SUPPORT, INFORMATION & AWARENESS ON TIC CONDITIONS, OCD, PANDAS / PANS AND RELATED CONDITIONS
Tourette Syndrome
Tourette syndrome is a neurological condition where people can experience uncontrollable movements and vocalisations called tics. Almost anything that the human body can physically do can be a tic, people may have tics where they jump, clap their hands, yell, make animal noises, twitch their nose, blink incredibly fast, make hand gestures, finish peoples sentences, yell contextual phrases uncontrollably and more. Tics often change over time, just because you haven't had a chirping tic before doesn't mean that you won't have one in the future. Some tics can last just a day, whilst others can last years, some may even be a one off. Tics also wax and wane with triggers, some days people may have very prominent tics, and other days people may not tic at all. Tourette syndrome is thought to have a genetic predisposition as it often runs in families. Most people with Tourette syndrome also have other co-occurring conditions such as Attention Deficit Hyperactivity Disorder, Obsessive Compulsive Disorder, Sensory Processing Disorder, Irlen Syndrome, Anxiety, Depression, Specific learning difficulties such as dyslexia, dyscalculia (difficulty with arithmetic) and dysgraphia (difficulty with handwriting).There are also other symptoms of Tourette's such as rage attacks, disinhibition, difficulty with transitions, difficulty with social skills, obsessive compulsive behaviour and much more. Some people experience a strong sensation before a tic, this is called a premonitory urge. The urge may be in the same part of the body where the tic occurs, or in another part of the body. Some people may describe the feeling like a 'pressure' or that something is inside them or on their skin, or that there is a fuzzy feeling or tension in a certain area of their body.
Types of tics:
Simple motor tics- Involuntary movements of small muscle groups. These can include blinking, nose wrinkling and facial grimacing.
Simple vocal tics- Single sounds or syllables that involve the airway and mouth such as sniffing, tongue clicking, throat clearing and making short vocalizations that have no linguistic meaning.
Complex motor tics- These include multiple muscle groups and can be ritualistic in nature and have multiple parts. These can include jumping, running, hand gestures, falling to the floor. and more.
Complex vocal tics- These can include words or long linguistic phrases. They are like any other tic and have no intention behind them and are involuntary.
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Echolalia- Repeating heard sounds or phrases
Echopraxia- Repeating other people's movements
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Palilalia- Repeating your own syllables or words when speaking, can sometimes look like a form of stutter.
Copropraxia- Inappropriate movements such as doing the middle finger gesture.
Coprographia- Writing inappropriate things drawing inappropriate images.
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Coprolalia- This tic affects between 10-15% of those with TS. It can include swearing and saying inappropriate phrases and can be triggered by things in the environment but are unintentional.
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Phantom tics- Where the premonitory sensation is outside of the body such as stuck on an object or on someone. It can feel as if you can sense a pressure or fuzziness on or around an object, you do not need to be touching the object to feel this, it is an out of body sensation and could be felt from the other side of the room.
Sensory tics- These consist of involuntary sensations such as an energy surge or itchy blood sensation like the premonitory urge that comes before a tic, but is not accompanied by an involuntary movement or vocalisation. It can be compared to a tactile hallucination of sorts.
Mental tics- Involuntary thoughts such as a word or phrase repeating in your mind for no reason. Mental tics can include Coproskepsia which is where people have swear words involuntarily come and repeat in their minds, Echoskepsia which is where you echo things you have heard in your mind and Paliskepsia which is where you echo your own thoughts. Mental tics are different to intrusive thoughts as intrusive thoughts are usually anxiety provoking due to the content and are what you are most against (ego-dystonic) and may be associated with a compulsion whereas mental tics can be random and are not associated with a compulsion.
Blocking/paralysis tics- These are tics where you become unable to use certain limbs as if they are being blocked off and it can also include paralysis tics where you drop to the floor and temporarily cannot move your limbs.
Bladder / bowel tics : Involuntary urinating or having bowel movements. A bladder tic can come as part of a stomach clenching or abdominal tic, this is different to the increase in urinary frequency or enuresis seen in PANDAS / PANS as the increase in urinary frequency is a genuine need to pee and enuresis is incontinence where someone pees completely uncontrollable, with a bladder tic and individual doesn't have the genuine need to pee but they may have the premonitory urge that comes before a tic and the pee may come out forcefully to satisfy the tic.
Self injurious tics- Tics that can involve hitting oneself, scratching yourself or injuring yourself in any other way.
Impulsive tics- Tics that are done on impulse with no regard to the consequences, these can include running into the road, jumping from heights, throwing things or hitting others.
