Tourette's FAQ

How do you get diagnosed with Tourette Syndrome?

To be formally diagnosed with Tourette syndrome, an individual must have at least one vocal tic and at least 2 motor tics for at least a year, though not necessarily concurrently, and this cannot be better explained by any other medical condition and is not the result of substances such as medications. According to the diagnostic criteria, symptoms are supposed to be apparent by the age of 18, although there are people with adult onset Tourette's, some people with adult onset may have had subtle signs in childhood. Tourette's may sometimes be misdiagnosed as other conditions, especially if a doctor doesn't understand the complexity of the condition or that is isn't just tics or swearing. There are also other tic disorders such as provisional tic disorder, chronic motor tic disorder and chronic vocal tic disorder and also other conditions that can cause tics such as PANDAS / PANS. The type of doctor that usually diagnoses TS is a neurologist.

Do people know they are going to tic?

Before a tic, some people experience a sensation, termed a 'premonitory urge', this can feel like a pressure, itchy blood or as if there is something inside you or encasing your skin and it is very uncomfortable. Sometimes we may know what we are about to tic if it is a repetitive tic or if there's a phrase going around in our heads as an intrusive thought that we know we are going to yell, but a lot of the time it can be completely random and we may not know what is going to come out as a tic.

What are the management strategies for Tourette Syndrome?

There are a variety of management strategies for Tourette Syndrome which can include medications such as neuroleptics, Clonidine and Topamax, Comprehensive Behavioural intervention for tics, Eliminating food sensitivities / diet changes, supplements and Deep Brain Stimulation.

What other symptoms of Tourette Syndrome are there other than tics?

The vast majority of people with Tourette's often have at least one other co-occurring condition. Common co-occurring conditions include Obsessive Compulsive Disorder, ADHD, Anxiety, Depression, Irlen Syndrome, Sensory Processing Disorder and more. Other symptoms and Characteristic's of Tourette Syndrome include Rage attacks, disinhibition, needing the last word, obsessive sense of justice, obsessive compulsive behaviour, sensory issues and more.

What support in school can be offered to a student with Tourette's?

Support in school is vital for a student with Tourette syndrome so that we can make it through our years at school and have the equal chance to reach our full potential as our peers. The most important thing is that the school staff have an understanding of the condition, knowing that the tics are uncontrollable, unintentional and that we don't mean what we tic and that there is a hidden side to TS, so that students are not ostracised, disciplined, discriminated against or humiliated for something that is out of the students control. How the teachers treat the student with TS sets the stage for how the students will think it's acceptable to treat someone.  Support in school that a student with TS may receive include having a time out card,  having extra time on exams, rest breaks and a separate room for exams, use of a word processor, reduced timetable, private tutoring, a student mentor, being allowed to chew gum in class if it helps with tics, having the support of a teaching assistant and more.  In the UK, a student with TS can have an education, health and care plan or be on the special educational needs register. In the US, people may have an individualised education plan or a 504 plan.

Can people stop their tics?

Tic's are uncontrollable, some people can suppress them for a short period of time , but this should NEVER be encouraged and no one should ever be told to hold in their tics. If tics are supressed the urge only accumulates and becomes very uncomfortable and distressing and it is all the individual can focus on. Suppression also often leads to rebounds of more severe symptoms later on and this can be dangerous as people can have tic attacks which can lead to injury, the rebounds often happen in an environment where the individual feels comfortable such as when returning home after holding in tics all day. Suppression of tics can also exacerbate OCD symptoms, anxiety and can trigger rage attacks and migraines for some people.

How do you accept your Tourette's?

Accepting your Tourette's is paramount, but it is a difficult journey. In the beginning, people may feel anxious about talking to others about their condition, but over time we can see that it is nothing to be ashamed of. Sometimes people may worry about ticcing in public due to other people's reaction, but it is helpful to remember that if someone stares, they are probably just curious and if anyone makes comments or gives you a dirty look then it reflects their own misunderstanding and ignorance, we cannot control our tics so it is not our fault, but other people can control how they react. When people react negatively it means nothing about us, just them. Sometimes it can help to look at the positives of the condition, has it helped you to develop strength, compassion, empathy or resilience? This can help you to have a more positive outlook on your journey and make it feel like you are growing as a person, although you definitely don't ned to be positive al the time, especially not in the worst days, because at times Tourette's can feel like a war between your brain and body and is no fun so it's okay to feel sad, frustrated or defeated and times -just don't give up. Sometimes it hurts to feel misunderstood and that is something that people with TS may feel a lot, sometimes it helps to remember that you are misunderstood because you are different and that can be a good thing as that means that you have a unique perspective on the world and can give the world something that others cannot. Just by going around, being your lovely, authentic self whilst ticcing loud and proud can help others develop more acceptance and understanding, so you are creating a more inclusive society just by being you!

