Last time, we discussed what Tourette’s Syndrome really is, from an insider perspective. If you missed that article, please click here to read it.
I was diagnosed with Tourette’s Syndrome when I was 7 years old, although symptoms started years earlier. This was 1990. Back then, no one told me what Tourette’s really was. No one told me whether there was anything I could do for it. And no one told me what had caused it. Now, as I write this, it’s 2017 and ideas about the causes and triggers of Tourette’s abound – although we still don’t know anything definitively. After 27 years, all we have are theories, and this week I’m going to share some of those theories with you.
Damage to the Basal Ganglia
When we hear the words ‘brain damage’, they sound extreme. But the truth is, there are many ways the brain can be damaged. One is by injury or infection travelling up the brain stem, to the basal ganglia. This is a group of brain cells responsible for regulating physical movement. The basal ganglia are also thought to affect things like decision-making; it is theorised that when someone has Tourette’s, their decision-making ability is impaired. There is an urge to tic, and the brain is unable to resist that urge. The hole in this theory is that no one yet knows what causes this damage.
Too Much Dopamine
It is also thought that people with Tourette’s may have naturally excessive levels of dopamine, a neurotransmitter (chemical messenger) linked to things like motivation, desire, action. Alternatively, people with Tourette’s may just be more sensitive to the effects of dopamine. As yet, we don’t know. However, it has been demonstrated, through the use of prescription medications, that reducing dopamine levels can alleviate symptoms of Tourette’s.
The trouble is that, for many people (like me), over time the brain rebalances its chemical levels by producing more natural dopamine, counteracting the effects of the medication. Moreover, there are side effects. By reducing your natural dopamine levels, you are also reducing levels of motivation, desire, will. In fact, too little dopamine can make you catatonic (as shown in Oliver Sacks’ ground-breaking book Awakenings). We will discuss this more in a future article about treating Tourette’s Syndrome, but the point here is that dopamine does appear to play a key role in this strange condition.
Studies over the last few decades have shown that Tourette’s can run in families – although there is no guarantee that if you have Tourette’s, your children will inherit it. Perhaps the gene lies dormant, passed down from generation to generation until some (again unknown) trigger ‘wakes it up’.
I personally think Tourette’s is not one distinct condition but one of several potential manifestations of a serotonin / dopamine imbalance; and that perhaps it is that basic imbalance that is genetic, rather than Tourette’s specifically. What I mean is: in my family, on both sides, you find epilepsy, autism, anxiety, OCD, depression, bipolar disorder, schizophrenia, ADHD and tics. I am the only one going back several generations to have Tourette’s Syndrome – but all these conditions share certain traits and are linked to the same theoretical causes. They are all affected by the same types of drugs. I can only conclude that I inherited my condition through my bloodline, even if no one else had Tourette’s specifically.
Where did the gene (or genes) come from, in the first place? Perhaps a mutation – a mutation that could potentially happen in any family, at any time. Again, we just don’t know, at this stage.
No, we don’t get Tourette’s from cute black and white bears in China. PANDAS is an acronym for ‘paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections’ (try saying that five times fast!). This refers to a batch of conditions such as Tourette’s and OCD, the symptoms of which often occur following an infection by streptococcal bacteria – a kind of sinus infection, basically.
I find this theory particularly interesting because when I was a toddler, I suffered seizures caused by very high fevers. Later, when I was around 4, I had a sinus infection that, in my memory, lasted all year. My childish mind probably distorted the timeframe, but I recall taking pink bubble gum-flavoured liquid medicine for quite a while…and then finding myself unable to stop snorting away imaginary mucus from my nose, despite the illness having been cured. Around this time, I also decided I had to walk starting with my left foot and ending on my right; if I had to stop on my left foot, I ‘had to’ stamp my right foot over and over until something clicked in my brain. I also had a huge fight with my mother when she threw out my ever-growing collection of cardboard toilet paper tubes – something I confess I held in my heart for years, until I recently had to tell my own son to throw out the same sort of collection before his bedroom became a rubbish heap.