Writing tics- Tics that cause you to write a word or phrase ether on paper, an object or on a digital device and it can also include stabbing paper with a pen and scribbling or drawing on a page.
Breathing tics- Can include breathing in patterns, breath holding, forceful exhaling and the feeling of being unable to satisfy the breath.
Tourettic OCD rituals - Rituals that look similar to classic OCD rituals but are preceded by a premonitory sensation instead of an intrusive thought.
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Tic fits/ attacks- These are irrepressible episodes where the intensity and frequency of tics intensifies greatly and can sometimes look like a seizure or dystonia, some people may struggle to talk during a tic attack.
Dystonic tics - Involuntary twisting and turning of limbs or anything body part that is often slow and writhed, some people may tense muscles for long periods of time and hold it and some people get stuck in a certain position, which can lead to a posture being maintained
Tonic Tics: Tonic tics include tensing of the muscles
Clonic Tics: Clonic tics include jerking of a body part.
Observational tics: These tics are where a vocal tic may comment on the surroundings or be triggered by them and they are likely to be in context to the situation. For example, someone might see someone with ginger hair and tic "You look like a carrot" or may see someone who is overweight and tics "stop eating all the cakes", these tics can be inappropriate for the specific situation but they are not what we are thinking. It's as if we have no filter and the worst thing comes out, as if there is a little toddler in out brain who just wants to yell the one thing that will mortify us most, we don't want to be ticcing these things. Some people tics may also finish people's sentences, or answer back to what people say.
Oppositional tics: Oppositional tics are where a tic can appear to answer back disrespectfully or yell 'NO!' when someone is asked to do something. This isn't the individual doing it, it is just the tic saying that, a person will often say 'actually yes, I didn't mean that' afterwards.
Everyone has different tics and they affect everyone differently as Tourette's is an extremely individualised condition.
Everything you need to know about vocal tics
The Hidden Aspect of Tourette's
So much of Tourette syndrome is hidden, it’s so much more than meets the eye. Many people just see the visible movements and vocalisations, but they don’t see the toll it can take of every aspect of our lives. There are mental tics, intrusive thoughts, premonitory urges, sensory sensitivities, sensory tics, anxiety, suppression- and let’s not forget the possible co-occurring conditions such as ADHD, OCD, Anxiety, Depression, Sensory processing disorder, Autism spectrum condition and more; for some people, the co-occurring conditions may be more difficult to live with than the tics themselves.
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Some people with Tourette syndrome and their families can sometimes be subject to a lot of ignorance, hate and discrimination and this can have many negative implications on a person’s confidence and self-esteem. If an individual isn’t in an inclusive environment, then it can hinder the development of self-acceptance and lead someone to feeling shame for who they are and can cause the individual to have a distorted perception of themselves which can have a damaging effect on a person’s mental and emotional wellbeing. This can be a ‘behind the scenes’ impact of the discrimination that people with TS may face on a daily basis, therefore an individual must be given the tools to explain their condition effectively to create an environment where they are accepted for who they are and the tics can become background noise to everyone else, just like subtle chatter or the scratching of pens on paper.
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Some people may suppress their tics in public, either consciously or subconsciously. Conscious suppression is where people are suppressing voluntarily as they may not want to draw attention to themselves, whereas subconscious suppression is when the person is not aware of how much they're suppressing until it’s too late and this can sometimes occur due to an internalised fear of judgement. Any type of suppression can be detrimental to an individual’s wellbeing as it’s uncomfortable, distressing and physically intolerable as the urge builds up as a physical sensation until it aches, similar to holding your breath. Anything that is suppressed will always need to come out eventually, as tics are involuntary, therefore tic suppression can lead to extreme rebounds of tics, rage attacks, anxiety, migraines and a plethora of other debilitating symptoms so suppression should not be encouraged. The rebounds from suppression later on can also trigger full blown tic attacks which can lead to serious injuries and well as feeling both mentally and physically drained. This is why it’s vital that any young person with Tourette Syndrome has an efficient home-school communication agreement, this is so that teachers can be informed of any changes at home and are able to incorporate any support into the school day to prevent any issues resurfacing later on, and teachers will need to be understanding when it comes to homework as we may need deadline extensions as symptoms can present differently at different times.
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Some people with Tourette’s also experience mental tics which can be incredibly distracting to the individual and can make it virtually impossible to focus as you are trapped in your own mind. Mental tics differ from person to person but they can include repeating a certain phrase in your mind, having to repeat every word in your head over and over again before you can get out what you want to say and more. Mental tics are different to intrusive thoughts, as intrusive thoughts are anxiety provoking whereas mental tics are just random.
