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Dispelling the myths about Tourette Syndrome

Adrian_Scope
Adrian_Scope Posts: 8,366

Scope community team

Today on the community, Helen from Tourettes Action will be taking your questions and trying to dispel the myths surrounding Tourette Syndrome.

Tourette Syndrome is a neurological condition, the key features of which are tics and involuntary/uncontrollable sounds or movements. However, it's sometimes more widely associated with the relatively uncommon symptom of Coprolalia, or the involuntary utterance of swear words or other inappropriate remarks.

So, if only 10% of all people with Tourette Syndrome exhibit Coprolalia (which itself is not exclusive to Tourette's) what does the condition really involve?

If you're curious about Tourette Syndrome, have any questions about the condition or live with it and would like to find more support, please post them here, so @Helen_TourettesAction can answer your questions.


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Comments

  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,948 Disability Gamechanger
    I have always been curious about Tourette's. Every person that I have come across who has this, swears when they experience tics. Do you know why it is only swearing or inappropriate remarks? Why not everyday words?
    Disability Gamechanger - 2019
  • CuriousStace
    CuriousStace Member Posts: 1 Listener
    I think my son might have Tourette’s. Is it something that can develop or get worse as he gets older? The school think hes doing it on purpose and is badly behaved but his tics seem to get worse the more hes punished. Who do I go to if they won’t help and how is it tested for?
  • Helen_TourettesAction
    Helen_TourettesAction Member Posts: 5 Listener
    @Ami2301
    Thank you for your post and apologies for the slight delay in getting back to you.  That's interesting that each person you have met with Tourette Syndrome (TS) has had coprolalia (the clinical term for involuntary swearing).  Only a minority of the TS population (between 15-20%) have this particular feature of TS.  Many people do 'tic' everyday words - in fact most people with TS do this.  

  • Helen_TourettesAction
    Helen_TourettesAction Member Posts: 5 Listener
    Hi @CuriousStace
    Thank you for your email and apologies for the delayed reply.  TS can progress as people get older, and typically young people notice a peak in their symptoms around puberty and when they move into secondary school.  As tics are involuntary and symptomatic of a medical condition, punishing someone for their tics is completely inappropriate and cause an individual lots of stress - which in trurn makes the tics worse.  TS is diagnosed either by a peadiatrician, neurologist or psychiatrist.  There are no physiological tests to determine TS, it is diagnosed based on observation and interview by medical professionals with understanding and experience in this field.  The first port of call is to arrange an appointment with your GP who will then refer your son to a secondary care practitioner.  As I mentioned before, if the person is under 18 this is typically a peadiatrican, or it could be a neurologist or psychiatrist.  These professionals may be attached to your local CAMHS team or not.  Tourettes Action also have a list of consulatants who are specialist in diagnosing and treating TS.  If you contact our helpdesk they will send you the list and you can take this to your GP to discuss referral options.  [email protected] 0300 777 8427
    Please do contact our helpdesk if you would like to speak further about your situation to one of our trained team.

  • Helen_TourettesAction
    Helen_TourettesAction Member Posts: 5 Listener
    Hi @Hart86 thank you for your question - it's not at all inappropriate, in fact it's an excellent question and highlights the unseen side of Tourette Syndrome.  Tics can be very uncomfortable and painful for people.  Tourettes Action ran a survey about living with TS in 2018 and over 85% of people answering the survey said they had experienced pain or physical damage because of their tics.  Chronic pain and physical wear and tear to the body through repetitive movement is unfortunately something that a large majority of people with TS experience.  Howw much someone is aware of their tics is very much dependent on the individual.  Young children may not be aware of some or all of their tics, and adults too may not notice every tic as it arises.  However, many people feel a 'premonitory urge' before a tic, which is a physical sensation and the act of doing the tic is what relieves the premonitory urge.  People have described the premonitory urge as an itching/burning feeling. Or another comparison often used is feeling you get prior to sneezing - the sneeze itself is what relieves the uncomfortable feeling building up - and that is how some people describe their tics.
  • LaughingLolly
    LaughingLolly Member Posts: 100 Pioneering
    I have been diagnosed with it 3 times and then in diagnosed in between. I think it's because some people suppress so much they get counter -tics and the doctor looks at that instead. I asked how do you explain that verbal tics are 80% in your head before you even say one out loud? I don't know but everyone in our family actually has mild tics of some sort anyway. I find they get worse with a virus or just before a virus...does anyone else experience that? There is also a lot of diagnosed ASD, implied and under investigation and they are related but I don't know the stats. Does anyone know them? 
    A laugh a day keeps the psychiatrist at bay. 
  • LaughingLolly
    LaughingLolly Member Posts: 100 Pioneering
    Oh. Yes. Anne I want to ask about supoorts. I had the same neck tic for 24 years then one day my neck made an extremely loud sound and now I get muscle spasms in my neck instead. I feel I've damaged something inside and I wondered if I should have been wearing a support all that time? Do you agree or disagree with supports for neck tics? 
    A laugh a day keeps the psychiatrist at bay. 
  • Helen_TourettesAction
    Helen_TourettesAction Member Posts: 5 Listener
    Hi @LaughingLolly

