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  1. #1
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    Adult Onset Tourette Syndrome

    I don't find much info on this, so I'm posting my own experiences, in case it helps anyone else in a similar situation.

    I've somehow acquired Tourette's as an adult, in my early 40's. I've no history of TS symptoms as a child---I was a rabid nail-biter, but definitely no twitching, compulsions or anything else. Well-behaved, quiet, did very well in school, etc.. No obvious family history of anything related either (although limited family history is available).

    The acquisition was not sudden, although the main impact was. I did some minor leg twitching in the throes of appendicitis many (10?) years ago, but that only lasted for a few hours while I was in emergency--I'm not even sure it's relevant. The real problems began around 4 years ago when I started having brief and small leg spasms sometimes at night while watching TV. This slowly increased over about 9 months, but was still at best a couple of twitches per night, only a curiosity. I then came down with some kind of chest infection, which accelerated things---one day I started twitching violently, lost control of emotions, had trouble breathing etc. I had several such major episodes over a span of a few weeks, with reducing severity. At the same time, however, much smaller arm, leg and head spasms started showing up.

    The major episodes disappeared altogether, but the twitches kept increasing in frequency. I used to count them on my way to work, about a 25 minute walk. At first it was just 5-10 tics, then went up to 20, then up to 80, then up to 200, and then I gave up because I kept losing count, and wasn't sure if I was maybe just starting to twitch due to counting. Nowadays I twitch every 1-3 seconds; sometimes I feel like I'm vibrating. Initially these were just motor tics (head shakes, arms, legs suddenly flying out etc), but after several more months some minor vocal tics appeared. These are now fairly common, although still only a small fraction of the motor ticks. (More complex vocal tics have started to appear recently, but are not yet an issue, and hopefully won't be.)

    I spent about a year and half being investigated for everything under the sun, getting test after test. My neurologist then was sure I had some kind of myoclonus or epilepsy, and I tried several medications, none of which helped (and all of which were unpleasant in side effects). It took almost another year to get an appointment with a neurologist that specialized in movement disorders. They immediately declared I had Tourette's, and also told me that adult onset was extremely rare, and little could be done. I tried a couple more medications (dopamine aggressors), but these actually did nothing. I haven't seen a doctor for well over a year, maybe 2.

    I had strong doubts of the TS (more strictly speaking TD-NOS aka "Tic Disorder Not Otherwise Specified") diagnosis, mainly because when I read up on TS people were talking about holding back tics for hours. I can hold them back for maybe 15 seconds. I rarely have a sense of premonition (but do get a sense of build-up when trying to hold it back). That doesn't mean they're constant---when I'm talking to someone, working intensively etc my tics reduce dramatically, almost completely disappearing. But I have to be talking or very very intensely paying attention---it seems to be largely an affliction of self-awareness. There is also a sensory component, everything makes me jump, I feel constantly surprised, and the world is very bright indeed. If I had to describe it one sentence, I'd say the world has been turned up to 11.

    Despite all this, and after some initial adjustment, it hasn't ruined my life. I looked at the Yale Tic severity test, and while I score around a 40/50 in tic severity, I'm only maybe a 50/100 overall--the overall life impact is small, at least so far. Walking is definitely harder, I avoid any situation where I have to sit passively, etc. But these are small things. I've also found a few coping techniques, eg by keeping one part of my body active/in-motion I can prevent tics in another part, at least for a while. I guess I've become good at disguising it too (apparently my head is very itchy).

    Anyway, that's the gist of it. There's obviously some O from OCD creeping in too, and the tics are in a constant evolution (my legs almost never twitch unless I'm actually walking, and I no longer get easily "stuck" half-way through a fine-motion, but I've acquired more vocal behaviours). I don't know what is going to happen in the future; at the moment the worst I expect are problems stemming from the mechanical wear associated with constant, violent movements. My optimistic view is based on the fact that many to most childhood cases of TS seem to run their course in 10 years-ish, so maybe that will happen for me too---why not, this came from nowhere so it could go back there at any time too.

  2. #2
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    Re: adult onset

    My Tourette's seemed to be really aggravated during adulthood. The tics were always with me but never so much a problem until I hit my late teens (which disappeared for a couple years) and just recently in the last year where it is now a major problem in my life. Mine was caused by a combination of stress and the anti-anxiety medication I was taking.

    As for holding them back, the only thing I am aware of doing is making the tics appear in the smaller tics and not so much the bigger tics. That's all I can do for a while. The bigger tics always come back with a vengeance though.

  3. #3
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    Re: Adult onset Tourette Syndrome

    Wow, What an interesting story.
    My son has TS and can't control his tics very long, but does seam to be able to if in public for a little while, but sometimes there is no holding back no matter where he is.
    I have found that certain medicines make his tics out of control!!!!!
    Anti depresants mainly.I nm afraid to give him alot of stuff now do to the unknown of what will happen. The anti dep were given for OCD.
    I am so glad Clive that this has not reuined your life. I am hoping this will not ruin my sons. He is only 15 and at a bad stage with it all.
    Take care

  4. #4
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    Re: Adult onset Tourette Syndrome

    Thank you for sharing your story, Clive. As you alluded to, adult onset Tourette is rare and is a controversial diagnosis.

    Not everyone with Tourette can suppress their tics, and the amount of suppression or duration varies from person to person. Usually those who suppress experience a build up of energy that requires the eventual release of their tics, and so they will look for an opportunity to leave the environment in which they feel a need to suppress in order to release their tics.

    Some will go into another room, a closed stairweel or into their car to get privacy, if that's important.

    It's great that your disorder has not affected your lifestyle, which is the way it should be. People should accept you for who you are and should not be influenced by your disorder.

    Have you considered pursuing further medical opinions to confirm the diagnosis?

