Anyone else have a tic disorder or Tourette Syndrome?

[xudo]

I'm being referred to a St George's Hospital in London; they run the country's biggest tic clinic. I've seen a lot of psychiatrists in the past few years and a lot of them say different things but roughly along the same lines. I'm hoping for this I'll at least get a definitive answer from this at least.

I'm sort of able to control my tics subconsciously, I can substitute vocal tics for motor ones. But I don't know how to stop doing them for a time, like, make a concious effort to do so. If that makes sense. If they can help me learn to suppress my tics then that would be amazing.

I wish you all the best! My motor tics are particularly bad at the moment, but the vocal tics aren't bad at all which usually means it's going to change to something else (throat clearing at the moment).

I would love to get another opinion and get a less vague diagnosis.

 

[Southern Discomfort]

Thanks guys. It's not been too easy lately. I woke up last week at 5 in the morning from ticcing in my sleep, I just couldn't stop moving. So I did the only thing I know that helps calm tics as bad as these; play computer games. Half an hour later I was able to go back to sleep fine.

I'm also getting new tics all the time. The most recent one was two days ago, I watched a video and someone in it sneezed, I immediately copied it and so I have a tic that's sort of evolved from an old one. I've also got a sort of playful growling tic, another one where I go "blargh" with my tongue out. And I have the common clicking one I make with my tongue that sounds like when you click your fingers. Amongst lots of old ones.

It also sounds like I'm going a full diagnosis of my tics and they'll look into other very comorbid conditions like OCD and ADHD - my brother has the latter. I've never thought of myself as having ADHD, if I were to have something like that then I would guess it would be more like ADD; I always did the bare minimum of work in school, as young as 4-5 I was having that written down in school reports. I left homework to the last minute, I have a crap attention to detail and I make stupid mistakes all the time. I'm not too good at following instructions - although I must say I have a pretty good memory for stuff. So that could be interesting.

 

[xudo]

So I did the only thing I know that helps calm tics as bad as these; play computer games.

This works for me too!

 

[Chance]

I have Tourette's, it's pretty embarrassing at times.
Mine usually shows up when I'm tired. For instance last weekend we ran a load of relief supplies to people affected by hurricane Harvey. It affected lots of my family and friends and I just wanted to help and see what it did.

We were exhausted. I was stressed, tired, upset, wanting to go get away from too many people and all the sensory overload taking place.

I was talking to this person and it "hit"... The words started sticking and just dragging out, my eye squinting thing kicked in and it upsets me.
For me it's not twitches really... it's like trying to talk with a stuck sneeze... Thats my best explanation I think.

This person asked me, "Dude are you having a stroke or something."
I just said, no and walked off. My brother in law was with me and I heard him tell that guy he embarrassed me... I just get upset with it
BUT.. if I get plenty of rest and stuff like that it isn't such a big thing in my life.

 

[Southern Discomfort]

That sucks that even when you're doing the best you can to help other human beings you still get stupid comments like that.

 

[Chance]

That sucks that even when you're doing the best you can to help other human beings you still get stupid comments like that.

It does suck... and I don't think the guy meant it... He had been super nice up to that point. And I saw him the next day and he said he was sorry and he seemed embarrassed. I told him it was all good... My freakiness just caught him off guard as much as it does me. I cant hate him for not knowing what to do or say.

Also...
A friend of mine asked me to look up James Durbin... He was a guy on American Idol which I never watch.
They asked me too look him up because he has what I have but worse it seems. His is a lot more pronounced and affects many of his facial muscles and his lips... The poor guy gets this horrible pouty look at times. Yet as I watched I noticed we really looked a lot alike. We have the same goofy ears and many of the same facial features. It was really weird. Yet his Tourettes totally disappear when he starts singing...

I'm guessing there is an UN-trigger for it for most of us if we can find what it is. Mine seems to be when I am happy. We can be at the drag strip with the car, out flying drones, or fly fishing, and it doesn't seem to show up much...

