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Thread: Struggling with recent TS diagnosis and effective treatments

  1. #1
    New Community Member
    Join Date
    Dec 2012
    Long Island, NY

    Default Struggling with recent TS diagnosis and effective treatments

    So, a bit of background: I'm a student with Tourette's completing an intensive 1-year master's program in social work while working to support myself. As a part of my studies, I must engage in a year-long internship, completing 21 hours a week of unpaid work at a prominent veteran's home in my area. I also work, so my schedule is extremely demanding and I don't often get the sleep I need. To top it off, I'm planning my wedding, which will be happening in June.

    As a child, I had small non-interruptive tics like eyebrow scrunching, minor grunting, and eye-rolling. Since around sophomore year in university, I have rolled my shoulders repeatedly, which results in severe pain and muscle tension after hours of rolling. I have developed new tics, including sucking air, clicking my teeth, and sometimes grinding my teeth.

    I started seeing a Neurologist over the summer, and have started receiving Botox treatments in my trapezius muscle, which is the main muscle responsible for my tic. However, these only last me 1.5-2 months before symptoms return. When symptoms are back, I fall into depression and struggle to keep my anxiety in check. I also exhibit textbook symptoms of Bipolar Type II, which involves depression and hypomania, which is a less dramatic version of the mania associated with Bipolar I. When I am experiencing a depressive period, I feel very hopeless and struggle with huge amounts of anxiety about what my life will be like if I cannot control the TS symptoms. My pain and anxiety/depression often leave me not wanting to go to work or internship, and I have lost money and required hours; I feel like I'm always playing catch-up.

    I'm going to my first TS support group tonight (meets monthly), which is about an hour away. I have recently started meditating, which helps me relax, but I cannot rely on it all the time. I am also joining a gym with the hopes of losing some weight, releasing some tension, and increasing muscle strength in my back. Massages used to help, but now do very little for my muscle tension. My most recent botox round has worn off, and my symptoms are back in full swing until my injections on the 17th. Pain meds prescribed to me don't work for my back. I also get migraines occasionally. I used to go to a therapist at school to deal with my anxiety, but my schedule has no time for the forseeable future.

    It's very difficult for me because I am not close with anyone who has TS. Most times that I try to express to others my symptoms and the effect they have on my emotional wellbeing, I end up explaining what a tic is, what it feels like to get the urge, etc. The fact that I don't shout obscenities or make any visibly bizarre movements makes it confusing to people who don't know about Tourette's, and I usually end up giving a lesson instead of getting support. My fiance is a huge source of support, but even he has trouble lifting me out of my bad states.

    I don't know how to shake this fear that my Tourette's will negatively impact all of the important moments in my life. I find myself mentally mapping out my injection schedule to see if I'll be miserable or not for my graduation, wedding, honeymoon, etc. I feel like my anxiety takes over at times and I cannot get out of the mentality that things will never be manageable. Goals like being a parent, achieving my clinical licensure in social work, and owning my own home seem so far away, and it's very difficult to avoid feeling defeated and anxious.

    TL;DR - I'm a university student recently Dx'd with Tourette's, which is not fully managed at this time. The approaches used aren't meeting all of my needs, and it's taking a big toll on my emotional wellbeing. I believe I also have some psychological problems that I have no time to address given my schedule. I feel alone and hopeless and need some support, I just don't know where to turn. Any advice?
    Last edited by hvidlilje; 12-07-2012 at 07:32 AM.

  2. #2
    Distinguished Community Member tic chick's Avatar
    Join Date
    Oct 2006
    Detroit, MI


    welcome to bt hvidlilje!

    well, i'm going to call you "lil" for purposes of brevity and spelling .

    i read your profile, i see you're 22. i also got married, bought my first house and got pregnant when i was 22. i had my first baby, a son at age 23, my daughter, the second at age 25 and another daughter, the last at age 30. i'm 58 now, have had ts since i was about 8. i also had minor, simple (one step) tics until i was 19. then i developed anxiety, panic attacks, ocd and depression along with some complex (2 tics repeated in a pattern) tics. i have read that for some reason this happens a lot in early adulthood. in some ways, i think that not having a "disease label" protected me from fearing to do some things. i always knew i had tics, but i didn't know what ts was until i read an article about it in the newspaper when i was 19. i was not officially diagnosed with ts until i was 30. all that i write here is my own opinion and philosophy of life. i always hope that even if i can't help a person this moment that i can get them thinking about things in a way they might not have before.

