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I've done a thread on this a few years back, but I figured that it's kind of been a while and, well, there's a lot of misconceptions about Tourette's and I enjoy talking about it. I am a woman in her mid 20s with a mild case of Tourette Syndrome. I was diagnosed in high school by my psychiatrist, though it was a pretty casual thing. Tourette's is a disorder that is defined as someone possessing several motor tics and at least one vocal tic. A tic is a sudden, repetitive movement or vocalization that is done involuntarily. They can be occaisionally suppressed but are generally done without much, if any, thought behind them. Tourette's is more common in younger males than in women and is generally comorbid with depression, anxiety, ADHD and obsessive compulsive disorder. It usually eases with age, but can stick around for quite a long time. Topics that I can go over if people are interested: My tics and how they've evolved over the years How it feels to tic Good documentaries, movies and books that deal with Tourette's How Tourette's effects my life The stupid poo poo that sets it off How 'suppressing' it works Treatment Causes Those are obviously just ideas, if anyone has any questions, go for it. My life is pretty normal, I'm married, I drive, I hold down a job, I lift weights, I'm lucky enough to have a life that's not really hindered by having tics, they're just kind of a thing that I do sometimes. And needless to say, if anyone else with Tourette's or ticcing disorders or even OCD want to talk about ticcing and compulsions, I would love it. This is a pretty rare syndrome and being able to talk to other people who have it is incredibly enlightening, I actually got to talk to a guy I knew from college about our Tourette's and it was fascinating how much stuff we had in common with it.
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Mar 28, 2014 22:52
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Effexxor posted:A tic is a sudden, repetitive movement or vocalization that is done involuntarily. They can be occaisionally suppressed but are generally done without much, if any, thought behind them. How can you tell when a tic is coming, and if the process is sudden how are you able to suppress it?
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Mar 29, 2014 00:57
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I remember your previous thread, thank you for making a new one.  I've never gotten myself diagnosed, but I've had motor tics since I was young, and I had a vocal tic that went away with age. It's always embarrassing when people ask if I'm in pain because of my facial tics.Do you have any obsessive compulsive tendencies too, and do you feel like it gets worse with stress or any other situation?
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Mar 29, 2014 01:40
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Tailored Sauce posted:How can you tell when a tic is coming, and if the process is sudden how are you able to suppress it? Basically, I get an 'uncomfortable' feeling in that area of my body. Something feels wrong, and I know that I need to do something to fix it. Picture a really, really annoying itch. You know that it's not gonna go away, and you know that you're gonna itch it. Chances are good that you might have already brought your hand down there to scratch at it without even thinking about it. So you can either put it off and deal with that itch just driving you nuts the longer you go, or you can just scratch it. Except with Tourette's, it's not just a feeling under the skin, it's a need to do/move something. For me, it's generally bending my joints until they feel like they've been 'stretched' enough. For instance, I have a tic where I bend my wrist back suddenly and the best way to describe how it feels before is that it's like I have a little ball bouncing back in my forearm, going from my forearm to my wrist. As the uncomfortable feeling builds, it's like the ball starts bouncing faster and faster and faster and the only way to get the ball out is to bend my wrist back, and that 'gets it out'. Sometimes it works and sometimes I need to tic more to 'feel right'. Chicken Biscuits posted:I remember your previous thread, thank you for making a new one. No prob! And yeah, I have people tend to think that I'm just annoyed with them or upset or something when I tic, when someone actually notices them. Generally people are really surprised when I say that I have Tourette's and don't know which of my tics are actually tics. Once I point out that 'yeah, you know when I roll my lip up like this? That's a tic and I usually do this, this and this after it', then they realize why I'm actually doing that action and recognize it as a tic and not me rolling my eyes at them or anything. The only people who went 'Oh yeah, I knew' when I mention that I have Tourette's are other people with facial or vocal tics, because they're conscious of what they go through with it and can recognize it in other people too. My powerlifting coach has a very distinct facial tic and does a little grunt thing and I wonder if he might have it, but I doubt he really knows what it is or is aware of it. I do have some compulsive tendencies, yes. It goes hand in hand with my anxiety, I'll get just so focused on this one thing and when it's super bad, I start to actually talk tic. If I'm really having bad feelings about myself or am remembering a bad memory and not letting myself let go and forgive myself, I'll just start muttering 'stupid stupid stupid' and will have to do that until either I feel right, or I'm able to whip out my CBT tools and calm myself down. I had a very annoying time with deadlifting where I was getting so damned nervous about the lift that I would bend down to get the bar and basically hyperventilate till my 'breath felt right', and almost passed out once I locked out at the top of the lift. It makes me laugh now because I was so confused about why I was so dizzy till I realized that I was kind of ticcing because I was just so nervous and overthinking it. I fixed that by just making myself shoot down and pick up the bar as fast as possible and do it over and over again until I wasn't anxious about the lift. But yeah, being stressed, tired and/or anxious are the three biggest reasons things that make my Tourette's get bad. I know that I have got to get to sleep at night when my arms start to want to flail around and once I start to get ticcy.
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Mar 29, 2014 18:39
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Have you read Oliver Sacks's essays on patients with Tourette Syndrome? Do you find he gives an accurate impression of the disease? How has it impacted your life? Do you take medication for it? Has it been effective?
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Mar 30, 2014 01:27
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Effexxor posted:Basically, I get an 'uncomfortable' feeling in that area of my body. Something feels wrong, and I know that I need to do something to fix it. Picture a really, really annoying itch. You know that it's not gonna go away, and you know that you're gonna itch it. Chances are good that you might have already brought your hand down there to scratch at it without even thinking about it. So you can either put it off and deal with that itch just driving you nuts the longer you go, or you can just scratch it.
