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Original poster

Tourettes, fucking hell.

46 replies

wombatsandaplant · 09/01/2021 18:12

I have Tourette’s and at the moment I’m ticcing nearly constantly. I have coprolalia (swearing) and every tic under the sun.

I’m just sick and tired of it. I’ve had it since I was 6 and I’m 25 now. I wish I could just have a break.

Ahhhh, fucking hell. Why is it so fucking awful.

I wish it stopped at 18 like so many people believe. But nope. Gonna be stuck with this forever.

I can’t do anything about it.

Sorry just needed a moan.

OP posts:
CormoranStrike · 09/01/2021 18:13

That’s sounds exhausting - how do the people around you react to your Tourette’s? Do they appreciate it is outwith your control?

Original poster
wombatsandaplant · 09/01/2021 18:27

My family are very understanding, but most of the public are less so. I’ve been threatened to be punched and all sorts before now. I hardly go out nowadays because of lockdown and stuff. Not really looking forward to going out places again.

OP posts:
Shaniac · 09/01/2021 18:50

How awful tourettes is. my best friend suffers it as well and yeah, strangers dont understand it at all. Shes had people troll her online and be rude to her in the streets. She also has coprolalia and other tics including her eye squeezing shut, throwing her head back aggressively every few seconds so shes on muscle relaxants that dont really help she also punches herself and has to use a sippy cup otherwise she throws her drinks over herself. Its such a tough life and shes had people actually tell her she needs to have her children taken off her because shes unfit to care for them! People can be utterly vile and there needs to be much better awareness of the condition. Sorry you are down op, its understandable do you have any support groups?

Rowgtfc72 · 09/01/2021 18:58

My bil was diagnosed with this at about 14. Fortunately I've only heard him swear once. He had a get out of jail free card at school if he needed time out and actually explained in an assembly what his problem was.
His tics are mainly noises and arm waving.
He went to my father in laws wedding not to long ago and sat silently on his hands the whole service. He came back today ours later and asked for 10 mins outside.
Dh went to check on him and said hes flapping his arms and hooting like an owl. I cant imagine what it took out of him to stay still and silent for half an hour.
Got to say by the third time of meeting him I stopped noticing.
Very misunderstood condition.

Souvlaki · 09/01/2021 19:02

I think it sounds exhausting too - very hard for you. People can be so ignorant
Unless they have any direct comparable experience.

Dowser · 09/01/2021 19:04

It seems to be one mysterious condition.
Does anything help to calm it down.
I wish I could be of more help, I’m sure you suffer greatly with having it.
Have there been any advances in research and treatment in say the last 20 years

Springersrock · 09/01/2021 19:14

I’m sorry OP Flowers

My daughter has Tourette’s and it’s awful. I wish I could take it on her behalf.

Her friends and school have been brilliant and very supportive but she too has had grief from mainly adult members of the public

She is quite sweary, and has horrible, what she calls tic-attacks’ where she’ll just tic constantly for hours, and she’s even knocked herself out punching herself repeatedly in the face.

We’ve had some small success with CBT and CBiT but to be honest, it just makes it worse when she’s at home, but she is a bit more confident going out as she knows she has the techniques as back up if she needs it

Also, weirdly, sour sweets have helped somewhat with the verbal tics

We have a laugh with the silly ones - we tried baking before Christmas 🙈 and I’m just there with hugs and tissues when she needs me, I don’t know what else to do to be honest

NiceGerbil · 09/01/2021 19:14

That sounds incredibly hard op you have my sympathy x

Shehasadiamondinthesky · 09/01/2021 19:17

My mother has it without the swearing, constant tics. She's never had any therapy or medication - she refuses.
I'm wondering if there is any medication that actually helps? Any ideas.

MoodyMarshall · 09/01/2021 19:19

Sympathy OP Thanks you sound like a lovely person and this is a tough condition.

DS1 has ASD and probably needs an ADHD diagnosis. He carousels through all the tics, bless him. We have a tic clinic near us, am thinking of paying for a consultation. I heard that CBD oil helps, is this true?

ScrapThatThen · 09/01/2021 19:22

So shit Flowers. And I hope there is ongoing research - actually I know of one trial, the Orbit one - but mental health and neurology in my area both seemed to have washed their hands of being responsible for any sort of care pathway.

elephantoverthehill · 09/01/2021 19:22

It's horrible OP. My Dd has started ticcing recently, it came on overnight. We are still trying to get referrals etc. She has found the sunflower lanyard a help when in public. She is also taking CBD gummies which seem to help. I am on a FB group called Tic Talks it's just good to share things sometimes. TBH I just don't know how people have the energy to keep ticcing. I am offering you a virtual hand hold.

MoodyMarshall · 09/01/2021 19:29

@elephantoverthehill Which CBD gummies does your DD take? I don't know which strength to get. Thanks!

