Medical Questions > Conditions and Diseases > Muscular and Nerve Disorders Forum

Speaking Jerks / Spasm of Mylohyoid, Digastric, and Tongue

Hi everyone, I have a post in the TMJ section that is 6 years old. I now know that I do not have TMJ so thought I would post here. This has been a long and plaguing journey for 10+ years. When speaking/deeply thinking/sometimes reading, my lower jaw/tongue jerks involuntarily. It is much worse if I drank alcohol the day before. I have no trouble eating or making voluntary movements. The lower jaw jerks in a slightly open and pulled back position. When speaking it sounds like I am loudly stuttering or quickly yelling because of this quick jerky movement. I have felt around my face when this occurs and I do feel the Mylohyoid, Digastric and tongue muscles activating. I have not figured out a rhyme or reason when and why this happens.

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.

I feel this is holding back my career and relationships. Anyone heard of this or have any ideas on what to try? Some days are ok where I do not even think about it and some days are so bad I do not want to speak at all or leave the house...I am desperate to figure this out.

Below is a list of things I have tried so far (oldest to newest):
-Saw a TMJ specialist (took x-rays and exam, nothing wrong found with the joint)
-Saw a physical therapist that the TMJ specialist recommended (gave me exercises to do)
-Had a $175 NTI appliance made to use at night. Heard these are temporary so went to the more permanent one.
-Went to a dental specialist and bought a custom anterior deprogrammer that was $600, no noticeable difference.
-Took sleep apnea test, oxygen levels were ok
-Tried essential oils directly on muscles, all different blends
-Tried messages
-Tried Magnesium supplements
-Tried a microwavable warm compress
-Bought a TENS unit, researched and found 220us at 10hz was best for head/neck muscles, no noticeable difference.
-Tried sleeping with no pillow, a rolled-up towel under my neck, tried multiple different pillows
-Saw a Craniosacral Therapy specialist. I did 3 sessions with no results.
-Saw a renowned DDS and professor, he does not think anything is wrong with my jaw and thinks it may be oromandibular dystonia.
-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. 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.
-Saw a Dystonia clinic and received Xeomin (Botox) injections in Mylohyoid and Digastric area. It was a very 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 that was not covered. The Dr. did also prescribe Clonazepam (Benzo) which actually does help. However, I am worried taking them since Benzo's are not meant for long term use and can change things cognitively, it really concerns me taking these. Right now I am taking two .5mg tabs per week.
-Saw a different physical therapist who has worked with Dystonia patients, she tried to message the suprahyoid region, no difference.
-Am now trying The Thiamin Protocol (B1 HCL and Magnesium) has helped some stutterers in the past, mine is not a typical stutter however, no results so far.
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replied March 1st, 2019
Hi, just an update, I saw a speech therapist. He basically gave me exercises to do such as deep breathing, tongue posture, etc. It has been about a month since I saw him and have not noticed any effect on the lower jaw muscle contractions.
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