Another Noob with Palatal Myoclonus

[PoodleChick]

Hi all. Just found this group online so yay for that.
I started having what has now been diagnosed as palatal myoclonus just since June of 2015. It started with a huge yawn and a CRACK of the corner of my jaw, not painful at all, and then an odd fluttering behind the eardrum of the opposite side from the jaw crack. Then the thumping started. It was intermittent for the first day and then nearly constant, varying in intensity during the day.
I have been to two ENTs, both of whom are sure it is pm even though neither could find a part of my soft palate that was vibrating. I have had the usual tests (audiometry, tympanometry and MRI) and all are normal.
I live in California and you would think that the state that ought to claim Botox as it's State Drug would be able to produce a doctor able to inject it but no, you'd be wrong. So far I have come up empty with all the ENTs I have checked out at Stanford and UCSF, as well as Palo Alto Medical Foundation and the other smaller local hospitals. My current ENT is trying to find me someone but I suspect it will be for naught.
I am taking muscle relaxants but really all they do is keep me from wanting to kill myself or someone else. I had four or five days of total relief after starting magnesium salicylate, but it didn't last. Same for Skelaxin.
I just want an ENT who will entertain the notion of Botox and we can see if it works. I am not totally convinced it is pm, why not spatial muscle spasms? I've read that they are not always objective in sound.
I have another visit scheduled for next week at an ENT speciality center but have already been told by my primary doc that they don't use Botox there either. I see a neurologist in two weeks for some drug recommendations. I use my iPod as a masking device.
I am miserable.

 

[marqualler]

I know @Chelles knows about this. Maybe she can help!

 

[Chelles]

@PoodleChick sorry to hear you're having a hard time with your ears. Like you I also have thumping in my ears especially after yawning or a hiccup, they feel like a fluttering/thumping and it's very annoying to say the least.

I went to an ENT but unlike you I wasn't diagnosed with Palatal Myoclonus since at least for my understanding PM is visible (try looking it up on YouTube you can actually see the muscle moving when you open your mouth and it makes a clicking sound). I was diagnosed with Middle Ear Myoclonus, my stapedial and tensor tympani muscle are contracting. I've had it for 9 months tried muscle relaxers they didn't work, the only thing that helps a little is wearing a foam earplug while my ears are twitching.

If your diagnosis is right and you do in fact have PM then I don't see why doctors don't do the botox since that's a very effective treatment for PM. Hang in there and hope you find a good doctor that will listen to you soon and please keep us updated!

 

[PoodleChick]

I just saw this, it went to my Spam file. I just saw a new doctor, this one affiliated with Stanford Medical Center, and he suspects middle ear myoclonus as well. This is good news for me, since finding a Botox guy is not going well.
I go back for a hearing test and then wait till my insurance changes. If so I plan on doing the surgery. It actually seems to have gotten much better than it was for the first few weeks. I have added boswellia and turmeric for their anti-inflammatory actions and stopped the Flexeril which didn't work anyway.

 

[JJCollins]

I have been meaning to post this information somewhere for a while because I feel kind of bad knowing I may have stumbled across something that has cured my palatal myoclonus and I have just been too lazy to share it.

I have bad flare ups of spasming in my soft palate, sometimes clicking 50 times a minute. It makes my throat hurt and I get to the point where I can hardly talk. It is exacerbated when I am under a lot of stress. This actually led to my solution. A friend of mine recommended L-theanine for my anxiety and I took her advice. After taking it regularly for a couple of days, I noticed that my clicking wasn't as bad. It eventually went away completely. Now, whenever I start to "click", I just start taking the L-theanine and within hours to a day, it is gone.

I don't know if this would work for anyone else, but I wanted to share in case it was helpful. I don't sell it and I don't benefit from you buying it from your local health food store. My only purpose for posting this is to maybe help someone else because I know how miserable this condition is and I actually accidentally found something that truly works for me.

 

[PoodleChick]

Hi JJ
Thanks for the advice about the L-theanine. I did try it and didn't notice a difference but you never know till you try. However, in the better news department, I went to a new ENT and was given a much better exam and additional hearing tests, specialized ones designed to detect tensor tympani and stapedial spasms. I have both and will have the surgery within the coming month or two. The office I went to is supposedly working on the insurance aspect of it which is a story unto itself. I also started acupuncture and chinese herbs. The herbs worked wonders when I had Bell's Palsy in 2007. They seem to have dampened the clicking I hear but it is too early to tell.