    In the book 'Tic Disorders-A guide for parents and professionals' by Uttom Chowdhury and Tara Murphy - they state that:
    "the prevalence  rates of Tourette Syndrome and ASD have been looked at in a number of studies.  Baron-Cohen et al. (1999) identified 8% of children with autism as having co-occurring Tourette Syndrome.  Canitano and Vivanti (2007) found that 22% of children with ASD in a clinic setting had a tic disorder.  Burd et al. (2009) looked at a large cohort of individuals with Tourette Syndrome and found 4.6% had co-occurring ASD."

    Some people do use supportive aids to help manage their physical tics.  I would suggest that you get advice from a physio or an occupational health therapist about your neck tic and what - if any - support to use.

  • Helen_TourettesAction
    Helen_TourettesAction Member Posts: 5 Listener
    Hi @Hart86
    The cause of Tourette Syndrome has not been fully established but a lot has been learnt over the last 20 years. It is known as a neuro-developmental condition, as a vulnerability to having tics seems to develop as the brain is developing, although tics usually first appear at around the age of 5 (can be younger or much older than this).  
    Brain scanning in people with TS has shown that there are some parts of the brain that function differently or have a slightly different size e.g. some of the structures in the motor circuits that control movement.There is probably an imbalance in the function of brain neurotransmitters (chemical messengers in the brain that send signals between nerve cells) including dopamine, and probably others

    Although tics often run in families there is not a single gene that causes TS or can be tested to diagnose it. It is likely that genetic make-up is not the only cause of TS. Other causes are called environmental, meaning that factors in the environment as the brain is developing may influence the risk of developing tics. It is likely that environmental factors interact with an individual’s genetic make-up to determine the risk. A large study which followed up over 6000 pregnant mothers and their children over time found that the strongest risk factor was inadequate weight gain of the mother during pregnancy, but not low birth weight or prematurity of the baby. In addition, use of cannabis and alcohol during pregnancy, and whether the child was the first born were also associated with a higher risk of the child developing TS.  Like the hunt for genetic causes, better information comes from studying large numbers of patients but this can be difficult to interpret and results across different studies have varied.

    Another possible factor that may trigger  TS or make it worse is infection. It is not unusual for people with TS to report worse tics during any kind of infection. There has been a theory that a particular kind of infection, with a bacteria called streptococcus, may be particularly important. This has been very difficult to prove as streptococcus throat infections are very common in children.

    For further information on causes of TS, please visit the Tourette Action website: https://www.tourettes-action.org.uk/21-causes.html
  • elle79
    elle79 Member Posts: 1 Listener
    Since the age of 8-9 I've had tics, started with nodding my head then that went away and a new one took its place, fast forward to adulthood, I have 4 tics that have lasted now for 8 years  and sometimes but not often I get a tic where I make a hum noise. I don't know what all this is but it's driving me mad! I'm sick of hurting from the tics and just want it to all go away? What is this? I've never been to the drs about it.
  • steve39
    steve39 Member Posts: 52 Member
    Ami2301 said:
    I have always been curious about Tourette's. Every person that I have come across who has this, swears when they experience tics. Do you know why it is only swearing or inappropriate remarks? Why not everyday words?
    sorry i don't always swear most of my tourettes come's out as jerks
  • steve39
    steve39 Member Posts: 52 Member
    @Ami2301
    Thank you for your post and apologies for the slight delay in getting back to you.  That's interesting that each person you have met with Tourette Syndrome (TS) has had coprolalia (the clinical term for involuntary swearing).  Only a minority of the TS population (between 15-20%) have this particular feature of TS.  Many people do 'tic' everyday words - in fact most people with TS do this.  

