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Southern Discomfort

Anyone with Tourette syndrome or related tic disorders want to share?

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On 13/12/2016 at 1:27 PM, 2Spirals said:

So do you think any of those are tics? Or just nervous habits. I'm not sure. I guess I don't know the standard definition of a tic, probably.

Probably just habits. I've heard of some people who experience tics so much that they just do it without knowing. For me every tic I do when awake I'm very aware I'm doing it. Normally tics start as small movements called 'simple tics' in the facial region of the body, presumably because there's so many muscles and possible movements there. And if you've had it for a while you'd probably get a premonitory urge to do it, like a feeling of tenseness, a hot or itchy feeling in your body or around the area that would do the tic just before you do the act or vocalisation.

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2 hours ago, paintedsky said:

I found an interesting bit of information. This is the name for when you are falling asleep and your body jolts or jumps. At least it seems very similar.

.https://en.m.wikipedia.org/wiki/Hypnic_jerk

 

 

Yeah, that's them! My tic is sort of similar thing as that. I don't think I've had that tic now for a couple of months, I don't know if it's permanently gone or what.

On an unrelated topic. I've had a couple of hypnic jerks then. Not for a few years, I think. They're weird though. I assumed it had something to do with sleep paralysis. 

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I'm exhausted. It's not often I feel this way I handle this extremely well but today and yesterday are those days. I wish for just one day it could all stop. Just be able to just not do anything and relax. I can't remember what that feels like any more. I don't know how people who have it worse than me can do it without it breaking them. 

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I've had some new additions in the past month. I started barking like a dog. Not in the way you might think either. This is a deep sounding bark with an actual intake of breath. Which is interesting. I also started slapping the side of my head on either sides or both sometimes. I hurts when I do it. Most of the time it's preceded by some sort of squeak and I have to close my eyes and grimace too. This is by far the most complex tic I have especially because there are so many variants of it. It's like a massive amalgamation of existing and new tics. Sometimes it's just the one slap other times it's three times. Sometimes I can stop myself from doing it but I get an uncomfortable feeling if I don't do it, sort of like a physical feeling of frustration in my head and arm. 

 

Yeah, another update in the wonders of tics. It's only getting worse. I'm glad I didn't have to put up these through school but this is quite bitter sweet because I remember what it was like to just feel normal. Now, if I'[m not engaged in an activity or thought I'm doing this. Most of the time I don't mind having tics and just think of it as something else which makes me different from other people which I usually just think it makes me different from others and I'm okay with that but there is a great sense of restlessness at times from having to do all these things, more so now that I'm hitting myself.

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Just started aripiprazole in hopes that it'll help my tics. Starting at 10 mg and moving up to 20 in 6 to 8 weeks time if I'm able to tolerate 10. I'm keeping risperidone going for the time being and if aripiprazole works then I'm going off the risperidone. Risperidone has been helpful, the only side effect I get is a bit of enlargement of breast, which isn't a good look on a guy. That's the reason why I didn't want to go up in risperidone again, that and I don't think it helped my tics. I don't know if it helps with my tics at all but I'll never know the answer to that I think. 

I'm just hope that aripiprazole doesn't suck ass and that it works like the lamotrigine, in that I get no side effects whatsoever. Fingers crossed.

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19 hours ago, nervousbat said:

My sister has a tic that makes her have to clench her fists and flex all her muscles mostly in the arm/neck/shoulder region really tightly. She's had it since she was a couple months old. We're grown up now though and I don't think she has it much at all anymore. It seems to have tapered off since we entered adulthood. My grandma said she had the same thing when she was young and it tapered off like my sister's did. They're very much alike.

Yeah, my sister is the same. She would grunt, scrunch her nose amongst other things. She says she still tics but she's very self concious about them and so does it in private. Opposite to me because I can't do that, although I can go on outings and I'm not whistling or slapping myself. Hmm, it is what it is.

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Pro-tip: If you have a need to slap yourself on the side of your head and you own a hoodie, put the hood up to protect yourself. I think I kind of have to feel pain for that tic to go away so I end up slapping myself more in a single instance but at least it avoid being catching my eye.

