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I have Tourette's Syndrome AMA

23 replies

Elephantgrey · 20/07/2018 08:22

I think there are a lot of misunderstandings about Tourette's. I will try to answer all questions.

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MrsMisstery · 20/07/2018 08:28

When did you develop it (what age) and was there a trigger?

PrincessPear · 20/07/2018 08:30

Do you work and if so, how does it affect it?

Elephantgrey · 20/07/2018 08:53

MrsMisstery I think I have always had it. It's just part of the way I am. There is a lot of evidence that Tourette's syndrome is genetic. It took a while to realise that some of the things I do are tics.
There are some people who suddenly develope Tourette's syndrome often after a traumatic event but a lot of them have always had tics they were just less noticeable.

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Elephantgrey · 20/07/2018 09:04

I do work but I am on maternity leave at the moment. In my current job it doesn't affect me too much. A lot of people don't notice. When I am concentrating on things my tics are a lot less prominent. Oliver Sachs wrote about a surgeon with Tourette's who did not have tics when he did surgery. This doesn't surprise me because when you are focused on something you don't have enough space in your brain for anything else (I am not a surgeonGrin).
If you saw me on a station platform or waiting for a bus you would definitely know that I have Tourette's it is weird like that.

I did affect me in previos jobs and it was one of the main reasons I stopped being a primary teacher. I found it too hard to suppress my tics. I was fine when I was in the classroom but things like assembly was really hard. I loved working with the kids but the school environment was not right for me.

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IsTheRainEverComingBack · 20/07/2018 09:06

Do you have vocal tics?

Do you also have OCD? (Common co-morbidity with Tourette’s)

ShakingInTheHighCourt · 20/07/2018 09:20

Has it affected your ability to form relationships and friendships? Have you suffered any discrimination because of your condition?

Congratulations on your baby!

PrincessPear · 20/07/2018 09:21

Elephant I have ADHD so I understand that. People don’t understand how sometimes I can focus completely on a book and stuff, but some things are immersive and block it out. It’s hard to explain.

Elephantgrey · 20/07/2018 09:40

I do have vocal tics. As you probably know( it sounds like you know about Tourette's). To be diagnosed with Tourette's you needs to have regular physical and phonic / verbal tics.

I do have quite a few verbal tics I will suddenly find myself saying something totally random like I want toast which I didn't expect to say. I taught myself to turn some of these Radom outbursts into something that makes sense in the context but don't always manage. I don't have random tics in the middle of a sentence as some people do. I don't have corprolalia (swearing tics) either; only about 10% of people with Tourette's do.
Not everyone with Tourette's has verbal tics some people only have phonic tics like coughing but won't actually say anything.

I was diagnosed with perinatal OCD. I worried that something bad would happen to my baby. There is definitely an overlap as it is sometimes quite hard to distinguish between a tic and a compulsion. I often think of the worst possible thing I could say in that moment and feel compelled to say it. Fortunately I am able to surpress this but I often have to leave the room.I can't walk past a drain without feeling the urge to dro my phone down it. I don't think that normally a diagnosis of OCD is a good fit for me.

I have ADHD with is also linked to Tourette's and that is more like me. I am totally scatty.

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PrincessPear · 20/07/2018 09:51

I was diagnosed with perinatal OCD. I worried that something bad would happen to my baby. There is definitely an overlap as it is sometimes quite hard to distinguish between a tic and a compulsion. I often think of the worst possible thing I could say in that moment and feel compelled to say it. Fortunately I am able to surpress this but I often have to leave the room.I can't walk past a drain without feeling the urge to dro my phone down it. I don't think that normally a diagnosis of OCD is a good fit for me.

I have OCD too, and it gets worse when I’m pregnant. I think our brains are wired in a way that makes us susceptible to anxiety problems.

MrsJayy · 20/07/2018 09:54

Does it hurt? I was watching a programme about a guy with tourettes and his tics looked painful

MrsJayy · 20/07/2018 09:55

Sorry this guy was trying to controlhis tics in public and they came out anyway and I just thought god that looks painful

SherlocksDeerstalker · 20/07/2018 09:56

What age did you become aware of your tics being more than normal developmental things? I ask because my daughter is 7 and tics like crazy! Hers are mostly physical, although she has a couple of verbal that come and go (mostly sniffs and coughs but sometimes humming) she has seen a specialist who isn’t concerned but I still have a niggle... hers started age 5 seemingly out of nowhere.

Elephantgrey · 20/07/2018 10:01

Shakininthehighcourt it has definitely affected my ability to form friendships. As you can imagine I did not have a great time at school. One of my tics is screwing my face up like I am disgusted which means people think I am disgusted with them when it is just a random face I pull. I think the relationships I do have are stronger as it is with people who can see past it. I do have social anxiety which is a rational response to having Tourette's.

I think I have experienced discrimination definitely at school as my primary school tried to send me to a special school for people with moderate learning disabilities. I now have a PhD. If I apply for a job I don't put it on the application form as I have never got an interview if I have. I am lucky that it affects me in a more subtle way.

