Dystonic Tics

While I was in hospital, I was told for the first time that some of my tics were defined as “dystonic” movements.  After being told that I found a really useful post on Touretteshero that helped to explain that a bit more for me.  I think now I’ve got a pretty good handle on identifying certain types of tics, Jess is awesome for that!

Usually I find that computer gaming helps to relieve my tics to a point – often if things get too tense I will have to stop as it can have the opposite effect, but I’ve noticed that being distracted tends to reduce them.  I also play bass to relieve the tics, that actually works better than gaming most of the time, but since my little stay in hospital I’ve been struggling to get the hard skin back on my fingers so my playtime on it is very limited.

Last night seemed to be an exception to the rule, I had been happily playing guitar and doing various musical things all day.  A friend of mine bought me a game that I have been waiting for a long while to have the money for!  It’s called DayZ, it’s a fairly unforgiving zombie survival game.  At first things were fine – I had to deal with the usual problems I have playing first person games – hyper-extension tics taking me away from the keyboard, my mouse arm lurching around in all directions – and all of the other stuff that you can probably use your imagination work out.  Then towards the end (I called it quits) my dystonic tics seemed to crank up a notch.

Very quickly I started finding myself contorted into various painful positions.  Extending fully backwards to the point where muscles were locking/cramping, pushing my shoulders back hard and locking them in place, neck tics that felt like I was going to twist my head off of my shoulders.  Then a little bit after that started my vocal tics went wild and I started getting an increase in the violence of the tics again on top of it all.  It’s all fun and games until you lurch backwards and lock in place hard enough to tip your chair and land on your head, then because your back is locked keep banging your head on the floor until you can get up.  That happened three times – the second time my chair rolled to the side while I was locked wedging me painfully between it and the sofa.

I ended up calling it quits at that point.  And on waking up this morning and everything hurt!  I must have strained all of my chest, neck and arm muscles during that patch.  The tics were fairly average (for me at the moment) yesterday up until then.  I checked and I definitely didn’t miss any Baclofen, I had the same amount of Diazepam I have on a normal day at the moment.

What a pain!  I hope it doesn’t become a regular thing, that would drastically cut down my pool of stuff to amuse me while I’m stuck inside waiting for this wheelchair!  On the bright side, I so have a rough delivery date now, they are aiming for the first of March. 🙂  Roll on (no pun intended) the times when I can GO OUTSIDE AGAIN!! 🙂

A friend shared this a while ago, sorry for nabbing it and using it, but it pretty much sums up how I felt this morning when I woke up to my usual involuntary morning exercises…

ImageEdit:  I have since been told the tics are not, in fact, dystonic.  The more you know, I guess!

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About unexpectedmonkeys

My name is Al, I was diagnosed with Tourette’s Syndrome in my mid teens and it has definitely not improved with time! I’ve discovered how interesting it can make life but I’ve always tried to keep a positive attitude and keep moving forwards.

9 responses to “Dystonic Tics”

  1. chellemills says :

    Can I just say bless your heart?! My 13 yo son was diagnosed w/ a “simple tic disorder” by age 7 and we were told he would grow out of it. Oh contrare mon frere (haha if you could hear my hick accent trying to speak anything remotely close to french you’d get a chuckle out of that one) it has gotten progressively worse over the last 2 years or so. He’s not to the extent of what you’re living with but I feel I can see it coming like a bad train wreck…it’s a lil’ iffy at first, you think the car will cross the tracks but then the battery dies and you’re just watching it all happen in slow motion.
    May I ask you a few questions w/o you feeling obligated to answer? (My son does NOT like to talk about it but you seem very freely sharing so…) You were diagnosed rather late in life but how early do you recall your symptoms starting? Did you feel “outcast” by peers? I’m sorry, I suddenly feel intrusive…
    I’d love to chat sometime 😀
    and btw CONGRADS on your pending nuptuals to Holly!! God bless~

    • unexpectedmonkeys says :

      No problem, I decided to start writing to this blog because I would like to hope it will be of use to somebody in some way!
      Firstly, I often feel uncomfortable talking about it in person as talking about it can often make the tics worse, talking in text form is so much easier! (And I can keep my terrible sense of humour in check a little more easily)
      I was diagnosed at around sixteen or seventeen… some of my paperwork says one, some says the other and it was such a stressful time that I’m not even sure any more! It just exploded with me – before then the symptoms were very subtle.
      Between myself and family talking with various neuros etc, we have identified tics going back as far as young childhood (maybe around five or seven) these were subtle things like repeated movements or certain words/phrases that I would pop out with constantly. One member of my family remembers as well that I used to “blink a lot” (I can’t explain this is text form very well but you might get what I mean!).
      I was a bit of an outcast before the tics got bad anyway, my impulse control has always been terrible – which I’m told is related. I used to shout out things a lot in school and was never listened to when I tried to explain that I couldn’t help it. A few people acted like fools when it got a lot worse, but by that point I had accepted that I was better off without people like that and it didn’t bother me too much. Although one particular friend did act like a complete tool, as did their parents – they said some quite harsh things and unlike the other people that did not just bounce off, it really hurt. But bygones are bygones, I don’t hold grudges!
      Feel free to ask questions, I really don’t mind! And thanks for the congratulations! It’s all happening at once, married in March, DBS in April… busy few months!
      Also when it comes to accents I would be one to talk, I come from southern England and have a slight countryside sound to my accent haha 😛

      • chellemills says :