It’s quite common for people’s first tics to be some form of snorting, sniffing or coughing, because it’s common for them to develop after a sinus problem. It’s also common for children to find relief from their symptoms after having their tonsils removed – although this doesn’t work for everyone. Still, it works for enough people to raise curiosity about the nature of Tourette’s.
Stress and Hormone Imbalances
It’s well-established that prolonged stress leads to poor physical health. This also applies to Tourette’s Syndrome. When I say stress, I mean anything from lack of sleep to emotional distress. To give a personal example, I recently had a baby – my second child – and I had a traumatic post-delivery experience that left me with flashbacks and months of physical recuperation. This was not helped by literally an hour of sleep a day, with a new-born baby. During this time, my tics went wild, damaging ligaments and leaving me unable to use my left arm, in addition to intense headaches and other pains I couldn’t treat because I was breastfeeding and could not take strong medicine.
What is most fascinating to me is that when I was pregnant, my tics hardly affected me; I almost forgot I had Tourette’s. I am not a scientist, but I have read in several books that high oestrogen is linked with high dopamine, and in pregnancy oestrogen levels are through the roof. My reduction in symptoms seems to contradict the theory about high dopamine causing tics – just one more mystery confounding all ideas about where this condition comes from.
It’s also worth mentioning that when I was child/adolescent, my mother always noticed my tics got worse when I went through a growth spurt, and they were particularly bad just before puberty. Now that my eldest son is 11 years old and has his own Tourette’s diagnosis, I see this happening to him, too. I can only conclude it is due to the extreme hormonal fluctuations in this phase of life. I suppose the note of hope to take from this is: it should settle down when he’s an adult and the hormones calm down. At least he’s not a girl, or he would have to deal with fluctuations most of his life.
On this note, I would add that many people swear that changes in diet can alleviate symptoms. This again suggests a physical base to the condition, perhaps hormonal, but these dietary changes – or even vitamin regimes – do not affect everyone.
Does Anyone REALLY Know What Causes Tourette’s?
The short answer is: NO. No theory is definitive; there are always exceptions and contradictions. However, research is always being done, particularly into the Tourette’s gene. I personally worry about scientists ever finding such a gene, because it might lead to things like screening processes for expectant mothers. Don’t get me wrong: I hate having Tourette’s. By now, I usually take it for granted that I have it; but some days, it hits me that it’s real and it’s painful (sometimes crippling) and I can never get rid of it. Those are not good days. Even so, my own experience with medications, as well as stories shared by brave souls either in books or online, has taught me that you can’t treat Tourette’s without affecting other things like emotions, spirit, creativity – personality. If we got rid of Tourette’s, what else would we be getting rid of?
That’s an important subject for another day, but my point is that the causes of Tourette’s may also be the root of other more positive attributes that we don’t want to suppress. So for me, I’m not so sure the causes are that important. Tourette’s is here now – so what are we going to do about it? How are we to live with it? We’ll find out in the next few articles, when we explore the possible treatments for Tourette’s – both medical and alternative – as well as whether some of these treatments are really worth it, when we consider the costs. Be sure to subscribe to this blog to make sure you don’t miss out. Also, if you feel someone else would benefit from reading this week’s article, please feel free to share it.
Finally, if you’d like to read a detailed depiction of what Tourette’s is really like to live with, please read my short story The Passenger, available on Amazon Kindle and the Kindle phone/tablet app. US Readers UK Readers
Until next time….
Vrinda Pendred is a graduate of English with Creative Writing at Brunel University. She completed work experience with Random House and proofread for Mandala Publishing. She is married with two children and lives in Hertfordshire, England, where she does freelance editing and proofreading. She is also a writer, and you can learn more about her personal work here.
Vrinda has five neurological conditions: Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, High-Functioning Autism and bipolar disorder. In 2010, she founded Conditional Publications with the intention of providing a creative outlet for people, and (hopefully) changing a few minds out there about what neurological disorders really are – including not just the limitations, pain or frustration, but also the more positive, beneficial ‘symptoms’ of these strange conditions.
She made three contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD. Since then, she has released a novel entitled The Ladder, inspired by her personal struggle with bipolar disorder, as well as a number of short stories, and a YA sci-fi /fantasy series called The Wisdom, all available for purchase from Amazon.