'Benign' fasciculations (jerking limbs) taking over my life

[JesusInTheCabbageVan]

About 6 years ago I had a horrible few months of twitching/jerking limbs, caused by medications which have this as a side effect.

It gradually reduced to a manageable level, and eventually I could go for months or even years without any issues (although I noticed stress would always bring it on).

More recently, I've had a perfect storm of awfulness (Covid in December, nightmare neighbours, insomnia, anxiety, and antidepressants which - yep - can cause fasciculations as a side effect). I'm off the ADs and trying to get back to better MH. Unfortunately, all this has led to a severe recurrence of muscle spasms. The main problem is at night, because it stops me sleeping until I'm basically so tired I sleep through them. Lack of sleep contributes to my anxiety, which in turn makes the twitching worse

I've had blood tests, all normal, and today I've been referred to a neurologist, just to rule out anything more sinister. I don't think it's MS, personally. I think it's a combination of anxiety and after-effects of medication.

My question is whether it might be possible to break this cycle with a short course of anti-epilepsy medication. I know it sounds extreme, but having had several weeks of this, I am certain I'm not going to get better (physically or mentally) with time. It's just going to keep getting worse, because it's a vicious cycle now.

Does anyone have any knowledge or experience of this type of thing?

(Btw I know diazepam can help, but I very much doubt my GP will prescribe anything more than a molecule of it. They may be more willing to try AE meds if I can offer some success stories, is what I'm hoping.)

Is there any chance it could be a magnesium deficiency?.Especially likley if you are middle aged. I know some medication can cause an imbalance?
Also coffee caused my dh terrible muscle spasms especially at night.

I second looking at magnesium. Try something like Better You magnesium lotion, magnesium flakes in the bath or an oral supplement. Also, you could try meditation and progressive muscle relaxation exercises. 20-45 minutes a day for a couple of months will be enough to see if its going to help.

Just to put it out there have you considered cannabis? You might even benefit from CBD oil which doesn’t have any of the ‘stoned’ effects of consuming cannabis.

Thanks everyone.

It's not magnesium - bloods came back normal and I take a multivitamin every day which includes magnesium. As it happens, last time it was really bad I tried taking magnesium supplements and they actually made it worse so no idea what that's about.

I 've tried CBD oil and that does help, BUT a side effect of that is it stops me sleeping. 😭

Hmmm, have found this, which suggests that anticonvulsants can be used, although it's not very optimistic:

Benign fasciculation syndrome treatment
There is no treatment to reduce benign fasciculations. They can resolve on their own, especially if the trigger is discovered and eliminated. Some people have had relief with medicines that decrease the excitability of nerves, including:

carbamazepine (Tegretol)
gabapentin (Horizant, Neurontin)
lamotrigine (Lamictal)
pregabalin (Lyrica)

www.healthline.com/health/benign-fasciculation-syndrome#treatment

I like 'especially if the trigger is discovered and eliminated'. In this case the trigger was my neighbours, so am I allowed to go round there and eliminate them? Internet says yes.

I like 'especially if the trigger is discovered and eliminated'. In this case the trigger was my neighbours, so am I allowed to go round there and eliminate them? Internet says yes.

I vote yes anyway!

Have you tried propranolol? Just wondering if that would damped them down, it's the first med typically used for benignmyarseisit essential tremors? I'd be very wary of anti-epilepsy meds as they themselves can cause tremors.

Ah, that’s a shame about CBD oil. Did tinkering with the timings make any difference? I think I’d be tempted to take something to help me sleep and use that over trying an epilepsy medication.

My df has been on them for years and the side effects are not to be taken lightly.

That said, I understand why you want to try that route and I hope you can have a constructive conversation with your neurologist when you get a consultation with them.

@TheCanyon yep, tried it! Same as CBD oil, it help the twitching slightly but left me wide awake, unfortunately.

@Cornettoninja I did get the impression from researching that list that none of them are a magic bullet (there are MN threads on all of them). Which does make me think the GP will probably not be too keen on prescribing them

Part of my worry is that this will only get worse as I head into perimenopause (I'm 40). I don't want to just have this at the forefront of my life for the next 10-20 years.

@JesusInTheCabbageVan I have been suffering from the same recently. Have you found anything to help? I'm interested that you found magnesium made it worse for you. I've been taking magnesium every day to help restless legs, and now I'm getting muscle spasm and twitches all over... maybe I should lay off the magnesium!

A friend of mine has a similar problem - a continuous tremor in her upper arm that she has had since she was about 15. After about 5 years of trying to find the cause, her neurologist decided to just treat the symptom. She has a small injection into the trembling muscle every 3 months which stops the tremble.

Sorry, forgot to say that the injection is Botox.

Hello! Yes I did - moving house resolved it instantly so it was exclusively stress, in my case. The brain is a funny thing. Sorry I can't give any more helpful advice, do you think stress might be a factor for you?

@JesusInTheCabbageVan thanks for getting back to me. I don't feel particularly stressed, but there is a lot going on. I think the twitching is making me more stressed, so maybe it's self perpetuating! Glad it resolved for you.

One thing I did find helped a bit was Kalms lavender pills, so might be worth a try! Apparently studies have found them to be as effective as a low dose of lorazepam.

@JesusInTheCabbageVan Thank you, I'll have a look. Mine seem to be calming down since I stopped taking Magnesium.