I know you seemed worried over yours maybe developing or getting worse... It does suck, but dude we could have it so much worse... : )

This is James... My Tourettes just affects my eyes (just like he squints). He is the only other person I have ever seen that is like me in that respect. My mouth not at all like his, but he does appear to have that sneezing type thing but his words don't get stuck. He's a talker... : )

 

[xudo]

That sucks that even when you're doing the best you can to help other human beings you still get stupid comments like that.

People are the worst. The main thing I get from people is "but you don't swear?" or "what do you shout out??" and I'm like seriously, it's only 10% of people who have coprolalia...it's just that people shouting all kinds of obscenities makes better television than people like me who scrunch up their faces and sniff a lot.

I'm doing a comic con at the end of this month, and I sell my hats under a name with Tourette's in it. I'm so fed up with people asking why it's that name that for this one I've had a tshirt printed with "Yes, I have Tourette's" on it.

 

[Southern Discomfort]

I know you seemed worried over yours maybe developing or getting worse... It does suck, but dude we could have it so much worse... : )

Yeah mine isn't as bad as that. It doesn't take a lot for me to get distracted from my tics. Get me in a good conversation and I'm probably not ticcing.

 

[Southern Discomfort]

People are the worst. The main thing I get from people is "but you don't swear?" or "what do you shout out??" and I'm like seriously, it's only 10% of people who have coprolalia...it's just that people shouting all kinds of obscenities makes better television than people like me who scrunch up their faces and sniff a lot.

Not a lot of people know about my tics. I've mentioned it a few times on Facebook but I don't think any one outside of my family and my peer group really know what I deal with now. I am a little prepared for people to ask questions like that. That's fine, they've been given a warped view on what the reality of what it's like for people with the condition, allow me to correct that.

 

[Chance]

Not a lot of people know about my tics. I've mentioned it a few times on Facebook but I don't think any one outside of my family and my peer group really know what I deal with now. I am a little prepared for people to ask questions like that. That's fine, they've been given a warped view on what the reality of what it's like for people with the condition, allow me to correct that.

Very true... and many people will never know about mine if I can be relatively happy, or at least in low stress situations. I am not the kind of person who can parade around or celebrate my flaws... I do deeply admire those who can. They often give those like me a voice that would never be heard...

Its just a thing... a part of who we are. Some people, like my brother in law just starts laughing with me, not at me. He can be a huge pain in the ass at times, but he cares about me and allows me to be me.

I don't focus on Tourettes. I know its there and there isn't anything I know of that will stop it once it has started... To notably manage my mood and stress and my sleep is about the only control I have over it, and I have accepted that will have to be enough. : )

 

[xudo]

Not a lot of people know about my tics. I've mentioned it a few times on Facebook but I don't think any one outside of my family and my peer group really know what I deal with now. I am a little prepared for people to ask questions like that. That's fine, they've been given a warped view on what the reality of what it's like for people with the condition, allow me to correct that.

A few people I know well know about my diagnosis, and the ones that don't just accept I do weird things

As for comic con, it just gets a bit grating over the course of 8 hours hearing the same things over and over. There have been a few people who've genuinely been interested to hear that their beliefs around Tourette's are wrong, but most don't care.

 

[Southern Discomfort]

As for comic con, it just gets a bit grating over the course of 8 hours hearing the same things over and over. There have been a few people who've genuinely been interested to hear that their beliefs around Tourette's are wrong, but most don't care.

I guess that's fine if they don't care as long as they aren't the ones who are also staring and making stupid comments. It's like if I see someone in public who is clearly disabled, either say hello if you've got the courage or just carry on with your life.

It does make me think that a good portion of adults don't change their behaviour from childhood when it comes to disabilities, they are still the ones that point and make comments.

I don't focus on Tourettes. I know its there and there isn't anything I know of that will stop it once it has started... To notably manage my mood and stress and my sleep is about the only control I have over it, and I have accepted that will have to be enough. : )

Yeah. I've never had a negative opinion on my Tourette's. Even when it started I just thought that it was interesting. When I realised that it was life long I just accepted it straight away. But I'm lucky. Like we've all said, ours isn't that bad. The worst one I've had was barking, loudly. I was doing it at this camp thing I went to earlier this year but I still didn't care too much.