Checkers271 · 09/01/2021 19:31

I'm really sorry you're having to deal with this. I've got crohns disease, obviously very different to tourettes but I totally understand the feeling of being thoroughly fed up with a chronic illness after dealing with it for so long. I was diagnosed when I was 16 and I'm now 40. My condition hasn't changed but my ability to cope with it has. My 20's were horrific and I had very dark times. In comparison my 30's have been fantastic. I met my DH, had my DS and really just learnt to not give a crap.

Hopefully as you get older you'll find the same true for you.

I work in theatres. One of the scrub nurses has tourettes. She's hugely respected, she's a lovely person and everyone looks straight past it. She tics through major surgeries, no one bats an eyelid.

Try and keep pushing through, it might not feel like there's any light at the end of the tunnel but there always is.

Original poster
wombatsandaplant · 09/01/2021 19:35

Thanks everyone.

shaniac the support group in person I’m in obviously hasn’t met for ages and won’t for sometime. It was running online but hasn’t for the past few months, with Christmas and all.

dowser not really tbh. I think there’s been some but nothing significant.

springersrock sweeties sometimes help but can be a bit of a choking risk, with all the head jerks lol.

diamonds there’s a few medications that can be taken with varying levels of success but I’m already on a high dose of one of them for something else and it does nothing. So it’s a bit hit and miss really.

moody some people say it helps but I don’t think it’s really proven but I could be wrong. I’m not entirely sure.

OP posts:
IncludeWomenInTheSequel · 09/01/2021 19:38

My DD takes CBD oil for her Tourette's (CONSTANT coprolalia!) and it's been an absolute miracle. She hasn't ticced for days now; still the odd shoulder/arm jerk but that's it.

I'm sorry you're struggling; it's broken my heart to hear my daughter fight her tics.

CatRamsey · 09/01/2021 19:43

Hi OP
I don't really have any advice but just wanted to pop onto the thread as I am the same age as you and also have tourettes. I absolutely hate that it makes me get treated differently, that actual adults chose not to engage with me because of my tics! And people staring! So depressing. I've had it since about aged 7 from what I can remember but as a kid always refused to go to the doctors. Doing my GCSEs I almost got a paper disqualified because the invidulator thought I was trying to communicate with someone to cheat! Wish I'd got more help for it in the past but I just deal with it now.

Separateatone · 09/01/2021 19:47

includewomeninthesequal that’s great news! What does she take and how much?

whoamongstus · 09/01/2021 19:48

I'm sorry OP, I've learned quite a lot about it recently from a brilliant young woman on Tiktok (@thistrippyhippie if you want to find her - she's not your daughter, is she @springersrock?) and I didn't realise how exhausting and upsetting it could be.

I actually have a friend with Tourettes, but his is - thankfully for him - very unobtrusive these days, but I like to think I would be kind and understanding if I met you or someone else with it in public.

IncludeWomenInTheSequel · 09/01/2021 19:51

I'll PM you @Separateatone Smile

elephantoverthehill · 09/01/2021 19:53

MoodyMarshall Dd takes 300mg 'Truth Naturals' CBD gummies. She has about 3 or 4 spaced out over the day. The Senco at school suggested them.

IncludeWomenInTheSequel · 09/01/2021 19:58

Actually I'm on the app so can't PM.

We use the green oil from CBDbrothers.com

10 drops morning and night. It tastes unbelievably awful: DD used to take it with a tiny bit of juice (and then you're supposed to hold it in your mouth for two minutes so it absorbs) but that got tough. Now we put the drops into vegan capsules and she just swallows them. It seems to work just as well.

Gummies didn't do a thing for her. But the oil changed her life after about 4 days. Now we've gone down to one capsule a day and it's still working as well. Like it's broken the habits somehow.

Cookiecrisps · 09/01/2021 20:03

I saw this documentary about a teacher with Tourette’s when it was aired on channel 5. It was really interesting to watch how the teacher coped with her Tourette’s and the responsibilities of teaching in a secondary school. She is an inspirational person. www.channel5.com/show/teacher-with-tourettes-cursing-in-the-classroom/

OP I hope strangers show you more kindness this week. 💐

Staffy1 · 09/01/2021 20:16

Have you heard of PANDAS, brought on from strep infections? Worth looking into, particularly if you noticed any improvements while on antibiotics for anything else.

Springersrock · 09/01/2021 20:41

We follow strippiehippie - no, she’s not my daughter.

There’s a couple of others she follows on tictok, plus Tourette’s Teacher

I’ve been looking into CBD oil as well, but there’s so many I don’t know where to start. Will have a look at the link.

We’re currently stuck in a cycle of paralysing tics - her hands, knees, back, etc completely lock - it’s horrible

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