What can be a tic?

Pretty much anything that the human body can do can be a tic, motor and vocal tics are classified into two sections - simple and complex. A simple motor tic would be something that involves just one muscle group and isn't disabling. This could include nose twitching, blinking, finger twitching, tilting your head to the side, raising your eyebrows etc. A complex motor tic could include movements that are ritualistic, long or debilitating or involve multiple muscle groups. This includes jumping, falling to the ground, doing  squats, clapping, kicking, having ritualistic movements and more. A simple vocal tic could include squeaking, humming, making syllable sounds and more, and a complex vocal tic could include screaming, yelling phrases, saying whole sentences, observational tics, singing and more.

What are breathing tics?

A breathing tic is where someone may breathe in patterns, hold their breath or forcefully exhale as a tic and some people may feel a sensation in their chest that makes them feel as if they are unable to satisfy the breath. Breathing tics can cause someone to feel lightheaded, to have cold extremities and some people may even pass out - thankfully most breathing tics usually aren't this extreme.

What are Phantom tics?

Some people experience phantom tics, which are tics where an individual experiences the premonitory urge that comes before a tic, as an out of body sensation. They may feel it as if there is something congrugating around door handles, chairs, cups or a sensation around certain objects. Some people may feel as if there is an invisible barrier or something floating around or sticking to things in the environment or someone may feel a fuzziness around things. Phantom tics can be sensed from the other side of the room, so you don't need to be touching an object to feel it, almost like a projected premonitory urge. They can precede Tourettic OCD rituals (different from classic OCD) and be associated with complex tics that involve the surroundings and tics involving touching objects or people or hitting and scratching surfaces

What are sensory tics?

Sensory Tics: Sensory tics are involuntary sensations similar to the premonitory urge but is not accompanied by a movement or vocalisation tic. Its a distressing and uncomfortable sensation that can feel like "itchy blood". These symptoms cannot be suppressed or redirected and are difficult to manage. They can travel around the body in different localised locations and can potentially cause an individual to become anxious or distraught at the feelings it can cause. It can feel as if the urge to tic cannot escape the body therefore these sensations don't have an associated visible tic but is a hidden symptom that needs understanding.

What impact does Tourette Syndrome have on daily life?

Tourette's affects everyone differently, for some people it may not cause many major issues but may just be something that is there, but for some people it can have an impact on someone's quality of life or ability to perform certain tasks. Tourette syndrome may impact someone's ability to get to sleep as they may be up in the night ticcing, which can lead to sleep deprivation. Some people may struggle to focus when ticcing because the tics keep interrupting their train of thought. For some people, Tourette's may cause disability as someone may be unable to dress themselves, walk, use technology, drive or cook due to tics. Tics can also affect writing as people may scribble on the page and it can affect reading due to eye tics, neck tics and OCD causing someone to reread lines. Tourette's can also impact family life as family members may become carers and it can be stressful for the family and it can also affect someone's social life is someone isn't being met with understanding. 

What are tic attacks?

A tic attack is a sudden outburst of severe tics that cannot be suppressed. I can happen randomly and includes repetitive motor tics, for some people it can look a bit like a seizure as people may start shaking and jerking, some people cannot talk during a tic attacks. For some people, tic attacks can look more like dystonia, where people tense up and get stuck on the floor. Some people refer to tic attacks as tic fits, for most people they pass without any extra intervention needed, and for some they can be a daily occurrence, in some circumstances, tic attacks can last hours, even days and people may need to go to the ER / A&E so that medication can be administered to stop the attack.

What does a parent of a child with Tourette's need to know?

Remember that your child cannot control their tics or rages, and OCD compulsions are really difficult to stop. Meet your child with empathy and compassion and don't discipline them for their rages, tics or compulsions, they are symptoms, not behaviours. Please try not to feel ashamed when going out in public with your child who is ticcing, there is nothing to be ashamed of an your child is perfect as they are, by going out with them and not feeling shameful about their symptoms, they can develop the confidence to love themselves how they are and go out in public and be themselves without feeling the need to hide their tics. Please keep advocating for your child to get them the support they need and be there for them when times get tough, TS is a very difficult thing to live with. Know that an individual doesn't choose what they tic, it has no intention behind it and tics have no volume control, therefore telling us to be quiet is often counter productive, if the volume of the tics is mentioned the tics may get louder and more prominent, but this is uncontrollable. Tics are not habits and we cannot 'learn' to stop ticcing so it is important to accept your child as they are and help them find healthy management strategies that work for them. As a parent, you sometimes make mistakes and that's okay, we all do and you are learning along this journey with your child. Give yourself some credit for all that you do to help your child and don't be afraid to do things differently when you need too, just find what works for your family. Be sure to look after your own mental health as well as you cannot pour from an empty cup and sometimes caring for a child with severe Tourette's and / or co-occurring conditions can be stressful. Know that you are not alone and you can talk to other parents and people in the community who understand, get advice from other parents and older people with Tourette's to see how you can support your child best, see if you can join an online group or a local meetup, and most importantly, listen to what your child has to say as they know themselves best.