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Mar 30, 2014 02:18
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chthonic bell posted:Have you read Oliver Sacks's essays on patients with Tourette Syndrome? Do you find he gives an accurate impression of the disease? I think Oliver Sack's essays on Tourette's are honestly probably the best that I've read on the topic. Granted, they're on people that are pretty severely effected by Tourette's, but he brings up a ton of really excellent points, like how people with severe Tourette's can still be successful and happy, and how when people with Tourette's are focused really heavily on something and moving, the tics tend to subside. You generally don't see someone not just focusing on the shock value and looking at it on a personal level, which is a nice change. Also, he's great at describing the other stuff that comes with Tourette's, like the obsessive behaviors and how it's generally not just ticcing, it's obsessive behavior that just so happens to manifest physically. The actual tics don't really effect my life that much anymore, I'm so used to them that I pretty rarely even notice when I'm doing them. Plus, I've become really good at suppressing till I'm alone or no one's looking to unleash my pent up tics. I also work in a call center, so the only people who really see me there are coworkers who all know about it and don't care, and I've got the mute button if I actually need to do a vocal tic while on a call. The compulsive feelings are a bigger thing, I tend to get obsessive over stupid things and that's what I hate. I wouldn't say that I'm OCD because I don't really have any compulsions about patterns or affecting the world around me, they're all just about myself and actions that I do to make myself 'feel right'. Treatment is generally pretty spotty. Antipsychotics have been approved for use for people with Tourette's but they don't work for some people, or they'll stop working as well after a while. There are some surgical treatments, but they're incredibly invasive, dangerous, expensive and not guaranteed to work. The majority of people with Tourette's aren't on medication for Tourette's because the majority of people with Tourette's aren't really that impaired by the syndrome. Therapy works pretty well to at least deal with the mental strains of not being able to control your body and to cope with it, as does treatment of the comorbid disorders that are generally hand in hand with Tourette's. Personally, I see no reason to take any medication for it. For one thing, it's not really something that effects me too terribly and for another, certain SSRIs make my Tourette's incredibly worse so I'm a little gunshy on trying. So I take Adderall for my ADHD and leave it at that. Uranium 235 posted:Is it anything like a muscle spasm or is it unlike any sensation that a person without Tourette's could understand? Do other people with Tourette's have similar ways of explaining the symptoms? It's not like a muscle spasm, at least I don't really think so. Well, maybe the flailing is like that, a little, but flailing feels different to me than my normal tics that tend to be more along the line of me bending/stretching my joints. Like locking and unlocking my elbow or stretching my shoulder, that kind of thing. As for people without Tourette's understanding the feeling, I'm not so sure. I think that the 'scratch the itch' description is really as close to describing it as I can get, except that instead of an itch, it's more of a part of your body just feeling uncomfortable. As for other people with Tourette's and their descriptions... I'm not sure. When I talk to people that I've know with Tourette's, we generally don't have to talk about how the tics feel because we already know how what it's like. I've never actually heard them describe to anyone else how they feel. If any other Tourette's folks would like to chime in, I'd love to hear how other people describe them. Effexxor fucked around with this message at 07:28 on Mar 30, 2014 |
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Mar 30, 2014 07:23
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Does the popular depiction of Tourette Syndromes bother you? It seems like people with Tourette syndrome only exist in popular media to say dirty words.
thrakkorzog fucked around with this message at 07:42 on Mar 30, 2014 |
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Mar 30, 2014 07:38
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thrakkorzog posted:Does the popular depiction of Tourette Syndromes bother you? It seems like people with Tourette syndrome only exist in popular media to say dirty words. Well, on one hand, yes, but on the other hand, misrepresentation is there for tons of other disorders and it's generally worse for them because with them, they get diminished or made into 'not such a big deal'. When Tourette's is portrayed, it tends to seem really intense and awful, even if it's portrayed as being much more humorous than it actually is and isn't accurate. But there are still some bright points, such as the MTV 'I have Tourette's' episode that is actually really well done and the Tourette's South Park episode which actually explains the whole lack of control thing exceptionally well. Honestly, I'd rather have Tourette's be portrayed as a serious disorder, which it is, than to be treated dismissively like OCD or ADHD are. You see people mention 'Oh, I just clean so much, guess I'm OCD!' or you see a parent with a hyper kid and the punchline is something like 'Better get him on Adderall!'. That bothers me a lot more because it seems like it's being dismissive of a serious mental illness.
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Mar 30, 2014 08:06
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I just wanted to say that if you are experiencing light/mild Tourettes symptoms but also have short periods of time where you "space out" you might want to get checked out for epilepsy. My sister started seeing a new GP a while back and described her symptoms to her, who said it sounded like epilepsy with petit-mal seizures. Apparently the tics she had could have also been a sign of epilepsy but her former doctor just brushed off the "blanking out" stuff that actually turned out to be petit-mal seizures. She went to a specialist and got formally diagnosed, and now shes on Lamictal now and much happier, last I heard. Just a PSA! I don't want to super hijack your thread or anything
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Mar 30, 2014 09:13
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Chiba City Blues posted:I just wanted to say that if you are experiencing light/mild Tourettes symptoms but also have short periods of time where you "space out" you might want to get checked out for epilepsy. This is true, epilepsy and Tourette's can get mixed up in diagnoses. Thankfully I've never had 'blank out' times like that but I have a friend with epilepsy who I do tend to swap stories with on that whole 'yeah, our bodies kinda don't do what we want them to do, freakin' lame'. Awesome to hear about your sister though and thanks for bringing it up!
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Mar 30, 2014 18:14
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So when it comes to your vocal tic is it always a set phrase/sound or is it the first thing that pops into your head that you say?
