For about 10 years now I have had lower jaw jerks/involuntary movements when speaking, sometimes reading, and sometimes when I am thinking of what to say. It is worse if I don't sleep well, drank alcohol the night before, or am thinking deeply trying to explain things. I have no trouble eating or making voluntary movements. There is no click or popping of my jaw. The lower jaw jerks in a slightly open and pulled back position in a very quick and sudden movement, mostly affecting what appears to be the Mylohyoid, Digastric and Tongue. When speaking it sounds like I am loudly stuttering or quickly yelling. There is no pain.

Nothing I have tried has made much difference. I have spent years researching and thousands of dollars with no results. I don't know what to do anymore, it is so incredibly embarrassing and infuriating when I am speaking at work and it keeps jerking, people look at you like you’re crazy. I feel drained both financially and emotionally.

THINGS I HAVE TRIED:
-Pre 2016 Tried sleeping with no pillow, a rolled-up towel under my neck, tried multiple different pillows
-Pre 2016 Tried messages
-Pre 2016 Tried essential oils directly on muscles, all different blends
-Pre 2016 Bought a TENS unit, researched and found 220us at 10hz was best for jaw muscles, no noticeable difference.
-2016 Saw a TMJ specialist at Edina’s TMJ and Facial Pain Clinic (took x-rays and said he couldn't find anything wrong with the joint)
-2016 Saw a physical therapist that the TMJ specialist recommended (gave me exercises to do)
-2017 Had a $175 NTI appliance made to use at night. Heard these are temporary so went to the more permanent one.
-2017 Went to a dental specialist and bought a custom anterior deprogrammer that was $600, no noticeable difference.
-2017 Took sleep apnea test, oxygen levels were ok
-2016-2018 Tried Magnesium supplements of all different varieties
-2017 Tried a microwavable jaw warm compress
-2017-2018 Saw a Craniosacral Therapy specialist. I did 3 sessions with no results.
-2018 Spoke with a Homeopathic Dr and tried the following medications Staphysagria 30, Belladonna 30, Mag Phos 30,
Calcarea Fluorica 30, and Veratrum 6C, no difference
-2018 Saw a renowned UofM professor (Dr. Eric Schiffman) who has practices throughout the metro area. He does not think anything is wrong with my jaw and thinks it may be oromandibular dystonia.
-2018 Saw a neurologist – took a heavy metals blood draw test. No metals besides a slight level of arsenic, nothing to be concerned with the Dr. said. We also took a nutritional deficiency test using blood, urine and saliva. I started supplements on B6, B12, Folic Acid, Vitamin D3, Magnesium, and Calcium. None of my deficiencies were in a high need column. Since starting the supplementation, noticed no difference.
-2018 Spoke with Dr Dennis Dykstra and saw Dr Stephanie Standal at MHealth. Received Xeomin (Botox) injections at the U of M MHealth Neuroscience Clinic, I believe the muscles were the Mylohyoid and Digastric areas. It was a small injection to see if I had any results. I did not see any benefit and am reluctant to try again due to the large cost.
-2018 Saw a different physical therapist who has experience with Dystonia patients. Basically, did a similar routine as the Craniosacral Therapist I saw, tried to message the suprahyoid region, no improvements in jerks.
-2019 Tried The Thiamin Protocol (B1 HCL and Magnesium), no improvements in jerks.
-2019 Saw a speech therapist – showed me breathing techniques (flare lower ribs on inhale), tongue posture, breathing techniques while lifting weights, no improvements in jerks.
-2019 Went to Chiropractor, took xrays of neck area C1, C2, C3. Signed up for a 12 session adjustment. This occurred over the course of 6 weeks, no improvements in jerks.

I did hours of reading this past weekend and think it sounds like Myoclonus, I know that just means an involuntary quick muscle jerk but it fits my description. Also, a common medication prescribed for that is Clonazepam which I received and does help. I'm just really worried about the long term effects of benzos. I've read they can make you foggy and have memory problems. I need to be on the spot at my job and remember project particulars from dozens of manufacturers and different jobs. I usually take one .5mg pill per week.

the most common myclonus (sleep) which I suffer myself seems to be most active when I am/was under alot of stress. factors of stress seem to vary alot and not specific. But I do know that anxiety plays a big role in my myclonus events

I do not think mine is terribly stress related. Today for example, I am only at work half a day, it is nice and sunny out, nothing too stressful at work, etc. However, today is horrible with the involuntary lower jaw movements. I do not know why, I have not really done anything different the past few days. This is so debilitating! I have to figure something out!

I found a video of someone who has the same thing! Unfortunately, I cannot post links until I reach post count 10. In all the years that I have searched my movement disorder, I have never found a video of someone with the same thing! I plan on posting the link as soon as I reach post count 10.

Thanks

Going to try Piracetam, read it is even prescribed for Myoclonus in the UK. It is a nootropic, must be safer than Clonazepam.

After a couple months of using it, Piracetam is definitely helping! I wish I knew about this earlier instead of wasting thousands and countless hours seeing "professionals". I take it 3 times a day on a fairly empty stomach. I still get the myoclonus jerks in my jaw but I would say it is 70% improved!

Hi,

Is this ** from the old tmj forum?

Well done on finding something that helps! That’s great to hear.

Are you based in UK? If so, how did you get hold of Piracetam and do you mind me asking how much you take?

Cheers

J

Hi again,

Does this still work for you?

Do you have any updates?

Thanks

Hi

Are you still taking piracetam?

How is it goin? Would be good to hear from you