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Jaw Jerks When Speaking/Thinking/Reading - Involuntary, 10 years + No Results

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Old 04-25-2019, 12:36 PM   #1
DKMin
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Default Jaw Jerks When Speaking/Thinking/Reading - Involuntary, 10 years + No Results

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.
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Old 05-23-2019, 04:07 PM   #2
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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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Old 05-26-2019, 02:39 PM   #3
Gethprime
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My Mood: Jaw Jerks When Speaking/Thinking/Reading - Involuntary, 10 years + No Results
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Quote:
Originally Posted by DKMin View Post
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
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Old 05-31-2019, 11:13 AM   #4
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Quote:
Originally Posted by Gethprime View Post
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!
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Old 06-03-2019, 03:41 PM   #5
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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
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Old 06-19-2019, 07:19 AM   #6
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Going to try Piracetam, read it is even prescribed for Myoclonus in the UK. It is a nootropic, must be safer than Clonazepam.
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