Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Oromandibular Dystonia

Since last Friday my Oromandibular (jaw) Dystonia and tremor has been rather bad. These spasms leave my jaw extremely distorted and the pain is constant. Unfortunately my Botox is a week later than usual, my appointment is not until the 18th of this month. Even though I know it is just under two weeks to go now, I am finding it hard to function due to pain.

However there is always a positive and I refuse to let this be a purely negative blog post. Despite the spasms that were severely affecting my jaw and neck last Friday I still managed to get into college. I cut down my workload as I knew it would not realistically get done without exhausting my body, but I managed to get in, which surprised me as I did not expect to in the state I was in.

It never ceases to amaze me just how exhausting pain is. Today my jaw has insisted on tremoring a lot. I use a teething dummy to protect my teeth and tongue, at the end of my last tremor however I was not quick enough at removing the teething dummy from my mouth, with the way my jaw then spasmed it got slightly stuck…I cannot even begin to describe how much this amused me, it took a whole hour before I was able to pry the dummy out from between my teeth. It really was hilarious.

It is moments like these that are vital. Dystonia is hideous. The pain that I am going through on a daily basis is enough that all I want to do is curl up in a ball and sleep until I can get my Botox injections. But sleeping won’t raise awareness of the condition, hiding away won’t beat the condition. Moments of pure hilarity are part of what makes Dystonia bearable and I am so thankful for these moments!

Comments on: "Oromandibular Dystonia" (7)

  1. Thanks for that. My dystonia is pretty minor, certainly not generalized, and not even oromandibular by jaw muscle involvement, but still in that category. The muscles of my chin, lips and mouth are involved, so when I talk, I kind of pucker up like a fish or have to screw my mouth up to make words and sounds. Without botox, my teeth cut into the inside of my mouth, because of the muscle tension. At least the botox relieves that some. It’s only just happened in the last year, and I basically talk for a living, so it has impacted my life and work, or at least my perception of it, greatly. Some days I’d just rather not talk at all, but I have so much to say!
    Laughing helps a lot. I always joke with my wife about it. She’s suffered from lupus for 30 years. Now I know what it’s like to “have something.” The doctor is very careful about botox, because she doesn’t want to use too much. I ask her “What can it do, make me talk funny? I already do!”
    I’ve gone from never having heard the word dystonia before to a pretty thorough understanding of it, and exposure to many people with very serious and debilitating forms of the condition in about a year. My heart goes out to those of you who suffer constant pain and true debilitation. At least I just talk funny.

  2. Rebecca, I feel for you! I have OMD, but so far it’s not really painful. My jaws are clenched A LOT & I blend all my food,except for soft food or some that I can suck to pieces! My speech is getting very difficult to understand, so Kirby, I can’t imagine talking for a living! Bless you!
    I also have generalized (mostly L arm & leg & shoulders & neck), and blepharospasm. Botox doesn’t work well anymore, so we’re using Dysport (fairly new neurologist) & still experimenting.
    What would we do without a sense of humor?!! And knowing that the ‘real me’ is more than this body~

  3. Rebecca says she has no idea what is going on. I think an analogy with an orchestra might be useful – where the muscles are the instruments and your mind is the conductor. The instruments/muscles are not doing what they should be at the right times, but the fault is actually with the players (cf part of the brain) rather than with the instruments/muscles themseves – which is very frustrating for the conductor/your mind! A lot of drugs work on the muscles/instruments but, really, help is needed a bit higher up in the “chain if command”.

    We haven’t got the right treatments yet, but people are trying hard to find them – so hopefully one will be found in the not-too-distant future!

  4. Dystonia Sucks. I have Action Induced Segmental Dystonia. None of the drugs or botox/dysport injections work for me.

    I’m seeing a Functional Neurologist at the moment and have had more positive change with these guys then I have had with mainstream neurologist.

    It seems to me that trying to treat Dystonia with drugs is like banging a thumb tack in with a sledge hammer. Totally wrong tool for the job. Sure it might work, but it’s just treating the symptoms and not training the brain to rewire itself and work around the Dystonic issue.

    Goodluck with your journey. You’re far too young to have your life hijacked by this disorder.

  5. Hey there, dear friend!

    As you know I exhibit OMD, along with many other issues with Dystonia, Parkinson’s, Narcolepsy, Hydrocephalus, Neuroacanthocytosis, and Non-Epileptic Seizures.

    The OMD started as problems with my speech and eating. Laryngeal Dysphonia hit me first, hit me really hard, and has been a work in progress since Tuesday morning, 27 November 2007. I now use my epiglottis to produce the sound for my speech, because Botox was a resounding failure, but Dystonia does wonders for Welsh!

    Before that I was always biting my tongue (sometimes to the point of some serious pain) and a tick that was like an errant set of muscles jumping around, wiggling on my face, and then my cheek, eyes, and strangely my scalp. When I wear a hat the muscles literally rotate my hat in a clockwise formation, as if my face wants to become some hipster in Kreuzberg, Berlin. (Well, truth be told, I would love to live in Berlin.)

    My OMD increased in intensity until last August, when suddenly I experienced what I personally refer to as “lock jaw.”

    Have you ever experienced when your mind is directing your jaw to relax, because your muscles feel like someone took hold of them, using their foot on the back of your head for leverage, pulling it more and more. What is the result for your request? Your jaw ups the ante, and clicks into your skull with even more pressure. The pain is unbearable, and the force is so strong that you broke three molars and the enamel began to chip enamel into a chewable substance before they break apart, exposing the nerves, and because of the Oromandibular Dystonia a regular Dental Surgery doesn’t work, as they stuck a mirror in your mouth, and your jaw clamped down and broke the mirror in the mouth.

    Does anyone relate to this? That’s my experience with Oromandibular Dystonia so far.

    **– After seven months of being concerned, in pain for two of the teeth (the third tooth is now fully dead). The wait resulted in infection developing in the teeth, roots, and gums. They are going to start the first operation to extract, develop and place a crown on my milk teeth, because milk teeth are unable to maintain a bridge due to their short roots, and I have six of them, as well as missing 7 adult teeth. (One turned into an odin toma, a tooth tumour, that was discovered to be bone cancer. My mouth was wired shut for months, making chemo exceptionally rough.)

    Dental plugs will be installed as well, so I will finally have a full set of teeth, and it will be all done under heavy sedation, starting on 4 April, and likely will require more than one session.

    So, at 47 I will finally have a full set of teeth, all because of Oromandibular Dystonia. There are silver linings on cloudy days!

  6. My brother recommended I might like this blog. He was totally right.
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