I’ve been dealing with horrible spasticity since April and has gotten worse. I don’t sleep much anymore at night and I work full time. My MRI shows no changes (minimal) and thoracic spine has no lesions. I’ve tried so many medications including sativex. I’m so tired and done with it all. I’ve also tried amitripyline, carbonmezipine, sinemet, quinine, nabilone and nothing. Please help…
Have you tried Gabapentin?
I only found out recently that NICE have approved it as a first line treatment for spasticity.
Geoff
I’ve been taking Clonazepam for spasms for the last year. I think it’s brilliant. I was waking up halfway through the night, pretty much every night with my legs twisting up in horrible, painful spasms. Now it’s pretty rare. Amazingly it actually did happen last night, but that’s the first time for weeks.
I now have a routine of Baclofen, Amitriptyline and Cloneazepam which seems to work most of the time.
Sue
Like Sue I also take Baclofen, Amitryptyline and Clonazepam and it works for me. Hope you get some relief.
Thanks so much everyone for your feedback.
DoctorGeoff: I was on Gabapentin a few years back, but was gradually weaned off as my symptoms stabilised. At one point I was taking up to 1200mg per day (4x100mg tablets - morning, afternoon, night).
Ssssue and mo54: I’ve been on Baclofen for years. I was also on Cyclobenzaprine for a while.
All: If you’re curious, my current medications for MS are as follows:
Lyrica 150 mg 1 Caps AM/PM PO
Baclofen 10 mg 2 Tabs AM/PM PO
Copaxone @Bedtime 20mg SC
Vimova 500mg 1 Tab QAM/QPM
Amitriptyline 1-2 Tabs PO QPM 10mg
Sativex Buccal Spray 1-2 Sprays at Bedtime
A lot of people have recommended marijuana. Sativex is just that - the closest thing short of raw marijuana itself (to smoke, eat, etc). “Sativex® is a cannabinoid medicine for the treatment of spasticity due to multiple sclerosis which is also in development in cancer pain.” It’s an oral spray, with a 1:1 ratio of THC to CBD. I’ve been taking it for a few days now, but it’s not doing anything whatsoever. And prior to being prescribed Sativex, I experimented with actual edibles (candy), however these had the same (read: no) effect. My neurologist has offered to prescribe the real deal if I really want (to smoke, bake into edibles, etc), but given the lack of success up to this point, it’s hard to get excited.
Thanks so much,
natashap
Hi.
After input from physio, have Botox injections into spastic muscles of right leg. Takes a few days to kick in but works a treat in turning 'off ’ the spastic muscles for 3/12.
Hope of some help
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Hi sorry your having these awful issues. Cant be much fun.
Now one thing i do no one else seems to but it works for me. Long time back my GP asked me if there was anything i needed, I said yes, a BED CAGE. Its just a metal frame, which stops the bedding from being on the legs causing me to get overheated and it used to make my legs squirm and spasm. So within less then 2 hours one was dropped off at my house. Yes that quick.
I use it all the time. Now when i went on holiday i didnt take it, and hardly slept. I know it works. Such a simple thing as metal cage. I find the heat of bedding really makes my legs worse, its worth trying one.
Now i dont take anything i gave up on all the physc drugs as they seemed to make me worse anyway lol, the only other thing i have is one diazepam 2 mg at night if i wake up with spasms and it works.
When i read what you were on, dont some of these things have similar jobs? Lyrica, baclofen, amyriptyline? Maybe they are working against each other perhaps?
I am really sorry you have this every night but honestly try a bed cage they are amazing and a few people i have recommended them too have started using them and found they really help too especially in the summer.
My friend in states uses medical marijuana but smokes it, said it works better that way if she cooks it, she said it doesnt seem to work the same. I wish they had this in UK make it legal for medical use.
Sending you a hug. xxxx