 

[Kee]

Hey PoodleChick.

A few things.. I was diagnosed with PM 2 years ago now, and this condition has completely rocked my life.

My palate is very visiblly moving, and I think if you truly had PM you could clearly see it moving...Look up youtube videos on it. There is a very clear movement occurring in the soft palate with PM patients...but it does seem like you have seen some better doctors and are now on a different path (due to your last post)

This condition sucks and it's funny you reference doctors. They know NOTHING about this disorder. It's very rare and there is limited info on it. Unless a clear brainstem lesion is detected, you will find doctors are clueless on this one-which fuels more frustration that I am walking around with a 24 hour seizure in my mouth/throat muscles. This creates an insane amount of head pressure and strange auditory symptoms as well.

I have been trying to get help for years. I have seen countless doctors and have gotten no true help. (I will elaborate more if anyone is interested on my symptoms and experience with doctors)

I experience MUCH MORE than clicking in the ears, and many others with PM are in the same boat. I'm not on FaceBook at the moment, but there is a private group on there if you really think you have it (or anyone else on here). (join the one run by Stella).

Anyone that wants more info on this condition, I will answer in this thread or through private message.

And JJCollins. That's interesting. I have tried so many medications, remedies, treatments that have done nothing but I'll give that a shot. Why not...If that doesn't work I'm moving on to crack or crystal meth..

 

[Kee]

"If your diagnosis is right and you do in fact have PM then I don't see why doctors don't do the botox since that's a very effective treatment for PM."

I missed this earlier. Just want to clarify, as I am someone suffering with this condition... Botox only helps a very small part of this problem, and it does not help everyone with PM. For some, yes, botox helps. For others, it does not.
And with that comes the side effects/tradeoffs which include nasally speech/difficulty swallowing/etc. Also, botox is very dependant on which spot the injection is made. So it might work good the one time and then the next it might barely work at all..

The treatments that exist for PM are pretty shitty tbh. Most that have essential PM get minimal relief from any of the meds that exist for it. Clonazepam helps some. For me, it helped for the anxiety (at first), but did nothing for the tremor. Most medications simply numb the problem-they don't actually stop the tremor. In fact, I will go onto say that some of these meds have caused more problems and I am worse off for even trying them in the first place.


You'll find that everyone that has PM (the essential kind) has different variations of this disorder..And the combination of this fact, with the rareness of the condition make it very difficult to treat..

On a side note: Anyone that sees this: avoid the scam-artist chiropractor who is out there to "help" people with PM. All he is really out to do is take your money..

 

[PoodleChick]

Kee, I suppose you have seen neurologists and they were also unable to help you? Or the meds were too rough to stay on? Supposedly low-dose Keppra is effective for many people with PM.

 

[PoodleChick]

A friend of mine also recently sent me a link to a study on using taurine to treat tinnitus. The lab results in rats were encouraging, haven't read the full study to see what the effects were on humans but I can post it here if interested.
And I agree about the paucity of treatments for PM. I don't have that as it turns out, but the great amount of research I did when I was diagnosed with it showed me how ill-equiped most ENTs are to even discuss it let alone treat it. And having them infer or outright state that it was caused by stress and anxiety rather than the condition itself causing the stress, anxiety and high blood pressure was infuriating.

 

[Kee]

Hey Poodlechick. I have seen 4 neurologists and 5 ENTs now (and tmj docs/chiros ETC ETC). Yes I have tried keppra-did nothing...
And I could probably write a book on some of my horrible experiences with doctors/medicine but that's for another time...
Some have legitimately tried to help, but it always comes back to: this condition is rare and under-researched.
So the majority of doctor visits-
nothing comes out of them, and this obviously is not fun when you are suffering every day of your life..

 

[Hariz Nonis]

Hello!

I hope someone is still active here. I might have Stapedial Myoclonus. I have a few links below, and I hope that someone can read them in detail and tell me if it is indeed Stapedial Myoclonus!

https://www.tinnitustalk.com/threads/is-my-respiratory-system-causing-the-ringing-i-hear.32703/

https://www.tinnitustalk.com/threads/ringing-sound-when-i-burp.32800/

https://www.tinnitustalk.com/thread...g-reacts-to-certain-sounds.33011/#post-401274