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Mar 30, 2014 18:54
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Thrasophius posted:So when it comes to your vocal tic is it always a set phrase/sound or is it the first thing that pops into your head that you say? I make this 'hmph' sound normally. It's not so much about the sound, but more about forcing all of the air out of my lungs in this certain way that makes me make that sound. It's about the feeling that I get in my chest when I push out the air that makes me feel right, the sound is just a side effect of it. When I do actually say a word because I'm in a super lovely mental state, it's usually 'stupid' or 'anxious' or even just 'aaaah' and I just repeat them over and over, it's generally about how I'm actually feeling. I can suppress those really well though, I probably only ever do that when I'm in the bathroom or in my car and am alone. CBT really helps to stem those though. I basically check myself and go 'this is your brain reacting to false feelings of anxiety and using a coping mechanism to try and stop the anxiety, this is not true or accurate and these feelings will pass in 10 minutes'. And then the anxiety subsides in 10 minutes, usually, and the tics subside as well. They're really more of a physical manifestation of my anxiety than anything else.
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Mar 30, 2014 20:19
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Effexxor posted:or in my car and am alone. So in general are people with Tourettes considered safe enough to drive or does it depend on the severity of symptoms? Did your tourettes make it any harder for you to pass your license seeing as you said being anxious can set it off?
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Mar 31, 2014 00:41
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Thrasophius posted:So in general are people with Tourettes considered safe enough to drive or does it depend on the severity of symptoms? Did your tourettes make it any harder for you to pass your license seeing as you said being anxious can set it off? One thing with Tourette's is that your tics tend to subside when you are doing activities that require both your mind to be involved and your body, like playing sports or lifting weights. Because of this, most people with Tourette's can drive a car. I do tic a lot in the car, but they're mostly just facial tics and occasionally that 'hmph' sound, nothing that involves me suddenly jerking the wheel to the side of anything like that. In one of Oliver Sacks' books, he talks about a surgeon with Tourette's who has some very severe Tourette's, and yet is able to drive, fly a two seater plane and to be an accomplished surgeon. No one's really sure why tics subside when you're focused like that, but they do. I work in a call center and when I get to do off the call work that is basically just data entry, I don't tic at all because I have to think and my hands are moving and it's probably as peaceful as my life gets. Granted, some people don't get that sense of 'flow' from driving and don't drive, but I think it's more of a personal decision if you haven't already gotten into a wreck or something.
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Mar 31, 2014 03:56
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Effexxor posted:One thing with Tourette's is that your tics tend to subside when you are doing activities that require both your mind to be involved and your body, like playing sports or lifting weights. Because of this, most people with Tourette's can drive a car. I do tic a lot in the car, but they're mostly just facial tics and occasionally that 'hmph' sound, nothing that involves me suddenly jerking the wheel to the side of anything like that. In one of Oliver Sacks' books, he talks about a surgeon with Tourette's who has some very severe Tourette's, and yet is able to drive, fly a two seater plane and to be an accomplished surgeon. No one's really sure why tics subside when you're focused like that, but they do. I work in a call center and when I get to do off the call work that is basically just data entry, I don't tic at all because I have to think and my hands are moving and it's probably as peaceful as my life gets. That has actually brought to light how little people are made aware of tourettes. I had no idea that someone with tourettes could become an accomplished surgeon, in fact tourettes has always been portrayed to me as a mental illness you have no control over, that the tics are always involuntary and sporadic. I didn't even know you could suppress or subdue the tics so I guess you could say this thread has quite enlightened me.
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Mar 31, 2014 04:24
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If it's okay with the OP, I'd like to join in as well. I was diagnosed with Tourette's when I was 8; currently 35. It's very mild today, though the vocal stuff went away when I was 13 or 14 (and the vocalizations were very mild for me). Plenty of muscular tics (mostly facial) still exist today, but I'm good at hiding them. I actually drive for a living (food delivery), I guess I'm proof that people with Tourette's can successfully drive or something. That said, I find my tics are far less (while driving) when I drive something with a manual transmission (I prefer manual anyway) - I get more involved in the whole "driving" thing. randomidiot fucked around with this message at 08:00 on Mar 31, 2014 |
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Mar 31, 2014 07:57
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Oh, just as a note, OP: OCD comes in Pure-O variants, too: just obsessions and intrusive thoughts, no compulsions. Here's a question that might be too personal, so feel free to not answer it: do you feel like your condition is an inextricable part of your personality? If you read that particular Oliver Sacks essay, are you anything like Ray (Witty Ticcy Ray, in The Man Who Mistook His Wife For A Hat), where you feel you can't really separate the tics and compulsions from yourself in a way that preserves all of your personality?