        Judging from some of the words you used I imagined you from England 🙂
        My son started at 2 w/ a sniff… then there was blinking… neck jerks… hard teeth clinching… throwing his arms.. “stretching his face”… wiping his hands on his butt cheeks (lol this one embarassed his older sister!)… these were things we thought were “habits” and he got fussed at A LOT poor thing..who knew? Around 7 the verbals kicked in & I hit the internet (never ever ever do that…scary place haha…and I decided neurology was best place to start) “it’s like it’s like it’s like” and now more drawn out variations of same phrase. Now at 13 he has a myraid going all the time! He says they don’t “bother him” (unfortunately I was blessed w/ a noise “phobia” and verbals are apparently harder on me). His biggest issue is ACADEMICS!!! My theory is that he’s working so hard on controlling his tics that he can’t focus. His dummy…er uh…dad wants to put him on ADHD meds to “slow his brain” in order to help him concentrate/focus in school. I’ve heard and read sooooo many people say these meds will cause his tics to be worse (OH and he doesn’t have ADHD!! of course his school is in favor of the meds but aren’t they all willing to throw meat to the lions to shut them up) Sorry…this angers me. Do you feel the medications you’re on help you? Were you taking anything during school age? Has it ever been considered that TS is in actuallity a gut-brain issue in other words has there ever been a thought that “diet” could help in a remote way? Are there any food triggers for you? I read a blog from a young girl who very imphatically stated diet was in no way a factor (yet she didn’t say it quite so nicely). Having read all your posts, you seemed more approachable than others I’ve seen….but at any point you can tell me to disappear as I do not want to irritate! I’m excited to have someone to “talk to” as I’m a parent w/o support~ I only want to learn how to reach out, support and help my son

      • unexpectedmonkeys says :

        I did reply to this but the reply got separated from your comment somehow, if you didn’t get an alert check the page on my blog 🙂

  2. unexpectedmonkeys says :

    My personal opinion on the ADHD meds – like Ritalin, for instance – is that they are best left alone. I have friends with just ADHD who were given them and they seem to cause more problems than they solve! But I’m no medical professional and I don’t want to sound like I know what I’m talking about when it comes to them, I don’t!
    When it comes to the tics, I was told the same thing by doctors – that (thankfully) they would never offer me meds for the ADHD as most of them will make the tics worse! I can’t see how giving them to somebody without ADHD would help at all! Slowing down the brain is never good!
    Mine goes at a mile a minute most of the time although it’s a little slower at the mo as I am constantly doped up with Diazepam (Valium) and Baclofen (no idea what the non-generic name for that one is). They are working, but it’s not really an ideal long term treatment plan!
    I usually try to use what I can to my advantage – for instance when working I often get compliments from employers as I can’t just stand around, I have to do something. So people see me as hard working (when in fact I am just incredibly bored so I find things to keep me occupied!).
    I have tried a plethora of different meds for the TS but have never had good results – my case is described as “treatment refractory” – which is why I am due to be undergoing the DBS this year as part of a clinical trial.
    To name a few I have tried: Haloperidol, Sulpiride, Aripiprazole, Tetrabenazine, Topiramate, Zonisamide, Fluoxetine and Risperdal. Me and my specialist neuro counted over twelve but I can’t remember them all off the top of my head!
    Personally when it comes to diet, I’ve tried all sorts. I am a vegetarian (have been for around a year now) and at the same time I cut out most artificial additives, non organic food and a bunch of other stuff. I have found that this has had an impact on my hyperactivity, attention span and IBS, but little effect on the tics. As for food triggers – I have noticed a definite issue with Aspartame. Even if I don’t know it’s in a drink it has been noted by myself and Holly, among others, that my tics often seem to worsen. So I avoid that completely, I won’t touch anything containing it at all.
    I have found that exercise works wonders. Although I have slowly lost my ability to do most of the activities I used to do as I have had some patches of very bad luck when it comes to new tics. I used to skateboard, flowboard, roller blade and cycle. Can’t do any of the above now due to damage to my knees – as it stands at the moment I can’t even walk.
    I think one of the most difficult things about Tourette’s and tic disorders in general is that they are so unpredictable and no single case is identical to any other. But it’s good to talk to people and exchange thoughts, frustrations and stories!

    Edit:
    No idea if this will be helpful but when it came to concentrating in an academic environment, I finally cracked it when I went to college. I found that I needed to keep my brain occupied with as much as possible to stay focused, so I had special permission to listen to music while I worked – this helped the attention span and the tics. 🙂

  3. chellemills says :

    I can’t say thank you enough for taking the time to respond to me. Though we’ve been dealing w/ this for 7 years, it’s just been the last couple of months that I’ve opened my eyes to the long term severity of it all. It’s as if I truely believed that one day he’d just wake up free from it all. I’ve spent hours upon hours researching, studying books and reading blogs. But you’re the first person I’ve “talked to” that’s actually IN it rather than living around it, if that makes sense. (I read the book called Against Medical Advice and that’s when the light bulb went off and everything suddenly became real!) I wish you the best of luck w/ your DBS! This may NOT be the last time you hear from me 😉 but just in case…

    • unexpectedmonkeys says :

      Any time, can you send private messages on wordpress? I don’t know if you can or not? I could possibly ask about getting you invited to a TS support group on facebook? 🙂

      • chellemills says :

        I dont know how to send a private msg on wordpress but I would love to to be “invited” and I promise not to ask everyone a bunch of questions 🙂 I just want to learn all I can (finally got some direction from MY doctor and gerting my son on the waiting list at a children’s hospital for new neurologist. Step 1 checked off the list)

      • unexpectedmonkeys says :

        There was a link to a website on your profile so I tried sending an email on the form there 🙂

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