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Hello , new to tourette syndrome and looking for insight

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  • Hello , new to tourette syndrome and looking for insight

    Just diagnosed at the ripe old age of 36 with tourette's . I was looking to see what the experiences of others have been as adults and what medications have worked.

  • #2
    Re: Hello , new to tourette syndrome and looking for insight

    Hi Colleen and welcome to the TSFC Forum! Glad you found us and hope the information and support here might ease your acclimation to your newly discovered diagnosis.

    I, like you was officially diagnosed in my forties, (quite a few years ago) and lived my childhood in a time when Tourette awareness was only exceeded by an understanding of the far side of the moon! As a result, there I endured a fair amount of ridicule and punishment for the tics and associated behaviours as a child.

    It took me a few years and some supportive therapy to come to terms with my diagnosis, and to fully accept all its implications. It was only after this acceptance that I became involved in helping with Tourette support so that others would be better informed than the people of my childhood.

    No medications were required for tic suppression in my case, as I had learned to suppress tics out of necessity in social and business situations.

    What has been you process arriving at a diagnosis, and how have you adjusted to your new found knowledge about yourself? What about your family and friends?

    I will be away from the Forum for a couple of weeks, so unfortunately I may not see your immediate responses, but I will be looking forward to continuing our discussion on my return.
    Steve
    TouretteLinks Forum

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    • #3
      Re: Hello , new to tourette syndrome and looking for insight

      Hi Steve,

      Thank you for the response. I just saw a body and movement specialist today and I was given botox. It hurt like heck but, i have noticed a dramatic difference in the facial tics...I am feeling excited and optimistic after many years..

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      • #4
        Re: Hello , new to tourette syndrome and looking for insight

        an adult of 40 years with ts, and have a 6 year old son who is starting to ask about mommys twiching, i feel embarrased for him and just avoid the answer, i am wondering if anyone could give me some advice on how to handle this one.i have been on clonazapam for 10 years now and with some success but in the last few months i have gone back to alot of my old tics i havent seen for years. i dont want to go back on haldol. and just sleep the days away like before,any recomendations on meds. and advice would be greatly appreciated. its my first time at this website so glad i found it..

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        • #5
          Re: Hello , new to tourette syndrome and looking for insight

          Dear butters,

          My first response to your post:
          an adult of 40 years with ts, and have a 6 year old son who is starting to ask about mommys twiching, i feel embarrased for him and just avoid the answer, i am wondering if anyone could give me some advice on how to handle this one
          is why avoid the answer? Tourette Syndrome is part of who you are. You shouldn't be hiding it from your family. If your son is curious explain that it's something you do and you can't help your tics.

          The condition is hereditary, so there is a chance that your son could also have Tourette Syndrome. Do you want him to hide this tics from you? It's so important to make him feel like you would accept and love him if he had tics too rather than be embarrassed by him. And at six, he would love and accept you and your tics if you explained your neurology to him, instead of being embarrassed.

          The age of six is a wonderful age to educate him so he understands. He could turn into one of your biggest advocates.

          If you're not sure how to explain your TS to him, we have a bunch of resources in our Kids Korner page of the TSFC website. We also sell a video of children explaining their TS called Tourette is Powerful.

          The vision of the TSFC is that "All people who have Tourette Syndrome will lead quality lives as accepted and valued members of an informed, tolerant society." That acceptance starts at home.

          I hope this helps.
          Tina
          Tina, Forum Moderator, TSFC Staff Liaison

          TSFC Homepage
          TSFC Membership

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          • #6
            Re: Hello , new to tourette syndrome and looking for insight

            thank you i will definately check this out, this is just one of those things i have struggled with, my son and i talk about everything and everything except this,. i have also talked to our family dr. about the chances of our son having tourretts and she says it is to early to tell. thanks again.

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            • #7
              Re: Hello , new to tourette syndrome and looking for insight

              You are welcome butters.

              Just so you know, researchers say the average age of TS onset is age 6-7.
              Motor tics, especially in the face, are the first symptoms to appear.
              (The most common ones are eye blinking, head jerking, and shoulder shrugging.)
              Vocal tics usually appear when children are older (8-15).
              And tics develop gradually, not all at once, and not all the time.

              I would recommend if you start seeing tics with your son, start a little diary.
              Note the type of tic, frequency and the day it appears and day it disappears.
              This will help a doctor in the future with some of the symptoms listed on our web-site:
              • Both multiple motor and one or more vocal tics present at some time during the illness although not necessarily in the same way;
              • The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout a span of more than one year;
              • The periodic change in the number, frequency, type and location of the tics, disappear for weeks or months at a time; and
              • Onset before the age of 18.
              Tina, Forum Moderator, TSFC Staff Liaison

              TSFC Homepage
              TSFC Membership

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              • #8
                Re: Hello , new to tourette syndrome and looking for insight

                thank you so much Tina you have been really helpfull..

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                • #9
                  Re: Hello , new to tourette syndrome and looking for insight

                  Hello Colleen, I wasn't diagnosed until I was 2009 though first suggested to me back in 2006. I take Tetrabenazine(Xynanine) for my tremors and tics. Without it, I struggle to move about and holding things.

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                  • #10
                    Re: Hello , new to tourette syndrome and looking for insight

                    Welcome Butters. I was only diagnosed a couple years ago and I am 40 now. My 7 year old is booked in to checked out for Tourettes.

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                    • #11
                      Re: Hello , new to tourette syndrome and looking for insight

                      Originally posted by SpiderThug
                      I wasn't diagnosed until I was 2009
                      Wow!! That even older than me and David Baxter put together!!:beguiled:
                      Steve
                      TouretteLinks Forum

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                      • #12
                        Re: Hello , new to tourette syndrome and looking for insight

                        Hi Colleen, I'm currently 27 going on 28 this June and I was diagnosed at the age of 8, though I symptoms at the age of 4, and I take Clonidine for my tics. They would be considered mild, but I have my bad days and when I was younger they were quite severe. I'm glad you found us

                        Butters, definately talk to your son. I can understand it being embarrassing to talk about, but personally, having worked with kids, I find it easier to explain my symptoms to the younger ones because they have very simple ways of breaking things down and see things black and white, moreso than older kids who are past that point and begin thinking more complex. As the younger ones get older then you build on more complex details of the disorder, but to start you could explain it's like playing telephone and the message gets mixed up or part of it doesn't get through, but in your brain. So the body reacts to these 'broken messages' as tics. Or, a more common example used, is when you cough or sneeze, you can only hold it in so long before it comes out, so for your brain, it's a sneeze or cough. Having to scratch an itch is another common way to describe what it's like to 'get the tics out'. Hope that helped some
                        Marisa

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