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Mar 31, 2014 08:42
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Thrasophius posted:That has actually brought to light how little people are made aware of tourettes. I had no idea that someone with tourettes could become an accomplished surgeon, in fact tourettes has always been portrayed to me as a mental illness you have no control over, that the tics are always involuntary and sporadic. I didn't even know you could suppress or subdue the tics so I guess you could say this thread has quite enlightened me. This is really awesome to read! And you're definitely right, there's not a whole lot of information out there on Tourette's and that information is out there is generally not displating the mild forms of it that are more common. I don't blame anyone for it because severe Tourette's is as 'charistmatic' as a mental disorder gets, you can actually see someone's mental illness in a really concrete way and the bigger and more dramatic, the more 'entertaining' and interesting it is. That's one reason why I really liked the MTV Rea Life 'I have Tourette's' episode because they had a guy on there, a pro BMX biker, who had my level of tics. I highly suggest checking that episode out, it's rare that you get to see an actual spectrum like that. And yeah, I've never seen anyone actually talk about suppressing the tics in any of those shows. I thought for the longest time that it was just something I could do and that it meant that it meant that I didn't actually have Tourette's or something till I talked to people who had it and we realized that we both felt that way and that we both could actually suppress it. I'll probably do a video tonight to show what my tics actually look like and to show how subtle alot of them can be and how easy it is to overlook them. I think that there are a lot more people with Tourette's out there than most people think, it's just that you don't recognize that what they're doing is ticcing. It's really pretty incredible, if you aren't looking for it or if you don't know that someone already has it, you aren't likely to recognize it. My psychiatrist didn't even realize that I was doing it till I pointed it out, and he's trained to spot this kind of thing. some texas redneck posted:If it's okay with the OP, I'd like to join in as well. Awesome, another person with Tourette's! But yeah, my tics have calmed down a lot too as I've aged, especially since high school. And that makes total sense that manual transmission makes you tic less. For me, I get set off if I have the vents pointed up at my face and on too high, if my eyes are dry it makes my tics just get so annoying. Do you have anything like that? Also, since it was asked earlier, how would you describe your tics? Is my description similar to what you experience? chthonic bell posted:Oh, just as a note, OP: OCD comes in Pure-O variants, too: just obsessions and intrusive thoughts, no compulsions. Hah, I literally just reread 'Witty Ticcy Ray' yesterday, so good timing! As for my tics, I don't think that I'd be the same without them, but that's because they're so intwined with my other disorders that I don't think I could get rid of one without the other. I don't think that it's in the same way that Ray experienced Tourette's though. Ray was talking about Tourette's and this euphoric, off the wall, spontaneous presence in his life that kept him going and creative. For me, that's how I feel about my ADHD. I've been medicated for 9 years on Adderall and while I love being medicated and being able to work, I'm still glad that I have ADHD because I feel like I have a lot of advantages with it that other's don't have. I have a quick mind, I can see patterns that other people don't and I feel like the overfocus that I have from it have helped me massively at my job. The reason I bring up ADHD is that a lot of the non ticcing characteristics of Tourette's, which include charisma, the ability to hyperfocus and increased spontaneity are also characteristics of ADHD and I have no idea which to attribute to which. Because of that, even if I could have someone get rid of my Tourette's with some magic drug or something, I'd probably say no. They're just tics, they don't really interfere in my life in any major way. They're just a 'me' thing. What do you think, simple texas redneck?
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Mar 31, 2014 16:35
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Seeing how inaccurately tourettes is portrayed kind of reminds me of how poorly depression is portrayed as a mental illness. Then again it may be that there is poor awareness because tourettes is rare. I'm not saying the matter of factly, I'm saying it's rare as in I have never personally seen or met someone with tourettes in my area, I don't even know anyone who knows someone who has it, it just seems to be unheard of in my area.
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Mar 31, 2014 21:29
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Thrasophius posted:Seeing how inaccurately tourettes is portrayed kind of reminds me of how poorly depression is portrayed as a mental illness. Then again it may be that there is poor awareness because tourettes is rare. I'm not saying the matter of factly, I'm saying it's rare as in I have never personally seen or met someone with tourettes in my area, I don't even know anyone who knows someone who has it, it just seems to be unheard of in my area. You never know. I used to work with a guy with mild Tourettes, and he was basically a blonde Don Draper type of guy. He was a successful salesman, who could suppress his tics while making big sales. And when he was talking with his coworkers, he was just a cool guy who happened to have an odd facial tick.
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Apr 1, 2014 06:06
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Thrasophius posted:Seeing how inaccurately tourettes is portrayed kind of reminds me of how poorly depression is portrayed as a mental illness. Then again it may be that there is poor awareness because tourettes is rare. I'm not saying the matter of factly, I'm saying it's rare as in I have never personally seen or met someone with tourettes in my area, I don't even know anyone who knows someone who has it, it just seems to be unheard of in my area. Well, the people that have coprolalia, which is the subtype of Tourette's that is when people tic with inappropriate language, are rare, and most portrayals of Tourette's in popular entertainmaint does focus on them. So yes, that level of severity is pretty rare, and there's not a whole lot of awareness about why these people are ticcing and cussing and that it's not because they're trying to be funny or offensive, it's because they literally can't stop themselves no matter how hard they try. It makes sense for you to have never met anytone with that severity or anyone who's that 'obvious' with their tics, I've never met anyone who had it that strongly. thrakkorzog posted:You never know. I used to work with a guy with mild Tourettes, and he was basically a blonde Don Draper type of guy. He was a successful salesman, who could suppress his tics while making big sales. And when he was talking with his coworkers, he was just a cool guy who happened to have an odd facial tick. Yeah, this. Honestly, most people wouldn't know a tic if it hit them in the face. There's something in our wiring that, when we look at a face, we're looking more for what the meaning is behind that face's expression than necessarily what specific movements that face is doing. Because of this, if you can suppress a tic until you have to react to something annoying, you can wait till appropriate and do a tic where you roll your eyes. If I wait for a moment where I can agree with someone, I can 'hmph' and no one notices that it's a tic because it was appropriate in that situation and it just seems like I'm responding. It takes a lot of effort to do that though and when I'm comfortable, I don't bother suppressing at all. So when I'm at work, sitting by coworkers that I know and like, or when I'm at home with my husband or hanging out with good friends and family, I just let it happen. And still, people don't tend to realize that my weird little facial expressions are tics. Here's a video I did back in college of my tics for that old thread I did, http://www.youtube.com/watch?v=FTo2gratkUs. Keep in mind that it is a six year old video so some of my tics have 'evolved', but I still do most of those, just not as much as others. The 'hmph' thing is my vocal tic, and I don't don the shoulders one as much. But the lip and eye tics? Very common. I'll make a video sometime soon here with my newer ones, not tonight though because birthdays are lame, and try and show how they've evolved over the years. In most people with Tourette's, they calm as you age. But waht's neat is that out of the people who say they grew out of it, 90% of them do actually still tic, they just don't notice it. Also, everyone enjoy the guy in the comments who tried to tell me that Jesus would cure my Tourette's.
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Apr 1, 2014 16:42
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You mention being able to suppress the tics, how long do you feel you could suppress them for? Would it be a matter of hours or minutes? Also how do the tics affect your ability to get to sleep?
