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Thread: Hello , new to tourette syndrome and looking for insight

  1. #1

    Default 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. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,945

    Default 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.

  3. #3

    Default 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..

  4. #4

    Default 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..

  5. #5
    Join Date
    Jul 2011
    Location
    Toronto, Ontario
    Posts
    753

    Default 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

  6. #6

    Default 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.

  7. #7
    Join Date
    Jul 2011
    Location
    Toronto, Ontario
    Posts
    753

    Default 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

  8. #8

    Default Re: Hello , new to tourette syndrome and looking for insight

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

  9. #9
    Join Date
    Mar 2008
    Location
    Sydney, Australia
    Age
    45
    Posts
    227

    Default 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.

  10. #10
    Join Date
    Mar 2008
    Location
    Sydney, Australia
    Age
    45
    Posts
    227

    Default 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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