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Speaking Jerks/Spasm Mylohyoid Digastric jerk

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KDaniel View Drop Down
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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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KDaniel View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KDaniel Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2019 at 1:35pm
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ask a PT Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2019 at 5:32am
When you saw a PT, did your treatment include dry needling? DN can help with releasing trigger points and loosening the muscles that are involved at the TMJ. IF not, it may be worth a try to see a PT that performs DN since you have tried everything else.
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KDaniel View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KDaniel Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2019 at 7:38pm
Thank you so much for the reply. No, it didn't include dry needling. Is that similar to acupuncture? I thought about trying acupuncture but have spent so much money I am reluctant unless I know it will help.

Another update, I saw a chiropractor and he took an x-ray. He said things were slightly out of alignment. I signed up for 12 adjustments over the span of about a month and a half. I just finished the last session and did not notice any improvement...another $500 gone with no results.
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fishlog View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote fishlog Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2019 at 8:35am
Created an account just to answer your desperate call. IMO there are few alternatives to botox. I myself has dystonia affecting the digastricus. There is no other help than botox. If you are not insured the price tag is hefty but Worth it. Spasm in digastricus affect the upper spine via the Mylohoid bone and the effect could be disastrous. Go and get a fair amount of botox but not to much though since it will impair swallowing. One more thing also: Check your Pterygoids in the cheek. They might also need a shot. But forst, see a doctor specialised in dystonia for measuring your muscle tonus with EMG, and go now!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KDaniel Quote  Post ReplyReply Direct Link To This Post Posted: May 23 2019 at 4:04pm
Thanks for the reply, I did that exact thing. I saw dystonia specialists at the University of Minnesota. They put an EMG in different areas around the Suprahyoid region. They said the muscles were loud. I got a Xeomin (Botox) injection. I did not experience any relief but they did say it was a fairly small amount since it was my first time. The bill...$2,400! No way am I "trying" it again! My insurance doesn't pay until I reach my deductible and it is a high deductible plan.

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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KDaniel Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2019 at 12:03am
Look what I found! This is what I have!

https://www.youtube.com/watch?time_continue=1&v=KnK433gXetQ

Is there a fix? Anything to reduce the involuntary movements?



Edited by KDaniel - Jun 01 2019 at 12:10am
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