Tourette Syndrome is known to clash with sleep.
In one sleep study of 25 individuals with Tourette, the results found significant sleep disturbances. Sleep just isn’t that simple for those of us with TS.
Tics, hyperactivity, night terrors, sensory issues… the list can seem as big as the night is long. Co-occurring conditions can also be to blame for restlessness.
But back that study.
In the paper Decreased sleep quality and increased sleep related movements in patients with Tourette’s syndrome (1), 25 patients were studied by polysomnography (recording body movements during sleep) and video monitoring.
A quote from the result:
Sleep was significantly more disturbed in patients with Tourette's syndrome than in controls, with decreased sleep efficiency and slow wave sleep percentage, increased sleep latency, percentage of stage I, percentage of awakeness, number of awakenings, and sleep stage changes and more overall movements during sleep.
In conclusion, those with Tourette experience markedly disturbed sleep.
Sleep has never been easy for me.
I had this urge to bite the carpet once I was in bed, and touch the floor with my fingers. I also had the urge to switch the light on and off until ‘I did it right‘, and had many intrusive thoughts about people or things attacking me.
Here are some ways that I- and many others with TS- find sleeping almost impossible some nights.
Tics when trying to sleep
As soon as my head hits the pillow, I get this head nodding tic that makes me move my head up and down. I wouldn’t be surprised if I do 50-100 of these a night before I am tired enough to sleep.
That sweet-spot in the pillow is non-existent. When I burrow my head to try and find it, it manifests into a tic.
These tics have evolved over time, sometimes into leg kicking. They can be triggered by sensory issues, such as feeling like my legs are trapped or wrapped up in the sheets.
Sensory issues when in bed
I have sensory problems when I am sleeping next to someone. I try my hardest to not fidget, this only makes it harder.
I can only compare it to trying to get a good nights sleep in Times Square. Sensory overload is everywhere.
It isn’t only when trying to sleep. I remember dating a girl and she came over to watch a movie with me. Throughout the whole movie my body was screaming to move around, but we were cuddling so I couldn’t.
It felt like I was in a straight-jacket the whole time. A horrible experience. It was the last time I saw her.
Every spring on the sofa was digging into my body, every area of my skin felt like it was on fire. I constantly needed to itch. I started to sweat, my heart-rate increased.
Every minute felt like an hour and this normal-length movie felt like a LOTR marathon.
Intrusive thoughts and anxiety
As a child I would spend many nights sitting on the stairs of my home, wanting to go downstairs but too afraid to tell my parents I wasn’t sleeping.
They were very supportive parents, but I didn’t know how to tell them I had intrusive thoughts. I thought these were normal, and I was just weak.
This was a fear of monsters and ghosts, then intruders breaking in as a teen and adult.
In a 2022 study (2), it was found that:
comorbid anxiety was associated with the highest risk of sleep disorders, followed by ADHD'
This will be very relatable to children going through this experience, and hopefully answers questions from parents witnessing such behaviours.
Anxiety disorders can co-occur with Tourette, including OCD. Sometimes complex tics and compulsions can be difficult to tell apart.
Night terrors and sleepwalking
These have both been a problem for me. I have had feedback from family, flatmates and partners that I sleepwalk, and even scream or cry some nights. I do not recall many of these instances at all.
Again, studies reflect this.
This 2022 article talks about the correlation between TS and night terrors.
Sleep terrors (night terrors) are characterized by sudden scream from sleep usually during slow wave sleep, with signs of autonomic arousal. Like in sleepwalking, there is dissociation and patients are not aware of the surroundings and do not recall of the event. Although the evidence is similarly not robust, Comings et al. also showed that 15.8%–49% of patients with TD had night terrors, and was higher than that found in controls.
May people with Tourette experience night terrors.
The term ‘parasomnia‘ is used in the article. ScienceDirect describes Parasomnias as the following:
‘Parasomnias are unpleasant experiential or undesirable behavioral phenomena that occur during entry into sleep, during any stage of nonrapid eye movement (NREM) or rapid eye movement (REM) sleep, or on termination of sleep.’
This explains many individuals with a tic-disorder having disrupted sleep involving nightmares, screams and sleepwalking.
Understanding the root cause of the problems is key to improving sleep
Personally I am still finding ways to improve my sleep, from diet and exercise, to reducing anxiety through therapy.
I now know that Tourette and sleep problems are linked, although it can be tricky unravelling the condition to find what aspects of it are causing the problems in the first place.
Everyone with TS experiences the syndrome differently.
It is important to get specialist help on the specific ways it affects you personally. The good news is that sleep can certainly be improved over time.
Sources:
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Decreased sleep quality and increased sleep related movements in patients with Tourette’s syndrome
- Blaty JL, DelRosso LM. Tourette disorder and sleep. Biomed J. 2022 Apr;45(2):240-249. doi: 10.1016/j.bj.2022.01.002. Epub 2022 Jan 12. PMID: 35031507; PMCID: PMC9250095.
- Justin L. Blaty, Lourdes M. DelRosso, Tourette disorder and sleep, Biomedical Journal, Volume 45, Issue 2, 2022, Pages 240-249, ISSN 2319-4170, https://doi.org/10.1016/j.bj.2022.01.002