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Thread: Happy to have found this site!

  1. #1

    Default Happy to have found this site!

    Hey everyone,

    I'm really happy to have found this site with other people living with the same condition as me. I am a 21 year old girl and have had tics ever since I can remember as a child but only recently (about 6 months ago) discovered that my tics are symptoms of Tourettes. All my life I thought I was abnormal and different as I started to notice that no other kids made odd movements and noises like I did. I've done my best to hide these in public and only let them out at home, and consequently I've felt very alone and awkward my whole life. Until about 6 months ago I just considered myself a bit of an oddball - I had no idea that other people felt these strange compulsions like me. One day I decided to actually google the movements that I make (head bobbing, arm jerking, twitching, throat noises, etc, etc). From my research I came across information on TS and everything clicked - it described my life exactly. Since then I have been to a neurologist, although that was little help. She confirmed Tourettes, but that's all she really told me. I live in a small-medium sized city which doesn't have any specialists in Tourettes Syndrome. The neurologist herself sounded like she barely knew anything about it. My boyfriend has helped me greatly in my journey of self-discovery, but I get overwhelming feelings of loneliness and of being an 'abnormal' person. I don't know any other person with this condition, so I'm very happy to find this community with people who are going through the same things as me.

  2. #2
    Join Date
    Apr 2005
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    Ottawa, Canada
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    Default Re: Happy to have found this site!

    Hello TSRex and thanks for joining us!

    I think many people with Tourette have gone through a good part of their life without knowing why they were doing what they were doing, and had little or no support or awareness.

    You are indeed fortunate to now have the support of your boyfriend who has been helping you understand and come to terms with your discovery.

    Have you found a sense of relief knowing you are not the only one in the world and that it actually has a "name"?

    The neurologist herself sounded like she barely knew anything about it.
    It is likely your neurologist has had training in movement disorders, but limited clinical (hands on) experience treating Tourette. Have you investigated whether there is any local support affiliate with the TSFC in your area?

    Have your tics or any other associated disorders caused you any difficulties in any aspects of your life?

  3. #3

    Default Re: Happy to have found this site!

    Thanks for the reply Steve. Yes, it has been a relief to discover that that this is a genuine condition that is caused by conditions in the brain - not just me being crazy! It is comforting to know that I'm not the only one that goes through this and that there are other people to talk to about it.

    Thanks for the link, there are chapters in near-by cities. Maybe one day I will take a trip over to one of the chapters.

    Aspects of my life have definitely been affected by my tics and other possible disorders that I might have. It causes strains on relationships with friends because I don't always feel comfortable and relaxed because I want to hide my odd behaviour. No one except for my parents and boyfriend know that I have TS - I have worked hard to hide it from everyone although it can be frustrating and even embarrassing at times. University was frustrating at times when I would try to hide my tics in the classroom for up to 3 hours at a time. Tests especially were hard because I have a breathing tic where I breath hard, and I tend to do this tic more when I'm stressed. It was hard to keep quite in such an environment with many people in such close proximity. I worry about my future career where this condition may cause colleagues to look strangely at me.

  4. #4
    Join Date
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    Ottawa, Canada
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    Default Re: Happy to have found this site!

    1. It causes strains on relationships with friends because I don't always feel comfortable and relaxed because I want to hide my odd behaviour.
    2. No one except for my parents and boyfriend know that I have TS - I have worked hard to hide it from everyone although it can be frustrating and even embarrassing at times. ..........
    3. Tests especially were hard because I have a breathing tic where I breath hard, and I tend to do this tic more when I'm stressed. It was hard to keep quite in such an environment with many people in such close proximity. I worry about my future career where this condition may cause colleagues to look strangely at me.
    TSRex,

    There is good news from those of us who have lived and prevailed through the challenges you are dealing with.

    The fact is Tourette Syndrome is not all that rare, because, depending on the literature your consult, between 1 and 3 % of the general population is affected by the disorder. Because there are varying degrees of severity of symptoms and because some people suppress symptoms, as you say you do at times, it may not always be noticed.

    1, Your Tourette should not cause a strain on relationships because you can be forthright with people by just saying something like, "The reason I do ........ is because of Tourette Syndrome. It's a neurological disorder causing involuntary movement and sounds". With time, you can customize your explanation depending on circumstances.

