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Thread: Newly Diagnosed Adult

  1. #1
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    Smile Newly Diagnosed Adult

    Hi everyone,

    I'm 21 and from the U.S. I developed an explosion of tics a few months ago and yesterday I was officially diagnosed with Tourettes. I had tics starting in high school, but they were so mild then that they didn't cause any problems and I just thought they were part of anxiety. So I'm very new to this whole world of dealing with tics. But I've been on medication for a couple of months and I'm going to start CBIT soon. I also have ADHD, anxiety, autism, sensory processing disorder, and learning difficulties, which I've heard are pretty common comorbids?

    I currently work at a farm and a daycare and am going to school part time for early childhood education with the hope of one day going into special Ed. I also love animals and I enjoy listening to books on tape doing crafts, and puzzles.

    I have lots of questions and I look forward to getting to know others with TS.

  2. #2
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    Default Re: Newly Diagnosed Adult

    Hello Imelda and welcome to the Forum. Thanks for joining us, and I hope you will find the information and support you might need.

    I've been on medication for a couple of months and I'm going to start CBIT soon
    Is the prescribing doctor the same person who will be providing CBIT and if different are the two in contact with one another to coordinate your therapy?

    What symptom(s) was the medication prescribed to treat?

    We have extensive information on CBIT on our Forum here: Comprehensive Behavioral Intervention for Tics (CBIT) and would be pleased to discuss CBIT and answer any questions you might have about it.

    I also have ADHD, anxiety, autism, sensory processing disorder, and learning difficulties, which I've heard are pretty common comorbids
    Yes, because it is thought related area(s) of the brain are involved that can produce the symptoms of the associated disorders. More information here: Tourette Plus: Related Conditions and Disorders

    What are some of your concerns, questions or issues you would like to discuss?

  3. #3
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    Default Re: Newly Diagnosed Adult

    Hi Steve. Thanks for the welcome.

    Quote Originally Posted by Steve View Post

    Is the prescribing doctor the same person who will be providing CBIT and if different are the two in contact with one another to coordinate your therapy?
    No it's not the same doctor, but they're colleagues at the same clinic.

    What symptom(s) was the medication prescribed to treat?
    I started medication for tics a couple months ago. It's helped reduce the frequency of my tics. I've also been on medications for anxiety and ADHD for 15 years.

  4. #4
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    Default Re: Newly Diagnosed Adult

    Quote Originally Posted by ImeldaJK View Post
    Hi everyone,

    I'm 21 and from the U.S. I developed an explosion of tics a few months ago and yesterday I was officially diagnosed with Tourettes. I had tics starting in high school, but they were so mild then that they didn't cause any problems and I just thought they were part of anxiety. So I'm very new to this whole world of dealing with tics. But I've been on medication for a couple of months and I'm going to start CBIT soon. I also have ADHD, anxiety, autism, sensory processing disorder, and learning difficulties, which I've heard are pretty common comorbids?

    I currently work at a farm and a daycare and am going to school part time for early childhood education with the hope of one day going into special Ed. I also love animals and I enjoy listening to books on tape doing crafts, and puzzles.

    I have lots of questions and I look forward to getting to know others with TS.
    Hi and Welcome to out little "family" Imelda,

    I don't have Steve's ability to pull out references but from what I have read pure TS without any co-morbidities is diagnosed in far less than half the children that are actually diagnosed with TS. I won't quote percentages since they vary from study to study.... I view medical research statistics with the same cynicism as I do pre-election polls... ( just an bunch of different numbers and rarely anywhere near the real outcome )

    As you will discover most of us that continue to exhibit signs of TS past the onset of adulthood rarely only have pure TS. As Steve explained there seems to be a common neurological denominator. Also, the list of common comorbidities associated with TS PLUS or simply typed TS+ ( I actually refer to mine as TS++++++++++ ) often overlap so much that some are simply overlooked or undiagnosed and also include OCD and ODD which are also very commonly associated with ADHD so when the tics are mild they can be undetected unless the patient raises the point with a competent and somewhat knowledgeable practitioner.

    Out of curiosity what med(s) have you been prescribed to help with your tics?

    I'm glad to hear you seem to have a competent medical team helping you. It is a great blessing that should never be taken for granted.
    Regards,
    Gary
    "If at first you don't succeed....
    CRY and CRY again!"

  5. #5
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    Default Re: Newly Diagnosed Adult

    Quote Originally Posted by GaryQ View Post

    Out of curiosity what med(s) have you been prescribed to help with your tics?
    I'm currently on guanfacine and rexulti, but we're increasing the guanfacine with the hope of going off of the rexulti. What other drugs or classes of drugs are used to treat tics? I know guanfacine is a blood pressure medication and rexulti is an atypical antipsychotic. I just switched doctors and he doesn't want me on atypical antipsychotics.