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Elephantgrey · 20/07/2018 10:08

MrsJayy physical tics can be painful. My most upsetting tic / compulsion is holding my breath. I have a hand squeezing tic and I have claouses on my knuckles and have on occasion taken the skin of my hands because I did it so much.

Most tics are not painful. Some I actually quite enjoy if I can do them without it being too inappropriate.

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Elephantgrey · 20/07/2018 10:12

PrincessPear I am definitely an immersive reader. I love to read books in one sitting when the last Harry Potter book came out I didn't speak to anyone until I had finished it.
I don't think I had OCD until I was pregnant. It is interesting that you became more anxious to as pregnancy definitely changes the way you think. I was obsessed with risks to my baby and he is absolutely fine now.

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PrincessPear · 20/07/2018 10:13

I did that! I read it solidly for hours lmao!

Yes I am the same, I get preoccupied with risks and start becoming obsessive. My son was fine. I’m pregnant again but due to some previous complications and severe sickness the anxiety is back. Angry

glitterbiscuits · 20/07/2018 10:21

What's it like for your partner? I think Tourette's looks exhausting. For the person and their family. I hate it when my DH has a cold and I'm listening to sniffing and coughing. That is bad enough.
Do you worry your child will have it?
Can hypnosis help?

Elephantgrey · 20/07/2018 10:23

Sherlock I first realised that I was different when I started primary school. This was based on other people's reactions to me.

Your daughter sounds like she does have Tourette's if she has regular physical and phonic tics. I think the issue is does this have a negative impact on her life. Can she do her daily activities, do other people accept her does it bother her or interfere with her learning? If this is the case then I would be concerned.

1% of the population have Tourette's and most of them don't know and wouldn't feel the need to get diagnosed. I was listening to Matt Smith on Desert Islad Disks and he said that when he was a child he was different and had a lot of odd habits which sounded to me very much like Tourette's but everyone accepted him so he was fine.
How does your daughter feel about her habits?

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Dadsbigsausages · 20/07/2018 10:31

Hi, my son has a motor tics and one phonetic tic, he's 6 now and had these for two years. We see the consultant every 6 months for review and he always says "do you want me to write it".

I feel I'm afraid of the word. Tourette's.

He gave me the information about Tourette's syndrome but for now we don't have it as an official diagnosis. At the time it began my son had just been diagnosed as HF Autistic and selfishly I couldn't cope with that other word in his notes then.

Now, his tics change and sometimes are terrible so he can't hold a pencil and other times barely noticeable. Can you tell me if this is typical of the condition? Sometimes I think it's going away...but there's always 2 or 3 tics...and they are worst when he's not immersed in an activity. School holidays are gruelling.

Are the teenage years the benchmark people say as to if it stays by puberty its staying for good?

Elephantgrey · 20/07/2018 10:34

glitterbiscuits I love your username. I also have biscuit related ticsGrin. I am sure that I annoy my husband. He probably has developed the ability to filter much of it out in the way people stop noticing the cars that come past the house. He does get upset when I have a tic attack. That is when I have one tic after another when I am upset. When I was pregnant I had one in the shower and he came in and held my hands to stop me squeezing them and I calmed down.

Sometimes when we are in public he must want to say I'm not with her but he doesn't.

I do worry that my child would have it . The idea of anyone rejecting him breaks my heat. If he has it I will understand and be able to help him cope. I started to watch a program about children with Tourette's one of the mum's seemed so ashamed of her son I had to switch it off because it was upsetting me. If he does have it that doesn't mean he would be severely affected.

I have never tried hypnosis.

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Dadsbigsausages · 20/07/2018 10:38

Oh that's terribly sad I could never be ashamed of my son! He knows his body does these things we just say tics are something your body has to do. It's not a bad thing but it's something we can help (he was too small for cbt but that will be in a year or two)

Positive touch when he's in a complicated tic routine helps, if I place my hand on his shoulder it can bring him out of it. Sound like your husband holding your hand helps too.

Oddly, my son tics in his sleep but never ever in water. He's a fantastic swimmer because we encourage time in water.

Elephantgrey · 20/07/2018 10:47

Dadsbigsausages I know what you mean about fear of the word as people's reaction when you say have have tics to I have Tourette's are very different even though it is the same thing. If you have noticeable tic calling it Tourette's can help people be more understanding.
From what I know of Tourette's it is quite typical to have some times when you are severely affected and some times when you are better. Is there a pattern to the severe times?

I think if you have Tourette's you always have some tics but they don't always impact on you. There are a lot of people who have developed better coping stategies as they get older. I read about research which looked at people who thought they had stopped having tics. It turned out that they did still have some but they didn't notice them and they didn't have a impact on their lives.
Does your son like music? That can help a lot of people with Tourette's. There is a guy who helped himself to control his tics by playing the drums. If focus helps your son help him find something he is interested in to focus on.

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glitterbiscuits · 20/07/2018 11:58

Thanks for your reply. I find it really interesting. I have a Facebook forend ive never met but we were in a group and hit it off virtually. She has anxiety but her daughter has Tourettes. she's 10.
I really want to suggest hypnosis. I'm not sure if it's ever been a tried with Tourette's but I can see a link. If a hypnotist can put people off certain foods etc....I'm thinking aloud.

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