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

Jaw Acrobatics

Oromandibular Dystonia was one of my first symptoms that I suffered from before the Dystonia became generalised in 2012. Working on a trial and error basis with my Neurologist at the time we tested which Botox routine would best work for me, as it was clear 12 weeks was too long a stretch. Eventually we found the magic number, 6. Since then I have had my injections every six weeks and it has only been on the rare occasion that I have had to deal with my jaw spasming.

Jaw spasms. Two little words, yet they strike so much fear in me. The small spasms at best are uncomfortable, the extreme ones dislocate my jaw and cause seizures. My little alien loves causing spasms that leave me crying, clutching at my face as it contorts. In all honesty I couldn’t tell you why I grab my face. It’s an automatic response, as if a small part of me believes that if I clutch hard enough or push in the right direction, the pain might all go away. A child’s belief really, but one I find myself immersed in every time.

You would think that after almost three years of Benedict pulling my body this way and that, that I would no longer feel embarrassed by the teething tummy I resort to using to help prevent my upper teeth digging into my gums during a spasm, that I would no longer feel humiliated by the fact that I have no control over the majority of my body. I deal with the embarrassment better than I used to. I now force myself to carry on with my life and go out when I’m spasming, whereas previously I’d have shut myself away.

teething dummy

I spent Sunday with my boyfriend, it was the first time he had seen my facial spasms. He was great, and helped me medicate myself. At first I dealt with it fine, but eventually as the day wore on and I got tired, the spasms got worse until I resorted to using the teething dummy. I’ve only met his family a few times, so my embarrassment levels sky rocketed at this point. It’s not how I want them to see me, though I know that for them to be aware of my condition is a positive. What 22year old wants her boyfriend’s mum to see her with a dummy?! These are all qualms I need to get over, and with time I shall do.

I have sent my old neurologist an email informing him of my rather disappointing appointment with my new neuro. I am hoping that he will be able to speak to my current neurologist, so that he will agree to do six weekly injections. It may be a long shot, but it’s getting hard to hold my head up as well now. My next round of injections is not until the 12 August, so until then my dummy and TENS machine are my best bet.

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Comments on: "Jaw Acrobatics" (1)

  1. Melanie Winrow said:

    Thinking of you … I wish I could say something to help (I understand the embarrassment so well!) All I can say is those who love you will accept you for who you are – not what you are using … the dummy is not part of you as a person. Not sure if I’m making sense … it sounds like your boyfriend is a lovely, supportive person – just what you need as you deal with everything Benedict throws at you. I’m praying that you get your botox injections earlier than August 12th – that’s a long time to wait. Hope you don’t mind but I’m sending you healing. Doctors are so inconsiderate (or should that be uncaring …) My neurologist refuses to do the botox more frequently than every 6 MONTHS … I had very little vision on holiday and then last weekend it all went pear shaped when my eyes closed for most of the evening (only had sight for about an hour yesterday) … my niece told me she thought it was a bad idea for me to play with the rest of the family because I couldn’t see … In desperation I reached out to my doctor and she’s given me citalopram … not for depression but she said it may help my eyes … not sure what to think and I’m scared of taking it after a terrible experience with Duloxetine but I’m desperate. Thank you so much for all your entries on your blog. We are all rooting for you … You are an inspiration!

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