How can diet changes help Tourette's?

Some people with Tourette's find that certain food sensitivities can trigger their tics and other symptoms such as rage attacks. Common dietary triggers include gluten, dairy, food dyes, sweeteners, corn, sugar, chocolate, citrus fruits, nightshade vegetables, chicken, eggs and more. Everyone has different trigger foods, mine are dairy (for tics and Tourettic OCD) and food dyes (for rage attacks). Food sensitivities can trigger these symptoms as it triggers inflammation in the brain, people with Tourette Syndrome have been found to have higher levels of inflammatory cytokines compared to people without the condition. With the food sensitivities that trigger symptoms however, they often don't show up on traditional allergy tests as different anti-bodies are usually involved (non-IgE antibody sensitivity - IgA, IgM and IgG may be involved, but usually the latter) and it is often a delayed reaction meaning that it can occur anywhere from 30 minutes to 48 hours after the consumption of the trigger food. Due to this, it can sometimes be hard to identify food sensitivities, but some people look for patterns by seeing what they ate a lot of when tics are bad, or by doing an elimination diet or by seeking the help of a naturopath, environmental physician, nutritional therapist or integrative medicine doctor. Often, it is the food you are addicted to and crave most that you are sensitive too. It is important to be committed when managing your condition through diet as even the tiniest amount of a substance can trigger symptoms, it is important to be mindful of what is being consumed when outside of the house when in school, with family members or at friends houses. It is important to manage someone's condition through diet / allergen elimination with the right intentions, it should NEVER be done with the intent to change a person as that can harm someone's self-esteem and make them feel unworthy as they are, but it should be done with the intention to reduce someone's struggles and to give them a good quality of life, which everyone deserves. Diet changes don't necessarily work for everyone as there are many other things to look into such as undetected PANDAS / PANS, Irlen syndrome, photosensitivity, jaw misalignments, candida overgrowth, leaky gut, sensory processing issue sand other triggers which could be exacerbating tics and other symptoms, but for those people who are receptive to the allergen elimination the results can be remarkable and seem like an absolute miracle, it can be life changing or even life saving in some cases. Food sensitivities can also be present in people with PANDAS / PANS and should be investigated. 

Why are tics worse in some places than in others?

Some people may find that the tics and other symptoms are a lot worse in the home environment if an individual has been suppressing in public. People may choose to suppress consciously or they may be doing it subconsciously and be unaware themselves that they are even holding in their tics, but when tics are held in they must come out at some point, and they usually come out when a person feels the most safe, such as in the home. This does not mean that there is anything wrong with the home environment, it just means that people feel more comfortable there. Schools may not see the impact the condition has at home so they may underestimate the severity or appear to not understand.

Some people may tic more in an environment where there tics are triggered such as a setting where certain sensory stimuli or environmental allergens may be present. These can include fluorescent lighting, flashing lights, bright lights, scented products, pollen, mould growth, certain cleaning products, being near others who tic and more.

What is the difference between a tic, a stim and a compulsion?

Tic, Stim or compulsion?

Many of the associated symptoms present in individuals with Tourette syndrome can look very similar and can be confused with one another. For some people, it may not be necessary to distinguish between different symptoms, but some people feel that it is needed to determine which treatment option may be the most effective if a particular symptom is causing distress or just for clarification or to rule out any co-occurring conditions or a differential diagnosis.

Tics are the symptom that is most frequently associated with Tourette syndrome as tics are needed for a diagnosis, but other symptoms are usually present as well. Compulsions are usually associated with OCD or sometimes Tourettic OCD if it is a tic-like compulsion, and stimming (also known as self-stimulatory behaviour) can include movements such as jumping, hand flapping, rocking backwards and forwards, swaying side to side, spinning, eye tapping, leg jiggling and more, vocal stims such as humming can also be present.

Tics: 

  • Tics are uncontrollable movements and vocalisations that can range from very mild to severely disabling.

  • Almost any movement or vocalisation that the body can physically do can be a tic.

  • Tics often change over time and can be replaced by another within hours, days, weeks or years of it first appearing. When you develop a new tic you have no idea how long it is going to last, but the likelihood is that it will eventually pass and be replaced by other tics as time goes by.

  • Tics can be simple or complex. Vocal tics can range from a subtle throat clearing tic to a full sentence with linguistic meaning that may be in context, but it’s vital to know that there is no intention behind it as we don’t mean what we tic and it does not reflect our opinions as we don’t choose our tics. Motor tics can range from a nose twitch to full body movements and repetitive ritualistic movements that must be performed in a specific order or until it ‘feels right’. 

