Struggling to sleep has been an issue for as long as I can remember. Sometimes it’s intrusive thoughts and overthinking, sometimes sensory issues, sometimes tics. Here, I want to detail my experiences with Tourette and sleep.
Tourette Syndrome is well known to coincide with sleep problems, from repetitive tics, hyperactivity, night terrors and sleep walking. Some of these problems may be the result of co-occurring conditions such as ADHD.
As a child, I never slept easily. I had this urge to bite the carpet once I was in bed, or simply 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 in the night.
Some of these have to do with other conditions, such as OCD. It is hard to know which conditions are causing me the most problems. Even in my thirties I still have night terrors, occasional sleepwalking and sensory problems. Sensory problems often cause me to carry out tics, the slightest feeling of discomfort can cause an episode of tics that only disappear when I feel fully comfortable in a very specific position.
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.
It seems like it is caused by not finding that sweet spot in the pillow, but instead of burrowing my head until I find it, it manifests into a tic. I have this during the day but no where near as severe.
These tics have evolved over time, sometimes leg kicking. These can also be triggered by sensory issues, such as feeling like my legs are trapped or wrapped up in the sheets.
Sensory issues when in bed
Okay so this one is a little more embarrassing and traumatic for me. I have sensory problems when I am sleeping next to someone, especially if it is early in a relationship. I don’t want to scare them away with constant fidgeting and tics, which often only makes them worse.
But it isn’t only when trying to sleep. I was once dating a girl and I remember she came over to watch a movie with me. I remember 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 straightjacket the whole time and it was a horrible experience.
It felt like 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.
This increased my anxiety tenfold when it did come to sleep, and although I was a little more free to move later on, the stress it caused me no doubt affected my sleep.
Intrusive thoughts and anxiety
Many TS sufferers experience problems other than tics, often through OCD and anxiety.
Many nights would be spent by me sitting on the stairs of my home, secretly listening to my parents chatting downstairs because I was too scared to tell them I had intrusive thoughts. When I did tell them, they were supportive and stayed by my side with me until I slept, but it took many years before I could sleep alone. I still have these thoughts, but I’ve learned to live with them.
This would often be a fear of monsters or ghosts as a child, then intruders breaking in as a teen and adult. I just couldn’t shake off the fear of danger even when my family were in another room.
The anxiety would increase my tics, and again, affect my sleep. This is an example of how Tourette and sleep problems can overlap with a co-occurring condition, on this occasion OCD.
Night-terrors and sleepwalking
As far as I am aware, night terrors have been more of a problem in adulthood. When sleeping in hostels on my travels or next to a partner, I have been told that I often scream or plead for help some nights. This obviously embarrassing and also concerning because I cannot recall many of these nightmares, but no doubt it is affecting my body and mind unconsciously.
I may have had these in my teens also, but with no one sleeping by my side to hear it, it’s hard to tell.
Sometimes these dreams lead to sleepwalking. I am either told of my sleepwalking adventures the next day, but I have also been woken up during them. I am yet to understand whether this is more ADHD, night terrors or something else, but it is clear that problems associated with having TS are responsible, and therefore TS is accountable to a degree.
Understanding the root cause of the problems is key to improving sleep
I am still finding ways to improve my sleep, from diet and exercise, to reducing anxiety through therapy. What I know for sure is that Tourette and sleep problems are linked, although it can be tricky unravelling the condition to find what aspects of the condition- or other conditions- are causing the problems in the first place.
Because everyone with TS experiences the syndrome differently, it is important to get specialist help and speak about the specific ways in which it is affecting you. The good news is, it sleep can certainly be improved over time.