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Many people with Tourette syndrome experience premonitory urges before their tics, although not everyone has this. A premonitory urge is a sensation that can feel close to tension, tingling, strong pressure, a fuzzy feeling or as if there is something stuck to your skin or inside your body, it feels different for everybody but we can all agree that its highly irritating and uncomfortable- sometimes the sensation can be so strong that it can make us feel physically nauseated. Sensory tics can include a sensation that is almost identical to the premonitory urge, however the difference is that sensory tics occur on their own without an accompanied physical movement or vocalisation whereas a premonitory urge precedes a physical or vocal tic, like a warning. Sensory tics can travel through the body at different localised positions and can be described as a surge of ‘tic energy’ and can feel like ‘itchy blood’ flowing through your veins.
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Anxiety is another massive factor in some people’s conditions that may go undetected. Some people with Tourette syndrome may worry what other people are thinking of them, they may worry that their friends will leave them, and they may feel isolated and ashamed. This can cause someone to live in a near constant state of tension and can consume valuable energy leaving a person fatigued and exhausted. Some people might have more generalised anxiety where they are nervous and agitated without a specific reason, and this can make life extremely difficult.
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In school, college, university, and in the workplace, a person with TS may struggle with certain aspects such as reading, writing or mathematics, and this may sometimes be misinterpreted as defiance, when in fact it’s a lot deeper and not intentional at all. Certain specific learning difficulties such as dyscalculia can co-occur with Tourette syndrome, if dyscalculia is present then an individual may have difficulty with mental arithmetic such as adding, subtracting, multiplying and dividing, consequently they may experience high levels of math anxiety which can manifest itself as physical sickness and stomach pain. Some people may wrongly assume that the inability to engage in mathematical equations is disobedience, when the reason is actually an underlying neurological difference which may have gone undetected. Other difficulties that a student or a member of staff with Tourette’s may face include executive dysfunction, concentration difficulties and handwriting problems.
An individual with an executive function deficit may have difficulty organising, prioritising and starting tasks, however this isn’t a form of procrastination, an individual literally cannot implement the appropriate mental processes to complete or start certain tasks. Concentration difficulties can make it difficult for an individual to focus on the task at hand as an individual’s focus may be scattered due to comorbid ADHD or tics and OCD thoughts and compulsions that make it difficult to concentrate. Handwriting difficulties are also a common occurrence in people with Tic disorders due to a variety of factors, these may include fine motor coordination difficulties, hypermobility, brain allergies triggering neuro-inflammation, dysgraphia, hand/arm/eye tics, eye tracking problems or undetected PANDAS/PANS. As you can see from this list of possible issues, there is a lot more going on behind the scenes that will need to be addressed to ensure that the individual reaches their full potential and receives the support, accommodations and modifications that they need to succeed and maintain healthy mental and physical wellbeing.
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Sensory processing issues are also very common in the Tourette’s community- fluorescent lights can worsen tics, the TV screen may be too bright, the lunch hall may be overwhelming with so many people chattering over each other and the collar of someone's shirt may be chafing their skin , therefore aggravating any neck tics. These sensory issues can make daily tasks difficult and distressing, therefore some people may need a quiet time out space, fidget tools, being able to wear softer fabric, being able to wear ear defenders / sunglasses and more.
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There are many troubling symptoms that those of us with TS go through that can be invisible to the naked eye so it's vital that we are supported by a compassionate and empathetic support network.
What Management Strategies are there for Tourette's?
Most doctors prescribe medication to try and manage the symptoms of Tourette Syndrome, these medications can include anti-psychotics (also known as neuroleptics) or medications such as clonidine (which is marketed to treat high blood pressure and ADHD) and Topiramate (which is marketed to treat epilepsy). There is not a medication marketed specifically for Tourette Syndrome, and there is no one medication that works for everyone so it is often a trial and error process, and many of the medications have unwanted side effects, however for some people they can be highly effective.
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There are options for managing Tourette syndrome without the use of medication. Some people in the Tourette syndrome community report beneficial effects from changing their diet and eliminating allergens. People can have hidden food sensitivities that trigger inflammation in the brain, thus triggering or exacerbating symptoms.
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Dietary management for Tourette's:
-Some people in the Tourette's community report symptom improvement after eliminating food sensitivities. It is possible that the reaction to food sensitivities could trigger some sort of imbalance in the body which leads to neurological symptoms. This makes sense as food sensitivities have been associated with other brain conditions such as Schizophrenia, depression, bipolar disorder and other conditions.