  • For some people, tics often come with a strong, uncomfortable and distressing sensation beforehand, this is termed a ‘premonitory urge’. This sensation can feel different for everyone, some people describe it as an itch, tension, pressure or ‘itchy blood’. For some people it may feel like there is something stuck on their skin or something stuck inside their throat or chest, and some people may feel the urge as a surge of electricity shooting up their spine or into their limbs. Different tics usually have different sensations,  and the urge may be felt in a different part of the body from where the tic physically occurs, some people may experience phantom tics which are out of body sensations which precede a tic or tic-like compulsion, these urges are called phantom tics but they are relatively rare. Some people may not experience premonitory urges, and some people may not be aware that they are experiencing them until an older age and some people are aware of the urges since their symptom onset, especially if the urges are very prominent and distressing.

  • Tics often ‘wax and wane’ over time meaning that they can fluctuate in frequency and intensity, the periods of worsened tics may have a trigger such as certain dietary allergens, food additive sensitivities, sensory overload, exposure to electronic screens and fluorescent lights (photosensitivity) , sensory overload, stress, excitement and anxiety.

  • Some people can suppress their tics for certain periods of time; however, this should never be encouraged as it’s very physically uncomfortable as the urge to tic builds up and can cause immense distress. The tics that are suppressed will always have to come out somewhere, and this usually occurs in an environment where the individual feels safe and supported, which is why some people may experience an explosion of tics, rage attacks, migraines and anxiety returning home after a day of trying to suppress, tic suppression can also cause a massive build-up of tension therefore its vital to help an individual raise their self-esteem and become confident in themselves so that they no longer feel the need to suppress and can explain their condition to others.

  • Tics are the main symptom present for a diagnosis of Tourette’s to be made.

 

Stimming:

  • Stimming is also known as ‘self-stimulatory behaviours’ or stereotypies and the most common stims can include rocking back and forth, swaying side to side, jumping up and down, hand flapping and hand wringing. Some people may have vocal stims as well.

  • Stimming is usually repetitive and not necessarily as complex as tics.

  • Stims don’t usually change over time, a person will usually have similar stims throughout their entire life although they sometimes morph a little bit.

  • Stimming usually happens when an individual is excited, when we are daydreaming about something that brings us joy, or listening to a piece of music that we love, we may feel a sudden burst of energy that comes out as stimming such as hand flapping or jumping up and down.

  • Stimming can also help an individual to keep calm, a person may start stimming more when anxious or being overstimulated by sensory input, stims such as rocking back and forth can sometimes help people to stay calm.

  • Stimming doesn’t usually have a premonitory urge before it, it is possible to stop stimming but we shouldn't be asked or encouraged to stop as it helps us to express and manage our emotions and regulate sensory input, being told to stop stimming may trigger meltdowns as we are unable to let out our extra energy. 

  • Stimming can release beta-endorphins that can be beneficial to a person’s wellbeing.

  • Stimming is usually associated with Autism (ASD) but can also occur in people with sensory processing issues, anxiety, Tourette’s, ADHD and more.

Compulsions:

  • Compulsions are usually associated with OCD.

  • Compulsions can include hand washing, tapping, touching, turning light switches on and off, opening and closing doors, checking, straightening objects and long complex rituals, there are also mental compulsions which are known as covert compulsions.

  • The complex rituals can include multiple stages and may focus on specific numbers (some people may feel that certain numbers are ‘good’ or ‘bad’).

  • Compulsions can occur when doing specific daily tasks, some people may have certain rituals for toileting, walking up the stairs, dressing, turning the lights off, going to bed, eating etc.

  • Classic OCD compulsions are usually preceded by intrusive thoughts and anxiety, someone may perform a ritual in attempt to eliminate these thoughts and this can usually be helped with CBT (cognitive behavioural therapy). However, for a smaller percentage of people, these complex rituals may be more tic like as they are preceded by a physical sensation (premonitory urge) rather than a thought or emotion based fear – this is Tourettic OCD as its more sensation and tic based, these rituals can look virtually identical to classic OCD compulsions to the observer, but its important to distinguish what is preceding the ritual as CBT isn’t usually as effective for Tourettic OCD as the suppression of these rituals can cause the premonitory urge to accumulate and explode as more intense issues later on.

Is Tourette's lifelong?

Yes, Tourette syndrome is said to be a lifelong condition, some people are said to grow out of it but this is not always true. Some people live with many tics into adulthood, for some people the tics do decrease but people may struggle even more with co-occurring issues such as depression, OCD, anxiety, ADHD etc. By adulthood, some people may have found management strategies that help so much that their condition doesn't seem to affect them anymore, but there are still many adults out there with tics and other symptoms, therefore support for adults with Tourette's is vital, but there doesn't seem to be as much support for adults than there is for children.