    As you become familiar with Tourette, collect information etc, you should feel more comfortable explaining it to others. It's what we all do.

    2,
    I have worked hard to hide it from everyone
    Do you mean you are capable of temporarily suppressing your tic activity in certain situations? If so, you could continue honing that skill, as many of us have done. Therapists are now treating people with Tourette using a technique called CBIT that teaches that very skill. Our Forum contains numerous articles in CBIT. Enter the term CBIT in the Search box at the top right of the Forum page for the articles.

    3, Stress usually increases tic activity in people with Tourette, and schools and learning institutions will often make accommodations for people with Tourette under their disabilities protocol to help you in class and in taking exams. You may want to check with your school or the head office of TSFC to get specific information on this topic in your Province.


    The bottom line, TSRex, is that you are not defined by your Tourette and that you should be able to live a perfectly normal and productive life despite the disorder. You already know, from the love and support of your boyfriend your parent that relationships are possible. Te reason relationships are possible comes from an honest information exchange, by explaining, on a need to know basis, about your Tourette.

    By making the right accommodations for your particular situation at school, at work and even in social and family relationships, you can live your life as the bright, energetic and creative person you are, who happens to be afflicted with Tourette Syndrome.

    Have you read through some of the "Hero" stories we have posted in our Awareness Section?

  5. #5

    Default Re: Happy to have found this site!

    Hi TourettosaurusRex,

    Welcome to our online sanctuary where we're around others just like us who have a constant relationship with Tourette's. I knew from a very young age my behaviour was different from those around me but just put it down to being the way I am just as other people are the way they are. I accepted TS from a young age and never thought I was too weird based on the range of traits I saw in other people around me. I do get occasional bouts of insecurity about it all but that soon dissipates when I walk around town and see what else society offers us.

    Through childhood and early adulthood it was all about the tics, but as their intensity has reduced and become more manageable with age (I can control the urge, as an adult, to run through the park screaming and whooping with my hands waving in the air ) I've woken up to a range of other traits associated with TS that I hadn't really paid much attention to. Amongst these, I can get overly anxious when there's no justification for it, be compulsive beyond the rational, feel bouts of inappropriate rage from the smallest of triggers, and get all crawly around certain types of fabric. For me now, it's just as much about the other TS associated extras as the tics.

    We TS people are quite an eclectic mix with our own personality traits and a unique spread of extras to contend with. For some it can be a lifelong debilitating issue while others will have only the mildest of problems to deal with. Wherever you are on the spectrum, just keep going, try new things, remain aware, and remember you're not alone on this one.

  6. #6
    Join Date
    Jul 2011
    Location
    Georgia, USA
    Posts
    287

    Default Re: Happy to have found this site!

    Do you have OCD TSRex? OCD is really common w/TS. I was reading Feelers post about his sensitivity to fabrics and I have that too. Sensory processing issues. I don't like anything but cotton (I can feel the difference with blended fabrics and really perfer 100% organic cotton.) I don't like lotions and in the winter my OCD/sensory proc. can make me wash my hands until they are raw. I was just curious if you had OCD.

  7. #7

    Default Re: Happy to have found this site!

    Steve: I really don't want TS to cause strains in my relationships and I hope that by now having a name for why I do what I do I will feel more comfortable and be able to explain myself. Because for so long I didn't know what was going on, I didn't have any kind of explanation for people which made me feel awkward. I would occasionally make a weird movement or noise and people would sometimes ask if I was OK which would cause me to be embarrassed because I couldn't explain that I have Tourettes - because I didn't know. Now having that knowledge, I can explain that it's a condition. This is the point that I'm at now - wondering if |I should be really upfront and open about TS or only telling a few close people.

    Yes, I am able to suppress most tics for a time until i can be by myself then they all come spilling out haha. They tend to start slipping out in public if I haven't had a chance to be alone for a while or if I am stressed or tired. Steve, you mentioned that I could probably be made allowances in school. I really didn't want to be treated differently or be seen differently than anyone else so I suppressed everything the best I could and I have just graduated with my degree so I got through it ok!

    I haven't gotten to the Hero section yet, I'll have to go check that out!