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Apr 1, 2014 17:37
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My husband has mild tourettes and as he's aged it has become less prevalent (he is 35.) His tic manifests as a sort of swallowing thing, almost like his breathing hitches. Most of the time he controls it, it's when he's super tired or relaxed that it will pop up. No one knows he has it until he brings it to their attention that it is a thing to notice.
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Apr 1, 2014 18:29
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With suppressing the tics, it really depends on the situation and why I'm ticcing. In my general day to day life, the suppression is really on more of a subconcious level. By now, it's just what I do when I'm alone or comfortable, I just let them all go all at once. If I actually thought about it? It would basically be impossible. You know how someone says 'don't think about X' and all you can think about is X? It's like that, except even more annyoing. It's a pretty common thing for people with Tourette's to kind of... feed off of each other, in a way, because if you see someone ticcing? It's like if you see someone yawn, you have to do it too all of a sudden. I have no idea why it works that way. Anyway, actually having to think about suppressing has the exact opposite effect that you would really want. However, if I'm in the middle of a really bad wave of anxiety, I can make the word repetition tic stop by lowering my anxiety levels through CBT. When I'm like that, the Tourette's is just a side effect of a deeper problem and once the deeper problem is managed, the Tourette's stops being an issue. And my tics don't really bother me when I'm trying to sleep. The only exception is if I've taken something that messes with my dopamine, aka starting back on anti depressants or something more recreational. That is... just awful. You're tired, and you want to go to bed, but nooooo, your body needs to move. I've had to go out and sleep on the couch so my husband can get to sleep before. But that only happens if I've taken something that messes with my biochemistry, so it's easy enough to prevent. Esmerelda, has anyone ever just spotted it and known what it was without him having to tell them? I'm curious because I don't think that anyone has known that I've had Tourette's without me having to point out my tics. Effexxor fucked around with this message at 19:08 on Apr 1, 2014 |
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Apr 1, 2014 19:06
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Effexxor posted:Esmerelda, has anyone ever just spotted it and known what it was without him having to tell them? I'm curious because I don't think that anyone has known that I've had Tourette's without me having to point out my tics. When he was a kid it was far, far more frequent and other kids would make fun of him for it but I don't know if they ever specifically called it tourettes.
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Apr 1, 2014 19:42
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I have a weird sniffling/breathing thing that has stopped being as prevalent as I've gotten older and a stretching back/neck thing that has gotten worse (and makes me middle/upper back feel really tense, or I do it because it's tense? I don't know), but I've never really talked to my therapist about it because I don't want to come off as trying to self-diagnose myself or something, but I want to talk about it because the compulsion is frustrating and I want to stop doing it. I used to bite the inside of my mouth compulsively too (if it didn't feel smooth), but I've managed to get that under control/stopped for the past 5 months (so proud ). CBT for anxiety/depression has helped with it a lot, but I wonder if I should talk about it with her in that context. How do you bring that sort of thing up? Am I being hypochondriatic or something? I mean, I don't think I am. I'm not bandying about the "compulsive" part. I feel like I need to do these things and I feel off/more anxious until I do.
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Apr 2, 2014 01:42
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Gnossiennes posted:I have a weird sniffling/breathing thing that has stopped being as prevalent as I've gotten older and a stretching back/neck thing that has gotten worse (and makes me middle/upper back feel really tense, or I do it because it's tense? I don't know), but I've never really talked to my therapist about it because I don't want to come off as trying to self-diagnose myself or something, but I want to talk about it because the compulsion is frustrating and I want to stop doing it. I used to bite the inside of my mouth compulsively too (if it didn't feel smooth), but I've managed to get that under control/stopped for the past 5 months (so proud You should tell her. I flat out told my psychiatrist, 'Hey, pretty sure I have Tourette's, I have these tics', he agreed that yep, that was Tourette's, checked that they didn't really bother me and that was that. You should tell her, because she won't know enough to help you if she doesn't know. Your tics are ways that you are dealing with your anxiety, and she needs to know, just as she would need to know about your compulsive thoughts. And no, I don't think hat sounds like you being a hypochondriac at all, from what you mentioned, they sound like my tics. Anyway though, time for straight talk here, you might not be able to stop the tics. And if a medication for Tourette's stops them, the side effects of that might be pretty intense. Tourette's is something that you don't necessarily get over, it's something that you learn better to deal with. Go into it with a certain level of acceptance and get tools to deal with how you feel about them, and that'll help you more than anything else.
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Apr 2, 2014 06:57
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Effexxor posted:It's a pretty common thing for people with Tourette's to kind of... feed off of each other, in a way, because if you see someone ticcing? It's like if you see someone yawn, you have to do it too all of a sudden. I have no idea why it works that way. Anyway, actually having to think about suppressing has the exact opposite effect that you would really want. Jesus yes, I have a moderate case myself and a client who can has much more severe symptoms including coprolalia. He doesn't seem to notice when I'm ticcing, but being around him absolutely will set me off. Also reading this thread is pretty bad for it, I can't imagine writing it all out.
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Apr 2, 2014 06:58
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Gnossiennes posted:I have a weird sniffling/breathing thing that has stopped being as prevalent as I've gotten older and a stretching back/neck thing that has gotten worse (and makes me middle/upper back feel really tense, or I do it because it's tense? I don't know), but I've never really talked to my therapist about it because I don't want to come off as trying to self-diagnose myself or something, but I want to talk about it because the compulsion is frustrating and I want to stop doing it. I used to bite the inside of my mouth compulsively too (if it didn't feel smooth), but I've managed to get that under control/stopped for the past 5 months (so proud You should never not tell a doctor/phychiatrist about something. At the end of the day it's not their job to judge but to see if your concerns have any basis and confirm/disprove them. Also the doctors can't help if you don't say anything.
