MAY 15th – JUNE 15th is Tourettes Syndrome Awareness Month.
I have a diagnosis of late onset TS.
WHAT HAPPENED? For the weeks leading up to when my tics became apparent I was speaking very fast. I literally would not stop talking- I didn’t think too much of it.
My tics suddenly became obvious to me in the middle of the night in February last year. They are mainly vocal but I have some motor ones too. I didn’t sleep for about two weeks as my tics were waking me up. (unheard of for me as I sleep alot!) My GP was a numpty and thought it was some kind of sleep deprivation and gave me 7 days worth of diazepam. This knocked me out for a bit and messed with my ME- my dad came to collect me from uni and I have no recollection of how long I went before I went home, packing anything, the journey home all the way until April when I went to Morocco with my mum and sister.
I initially had a 4 day tic attack with next to no sleep. My housemates called an ambulance on the 2nd day as it got a little scary. The paramedics were fab and thought it was funny- the consultants in A&E at 4am presumed I was drunk or on drugs and couldn’t wait to get rid of me. My tics were on and off for about a month then went for two weeks and came back and never left.
MY FIRST EVER TIC? ‘Wookeeeyyy doookkeeeyy’- as an 18 year old girl at University to be constantly saying this phrase on repeat was a little odd.
THE CAUSE? At 14 I was put on medication for Panic Disorder, it was AMAZING! (flupentixol for anyone whose interested)- well… it is thought that the antipsychotic I was on, may have contributed to the later onset of my Tourettes. It wasn’t until two months after I stopped the medication that my tics suddenly became very apparent. My Neurologist is under the impression that the medication acted as a suppressant and my tics did not come out at the usual age of teens as I was taking a ‘suppressant’ for my panic. Makes sense to me.
After speaking with medical professionals, It is likely my tics have always been present just mildy. I had tics such as a nose squint and eye twitch I had when I was very young and was given glasses for. I have always been a hair twiddler, maybe this was a tic.
When my tics started I didn’t know what was a tic or what was me speaking- I started to panic and couldn’t really find my reality. It was petrifying. My housemates were incredible. Again. I have little recollection but I know I had everyone around me to stay with me on shifts, watch me go to the loo, sleep in my room with me and let me know everything I was saying. It was really traumatic! I felt as though the tics were coming out other peoples mouths but in my head. I was worried it was some kind of mental health crisis but the hospital weren’t. I knew I wasn’t hallucinating as I was very much able to hold a conversation and could not see visions or hear voices etc- I was worried, my mental health had been really good. I went to a private psychiatrist and he confirmed he didn’t think it was any worrying mental health issue.
I went to the Neurologist in about June/ July time as my tics hadn’t subsided- usually a diagnosis of Tourettes Syndrome needs:
- Motor and Vocal Tics
- Tics before the age of 18 / childhood tics
- Tics lasting longer than a year
- Complex tics
My Neurologist was confident in diagnosing me without meeting all this criteria due to the medication potentially suppressing – being only 18 (the border for tics) and the fact that my tics were very complex.
So there we have my tourettes diagnosis.
Where am I now? I am about 16 months into having Tourettes to my knowledge and it has drastically changed my life. I still haven’t seen a specialist as people like to ‘lose referrals 4 times’ (NOT ANNOYED AT ALL HERE!?!?!)
My tics can be very intense in what I like to call a ‘tourettes attack’ or ‘tic attack’ and other days more calm with only one or two all day. I struggle to communicate greatly on days my tics are bad whilst others I can advocate for myself well.
Environment, fatigue, stresses and people all play a major role into how my tics present.
QUICK NOTES ABOUT MY LATE ONSET OF TS:
- My preconceptions of stereotypical Tourettes were false. I suffer from pain particularly in my neck and fatigue caused by my tics. The pain was originally unbearable but with time I think my body has become used to it.
- I don’t have Coprolalia (swearing) it only affects 10- 15% of ticcers.
- I have rather a cute ‘baby voice’ vocal tic!
- My tics are not my thoughts, however they are usually stimulated by something.
- I don’t know what I’m about to say as a vocal tic or do as a motor tic but I have a rough idea- for example I know I’m about to insult someone or I know I’m going to tic about XYZ or throw whatever is near me- I just don’t know the specifics.
- My anxiety has improved. People are looking at me the majority of the time with TS- particularly strangers- I had to get used to this pretty fast otherwise panic + tourettes = mess!
- My OCD has sky rocketed (86% of people with TS have OCD, ADHD, ADD, Autism or an anxiety disorder too).
- My TS diagnosis was not the end of my life, I simply had to make some adaptions and do a lot of explaining to friends and family.
- Seeing people I haven’t seen in a while- this is the hardest.
- Most people have ‘a tic’
IF I HAD THE OPTION OF GETTING RID OF MY TOURETTES WOULD I?
As someone who is newly diagnosed strangely my answer seemed to be alot different to others I asked. Most people said ‘no’ or ‘sometimes, if I was having a bad day.’
SO.. this is me!
Life with Lorenzo is never predictable– I try not to have the ‘woe is me’ ‘only me’ outlook on life but I mean really… Random Tourettes out the blue…
You couldn’t write this s***!
Take whatever life throws at you and keep on smiling
LOTS OF LOVE
As usual with my awareness posts I will be donating £5 to a charity which deals with each condition.