Advice on How to Treat Essential Palatal Myoclonus?

Hello! Female, in my early 30s. I'm seeking advice on how to treat essential palatal myoclonus. I've read a lot of the threads here, but I didn't know if there is anyone who here who has gone through it and recovered. Mine is quite bad.

The story on how I acquired it is long and complicated, so I will leave out extraneous stuff and just focus on the essential points. In 2017 I went through a bout of complicated grief and cried every day for three months. One day I spent over an hour crying without stopping, and when I was done, I realized that my face felt very... weird. The muscles that let me pull my lips down (depressor labii inferioris? not sure what it is exactly) felt very droopy and weak, and it would get this sort of dull pain, accompanied by spasms. It got bad enough that I went to a neurologist, who poked me in the cheeks with some needles, asked if I could feel them (yes), and sent me home with Gabapentin saying I was "fine."

I bring the facial spasm up because in 2019, these face problems went away and were replaced by 1) an intense fluttering pressure in the middle ear and 2) 24/7 soft palate clicking and jumping. I believe the conditions are related somehow because as soon as one stopped the other started up. At first I didn't know my palate was moving and thought I was having Eustachian tube problems. I visited an ENT, who was confident I had allergies and put me on a cocktail of prescription allergy meds (it didn't matter that an allergy test and CT sinus scan turned up nothing). I was on these for a year with no improvement. My sleep was getting worse and worse because of the ear flutter, and I became socially inhibited because the palate crackling in my face was audible enough that other people noticed it. When I finally figured out my palate was jumping, I showed it to the ENT, but after an MRI (which was normal) and some more Gabapentin, she gave up and referred me to a neurologist, who wouldn't see me when she heard it was palatal myoclonus.

In the meantime, the ear fluttering got so bad I could only sleep 3-4 hours a night. The ENT had no ideas and I ended up going to my GP, who put me on Flexeril, 30 mg. The meds were a godsend because they killed the ear fluttering, but they didn't touch the palatal myoclonus. Desperate, I went to a massage therapist; her solution was to press around my tensor veli palatini and pterygoid muscles to deactivate the "trigger points" that might be causing those muscles to make my palate hiccup, and I can get overnight relief from the palatal myoclonus. I can repress the palatal myocolonus "hiccups" on my own, but it takes mental effort, and in the meantime, I get this really intense Restless Leg sort of feeling/energy in the roof of my mouth, which feels very uncomfortable. My palate constantly feels like it "wants" to jump.

Other times when I try to repress it, the lip spasms come back.

So that's my tinnitus. I manage it by taking Flexeril (I can't skip any doses or the ear fluttering comes back), masking with violet noise when I'm not at work, and trying out trigger point therapy on my tensor veli palatini muscles (either with the massage therapist or on my own, but the results are always temporary). Most days my concentration is shot. Right now I have a referral for a neurologist who is willing to see me at the end of July. I have spoken to my dentist about it and he believes I need intraoral Botox. The tinnitus has permanently altered my life, because I can't continue my side job as a wedding/funeral singer any longer (either because the palatal myoclonus hiccups are too intense to sustain notes, or because the lip spasms make it difficult for me to sing words without slurring). My face feels so uncomfortable all the time.

Thanks for reading this post. If anyone has had and beaten this condition, or just has any advice/insight to offer, I would love to hear from you.

 

Hello, I am in the same boat. I am taking Mysoline for my Palatal Myoclonus and it does decrease it, however, it doesn't stop it. I am going absolutely insane that this is going to be a permanent condition. I cannot live with this.

 

Hi Audiophile,

So sorry you're dealing with this too... it truly is an awful condition. I have read elsewhere that some people were helped from taking L-Theanine and Magnesium Salicylate. I just started out on them, and I'll report back here if they help!

 

Do you think that Palatal Myoclonus should be able to be treated? It doesn't make sense that nothing in the world can stop this from moving.

Please keep us updated on your results.

 

Hi,

Just wanted to pop back in and say I am getting some relief from L-Theanine! I have to take a minimum of 400 mg a day (I am NOT a doctor so I don't know how much is safe to take per day) but immediately after taking it, my soft palate calms down a lot.

I got in to see the neurologist early and he wants me to discontinue a certain medication I've been on for over five years because he read somewhere it can cause myoclonus. If that doesn't work, he said we can try the Botox. I'll let everyone know how things go. I don't see him again for a few more months.

This is where I got the idea to try L-Theanine by the way.