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Happy to have joined this forum....anyone familiar with my symptom?

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  • Happy to have joined this forum....anyone familiar with my symptom?

    Hello All-

    I’m thrilled to have found this board. I’ve read some interactions on this site and have been impressed with everyone’s positive and helpful attitude.
    Honestly, the main reason I signed up is to see if anyone has ever heard of anyone having similar symptoms as mine, or if anyone has any suggestions for me.

    I’ll try to summarize:
    - 41 year old male, happily married with 2 great kids (age 5 &2)
    - I have always been a very healthy and active person. Healthy vegetarian and lifelong athlete.
    - I have never had any medical issues (besides a few broken bones J)
    - I read the symptoms for OCD and I’m the total opposite
    - I read the symptoms for ADD and I probably have some of those symptoms

    About five years ago I started noticing body tics (never had any tics growing up) when I was run down and tired. My tics are in my torso. One or both of my shoulders usually jerks forward a few inches. The more tired/run down I am, the bigger the tic. About 75% of my tics are also accompanied with a slight grunt. Over the past 5 years, my tics have progressively gotten worse. I went from 4-5 tics per week (5 years ago) only when I was really tired (almost always at night), to at least 10 per day now. Here’s the catch; these tics are totally dependent upon my sleep. Alcohol and caffeine use to affect them as well, but I cut them out completely. If I get a good night sleep, I won’t tic all day, only when I’m tired at night (maybe 10 tics). But, when I don’t get a full night sleep (which is often with my work travel schedule and w/ two little kids), I can tic up to 100 times a day. I get this very run down feeling, and a tension building, and I know if I go lie down for 15-30 minutes and relax/meditate, I know I will tic, which TOTALLY releases the tension and I totally feel better. This also means I can suppress my tics. It’s crazy. They’re starting to really impact my life. I have been sleeping in a separate room, so I don’t wake my wife at night/morning. And if I don’t sleep well, I get that really deep run down feeling. Tics are like my version of a very short nap, but instead of napping, I tic (both motor and vocal). I met with a neurologist and he did an EEG which came back normal. He diagnosed me with a “simple tic”. I go back to see him tomorrow for a follow up.

    I have not read of anyone else with my version/description of tics. Any thoughts? Suggestions?

    Thank you so, so much! As you all know, this is a big deal, so I appreciate your feedback.

    Love and thanks-

  • #2
    Re: Happy to have joined this forum....anyone familiar with my symptom?

    Welcome to the TSFC Forum, Brian and thanks for joining us. Also thank you for your kind words of praise for our members.

    FYI it is not necessary to post the same topic in multiple places on this Forum, because doing so causes unnecessary confusion. As our messages are threaded, responses made to identical posts lose the coherence of the discussion. Using the Recent Posts or Today's posts tool will display all recent posts, so your post will always be seen by returning members and staff.

    Adult onset Tourette Syndrome is controversial and is not recognized by the current or even earlier diagnostic criteria for Tourette Syndrome.

    There could be a couple of explanations for your symptoms, that need to be evaluated by a medical professional, preferably one with clinical experience and expertise in movement disorders, including Tourette Syndrome. You may want to look into the Department of Neurology of a local hospital, and if you cannot locate someone there, look into a nearby teaching hospital center in their Department of Neurology.

    One possible explanation could be that you indeed have a history of tics, though mild and not noticeable to you nor to anyone else close to you, with actions that were thought to be your own personal idiosyncrasies.

    The other and more important consideration to be evaluated by a competent medical professional would be to investigate a number of medical conditions that can cause tics or involuntary movements, that would require specific medical diagnostic testing.

    Because there is no diagnostic or imaging test for Tourette Syndrome, it's important to be seen by a medical professional with a professional interest in Tourette and associated disorders so a competent interview along with experienced observation can provide a reliable diagnosis.

    They’re (the tics) starting to really impact my life.
    This is your most important reason for seeking help. When speaking to the neurologist who is evaluating you, ask if behavioural therapy might be right for you to help manage your symptoms. The behavioural therapy designed specifically for people with Tourette Syndrome is called Comprehensive Behavioural Intervention for Tics (CBIT).

    Our Forum contains a considerable amount of information on CBIT HERE

    Has your neurologist talked about possible treatment options?
    TouretteLinks Forum


    • #3
      Re: Happy to have joined this forum....anyone familiar with my symptom?

