Monday, April 24, 2023

My Journey With Tourette's Syndrome...

I was diagnosed w/ Tourette's Syndrome when I was 10yrs old. Growing up as a kid in elementary school I didn't really notice my tics. Though there was one distinct memory I have as a kid growing up in 5th grade at school in gym glass when a girl (who was a popular girl) asked why I was rolling my eyes. I remember feeling embarrassed during that moment. Fast forward to Middle School when my TS became very severe. Throughout all years of Middle School my TS was awful. But specifically in the 7th grade my TS got extremely severe. I developed tics where I would swallow and "gulp" air which would cause me severe GI issues. I must've went to the nurse's office 3-4x a week. I would go home sick about 2-3 days a week. It got so bad to where I eventually had to leave school for 4-5 months and we had to have a provided-tutor come to my house to teach me. During these years I developed the classic/typical "tics"– eye rolling, neck/shoulder shrugging, head moving/jolting, arm flailing–and also phonic tics, which are vocal tics. My vocal tics were awful. Screeching, screaming, grunting, coughing, throat clearing, and the worst thing... Coprolalia. Which for those of you who don't know, Coprolalia is "the medical term used to describe one of the most puzzling and socially stigmatizing symptoms of Tourette Syndrome—the involuntary outburst of obscene words or socially inappropriate and derogatory remarks. Other examples may include references to genitals, excrement and sexual acts".

Over the years my tics have changed, they've waxed and waned... Over my teen years my tics remained moderately severe-to-severe. They never really let up. Most people with TS tend to grow out of it by their late teens and early-20's. But not me. I still have TS. My TS is actually very severe. It's just very well controlled with my DBS and my Haloperidol medication that I take daily. I also am an EXPERT at holding in my tics (I've had a lot of practice over the years in school and in college)–so not many people that meet me know or find out that I have TS until I reveal my diagnosis to them. 

Overall, my battle with TS has made me a strong person. Growing up with TS was not easy. There was lots of bullying, embarrassing moments, crying, devastation, sleepless nights... Many of my tics over the years have caused me physical pain and discomfort. TS is not fun. Never would I wish my worst enemy to have TS. It's such a bizarre feeling–not being able to have full control over your body's movements and its sounds.

I'm very glad that my DBS procedure has seemed to help my TS symptoms very much! It's nice having relief from not only my OCD but also my TS, too. For those of you who don't know... DBS can and is also performed for Tourette's Syndrome. Yet, rarely ever. Only a few cases of DBS for Tourette's have been performed worldwide. From the study results I've poured over it seems to be moderately effective at treating it. It would be interesting to see what the future brings in terms of studies and research/clinical data in regard to DBS for TS and its effectiveness. 

Anyways... Thanks to you all for reading and following my journey!

Keep those prayers coming and good vibes sent my way for my journey with defeating my OCD/Anxiety/Panic Disorder/Depression/TS, etc...

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