    I'm glad to hear you seem to have a competent medical team helping you. It is a great blessing that should never be taken for granted.
    I am really lucky. I got accepted into the Tic and OCD clinic at Yale. Both my psychiatrist who's treating me with meds and the psychologist who's going to be doing the CBIT are researchers in those specific fields. The one discouraging thing is that my psychiatrist has never seen anyone like me before who's tics got suddenly more severe in adulthood. And when I say suddenly more severe I mean that we thought at first that my tics just developed in adulthood. And I found out on this forum that he did a study on the clinical course of Tourette, so I thinks it's significant that he's never seen anyone like me. But I do feel like I'm in good hands.

  6. #6
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    Default Re: Newly Diagnosed Adult

    What other drugs or classes of drugs are used to treat tics?
    There are several "Sticky" posts at the head of the Diagnosis and Treatment of Tourette Syndrome section of our Forum that will give overviews of medication options.

    I know guanfacine is a blood pressure medication
    Yes, it's original indication was to treat blood pressure, but it was noted that the effect of this compound on dopamine could reduce Tourette tic activity in some people, which is why it is prescribed.


    I got accepted into the Tic and OCD clinic at Yale.
    Excellent! Truly one of the renowned centers for Tourette and OCD.

    But I do feel like I'm in good hands.
    Absolutely!

  7. #7
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    Default Re: Newly Diagnosed Adult

    Nice to meet you. I hope you enjoy your time here.

  8. #8
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    Default Re: Newly Diagnosed Adult

    Quote Originally Posted by Steve View Post
    There are several "Sticky" posts at the head of the Diagnosis and Treatment of Tourette Syndrome section of our Forum that will give overviews of medication options.

    Yes, it's original indication was to treat blood pressure, but it was noted that the effect of this compound on dopamine could reduce Tourette tic activity in some people, which is why it is prescribed

    Excellent! Truly one of the renowned centers for Tourette and OCD.

    Absolutely!
    Imelda, I apologize for not responding earlier especially since was the one to inquire as to what medication you were prescribed for the Tics.

    Guanfacine and Clonidine are alpha agonists and almost identical drugs. They work on the brain to reduce blood pressure.BUT Although they have a multitude of off label uses I believe both are FDA approved for treatment of ADHD in children. Guanfacine from what I have read is normally only prescribed to children. And clonidine is usually the one prescribed to adults.

    Personally (after a lot of reading and a long battle with my doctors) I am on Clonidine and clonazepam for my tics and anxiety and although many other issues need to be resolved the funny thing is after having spent 53 years of being mocked and the "was the coke good" type of comments, etc.
    Since taking Steve's advice about being proactive and informing (and educating people) that I have TS+ I now get the "You can't have Tourette's you don't have any tics". I'll take that over what I used to have to deal with any day!!!!

    Having high blood pressure it's also a bonus but If I was a professional I would be worried about risks for a patient with normal BP. But I am not a professional or expert this is simply a personal opinion. But I can tell you that in some cases like mine Clonidine is almost a miracle drug.

    A year ago my undiagnosed TS+ was driving me to the brink of insanity I was at the breaking point. Now my noticeable tics are almost inexistent.

    Now I can start dealing with the other stuff that we get as a bonus with TS+ and everything life throws our way.

    I'm truly glad to hear some of us are getting treated without having to fight and self-advocate.
    Gary
    "If at first you don't succeed....
    CRY and CRY again!"

  9. #9
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    Default Re: Newly Diagnosed Adult

    Guanfacine is also prescribed for adults.

    Imelda, do you mind sharing details of your current med plan, and the goal for the Guanfacine dose? What have you been taking for ADHD?

    Here's what we were told when we were in the process of ramping up the Guanfacine dose: if you get dizzy or lightheaded when standing up suddenly, that probably indicates your dose of Guanfacine is a little too high.

    Most people stop increasing it when they get to 4 mg (total per day). We experimented with a little more than that, and found we needed to back off a little.

    I have heard several Tourette experts say, at conferences, etc., that the extended release form (Intuniv) doesn't work as well as the regular release (Tenex). But then you have to take it at least twice a day (e.g. 2 mg in the morning, 2 mg in the mid-afternooon).

    I have a really good impression of the Yale group. Don't let their lack of experience with adults in your situation put you off -- hopefully this lack of experience will make them especially open to doing teamwork with you!

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