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- Common trigger foods can include dairy, gluten, food dyes, sweeteners, sugar, citrus fruits, nightshade vegetables, corn, sugar, cocoa, chicken, egg, MSG, salicylates or any allergen. Everyone will have a different combination of trigger foods as it's very individualized. Most people have more than one food sensitivity triggering symptoms, and different sensitivities can trigger different symptoms.
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- People have different levels of receptivity to allergen elimination / diet changes. Some people report a slight or moderate reduction in symptoms and others may see a dramatic decrease in symptoms, some people may not see a difference if there are other triggers present which have not been addressed.
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- Some people may struggle to manage their TS through diet due to sensory issues, eating disorders, nutritional deficiencies etc. Some people don't need any sort of management strategy as they can live with self-acceptance and support from an inclusive society. Some people may prefer to use other methods such as medication, Comprehensive Behavioural Intervention for Tics, Deep Brain Stimulation etc. and these can be used in conjunction with natural approaches where necessary.
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- Some people find their food sensitivities through the elimination diet and looking for patterns with a food diary or starting off hypoallergenic and additive free, this can be an issue for some people as some people may 'fridge hoard' or consume trigger foods when outside of the home, but the tiniest bit of an allergen is enough to trigger a severe neurological response. Many of the sensitivities are delayed (IgG) so it can be harder to detect. A delayed food sensitivity means that the reaction may not be present until a few hours or more after consumption. It can help to see a naturopath, integrative medicine doctor or environmental physician.
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Disclaimer: I am not a medical professional, this is based on my own experience so should only be used for educational purposes and is NOT to be used as a substitute for diagnosis or treatment from a qualified medical practitioner.
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Diet and food sensitivities have also been linked to ADHD, and many people in the Tourette's community also have ADHD. There was a study in the UK that found a link between food additives and ADHD like symptoms which led to 6 food dyes being taken out of UK food. The study was done by Southampton university.
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If you manage your condition through diet it can help to take precautions to prevent vitamin and mineral deficiencies.
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CBIT : CBIT stands for Comprehensive Behavioural Intervention for tics and is a therapy that is often recommended to help people manage their tics. It doesn't stop the tics, but one of the techniques that people are supported to develop as a part of this therapy is 'tic redirection'. This is where a painful or disturbing tic can be changed and replaced with a 'tic blocker' or a movement or vocalisation that does not affect the individual as much as the original tic but still fulfils the premonitory urge and stops the original tic from happening and causing harm. Not every tic needs to be redirected, only the ones that cause harm to an individual or bothers the individual and impacts their daily life. If people have tics that do not disturb them then they may find it better just to tic freely, however for some people, tic redirection can help someone have a better quality of life and can be beneficial, although a smaller percentage of people may struggle to or be unable to redirect tics.
Another element that some CBIT therapists use is Exposure Response Prevention which is where people are encouraged to 'get used to the feeling that comes before a tic' to try and let the urge pass, however some people may find that this makes things worse as it is suppressing the tics. CBIT can also help people find tic triggers, and this can be incredibly helpful as eliminating and avoiding triggers can reduce peoples tics and give someone a better quality of life. Another element of CBIT is helping people develop relaxation strategies, this is unlikely to help with everyone's tics, but some people find that tics can get worse with stress, anxiety and excitement so in those times it may help reduce the intensity of the tics, and can also help people deal with the co-occurring anxiety that many people with Tourette's experience. A good CBIT therapist is one that empowers the individual, helps the individual develop resilience and helps raise their self-esteem.
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Deep Brain Stimulation: DBS is a surgical procedure where electrodes are implanted in a specific target area in someone's brain. There is a pulse generator that is usually placed in the stomach or chest area and when this is switched on, a high frequency stimulation is delivered to specific areas of the brain that is said to disrupt the tic signals. This is usually only used in very severe cases of Tourette Syndrome, there are risks and side effects such as infection, stroke, bleeding in the brain and seizures, but many people who have the surgery are completely fine and it does help reduce their symptoms.
Magnesium: Some people report that magnesium helps their tics.
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Rage Attacks
What is a rage attack?
A rage attack (also referred to as meltdowns or neuro storms) is an uncontrollable neurological storm where an individual may experience intense anger, frustration and fury. Although anger is a symptom of a rage attack, it isn’t an anger issue or behavioural problem as they are just as involuntary as the tics and we don’t want to experience these attacks therefore it can lead to intense distress, the anger is just a symptom of this neurological storm. During a rage attack we may hit, kick, scream, swear, shout, throw or break things but we will often feel exceedingly guilty later on because we know that this is wrong, but we just cannot control it, the same as a neurotypical individual wouldn’t chose to have a rage attack / meltdown in front of their friends or co-workers. Some people may experience a rage attack without the anger, it may look the same as an anger associated rage attack but for a smaller portion of people it may be more similar to the tics as it can have a premonitory urge and be predominantly movement based.
