Hi I’m just wondering if anyone else suffers from muscle cramps, muscle spasms & muscle locks-where it feels like your muscle has locked & you Baclofen daily but so far it’s either not working or they’re making it worse! It alway seems to be worse & excruciating on a night, so I’m hardly sleeping, which means I’m exhausted with extreme fatigue & literally at my wits end!! I’ve been diagnosed with myoclonus & Dystonia. Just wondering if anyone else in the same boat & has has the same problems? I’m not sure if the medication just isn’t working or if it’s actually making it worse!!
This problem & my ataxia which Is idiopathic Cerebellar Ataxia is NOTHING to do with my thyroid- there is NO connection at all between them. Many thanks in advance for any help/advice & experiences you can offer/give
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I used to take baclofene, but it actually made my spasms and spasticity worse. It worked fine for a couple of years and then started to make them worse. So the neurologist took me off them.
Regular stretching exercises works quite well for me. But I find it's all worse when I'm tired, and if you're not sleeping that could be making it worse - a viscous circle!!
Many thanks for your reply. The first paragraph sounds exactly like mine. It’s driving me mad! The pain is horrendous, especially during the night & it wake me up, it’s excruciating, to the point where I’m not supposed of my neighbours wouldn’t think I’m getting beaten by husband, I’m screaming out so loud!
Will speak to my gp as I don’t have an appointment with my neurologist for a couple of months & he was the one who prescribed them for me originally.
I used to get nightly cramps and occasional cramping during the day. I take magnesium citrate at night along with a calcium supplement and I no longer get cramps during the day or night. I make sure I get plenty of fluids and potassium in my diet, and I do stretching (yoga). Everyone is different so I don’t know if this will work for you. You have to be careful with magnesium - too much, and you get diarrhea and can lose muscle reaction. (According to my physician friend.) check with your doc...
I used to take baclofen, but the side effects were not good and it seemed to make my spasticity worse. So I stopped taking it and told the neurologist!
🥴 Pain and stiffness 😬 I empathise with you, pain and stiffness have been interrupting my sleep for a while now. Although I’m aware of specific medications that are said to help, I haven’t tried any to date, mainly because of what others have commented. So far it’s been Co-codermol (which helps sometimes), or Nurofen ( which I found more helpful).
I have gene mutations that have caused my cerebellar ataxia which could be inherited. I also have Dystonia in my neck so I have Botox injections every 3 months. I had cramp & quinine in tonic water & bananas was recommended. I now take CoQ10 (Ubiquinol which gives energy to cells I understand) & the prof at Sheffield who specializes in Ataxia said they can prescribe quinine too if needed, so talk to your neurologist/GP as they may be able to help? Oh, I also take Gabapentin for nerve pain - don't know if it'll assist as we're all different.
Magnesium citrate 200 mg helped or you can try magnesium oil as it relaxes muscles. Eating lots of bananas also seemed to have a positive effect cause of the potassium
Goodluck!
My neurologist put me on 400mg of Magnesium Bis-Glycinate about a hour before bed to help with night cramps but I eventually found I was getting cramps that felt different then the night cramps after I worked out (more twingey) my doctor suggested adding 90mg of Potassium Citrate and that seems to have done the trick.
I have SCA 3. I used to use Baclofen, but stopped when I found a CBD product that worked better. I am unsure if the Baclofen wasn't effective anymore, just thought I rather take a natural product rather than a pharmaceutical.
I too have SCA1 and initially was on quinine, now on Baclofen. For the night cramps. Still have muscle cramps but Baclofen makes them tolerable, they no longer hurt. Baclofen has not stopped the leg jerks, myoclonus. But the side affects are numerous. Withdrawal from Baclofen will produce symptoms.
Ask your GP for a Baclofen alternative so you can sleep at night.
You are probably already taking magnesium. I use to hv muscle cramps as well, but now taking 400mg magnesium glycinate, Solaray, and 100mg Jarrow MagMind which is magnesium threonate. I alternate with UltraMag, I walk my dog 8-10 blocks every day.
Dr. Carolyn Dean, The Magnesium Miracle, excellent info. I really miss Sunvox contributions here. Extremely sad that we can't hear his well reseaeched suggestions anymore.
To be honest I’d rather not. I always found him to talk utter nonsense & of no use or help to me whatsoever, if i could have found a way to block him or his comments then I would have happily have done so, I for one glad he’s no longer on this site & feel more at ease about asking questions & replying to comments than I did when he was on.
Our case is a PSP-RS patient. 8 years from the first symptom.
We have not detected major episodes of muscle cramps or spams. In the daily diet we include in the breakfast a quantity of fresh cheese and whenever the circumstances arise we expose the patient to the sun discovering legs and arms.
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