Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Earlier on today my jaw developed a sort of tremor. It is extremely painful and my teeth constantly caught against my tongue and gums. It is hard to explain exactly how this tremor goes so I have uploaded the above video.

After taking two diazepam we eventually got the tremor to stop for a short while, however as soon as I tried to use my mouth it set the tremor off again. I am hoping this new symptom will follow the same pattern as all my symptoms when they started. It starts off seeming like it is constant and then gradually calms down so it is still horrid but nowhere near as frequent.

I would be very interested to hear from anyone else who has experienced this type of tremor. So please get in contact with me if you have experienced this or something similar.

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Comments on: "Dystonic Jaw Tremor" (2)

  1. Hope it gets under control soon 🙂

  2. Shelly Forster said:

    Hi its Shelly Forster again,
    I appreciate you being brave enough to post a video. I can relate. I’ve wanted to video myself at times, esp when I am getting my shots. Just thinking it might make a difference on extra disability Medicare coverage. My tongue has moved with such force at times that I have broken 3 teeth and completely rearranged my bite due to the constant pressure from my tongue, mostly on the bottom. Usually it worsens when I am physically or emotionally stressed, so I try to stay off that rollercoaster, if you know what I mean. What is different with me is that talking usually distracts the dystonia, so I have become quite the motor mouth…as if I didn’t talk enough to begin with:) It will be 5 years next month since this health journey began. I know the shots and medication are helping, and I’m still believing for a pain free, spasm free day sometime soon. I am a person of faith, so I do cling to that hope….its just seems that most days I am clinging by a thread.
    It seems that we are both dealing with a really significant life altering health crisis. However, I refuse to allow this disability to define me. I control it…it does not control me. I am amazed by your attitude and devotion to your blog. It truly does help to know that I am not alone in my pain and frustration.
    I may not always comment, but I will always stay tuned in.
    With much respect,
    Shelly

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