Yeah. I don't really have too much of a problem if people are curious.

 

[xudo]

but I still didn't care too much.

I have a problem in terms of my tics in that I became very good at suppression. My Dad made fun of my tics growing up (to his mind, I was doing it on purpose and could stop any time) and would constantly tell me how people at school would mock me (never happened, he was the only one to do this). So I became good at hiding it. Mainly only the vocal tics, and I can only do it for so long before they just come out. The downside is that they are so much worse when I get home if I've been suppressing them, and it's incredibly tiring to suppress too.

 

[Southern Discomfort]

Little update on my way to tic treatment. I'm having to see a local neurologist before I can go to St George's. My care coordinator is talking with them tomorrow about me and he's going to update me soon with more information. Rather exciting.

 

[Streetwise]

Very true... and many people will never know about mine if I can be relatively happy, or at least in low stress situations. I am not the kind of person who can parade around or celebrate my flaws... I do deeply admire those who can. They often give those like me a voice that would never be heard...

Its just a thing... a part of who we are. Some people, like my brother in law just starts laughing with me, not at me. He can be a huge pain in the ass at times, but he cares about me and allows me to be me.

I don't focus on Tourettes. I know its there and there isn't anything I know of that will stop it once it has started... To notably manage my mood and stress and my sleep is about the only control I have over it, and I have accepted that will have to be enough. : )

Do you think you could be a vegan,I just remember when I was I never had any health problems!didn't have hayfever symptoms ,I remember Cambridge University wanted a sample of my blood as they were studying the benefits of being a vegan and the longest lived people on the Earth aren't vegans but they appear to just eat A lot of fish, don't appear to eat a lot of red meat,always seem to live on the coast apart from a village in Greece.
Also a St. John's wort sitz bath would be good for Tourette's
if you're interested pm me and St. John's wort tea .
If you can add a lot of garlic to your meal as it appears to aid the nerves assigned to thought so Tourette's,I say a lot as really it should be wild garlic called ramsons in the uk ,so cultivated cooked garlic isn't as potent ,if you have a form of wild garlic in the us use that ,you'll know it you can't mistake its odour.

 

[Southern Discomfort]

Finally got a letter though the other week allowing me to use e-referral services to see a neurologist in the NHS, I had the choice of Poole, Dorchester or Yeovil. I went with Yeovil, the earliest appointment I could get was April. Nice backlog of patients to get through I see. And I think this was one of the faster appointments I could get; there wasn't even a date I could select at Dorchester!

 

[Southern Discomfort]

I get new tics all the time but this one I don't mind one bit. I've picked up doing the rock hand gesture from someone else. Had it a couple of days now and it doesn't look like it's going away any time soon. So that's fun.

I've had other tics in the last few weeks, I had a draugr laugh from Skyrim, and a Pennywise tic from IT.

Something I'm a little worried about though is that I think I've started giving 'the finger', I hope it amounts to nothing but it is a cause for concern for me.

 

[Underdawg]

I also have tics, both jerking tics including the head to the right one, as well as vocal tics. My gp diagnosed it as Tourette’s long before my ASD was officially diagnosed. My neuropsychologist does not feel it is Tourette’s at all but just another part of my autism. I have some vocal tics that almost sound like rap and my three year old grandson can copy them perfectly and loves when it happens. Mostly I get the tics when under fluorescent lighting.

 

[Southern Discomfort]

Seeing a neurologist today about my tics. Hopefully one or three things will come out of this; a concrete diagnosis, head scans and a place in CBIT in St George's Hospital London.

 

[Southern Discomfort]

Well I didn't get any of the things I wanted. He confirmed that what I do have are tics and that I am on a "tic spectrum" but stopped short of diagnosing me with Tourette's Syndrome because I do not copy what others say (echolalia) nor do I swear (coprolalia) which is just flat out wrong. So I've written to him to explain in more detail, I've also challenged him on what he knows of the condition mainly the above. I've also emailed Tourette's Action because I don't feel like I was given a fair deal; I am worried about my future employment prospects if I can't give a sufficient explanation to why I might be violently punching myself in the face whilst working.