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Apr 2, 2014 12:31
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Hey OP, another Tourette goon here, I'm happy to hop in as well if that's okay. I was diagnosed when I was 14, and has never really mellowed out, I'm 29 now. Most of my tics are explosive jerky movements and contortions, with a dab of echolalia. I was medicated through my teens for it but as you mentioned, I found the meds too harsh and I've been dealing with CBT's ever since. I get set off by other tourettes sufferers ticcing as well. I don't drive, due to the fact that one of my tics which I find uncontrollable causes me to hammer the accelerator, usually at the worst possible time. How did you go with your treatments early on? I had terrible trouble with mine outside of anything but a therapists office. Tourette Syndrome where I am seems to have non-existant services for adults, and as a kid I had parents who believed that I would stop doing it if they hit me enough. The last time I was looking at medications for it I ended up in a movement disorder clinic for Parkinsons patients and stroke victims, and a doc that spent five minutes and gave me a script for paxim, which being a rail worker was a drug I shouldn't have been on. Effexxor posted:With suppressing the tics, it really depends on the situation and why I'm ticcing. In my general day to day life, the suppression is really on more of a subconcious level. By now, it's just what I do when I'm alone or comfortable, I just let them all go all at once. If I actually thought about it? It would basically be impossible. You know how someone says 'don't think about X' and all you can think about is X? It's like that, except even more annyoing. It's a pretty common thing for people with Tourette's to kind of... feed off of each other, in a way, because if you see someone ticcing? It's like if you see someone yawn, you have to do it too all of a sudden. I have no idea why it works that way. Anyway, actually having to think about suppressing has the exact opposite effect that you would really want. However, if I'm in the middle of a really bad wave of anxiety, I can make the word repetition tic stop by lowering my anxiety levels through CBT. When I'm like that, the Tourette's is just a side effect of a deeper problem and once the deeper problem is managed, the Tourette's stops being an issue. This, oh god This. I used to work with a guy who had a facial tic that would set me off. Whenever I had to talk to him I had to look away from him otherwise I wouldn't be able to get out a sentence without huffing and spluttering every ten seconds. He was confused at first but fine with it after I explained. Confused the poo poo out of the bosses though. Fuckface the Hedgehog fucked around with this message at 13:48 on Apr 2, 2014 |
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Apr 2, 2014 13:44
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ClothHat posted:Jesus yes, I have a moderate case myself and a client who can has much more severe symptoms including coprolalia. He doesn't seem to notice when I'm ticcing, but being around him absolutely will set me off. Also reading this thread is pretty bad for it, I can't imagine writing it all out. Haha, trust me on this, I have been a ticcy mess when I'm typing this stuff out. Not in a bad way because my tics don't really hurt me and it's more of just an annoyance, but I keep wanting to bend my fingers back as I type and bend my wrists and uuugh this last sentence has taken so much more than it should have because I keep having to stop and tic. Still though, I find this stuff really interesting and I really, really like talking to other people with Tourette's and finding out how much of the stuff that I thought was just a 'me being weird' thing is actually a part of Tourette's. So it's worth the ticcing. Thrasophius posted:You should never not tell a doctor/phychiatrist about something. At the end of the day it's not their job to judge but to see if your concerns have any basis and confirm/disprove them. Also the doctors can't help if you don't say anything. This, and especially with Tourette's. Like I said earlier, my psychiatrist from back in high school was an incredible psychiatrist, but he never recognized my tics for what they were. Also, I never really ticced in his office anyway because he had all of these cool gadgets that I could mess around with and keep my hands busy while I spoke to him, and also because I was a calmer person in my sessions with him. Some people are naturally going to see you tic more and some people will see you tic less, just by the nature of the disorder. The people that I lift with rarely see me tic because the actions of the lifts quell my tics but my husband probably knows more about what tics I do than I would. Plotterboy posted:Hey OP, another Tourette goon here, I'm happy to hop in as well if that's okay.I was diagnosed when I was 14, and has never really mellowed out, I'm 29 now. Most of my tics are explosive jerky movements and contortions, with a dab of echolalia. Awesome, more folks! And someone who doesn't just have a mild case, great! Echolalia is especially interesting too, are there any specific phrases that set you off? It seems like we had a much different time of it, in terms of growing up with Tourette's. For one thing, my tics didn't really get bad or vocal until I got started on SSRIs (Effexor, actually) in high school. I had always ticced before but no one really noticed and since I was a hyper kid anyway, my mom always just thought I was being a butthead. Then in middle school and high school, when my anxiety and depression slammed into my life, the tics also ramped up. Then, finally, effexor made my life feel worth living, but I just couldn't take hmphing until my throat and chest ached. There was one time in high school when I hmph'd for 3 straight minutes until I almost blacked out. I couldn't stop. I couldn't control my body anymore long enough to take in a deep, normal breath and it was absolutely one of the most terrifying moments of your life. People with Parkinson's and Lou Gehrig's disease and epilepsy, people with diseases/disorders where they loose total control of their body, are people that I have no small amount of empathy for because there is nothing that I've encountered that is more horrifying than that. The worst part of Tourette's isn't how people view you, it's the fact that you don't have enough control of your own body, which is really the only thing that we should have control over. Anyway! For treatment as a kid, I actually didn't have any specifically for my Tourette's and after SSRIs, my doctor decided that we should probably not try to mess with anti depressants and focused solely on treating my ADHD, which worked incredibly well. I was really lucky though. My dad got his PhD in neurobiology and understood what was going on better than I did, my psychiatrist was absolutely incredible and my ADHD and anxiety overshadowed my Tourette's so much that the Tourette's was always a secondary, minor thing. Kids in high school noticed my tics and would tease me about them a little, but the dumb, overreactive stuff that I did as an ADHD teenager gave potential bullies a much better thing to tease me about. Okay, so it's super interesting to me that you got sent to a place that dealt with Parkinson's mostly. I'm sure you probably know, but for the sake of everyone else, I'll explain why that's kinda interesting to me. Tourette's basically happens when the dopamine receptors are way too oversensitive to dopamine. It's not necessarily that people with Tourette's have more, it's just that it hits us harder than most. People with Parkinson's, on the other hand, have the opposite problem in which their receptors aren't responding enough to the available dopamine. You get the same type of effect, a motion disorder, but you have two completely different needs for treatment. Still, people who research Parkinson's are very interested in Tourette's research and it goes vice versa as well because that's probably where researchers will find a cure for Parkinson's. It seems strange though that you'd be treated by people that specialize in Parkinson's since the treatments are so different. And man, you have my condolences on the driving thing. I have intrusive thoughts from time to time when I'm driving, thoughts of yanking the steering wheel over and hitting a tree or something, but they're rare and I never feel like I'm actually going to tic and do it.