    Haveyou been in contact with a local Tourette advocacy group for support?

  5. #5
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    Re: Adult onset Tourette Syndrome

    Quote Originally Posted by TSOW View Post
    Usually those who suppress experience a build up of energy that requires the eventual release of their tics, and so they will look for an opportunity to leave the environment in which they feel a need to suppress in order to release their tics.

    Some will go into another room, a closed stairweel or into their car to get privacy, if that's important.
    If I may ask, I wondered if people with Tourette who suppress their tics. The build up of energy you mention.

    If the person is not able to release their tics where they are comfortable or a place is not available, does this build up cause upset for example maybe like how a panic attack would? Or do the tics release on their own maybe when the build up happens?

    I apologize if I do not explain the question well.

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    Re: Adult onset Tourette Syndrome

    Quote Originally Posted by NicNak
    I wondered if people with Tourette who suppress their tics. The build up of energy you mention.
    That's a good question. From the people whom I have known, and from my own experience, the build up of so called tic energy usually just results in some tics "leaking out". So if the person is suppressing their tics in a social situation, but cannot get away when they feel the need to tic, because the tics are involuntary, they may sneak a grimace or a grunt or an arm movement when they think no one will notice.

    Tic suppression can become quite creative among people who are able to do it. They may redirect their tics to other body areas that either don't show, such as wiggling toes inside shoes, or feigning a sneeze or cough. There are lots of things people can do with hands, arms and legs that seem innocuous to those who don't realize these are actually disguised Tourette tics!

  7. #7
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    Re: Adult onset Tourette Syndrome

    For me it creates a panic attack or a meltdown (autistic). It's to the individual how t is dealt with.

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    Re: Adult onset Tourette Syndrome


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    Re: Adult Onset Tourette Syndrome

    Clive, are you still there??

    Your story helped me, 10 years later, to see that I am not alone.
    Almost everything in your story rings true with my story.
    Even the progression of the tics-small leg twitches while watching tv, progressing to Wilder leg, arm and hand movements, extra sensitivity to startle, etc. Increased tics when less busy, fewer tics while talking or busy with hands.

    A couple of things don't match up. I did not have an infection that exacerbated things like you mentioned. However, at the same time the tics started, I had been given (and took) antibiotics and puffers for what they thought was a chest infection, or pleuricy, (but which turned out to be arthritis in my thoracic spine causing radiating pain) no major tic episodes like you described, though, with trouble breathing, etc.

    I also do not have vocal tics.

    I have been seeing neurologists for four years now, had two MRIs to rule out spine tumors and MS, and bloodwork to rule out other conditions. More bloodwork and another MRI with contrast are planned for six month out.

    Was also told it is an adult onset tic disorder, but like you, I had no childhood tics at all, so it is puzzling why this would suddenly start.

    I have not tried medications because the side effects that were read to me seemed to outweigh the benefits.

    Thank you for posting your story ten years ago. It has helped me to read that I am not the only one in the world who is (has) going (gone) through this set of symptoms.

    If you are still around in this forum, I would like to connect to hear more about how you are doing now, and anything else you tried with success.

  10. #10
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    Re: Adult Onset Tourette Syndrome

    Hi levetra,

    Adult onset of a tic disorder immediately removes ay possibility of it being Tourette Syndrome as one of the main criteria for a disgnosis of TS is that the Tics must have started before the age of 18 according to the DSM-5:

    Three tic disorders are included in the DSM-5:

    • Tourette’s disorder (also called Tourette Syndrome [TS])
    • Persistent (also called chronic) motor or vocal tic disorder
    • Provisional tic disorder

    The tic disorders differ from each other in terms of the type of tic present (motor or vocal, or a combination of both), and how long the symptoms have lasted. People with TS have both motor and vocal tics, and have had tic symptoms for at least 1 year. People with persistent motor or vocal tic disorders have either motor or vocal tics, and have had tic symptoms for at least 1 year. People with provisional tic disorders can have motor or vocal tics, or both, but have had their symptoms less than 1 year.Here are the criteria in shortened form. Please note that they are presented for your information only and should not be used for self-diagnosis. If you are concerned about any of the symptoms listed, you should consult a trained health care provider with experience in diagnosing and treating tic disorders.

    Tourette Syndrome (TS)

    To be diagnosed with TS, a person must:

    • have two or more motor tics (for example, blinking or shrugging the shoulders) and at least one vocal tic (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time.
    • have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on.
    • have tics that begin before age 18 years.
    • have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or postviral encephalitis).

    Persistent (Chronic) Motor or Vocal Tic Disorder

    To be diagnosed with a persistent tic disorder, a person must:

    • have one or more motor tics (for example, blinking or shrugging the shoulders) or vocal tics (for example, humming, clearing the throat, or yelling out a word or phrase), but not both.
    • have tics that occur many times a day nearly every day or on and off throughout a period of more than a year.
    • have tics that start before age 18 years.
    • have symptoms that are not due to taking medicine or other drugs, or due to having a medical condition that can cause tics (for example, seizures, Huntington disease, or postviral encephalitis).
    • not have been diagnosed with TS.

    Provisional Tic Disorder

    To be diagnosed with a provisional tic disorder, a person must:

    • have one or more motor tics (for example, blinking or shrugging the shoulders) or vocal tics (for example, humming, clearing the throat, or yelling out a word or phrase).
    • have been present for no longer than 12 months in a row.
    • have tics that start before age 18 years.
    • have symptoms that are not due to taking medicine or other drugs, or due to having a medical condition that can cause tics (for example, Huntington disease or postviral encephalitis).
    • not have been diagnosed with TS or persistent motor or vocal tic disorder.


    Source : https://www.cdc.gov/ncbddd/tourette/diagnosis.html

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