    yes you are right lol i,ve had t,s for 25 yrs and find the only thing to help me with it is Botox


  • steve39
    steve39 Member Posts: 52 Member
    I think my son might have Tourette’s. Is it something that can develop or get worse as he gets older? The school think hes doing it on purpose and is badly behaved but his tics seem to get worse the more hes punished. Who do I go to if they won’t help and how is it tested for?
    i, was tested at the royal collage hosp London 
    2 he is not doing it on purpose
    3i'm not surprised that he's ticks get worse the more you beat up on him, by doing it you are telling him that is how he's supposed to behave, why don't you get the neurologist at the hospital to look at him, see what they say
    I have meet a school teacher and a stand up comedian who have tourette's but dont know if its something that get's any worse as we get older, the best thing to do is just ask your doctor
  • steve39
    steve39 Member Posts: 52 Member
    Hart86 said:
    I hope this is okay to ask but I always wanted to know; does it hurt? Like the tics? Is it uncomfortable and does the person know they are doing them or have any control over them?

    Sorry if that’s inappropriate to ask, my only experience of people that have Tourette’s is how they are portrayed on tv!! ?
    the only thing that hurts is banging my head literally against brick wall's or the ground, yes i do know what i'm doing when i'm swearing or coming out with silly comments, but you cant stop it any more than other people can stop giving you their opinion on things that they know nothing about  , 
    sorry but as for your last question I AM going to swear why in hell should you think that it's inappropriate to ask , questions , when this whole website hopefully is here to allow for question's to be asked and answers given, plus TV doesn't show you everything
  • steve39
    steve39 Member Posts: 52 Member
    I have been diagnosed with it 3 times and then in diagnosed in between. I think it's because some people suppress so much they get counter -tics and the doctor looks at that instead. I asked how do you explain that verbal tics are 80% in your head before you even say one out loud? I don't know but everyone in our family actually has mild tics of some sort anyway. I find they get worse with a virus or just before a virus...does anyone else experience that? There is also a lot of diagnosed ASD, implied and under investigation and they are related but I don't know the stats. Does anyone know them? 
    they reckon that it was with me all of my life, but because of the job's I was doing it just didn't come out until i had an industrial, 
    Stress can make things worse
  • steve39
    steve39 Member Posts: 52 Member
    Oh. Yes. Anne I want to ask about supoorts. I had the same neck tic for 24 years then one day my neck made an extremely loud sound and now I get muscle spasms in my neck instead. I feel I've damaged something inside and I wondered if I should have been wearing a support all that time? Do you agree or disagree with supports for neck tics?

    I've  found that wearing a collier at times helped but then i also found that some colliers pushed my neck in an angle that it wasn't supposed to be in, 
    the noise from your neck could have been gas from your mussel's escaping , like it do when you hold your finger tight n pull the skin over your knuckle and it go pop
    what did your doctor say ??
  • steve39
    steve39 Member Posts: 52 Member
    elle79 said:
    Since the age of 8-9 I've had tics, started with nodding my head then that went away and a new one took its place, fast forward to adulthood, I have 4 tics that have lasted now for 8 years  and sometimes but not often I get a tic where I make a hum noise. I don't know what all this is but it's driving me mad! I'm sick of hurting from the tics and just want it to all go away? What is this? I've never been to the drs about it.
    sorry but why haven't you told your doctor about your problems I'M Not being funny but art time's I Have to have BOTOX 4 Times a year just because of the spasm's that annoyingly take over the whole of my body
    you need to get your neurologists to look at you

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