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Apr 2, 2014 17:05
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Okay, so work is quiet, so I figured I'd point out something that I missed/want to mention.Gnossiennes posted:I have a weird sniffling/breathing thing that has stopped being as prevalent as I've gotten older and a stretching back/neck thing that has gotten worse (and makes me middle/upper back feel really tense, or I do it because it's tense? .... I used to bite the inside of my mouth compulsively too (if it didn't feel smooth), but I've managed to get that under control/stopped for the past 5 months (so proud I actually wanted to point out that the 'tense back thingy' is actually a pretty good way to describe how I feel before I do a tic. It's like your muscles are tight and wrong and they have to be stretched to feel better. Except that a tic is nowhere near long enough to actually stretch the muscle out so it's not really a sensible need. The need to bite your cheek if it didn't feel smooth, that's another great way to describe it. You know that the 'need' doesn't make sense, who needs a smooth cheek, but it ian't smooth and you need to make it smooth and the only way to do so is to bite it. It's a weird way of thinking. Also though Gnossiennes, I know that you have a log in TFLC so I'm gonna throw a question at you, how does exercising effect your Tourette's? Also, putting a lacrosse ball on your sore muscles and rubbing up against a wall is a great way to make your shoulders feel better. I find that my tics get much, much worse if I'm uncomfortable, so stretching has been a lifesaver to keep my tics down.
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Apr 2, 2014 20:02
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Well, I'm seeing a therapist mostly to deal with trauma/past issues, and current anxiety, and I had an appointment today, but since we were discussing more in the way of that stuff, I never found a time when it felt right to bring it up. And yeah, that's EXACTLY how it feels. And it feels off until I do it and even after that, and sometimes I just keep going until it just hurts. Sometimes it feels right, sometimes it doesn't. Unfortunately, I haven't exercised in a while. Time constraints are part of it, and sometimes working out upsets my anxiety, which sucks.  I think the back stuff actually got better when I was working out more and doing crossfit and lifting, but it's hard to tell! I'll have time this summer to work out more, which I intend to do. Can therapists do diagnosis stuff? We have never talked about diagnoses or anything; just discussion of how anxiety affects my life and stuff. She's not a psychiatrist and the university psychiatrists take like, months to get into see. Question for you guys: do you do meditation? If so, do you have difficulty keeping still during meditation? Sometimes I can do it, sometimes I can't. Sometimes it really helps keep it down, sometimes I feel super frustrated trying not to move. I've taken to meditating lying down because I don't feel quite as compelled to stretch/pop my back, but I still do it with my neck which makes me worried that it's not good for my neck at all. I get paranoid that I'm loving up my spine.
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Apr 2, 2014 23:31
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Gnossiennes posted:
When I was younger I occasionally used to do a weird kind of meditation/suppression thing that I'm struggling to describe. Did anyone have any odd OCD rituals like "Ok if I tap my left foot twice I'll make this next basket"? No one really believed it, but I remember that being a thing when I was a kid. Anyway I remember I would sit and try to consciously suppress all my tics for a fixed period of time like 30 or 60 seconds. I can't remember what the purpose was, if it was for good luck or something, I know I did it before I knew what my tics were.
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Apr 2, 2014 23:39
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Echolalia is odd. What usually happens is I will hear a word that sparks an interest, and then I go though the whole tic process of building discomfort until I repeat it. It can be annoying at times but i can usually work it into a sentance or at least hold it until I go somewhere. You're spot on with the Parkinsons thing though. Early on the treatment for Parkinson s and tourettes where very similar. Dopamine regulation would be controlled medically by various drugs and mood stabilizers where thrown in the mix. But in TS that was just trading tics for the shakes and a mind fog, which is why you have a lot of older sufferers who flat out reject the drug regimen. Hell, even the surgical treatment, deep nueral stimulation, is the same between Parkinson's and TS. One of the good neuro's in my city did a big talk on the process which is on YouTube. When I'm not phone posting I will hunt it out. The whole not driving thing is a non issue for me, I'm in Melbourne, Australia and we have a pretty good public transport system. Its just with my tics being what they are driving a car is like driving a vehicle from within another, different vehicle with lovely steering. Not to say I can't, and i probably drive better than some of the chucklefucks around here, but its not the greatest idea in the world.
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Apr 2, 2014 23:58
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ClothHat posted:When I was younger I occasionally used to do a weird kind of meditation/suppression thing that I'm struggling to describe. Did anyone have any odd OCD rituals like "Ok if I tap my left foot twice I'll make this next basket"? No one really believed it, but I remember that being a thing when I was a kid. Its sorta, sorta not. Tourette is a bit of a buffet of DSM issues so there are a lot of things that its sorta like, but it can be varied from person to person. Tics are sorta like sharing your body with a 2 year old. Every now and then it triggers and foes the whole MUST HAVE NOW tantrum. It's not so much a feeling of "if I do this I will make the shot" as it is more of a feeling of "if I don't do this now the compulsion will build up further and further until it bursts out without any control. My tics tend to be violent, so I tend to do things to try and slow the down to stop me from hurting myself. Even then, due to ticcing I have limited movement in my neck. Sorta like letting out a sneaky fart so you don't crap your pants. Where tourettes ties into ocd and anxiety is that a lot of the time, the tics in question are a bad thing to do at the time at hand. For example, shouting in a quiet store, flailing arms during conversation, I have a tic that rears up at work meetings where it looks like I'm constantly yawning. This can cause distress and make the tics worse, turning into things like what OP said earlier about harumphing until she nearly passed out. So in short, its different triggers creating a similar reaction.
