Spasms and Fasciculations - terms matter

[Tomswife]

I discovered in one of our early visits to the neurologist that I was using the medical term - fasciculations, incorrectly.
Fasciculation - a brief, spontaneous contraction affecting a small number of muscle fibers, often causing a flicker of movement under the skin. It can be a symptom of disease of the motor neurons.
The neurologist showed me the fasciculations under PALS skin. It was a shimmery movement, a flicker. That is fasciculation, he said.

The neurologist and I then talked about the spasms. Spasms are sudden, ongoing muscle convulsions. These small to big uncontrollable movements PALS has mostly in his legs. He jerks his legs like he has received an electrical shock.

Fasciculations are usually benign and won't keep you up at night. Spasms will definitely keep you up at night and bother you all day long.
PALS is taking baclofen and gabapenten for the spasms. The spasms have not lessened. PALS has had the spasms since about 4 months after the bulbar symptoms started. So he has lived with these spasms now for seven months.

I wish there was a way to lessen the spasms.

 

[ShiftKicker]

Baclofen isn't the only option for muscle spasms- there are a few other options that might work. Tizanidine (Zanaflex) might be of help. As might Dantrolene or Methocarbamol. I know other folk here use a variety of muscle relaxing meds to help with their spasms/spasticity, so I hope a few others weigh in with what has helped.

 

[Clearwater AL]

As you may know Baclofen is not “as needed” which I saw
someone post a while back. Once you start Baclofen on a
regiment you can’t just stop taking it. Probably known.

Whatever his MG amount is it can be taken up to 30MGs
three times a day. Of course with the doctors ok. The best
regiment is 9:30 AM, 3;30 PM and then 9:30 PM or a
little later to get through the night.

As shiftKicker said there are other options too. Hope
something gives him some relief. Maybe another consult
with his Neuro or call to his clinic.

 

[KimT]

Valium helps mine. Does nothing for fasciculations but does help those quick spasms and cramps. Never hurts to rub magnesium oil on the legs, especially before bed. I find that helps all of it, even if it's just a little. I also notice more leg activity if I forget to take enough oral magnesium.

 

[Tomswife]

Thanks all. I will make telehealth with neurologist. I have discussed this with neurologist at several times. But he doesn't offer much of a remedy other than keep on keepin on.
I found this topic in a 2020 issue of Practical Neurology. I attached the article here.
The list of rx for spasms is - baclofen, nabiximols. Onabitulinum, tizanidine.
The only benefit to the current course is PALS has spasms, but no horrible side effects from rx.

 

[ShiftKicker]

While the options aren't numerous, there are a few more than what your husband has been offered. And what works for one person doesn't always work for others, so it can take a few trials. Some neuros can be conservative in their recommendations, unfortunately, and unwilling to try more than one or two things. I'm sorry you've run into this. Hoping you will find the neuro more open to other options during your next discussion.

 

[lgelb]

If baclofen/gabapentin are not working, I would not be taking them (tapering the baclofen to avoid complications) since they can both cause sedation and other sometimes "silent" side effects. So if there is no benefit, why assume the risk? A recent study finds that 65% of MS patients d/c baclofen in their first year of using it, because it is often not effective enough to merit staying on. Tom would not be the first.

I would try tizanidine, Mg lotion (OTC) and dietary adjustments, possibly with a long-acting benzo dose esp. before bed if the spasms interfere with sleep. CBD products are helpful for some.

Cyclobenzaprine (at the lowest dose), if there are no contraindications, is another option to the extent the spasms are musculoskeletal in origin. Gabapentin is the flip side, if they are more CNS-related. If gaba isn't doing anything, cyclo might.

Your PCP or a phys med/rehab doc can help with this if the neuro isn't interested. When someone is in pain, there's no reason not to try it all, within reason, IMHO.

 

[Doing My Best]

My PALS had violent spasms that woke him up during the night, mostly in the legs, for years before he was diagnosed. In retrospect I've thought that was probably his first symptom. They spread to other muscles (abs, arms) and got worse the first few months post-diagnosis. He was prescribed gabapentin which for him has been effective, but it took a couple of increases in dosage to have an effect. He now takes 400 mg in the morning and 800 mg at night. He also gets a lot of relief using CBD tinctures and gummies, but more for the fasciculations (which are minor nuisances, not excruciating) than for the spasms. He rarely has the spasms any more.

 

[Tomswife]

Tom is taking 600 of gabapenten once a day. Baclofen 10 twice a day.
I know nothing about cbd but have been meaning to find a reliable expert.

 

[Douglasd]

Ativan. It works for me and within 90 minutes. Calms the body so for me calms the shaman.
Doctors won’t tell you this but for me sitivia gummies also for me must distract the neuron messeges and although doesn’t help w speech helps w spasms and facitulations.

 

[KimT]

I've been taking Charlotte's Web CBD since shortly after my diagnosis. It has a calming effect very different than drugs. I also take THC gummies as needed.