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Since it's Tourette's Awareness Month, 15th of May to 15th of June, I thought I'd mention a few facts about Tourette's on here since this thread although very quiet it does get a lot of hits.

 

What is Tourette's?

Tourette's syndrome (TS) is an inherited neurological disorder, not a psychological one. It is not an illness and it is not to do with mental health. However 80% of those with TS have a combination of other conditions, mainly ADHD and OCD but it can be a lot of things including autism and Asperger's syndrome, anxiety, personality disorders and depression. This is called Tourette's Plus.

Tourette's was first discovered back in the 19th Century by French neurologist Georges Gilles de la Tourette. His work went largely unnoticed due to his life being cut short however. It's only been in the last 50 years has it been properly recognised and separated as it's own condition.

 

Is Tourette's just swearing?

Tourette's is not all about swearing. That form of Tourette's - known as Full-Blown Tourette's affects only around 10% of those with Tourette's. The swearing tics are known as Coprolalia ('copro' meaning obscene, 'lalia' being speech), Copropraxia is the use of obscene gestures ('praxia' meaning movement). The reason behind the swearing is still unknown but you can think of it as having no filter on your brain; all the negative things you might of about a friend you have the ability to filter them about of your speech. Someone with Full-Blown Tourette's can't do that. And negative thing they observe may be open to being mentioned. And that is in essence the working of the coprophenomena.

 

What is a tic?

A tic is either sound or a movement made by the person. It is a reaction to an involuntary sensation, usually a itching, burning sensation, but for a lot of people these movements can happen without any awareness prior to the tic. A tic can be suppressed for a short period of time before it needs to be released, but how well someone can suppress a tic varies from person to person and needs to be worked at. Tics may be more prevalent when angry, sad, anxious or excited but it is different for everyone. What can calm them down also differs from person to person, music seems to help quiet them down for a time for a lot of people. Being engrossed into a task can usually mean a reduction in tics.

Examples of tics may be:

Squeaking

Eye twitching

Grimacing

Coughing

Blinking

Gasping

Touching other people or things

Repeating your word words or others

 

Is there a cure?

Tourette's for many is a lifelong condition. There is no cure. Certain medications can be used to help people but with limited success. There is also therapy that can help called CBIT or HRT - Habit Reversal Training. Therapy is quite hard to access because of lack of training with professionals. One of the better ways to treat TS is to target the comorbid conditions, this should mean a reduction in tics.

 

Does cannabis help?

Some people find it can help their tics dramatically but others find it can make them much worse or does nothing at all - just like with any drug out there the response is very personal and cannot be predicted.

 

How common is Tourette's?

 

Tourette's is estimated to affect 1 in 100 children. This number is less for adults as Tourette's can a chance of diminishing completely upon adulthood. A child may simply have a coughing and a blinking tic, whilst this is still a very weak form of the condition it could still be classified as Tourette's if the doctor is trained in recognising the symptoms.

 

Should a child be punished for ticcing?

Punishment for ticcing is counter-productive. Tics are involuntary. As emotions can affect tics, as discussed above, it is not helpful to upset the person for ticcing, the frequency of tic will most likely get worse for a time. 

 

How can you help someone with Tourette's?

 

Don't bring attention to their tics; a lot of people are very self concious about their tics. Attention to them can make them worse for the person but don't be afraid to talk to the person about them. Ask the person politely about them if you're curious, many are happy to talk to others about them and makes the person with TS more comfortable.

 

Personal Note

If you have Tourette's or another tic disorder do not let it change you. Pick yourself up, dust yourself off and keep going. Own your tics. Be proud of them. If someone makes a comment on them calmly explain you have this condition if they reject your explanation, just laugh and move on, it sucks but you can't change everyone's opinion. What you can change though is your response to their's. These people are not important in any way to your life. 

Those that matter don't mind, those that mind don't matter.

 

 

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This thread is like a damn diary! 