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Apr 3, 2014 01:06
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Gnossiennes posted:Can therapists do diagnosis stuff? We have never talked about diagnoses or anything; just discussion of how anxiety affects my life and stuff. She's not a psychiatrist and the university psychiatrists take like, months to get into see. Meditation is basically like hell for me. Having to conciously sit still and not move is kind of the worst thing that you can ask someone with ADHD to do, and the antsy need to tic from the Tourette's just makes it even worse. I've managed to do it before a few times, but honestly, it's a massive hassle. I do get a definite 'zen' feeling from lifting though, my mind just shuts up and I get this... still feeling in my body. There's this thing called the 'flow experience' in psychology, to describe the feeling when you are totally immersed and happy in an activity. Basically, it's this feeling where you're in this perfect groove and you feel productive and everything just seems to fit into place right as it should and there's this wonderful absence of anything but satisfaction. And my tics, for that moment, stop. When I mentioned the data entry stuff at work and how it was peaceful? It's because I feel 'flow' then. I also think that it's how Oliver Clark's surgeon is able to do his surgeries, because he gets into the flow and his body is able to relax enough. ClothHat posted:When I was younger I occasionally used to do a weird kind of meditation/suppression thing that I'm struggling to describe. Did anyone have any odd OCD rituals like "Ok if I tap my left foot twice I'll make this next basket"? No one really believed it, but I remember that being a thing when I was a kid. One of the good things about being so freaking ADHD is that I was never able to really keep focus long enough to obsess over things like that. I might have thought about it as a kid, but the thought would last about 10 seconds before I got distracted over something else. I have some compulsive issues, but I don't think that I'm really OCD because I can switch off of the obsessive feelings so quickly. If you're comorbid with Tourette's and OCD, I can imagine that it's a completely different story though, and that your tics would be a prime subject to obsess over. Plotterboy posted:Echolalia is odd. What usually happens is I will hear a word that sparks an interest, and then I go though the whole tic process of building discomfort until I repeat it. It can be annoying at times but i can usually work it into a sentance or at least hold it until I go somewhere. I would actually really love to see that video, the science behind Tourette's is disturbingly interesting to me. Plotterboy posted:Tics are sorta like sharing your body with a 2 year old. Every now and then it triggers and foes the whole MUST HAVE NOW tantrum. It's not so much a feeling of "if I do this I will make the shot" as it is more of a feeling of "if I don't do this now the compulsion will build up further and further until it bursts out without any control. My tics tend to be violent, so I tend to do things to try and slow the down to stop me from hurting myself. Even then, due to ticcing I have limited movement in my neck. Sorta like letting out a sneaky fart so you don't crap your pants. I have some pain in my elbows from doing some really heavy bench pressing for an upcoming meet and from typing all the times, and since I'm uncomfortable, my ticcing in my elbows has started to ramp up, which helps nothing. So I empathize with the neck thing. Also, I really love your descriptions because holy mother of god, 'like you have a 2 year old in your body throwing a tantrum' and 'like letting out a sneaky fart' are absurdly accurate. But yeah, it's a pretty vicious cycle when you're ticcing, and you're getting a little freaked out by the intensity of it, which in turn makes you tic worse and so on. That's a part of why CBT is effective with Tourette's because it works on that anxiety about the tic itself. I'm very lucky that my tics are subtle, I can basically tic all the time and no one really notices me blinking alot or rolling my lip up or bending my wrist. And since I can tic all the time, I think it reduces the severity of them. When I have to be 'on' and can't tic, i.e. doing a presentation or in a situation where a lot of attention is put on me and I have to make a good impression, my tics get more severe when I'm actually able to be alone. It's part of why call center work is very good for me. I can tic all I want, no one's going to see me except for the people who sit around me and they don't care. Plotterboy, have you tried not suppressing and seeing if the tics become less noticeable? Or is it one of those situations where no matter what, they're going to be noticable and painful for you, so it's better to try and limit them?
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Apr 3, 2014 16:49
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Not suppressing is difficult as for a decent period of time early on my folks decided to cure me of tourette though beatings. What I found helpful was I was able to modify a lof of my destructive tica by slowing the action down to a point where they where essentially stretches and still get the same release. This method turned out great because now I can hyperextend my shoulders and gross people out. Edit: the lectures I was talking about where taken offline, which sucks because Peppard has a great humor. In a serious lecture he explained DBS as "we stick electrodes in a patents brain, pump 50000 volts through them, and see what superpowers they get." All completely straight faced. Fuckface the Hedgehog fucked around with this message at 02:01 on Apr 4, 2014 |
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Apr 4, 2014 01:52
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Really interesting thread OP. Thanks for starting it! I want to add that I dated a guy in high school who had Tourette's, and it was fascinating to experience so closely a condition that I only had ever seen negative/comedic depictions of. He did have a pretty good sense of humor about it though, and that seemed to help others around him feel more at ease. In his case, it was mostly vocal, and he would suddenly shout 'poo poo' or 'gently caress' but sometimes just 'BOOP' and occasionally there might be a jerking motion at the same time. It seemed like it would snowball sometimes if he was upset. I wonder if the tics can catch you off guard? He was such a great guy and really fun to be with, but generally speaking he seemed to feel uncomfortable in meeting new people because of his tics.
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Apr 4, 2014 19:20
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