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Speaking Jerks/Spasm Mylohyoid Digastric jerk

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KDaniel View Drop Down
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Joined: Nov 21 2018
Location: MN
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    Posted: Nov 21 2018 at 9:30am
Hi everyone, first post, trying to figure out something that has been plaguing me for 10+ years. When speaking/deeply thinking/sometimes reading, my jaw jerks involuntarily. It is much worse if I drank alcohol the day before. 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, tongue also moves I believe. 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 and Digastric muscle areas is firing. 

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. Any ideas on other things I can try? 

Below is a list of things I have tried so far:

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 UofM 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.

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.

Thank you for any help! I am desperate!

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