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Rage attacks are not alleviated with punishment as they are not learnt behaviours so you cannot stop or prevent a rage attack through discipline. It’s also virtually impossible to reason with us when we are in the middle of one of these attacks as we completely lose control of our rational thinking and actions therefore cannot comprehend what someone is saying to us thus it will likely escalate the situation as we often become overly anxious and overwhelmed. After a rage attack, some of us can zone out whilst we calm down and may seem somewhat unresponsive, once we are completely calm, we need to be met with patience, empathy, compassion and support – not judgement, punishment or shame.
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We can sometimes learn to be responsible for the consequences of a rage attack by helping to repair anything we’ve broken or tidy up any mess we may have made as this can teach vital life skills, however a rage attack should never be disciplined as they are not behavioural and enforcing any kind of punishment for an involuntary symptom is likely to harm or mental health and cause us to feel shame for something that is completely out of our control.
Some people find that their rage attacks can have certain triggers, and eliminating these triggers can reduce the frequency of rage attacks.
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Common Rage attack triggers can include:
- Food dye sensitivity
- Certain dietary or environmental allergens / food sensitivities
- Anxiety and Stress
- Sensory overload
- Hidden infections (if undetected PANDAS / PANS present)
- Strong and distressing premonitory sensations
- Tic suppression
- Flight or fight response
- OCD rituals and tics not being fulfilled or completed correctly
- Phantom tics and sensory tics
- Underlying specific learning difficulties causing difficulties in school and leading to increased stress levels
- Rigid thinking
- Tiredness
- Neuro-inflammation (from some of the above triggers)
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Management for rage attacks can include avoiding triggers, anti-psychotic medication and certain types of therapy, just like with any symptom – different management strategies work for different people. The triggers for rage attacks are not likely to occur immediately before the onset of an attack therefore some people find it useful to keep a journal recording possible triggers such as diet, lighting, emotions etc to see if a pattern can be found, a trigger will usually present within 48 hours before a rage attack occurs , but some people’s rage attacks can be so frequent that it can be very difficult to find a trigger. Some people find that a person may ‘overreact’ to a simple situation and this may be put down as the trigger, however it’s likely that a combination of different factors could have accumulated over time and exploded by being set of by a small trigger, but it often goes deeper and can sometimes be linked to neuro-inflammation fuelled by ‘brain allergies’ which is where certain dietary or environmental allergens or food sensitivities can trigger a neurological response and this can also include a food dye sensitivity which is a relatively common trigger for rage attacks.
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How to support someone who is experiencing a rage attack:
1) Make sure that the individual is safe and that there is nobody nearby who could potentially get involved.
2) Remove any fragile or valuable possessions as things may get thrown or broken.
3) Remove any dangerous objects that could cause harm to the individual or others.
4) Do not speak to the individual, only intervene if they are in danger or putting someone else at risk
5) Ignore anything the individual says even if it’s deemed inappropriate, we cannot control what we say or do during a rage attack and we may become very impulsive, if someone tries to tell us off or discipline us, then it can add fuel to the fire and seriously escalate the situation.
6) If a rage attack happens in public, ensure that you are able to explain the situation to passers by in the most calm way possible and have information cards printed off if needed, so many neurodivergent individuals and parents are wrongly judged by the public who may just assume that its ‘bad behaviour’ when it’s actually a symptom and not within the individuals control.
7) Once a rage attack is over, leave the individual to calm down and then when they are ready, approach them with kindness, compassion and empathy as they have experienced great distress and need your support.
8) Seek professional help where necessary, if an emergency or crisis occurs or someone is hurt, then call the appropriate services as soon as possible.
9) Do not punish the individual, they likely know that this is 'inappropriate', but they can't control it.
10) Talk to the individual when in a calm state to see what they would like you to do when they are experiencing a rage attack as they know themselves best, although young children or people with certain conditions may have difficulty articulating it so be patient.
For some people, rage attacks may occur in the home environment more that in public settings. This doesn’t mean that there is anything wrong with the home setting, the discipline or the parenting; it’s actually because an individual feels safer at home and knows that they are less likely to be judged as these symptoms are not a choice but some people may suppress (consciously or sub-consciously) until they explode in a safer environment.