Anyway, I recently realised that my ruminations cause me to tic. I thought that was an interesting point. So there must be a mix of my anxiety and depression playing off on my tics. This isn't exclusive mind you, I still tic with no real thoughts going through my head. 

If anyone out there also experiences the annoyance of ruminating thoughts and also has some sort of tic disorder or Tourette's syndrome, do you also find this to ring true?

And on another topic, I had a very twitchy last night. I have found I occasionally tic during my sleep but the first two hours of sleep was pretty bad. I think I must have been dreaming about something stressful to provoke that much of a response. I woke up at midnight with a bad stomach and needing to go to the toilet. I despair sometimes at my own body.

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The article you posted suggested music could be helpful, have you tried to see if it helps you?

That's a bit sad for me that you slap your head. I wonder if you could substitute hitting something else inanimate or anything except your poor noggin. Maybe that's not possible though. 

I am cautiously optimistic that my grimace was because of tension in my jaw from the broken tooth.

Edited by paintedsky

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3 hours ago, paintedsky said:

The article you posted suggested music could be helpful, have you tried to see if it helps you?

That's a bit sad for me that you slap your head. I wonder if you could substitute hitting something else inanimate or anything except your poor noggin. Maybe that's not possible though. 

I am cautiously optimistic that my grimace was because of tension in my jaw from the broken tooth.

Yeah, I'm trying to learn to play the bass guitar using a computer game on my PC. I think it's helps to a degree for the time I'm doing it. The big problem at the moment is that I'm generally quite anxious, I've got my driving test on Thursday and it's really not been helping with the tics. Get that out of the way and things should become a bit easier, I hope. 

I've only been able to find so many helpful things to suppress the slapping tics. As I've said before, putting up the hood on my hoodie softens the blows. I guess what I have to try to learn is to do it as softly as I can, difficult when the urge to do it is strong though. The main problem is that the urge is like lightning, I don't have a lot of time to think about hitting something else so that's quite hard. Thanks for the idea though. 

I don't know about the grimacing. I would assume so too that it has something to do with your broken tooth too. Nerves can do funny things.

 

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Just thought I'd update this thread with the news that I'm hopefully going to start CBiT - Comprehensive Behavioural intervention for Tics. I've got to see a neurologist first locally then I can be included in the programme at a tic clinic at St George's Hospital in London which would certainly be interesting - and scary; I don't get out much nor do I take 3 hour train journeys into busy cities regularly.

Basically the neurologist appointment - I think according to the St George's website - is going to include a diagnosis of a tic disorder and also screening for other comorbid conditions like the very common ADHD/ADD and OCD. I have a brother with ADHD. I've never really thought of myself as having ADHD, although I have struggled with going the extra mile with my work at school - they always said I wrote the bare minimum. And verbal instructions can be hard to follow a lot of the time. It's most likely due to Asperger's but it's probably worth looking into for the sake of being genetically predisposed to it. OCD-wise I do have intrusive thoughts, I often think the house might burn down when I'm out and I also get the feeling like I've forgotten something when I go somewhere and I don't know what it is. Don't know if it's enough or even if it is OCD sounding. I can push past these thoughts though, it's just not very nice having them in your mind. I am a little aware of that I tend to involve my thoughts with entertaining these things simply because these things fascinates me as someone with autism. 

I've had some bad nights recently, just the other night I couldn't stop moving in my sleep, I was punching myself in the face with quite some force and eventually I had to get up. The only thing I know that works for me is to play some computer games as that really distracts me but also stimulates me a bit so it was hard getting back to sleep after that too. Eventually I was able to though. 

I am scared that now I'm doing self injurious behaviour I'm going to get the dreaded coprophenomena. I don't know if it applies to adults with the condition simply because I've now pretty much stopped developing - brain wise, but the mean age for developing coprolalia and the like is about 5 years, I've had Tourette's now for 2 and a half years. I get new tics all the time, most of which are just once time only sort of thing I'm hoping the punching is just a short phase and not an evolution of my other tic where I have to slap myself on the side of my face. Who knows though, I don't.