    I feel very hopeless and struggle with huge amounts of anxiety about what my life will be like if I cannot control the TS symptoms.
    you have tourette syndrome. you will never have total control of all your ts symptoms. yes, you might have relief for minutes, sometimes you will tic very little for hours, sometimes days will go by where you are relatively calm...but you will still be having tics, albeit not major ones. having been on a "find a drug that will stop me from ever ticcing" odyssey during my 30's, i only found one drug that cut my tics by about 85% and that was aricept. for almost a year and a half i was almost free from ticcing, but there is a price to pay and those are called "side effects". i decided i would rather tic. finding medication to control all your various symptoms from bipolar to depression is a long process. some of the meds that might be given for anxiety or depression or bipolar might help you tic less. i was trying klonopin for my tourette syndrome at one time and i noticed my anxiety and 3X a week panic attacks disappeared. i've prolly had only a couple major panic attacks in the last 25 years and a few days of acute anxiety. i didn't start taking any meds until i knew i was done having children because all meds have an effect on either you or your developing child. my advice would be to pick what symptom causes you the most problems in being able to function daily and talk to your doctor about meds for that.

    i think managing pain from tics is important. i'm glad the botox helps. if something helps i think keeping up with it is important for your mental and physical health. managing stress by joining a gym or even walking several times a day for short periods helps. a lot of this will also reduce your tic level. i went to a tourette syndrome meeting once and found out i am not the meeting type of person, but if you find it helpful, go for it! everyone is different, what works for me might not work for you and vice versa. life is a process of finding out what works for you whether you have ts, diabetes, epilepsy or any other illness...or even if you don't have an illness.

    I don't know how to shake this fear that my Tourette's will negatively impact all of the important moments in my life.
    the most important moment in your life is THIS MOMENT! yesterday is gone, we can only hope to learn from it. tomorrow is not guaranteed to ANYONE! by thinking about the future, you are not living in the present and you are wasting today's happiness for tomorrow's unknown problems. our tomorrow is built on living every single day in the moment. i also think sometimes when you are diagnosed with an illness you start thinking of yourself as a "diseased person" instead of a "person with a disease". we all are human beings first. any other adjective you wish to describe yourself with comes after that. personally, a "person with ts" is maybe number 10-15 on my list, depending on what's going on in my life at that time. yes, you will always have ts. you might be a social worker with ts, a bride with ts, etc. why is that any worse than a bride with diabetes, a social worker with a limp, a mother with arthritis? we all have probs. if we give our power away to the disease, guess what wins? keep your power as a human being and use it to fight any problems that come your way cause if you give your power to ts you will start making excuses for not showing up for life everyday. i see so many people paralyzed by their probs that they miss out on the beauty of being alive that day.

    yes, i have bad days, sometimes they have nothing to do with my ts. somedays i have pain due to my ts. i handle each problem as it comes along and don't anticipate anything. i have never had copralalia, which is the swearing part of ts, but i don't worry that i will suddenly develop it because i might not and if i do i have no control over it anyway. so i will deal with whatever comes along if and when it comes.

    i have looked up the url of 2 talks on by a very wise woman. if you have time to listen to them, please do. i think the advice she gives is so important:

    you seem to be a very intelligent human being. you are aware that you have problems. you have the capacity to try and solve your problems. you can ask for support (so important) and admit when a problem has you stymied. never be ashamed for having ts. it is not something you chose. if you need support, get it from people who already know you and your probs and care about you. if you want to educate people about ts, that is a wonderful thing to do, but as you have seen, you can't get support from someone who doesn't understand what you're talking about.

    i can't predict what problems you will encounter in life or from your ts and i separate those because we are people first and we all have common probs, but i trust you have the power and intelligence to be able to handle whatever comes your way.

    i hope you have recovered from sandy, the storm that hit new york as i see you live in one of the hardest hit areas. my middle daughter lives in brooklyn and she wasn't effected much beyond missing a day of work. i also hope your meeting with the ts support group went well. remember, fear= false evidence appearing real. it isn't real until it happens.

    live one day at a time, it's a manageable chunk ,
    Last edited by tic chick; 12-07-2012 at 04:10 PM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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