      Good to hear from you, glad you joined the forum
      those symptoms could be related to TS but are not really clearly categorized as such. I would suggest that you see your primary care physician about this, to rule out other possible causes. It might be helpful to keep written notes beforehand about circumstances around the time of the twitches, related symptoms, amount of sleep, and anything else you think might be related, as this might help in directing assessment and deciding if any further investigations might be indicated.
      Gina Higgins
      MD, CCFP


      • #4
        Re: Happy to have joined this forum....anyone familiar with my symptom?

        Steve- thank you so very much for the feedback.

        I will make sure not to post the same message in tow different sections, I apologize about that. I'm a rookie.

        Second, I really appreciate your suggestions. This is all very new to me. For the first 4 years of my "ticing", I never thought of them as a tic. I just thought it was "some strange" jerk I experienced when I was run down. I wasn't aware of CBIT, nor did I realize their were local professionals trained in CBIT (I checked) that might be able to help me. I have an apt with my neurologist this afternoon, and I'm bringing notes/suggestions that I have learned form this message board. He has not provided any suggestions yet. I know you hear this a lot, but thank you for the work you do. I was in a great mood yesterday (and today) just knowing this message board existed and could shed some light on my situation.

        One day at a time-

        ---------- Post Merged at 01:31 PM ---------- Previous Post was at 01:29 PM ----------

        Thanks so much Gina! I really appreciate your suggestions. I have a meeting with my neurologist this afternoon, and I'm taking suggestions I've learned on this message board with me.

        You rock!


        • #5
          Re: Happy to have joined this forum....anyone familiar with my symptom?

          We'll be looking forward to hearing about your meeting with your neurologist.

          Try to investigate as many options for possible treatment your physicians feel might be right for you, including the CBIT option.

          The TSA maintains an up to date listing of CBIT trained providers, so you can supplement the inquiries you have already made if necessary.

          I will make sure not to post the same message in two different sections.... I'm a rookie.
          It's not a problem, Brian; we're here to help and to guide you when necessary. Forum software and practice varies from one venue to another, so it takes a while to figure out how each forum in which you participate works. ....
          TouretteLinks Forum


          • #6
            Re: Happy to have joined this forum....anyone familiar with my symptom?

            Welcome to the forum, Brian! I wish you the best of luck with your appointment.
            Every feeling can be logically simulated.


            • #7
              Re: Happy to have joined this forum....anyone familiar with my symptom?

              I wanted to provide an update, as I'm sure many people on this forum could use some good news/hope. I took the suggestions on this forum (Steve is AWESOME) and found the best TS Dr in San Diego, Dr Friedman, at Rady Childrens. She was awesome! In short summary, she did an extensive evaluation and referred me to a CBIT therapist. I worked with this therepist for aprox 6 weeks, and made a ton of progress. I tried a few competing responses, until I found the right one, which is very slow/deep breathing. It took some practice, but I have been amazed by the results. I'd say my tics are down 75%. My urge to tic is probably down 90%. All my tics now are at night, when I'm run down and tired, and I don't feel the urge, I just tic. I still have a ways to go, and I'm determined to continue my improvement. But, overall, I'm so much happier now that I'm feeling better and feel a bit more in control. Still dealing with the fact that this is part of my life, as it has changed my life in so many ways. Ive had to give up alcohol (BUMMER), caffeine, and I try hard to get plenty of sleep (which impacts my social life). Tough to give up, but its well worth it! Also, I had been dealing with headaches 3-4 days a week, and Dr Friedman suggested I try 400Mg of B2, daily. Ive been on it for 2 weeks and it's helped a ton! Anyways, so stoked I found CBIT, and was proactive about my help. The downwerd sprial feeling stinks, but the rebound has been awesome. I'm out of my it. Wishing everyone health and happiness!


              • #8
                Re: Happy to have joined this forum....anyone familiar with my symptom?

                Thanks for the update on your experience with CBIT, Brian!

                I would love to continue the discussion with you to learn about the various stages of learning you had during your therapy, and about your response to each of those that eventually led to your successes.

                These skills and insights should last a lifetime, and should contribute to a quality of life you could have only imagined prior to your therapy! So happy for you!
                TouretteLinks Forum