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Been a little while since I've updated. I'm still on for an appointment to see a neurologist in April. The NHS did give me a chance to fill in for cancelled appointments but their system is borked, now I'm not even getting SMS messages any more for it so that's great. 

I'm making a tic diary now with a psychologist and her Number Two as part of a psychological formulation they're doing on me - three years without a clear diagnosis and lots of labels thrown my way, it's tiring to think about it so I hope they'll find something that sticks now.

Tic-wise, I've had a pretty 'excited' day today. I picked up two new tics, one is like an evil laugh on a inhale of breath. The other one is a Pennywise line from IT. I've not even watched the film! So that's been fun. They might stick, who knows? I'd be quite happy if they didn't as funny as it is to be quoting Pennywise, I can't imagine it'll be as funny in public - I am pretty good as suppressing though.

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It's too bad you have to wait so long to get appointments for the neurologist. It will be interesting to see if you have coexisting conditions like OCD or ADD. I'm sorry your tics are self destructive some days, but I'm really happy you are going to seek support for them. I hope you get accepted to the CBiT program soon. 

Edited by paintedsky

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Thanks! Now we're into February it doesn't feel too bad. Yeah, it would be interesting if the neurologist picks up on anything that the psychologists miss. I mean, I get intrusive thoughts before a lot of my tics so I wouldn't be too surprised at an OCD diagnosis. But we'll just have to wait and see.

Considering taking up my own website with a timeline of what is going to happen. It might well be interesting to others who follow behind me in their progress to get CBIT. 

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The last 24 hours I've had the rock hand gesture as a frequent tic. Which is pretty cool as tics go. Bit annoying as a have a really strong premonitory urge with it which is strange for me as not a lot of them do that. The urge can be really strong where I have to  thrash my hands around doing it so I look like I'm rocking out to something! Bloody weird!

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My gross motor tics have always been dormant unless I'm heavily stressed, and then they roar to life. Usually my right shoulder will twitch upward or my head will twitch sideways to the right, or both, sometimes very suddenly, and sometimes violently. If it's really bad, the whole right arm can get involved. Mercifully, that kind of manifestation is rare. What isn't rare is the vocal tic, which comes across like a quiet, low growl at the very back of my throat.

My younger brother also has a vocal tic like this, except his rises to a kind of high, warbling peak and sounds something like a wild turkey. He was at an outdoorsmen's convention not too long ago, minding his own business, when he happened to hear someone say, "I don't know who the dude making the turkey calls is, but I wish to hell he'd quit." My brother listened to try to figure out who the guy was talking about, until he realized that his friend who was with him, and was familiar with the tic, was trying very hard not to burst out laughing. 

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On 26/02/2018 at 6:38 PM, Cerberus said:

My gross motor tics have always been dormant unless I'm heavily stressed, and then they roar to life. Usually my right shoulder will twitch upward or my head will twitch sideways to the right, or both, sometimes very suddenly, and sometimes violently. If it's really bad, the whole right arm can get involved. Mercifully, that kind of manifestation is rare. What isn't rare is the vocal tic, which comes across like a quiet, low growl at the very back of my throat.

My younger brother also has a vocal tic like this, except his rises to a kind of high, warbling peak and sounds something like a wild turkey. He was at an outdoorsmen's convention not too long ago, minding his own business, when he happened to hear someone say, "I don't know who the dude making the turkey calls is, but I wish to hell he'd quit." My brother listened to try to figure out who the guy was talking about, until he realized that his friend who was with him, and was familiar with the tic, was trying very hard not to burst out laughing. 

Hmm, I feel for your brother. I haven't yet had to make my vocal tics - obvious tics anyway - known to the public. I'm quite scared that that day will come and the reactions I get from others. But I know I can't think like that because the more stress I put on myself the harder it'll be. And I know I can manage at the moment; I had to wait 30 minutes in a GP's surgery waiting room this week and it was painful, as soon as I was in the room with the doctor I just let it all out. 

I don't know how I'd react if people noticed my tics and they reacted negatively. I guess, as the old British war propaganda says, "Keep calm and carry on".

 

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