    Feelers: Thanks for the welcome! That's a great way to look at the world because so many people have so many different issues going on. I need to constantly remind myself of that when I start feel depressed about being "weird". In school I would usually try to sit in the back so that people wouldn't be likely to see me if I start to tic a bit. I would watch the other students who didn't know that they were being watched and I would feel so jealous that they would sit perfectly still and attentive without trying. I know that if anyone ever watched me while I didn't know that they were looking, my face and my body would be twitching oddly. I long to be able to just sit still.

    Feelers and Geneva, you both mentioned about OCD. I'm really not sure if I have OCD or any other related conditions but I wouldn't be surprised. I have some behavior that I know is odd. I get unreasonably angry and frustrated over certain things. When I buy something, I really really want to open the packaging myself. If I find that someone else opened it first or someone else picks it up to open it, I get bizarrely angry and find it hard to contain my frustration. Same goes for other things that I like to have my own certain way - if someone does it the "wrong" way and I can't fix it, I get really frustrated and can't stop thinking about it. I know intellectually that these are really stupid reasons to get mad and frustrated but I can't seem to help it.

    I also have other issues with lining things up visually in a certain way. It's really hard to explain this but I'll try... I get urges to hold my fingers up about a foot in front of my eyes and I close one eye and have my fingers line up with something that is in the background. Like if I'm on my computer, I hold my fingers up and "underline" some text with my fingers. Or I'll hold a couple fingers up, close one eye and block out something in my sight (the brand emblem on my TV for example). I know this sounds really bizarre but I get like a feeling of satisfaction when I do it right and the item is fully blocked out or lined up right in my vision. Conversely, I'll get frustrated if I can't do it right and it doesn't feel "right". I hope I explained this in a way that is understandable - it's really hard to explain! I would love to hear if anyone else has these kind of urges too.

  8. #8
    Join Date
    Apr 2005
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    Ottawa, Canada
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    Default Re: Happy to have found this site!

    This is the point that I'm at now - wondering if |I should be really upfront and open about TS or only telling a few close people.
    I think it should be on a need to know basis. Your closest family, those you live with or with whom you've grown up would be the first and when necessary people such as co-workers, immediate supervisors or teachers/professors only when necessary to explain or accommodate specific situations that might arise. Your explanation should emphasize that Tourette is neurological and is involuntary, and should never be characterized as behavioural or as "bad habits".

    you mentioned that I could probably be made allowances in school.
    Only to the extent that your ability to function or perform at your best might be hampered by your symptoms. For example if your symptoms are made worse by stress, and the stress of sitting among a crowd to write an exam prevents your ability to suppress your tics as you said, preventing you from doing your best in the exam, then you might want to discuss some type of legitimate accommodation. I believe there is legislation in many areas that would support your request.

    I also have other issues with lining things up visually in a certain way.
    This type of need can sometimes be attributed to compulsions, a common associated condition in people with Tourette. As in all things, the issue is whether any of these behaviours or expressions affect your quality of life or ability to function at your peak performance, that would determine if intervention should be sought.

    Interestingly, with medication intervention, dealing with the associated disorders such as OCD, ADD, anxiety and depression is more easily treated than the tics. We are now being advised that Cognitive Behavioural Intervention for Tics (CBIT) a form of cognitive behavioural therapy is what seems to be effective in dealing with tics, and your ability to suppress your tics at times is the foundation to the skills learned in CBIT.

  9. #9
    Join Date
    Jul 2011
    Location
    Georgia, USA
    Posts
    287

    Default Re: Happy to have found this site!

    It might be OCD before my son was born my inlaws came to visit and they would constantly move the coffee table infront of the couch. When I walked into the room, I would notice it immediately and have to fix it. It was lining it up infront of the couch to where it felt right and even on both sides. I never knew I had OCD until my son was diagnosed and then I started remembering I did odd things as a child and little quirky things as an adult. My mom was bi polar with OCD clean freak and her mom was OCD hoarder. I'm pretty sure my grandmothers brother (great uncle) had TS because he had facial tics that I remember from a child. Another one of her brothers had stuttering.
    Last edited by Steve; August 14, 2012 at 10:19 AM. Reason: minor edit

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