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    Spasmodic Torticollis
    avatar
    Reiddeeds posted:
    I was diagnosed with ST about 2 years ago. The symptoms had been creeping up for years, until finally, I was unable to hold my neck up straight.

    As all of you know, this disease is utterly horrific. It affects your life in everyway, and every task becomes nearly impossible. It is not clear to me why there is so little known about this disease. I have seen theories on what may cause this, but personally, I have not seen a lot of discussion from those suffering with this why think they developed this.

    For me, I had been doing the same line of work for years, which required me to be on the phone nearly all day. I did not have a headset, and while I was on the phone, my neck naturally had to tilt, so I was able to multi-task. I believe this may have definitely contributed to this disease, but I also have severe anxiety, and when this flairs up, my ST really flairs up too. In addition, I was in a car accident several years back, and wonder if the trauma from it, also played a factor.

    I am currently on a medication regimen that is working amazingly. I am able to hold my neck upright, and the only time my ST becomes apparent, is when my anxiety is at its highest. I also have severe neck pain, but this bothers me less than the inability to hold my neck up.

    I was prescribed Trihexyphenidyl and Baclofen about a year ago, and within days, my symptoms decreased significantly. Then, one day, I realized I was holding my neck upright! Honestly, I couldn't believe it! I told people, it was if I had lost a leg, and it miraculously grew back! I seriously couldn't believe it, and I feared constantly that this would be a short-term fix. Well, it's been almost a year now, and my head is still upright! But again, it will flair when I'm under great duress. However, I've learned to manage these symptoms better, since I definitely do not want to live in chronic misery. I also do neck exercises, and rest more often when these symptoms occur.

    In closing, I would highly recommend trying these two medications to see if they help you. Also, I would be interested in reading why you think you may have developed this disease.

    Good luck everyone and I truly hope you find a way out of your living hell! Prayers to all of you!

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