I have Tourette's.
And I just wanted to share my story in case anyone can relate or anyone is trying to get diagnosed.
It started with an unusual frequency of muscle spasms, and over weeks started becoming uncontrollable twitches of my legs now and then. Over months, it progressed from my leg jerking around to my arms too, and eventually my whole body occasionally going through these spasms that were almost like convulsions. I would thrash around uncontrollably, as though I was having a seizure, but I was fully awake and aware. I could stop them if I concentrated really hard, but not for long, and when I stopped, they’d be worse than before.
Obviously I started to get really scared about what was wrong with me, and I started going to a neurologist. I was getting sick in other ways as well, so I was already going to doctors a lot. (After a long time I was diagnosed with Lyme Disease.) My experience with the neurologist was extremely frustrating. She was very good, but because my condition was changing and progressing over time, she would say things like, “This isn’t what you were doing before.” I had a brain, cervical and thoracic MRI, with and without contrast, an EEG, and an EMG, which consisted of getting poked with needles and shocked with electricity. Everything came back fine, nothing unusual, and eventually she sent me to a movement disorder specialist, but I found out later that she put in my chart that my symptoms were “psychogenetic”. She thought I was faking.
Now, by this time my condition had progressed basically as much as it ever has, by which I mean that my twitches and spasms had progressed to facial tics and things like stomping my foot uncontrollably. I even finally came down with occasional vocal tics, meaning that now and then I’d make a noise - which for me was sort of like a barking/coughing sound. My face will twitch and my body will jerk in rather distinctive ways.
A while before my vocal tics showed up, my grandmother for some reason suggested I might have Tourette’s syndrome, which I had honestly never thought of before because I always thought that meant not being about to stop yourself from shouting rude things, as is the stereotype. My cousin has Tourette’s (though I’ve never spent much time around him), so it would make sense that there’s a genetic connection. (Although I should add that because I was over 20 at the time, it was pretty unusual for this sudden onset of symptoms, as Tourette’s usually presents in childhood and lessens over time. My theory is that my Lyme Disease somehow triggered it.) I started to hope that this was what I had, because up to this point I had been terrified that I had a very serious condition such as multiple sclerosis, something that would just get worse until I died.
Well, I went to the specialist, who was the head of the department at a really big hospital, and he pretty much immediately diagnosed me with Tourette’s. This was a HUGE relief as well as an incredible validation, because not only did have an answer, someone BELIEVED me. They even took some of my blood for testing and videotaped some of my more severe tics for research.
After that, things changed dramatically. SO MUCH stress came off of me with this annoying but basically harmless diagnosis, and if you don’t know, stress is a huge trigger for tics. My symptoms nosedived by probably 80% almost overnight, so much so that I didn’t even need to be put on medication. I’ve learned what causes my tics, and how to deal with them so that they inconvenience and embarrass me as little as possible.
For instance, I’ve figured out that I can suppress my tics with some concentration, which is very useful when I’m in public. Sometimes when I close my eyes and focus on relaxing, I can make the urge go away completely. I’ve also learned that, funnily enough, I can ‘channel’ the way my tics come out most of the time. For instance, I can tic in the form of my nose scrunching or my fingers flicking until the need is gone. That’s a lot less draining and intrusive than flailing around. I do sometimes do things without any control over them, though - stomp my foot, jerk my shoulders, sniff repeatedly, make a sound, twitch my eye, etc.
Stress and fatigue are my biggest triggers. I tic a lot more when I haven’t had enough sleep, and if you bring up a traumatic topic I’ll immediately start spasming. I’m also chemically sensitive, so exposure to something like perfume or cleaning products will get me going. I take Effexor (venlafaxine), which has a dopamine-raising effect, and that helps.
It really doesn’t bother me that much anymore, because all my friends know about it and I can usually hide it from strangers, and it isn’t that bad, really. For months I was tortured with thoughts of MS or something horrible, so in a way I’m grateful to have Tourette’s and not something worse.
Anyway, I wanted to write this so anyone who reads it can have a better understanding of this condition for any instance where they run into someone who is making strange movements or sounds. Just remember that they can’t help it! And when people are watching you tic, you get stressed out and start ticcing more.
I also wrote this in the hopes that anyone who is trying to diagnose themselves can gain a little insight! Feel free to message me if you have questions.