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.
DIAGNOSIS:
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?
YES
YES
YES
YES
YES
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
Lauren xx
As usual with my awareness posts I will be donating £5 to a charity which deals with each condition.