Advice on How to Treat Essential Palatal Myoclonus?

Hello! Male, in my early 50s. 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 2010 I went through a bout of complicated stress 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 a couple of 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. 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.

 

Hey,
So palatal myoclonus is hell, slowly driving me crazy(er). When I was first diagnosed I was prescribed Clonazepam and that sorta worked, but in the sense that I couldn't feel anything anymore. couldn't stay awake for longer than 3 hours, and I lost my memory for 4 months forcing me to drop out of college (plus I went through an absolute bitch of a withdrawal when I had enough of it and stopped taking it). Right now I take Gabapentin three times a day, which doesn't work nearly as well, but it makes the clicking quite enough that people around me can no longer hear it (so now it's just a noise in my head, yay) and honestly I still have days where it's so bad I just take a shit ton of gabapentin so I can sleep. I'm trying to set up an appointment with a supposed specialist in Illinois (I live in WI USA) but I don't have high hopes.

Now that I'm done complaining (thanks for listening, really) some things that have worked for me are decongestants and stretches for my neck. I find that the less phlegm (sorry if that's gross) in my head, the less loud the clicking is. but non of these things help with the pressure, the constant pain in my throat and mouth, or the thumping in my head.

hope this helped someone, and if someone has got help for me that would honestly be a life changer.

 

So sorry you have to deal with that. It really is hell. I was actually on Clonazepam recently for a month per the neurologist but am weaning off now because it didn't work for my myoclonus (really sorry to hear it had such a negative effect on you!). The L-Theanine stopped being effective shortly after my post, and then when I ran out I didn't get more. I'm thinking of trying it again because maybe it'll work better in combination with this new med the doctor has me on, carbamazepine. I think he wants to try as many different meds as possible because he is worried about the risks of Botox.

I hope you can get in with the specialist. I agree, the pressure and the pain are just awful and nothing seems to touch them. I'm still singing flat because the pressure literally seems to "weigh down" any note that comes out of my mouth. I will continue to update this thread if there are any breakthroughs. I just started Carbamazepine today.

 

Hey so update.

I'm getting botox at the end of the month, and then I'm getting an MRI because the Dr I saw is worried my myoclonus is caused by brain tumors.

I don't have any new information about working treatments, I'm just scared. I've been scratching the base of my skull until it bleeds for the last few months and I just have to wait a month not knowing. And if I the botox doesn't work then that means this is just my life now. Having to choose every day between pain or taking meds that make me slow and dumb.

I'll update again with the results of botox, but I just needed to vent to people who understand. I'm running out of options and hope and just wanted to know that there are other people who can, have, and are living with this.

Stay well and keep strong.

 

Hello,

I am a fellow Palatal Myoclonus/Middle Ear Myoclonus sufferer. It’s been 9 years since the ear started, 8 for the palate.

I am about to undergo a Tenotomy surgery for the Stapedius & Tensor Tympani muscles. I’ve been given a 50%-60% chance it will resolve it. Doubt it will work but I’ve exhausted every avenue that was medically available to me.

The only significant relief lasted 24 hours and came from a TMJ massage. That massage around my jaw completely stopped the middle ear myoclonus and the palate almost stopped completely. Symptoms returned and the same massage never worked again. A one-off. A clue somewhere that is just out of reach.

 

So here's an update.

I got Botox (2.5 units on each side of the soft palate), and it's honestly a god damn life changer. The pain is completely gone; I didn't know that was a thing, the day after the procedure I woke up scared that something went wrong because I thought I couldn't feel my head anymore. Nope, could feel things just fine; I just didn't know that not being in pain while not high on my meds was a thing. The pressure hasn't gone away, and the clicking sound is only reduced (6 times a second down to 6 times a minute!) but I honestly can't recommend talking to your Dr about Botox enough. The downsides of Botox are 1. its expensive without insurance, and you will probably have to get new injections 3-4 times a year. 2. there can be some trial and error with getting the right dosage. but honestly, that's it, I myself was against botox before, but now I wish I had gotten it years ago, its not just getting rid of the pain, but getting of my meds, I feel like me again for the first time in a long time.

(next part is asking if anyone is familiar with a situation like mine, feel free to skip if just looking for advice)

In some slightly more bummer news, while I have officially confirmed that I don't have brain tumors (yay!) my dr is saying that the combination of the clicking processing while I'm asleep, along with other mussel spasms I have, make it unlikely that I have essential palatal myoclonus Over the next month, I'm getting tested for spinal tumors, Wilson's disease, and M.S.. So that's a bit of a downer, and I was wondering in anyone was familiar with a link between any of those things and palatal myoclonus. Hopefully, everything turns up negative and I can get back to people just saying " idk that's weird" when asking why the clicking is happening just like everyone else with palatal myoclonus (I never thought I'd miss that)