I know many refer to these as "muscle spasms", but I believe this to be more a problem with nerves than muscles.
At any rate, I've tried baclofen (up to 30 mg in three daily doses) and gabapentin (up to 2700 mg in three daily doses), which I know have worked for others on this forum to control spasms. They don't work for me. I took 10 mg of baclofen an hour ago, and my legs are still jerking every few minutes.
Does anyone have any other recommendations to address this issue?
Cheers!
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Aaron98
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Hiya Aaron. I take 20mg of amitriptyline every evening, and it’s worked for me. Some say it only works when you also take co-codemal, which I do take as well, due to my Rheumatoid Arthritis, so I can’t say it works on its own. It’s worth having a chat with your GP though.
Hi Kazzy, thanks for the reply. I took amitriptyline earlier this year for neuropathic pain. I believe I was up to 150 mg at one point. It wasn't effective at reducing pain, and didn't do anything to my spasms, either. About the only thing it did help with was sleep!
Aaron, very good way to describe the muscle “twitch” to relieve an itch, lol. I get those too but I feel there is a difference between that and a spasm. Best way to describe it is my spasms last longer than a twitch. I used to take baclofen but stopped once I started gabapentin. They both helped alleviate my spasms so I didn’t feel like I needed to take both of them. Sorry to hear they don’t work for you. It doesn’t help much with the neuropathic pain though so I just started taking cymbalta as well and it seems to help a little.
Or like a length of extremely thin wire being pushed into my leg. Not painful, just being pushed in. then the spasm starts.
Or my legs spasm, then I feel the itch.
All night.
I recall waking up, having only had a sequence of micro-dozes all night. Then I had to go to work. That went on for ages.
Booze stops the spasms and Gabapentin/Lyrica, and Marijuana.
Amitriptyline knocks me out like a light.
Baclofen is useless.
I considered trying one of my Dad's Co-codamol the other day. Wasn't the Codeine that put me off, just that I have plenty of Lyrica.
They say Clonazepam, of all the Benzo's is the best spasm stopper. I take that if my legs are uncontrollable, though wouldn't want to take daily.
The above are all mind altering chemicals. Every single one is a drug of abuse.
I recall when I was arguing with a neurologist who refused to prescribe me Methylphenidate. "It is a drug of abuse.", he declaimed, as he handed me my prescription for Gabapentin, Lyrica, Amitriptyline, Baclofen and Clonazepam.
I read up on all this, years ago. I, thought my spasms were muscle camps. When I was first diagnosed with HSP, the neurologist put me right straight away. Told me they were spasms, damaged spinal cord sending signals to the muscle.
Of course, that is just me.
Mine started a mild twitches, thought they were restless leg syndrome. Getting worse and worse. Stomach spasms now. Occasionally in my arms as well.
This disease, it's like we've all got our own private, individual disease.
One thing I thought is, if a particular drug stops the spasms, you have to ask yourself, does the drug work on the brain, or directly on the nerve/muscle that is twitching away.
And Lyrica, Clonazepam, Gabapentin, Baclofen all work on your brain. On the GABA receptors.
All of this makes me think me spasms are a regular signal from the brain, corrupted as it moves down my demyelinated spine.
Try high dose magnesium. Magnesium relaxes the muscles.
The majority of people are deficient in magnesium and take an over abundance of calcium. Start with 400mg and work up. One word of caution; it can cause loose stools.
Thanks for the recommendation. Do you know if it matters what form of magnesium is taken? Oxide or citrate?
I'm not overly concerned about loose stool. I tend towards constipation. I can go three or four days without anything, and then all of a sudden, I'll get serious bowel urgency. The occasional urgency is starting to become more of an issue. I'm not sure if this is due to nerve damage, or what. This disease can really get one in "the dumps".
I’m the same way with the bowels. This is definitely due to a neurogenic bowel. Much like the neurogenic bladder. I often describe it as “having a mind of its own”.
I begin my medication regiment around 6:30 pm with 20 mg of baclofen and 300 mg, gabapentin. At 8 pm, I take 30 mg, baclofen and 300 mg of gabapentin. Around 9:30 pm, I repeat 10 mg of baclofen and sometimes adding another 300 mg. of gabapentin.
I find this staggered schedule has been more helpful. However, this does not include those random evenings of combined fiery nerve pain and spasms in wild tandem.
It has been a challenge to find that sweet spot of taking medication before this ordeal begins.
I have tried pills but I find a shot and half of whisky before bed calms my legs down it may work in the day but not tried as it would affect my driving.
The best thing I have found for the spasms is cannabis cbd oil I learned about this talking to someone with MS and she swore by it, so I got some and it works wonders I now go to bed and some nights have no spasms and some nights just a few mild spasms, it also works for my back pain it does not remove the pain but it makes it manageable. This type of oil only has the cbd and not the thc component and its the thc part that gets you high so you are safe and its legal in most parts of the world inc the UK and Europe.
Yes you take it orally just 2 or 3 drops under you tongue to start with I find the best place to get it is UKCBDSHOP.COM one bottle for £15 and when you are used to it you can get 5 bottles for £45 I cannot find any better value and no postage in the uk
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Advice on muscle spasms
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