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I went and saw the doctor yesterday. I like him a lot, though it's pretty obvious that he has much more experience with ADD than Tourette's, though he still had a good understanding on echolalia and how that worked with intrusive thoughts. So it seems like the bulk of my neurofeedback is going to be more focused on getting my frontal lobe to start working right to reduce my anxiety, which should trickle down to calming the Tourette's. Thanks for the warning on the timeframe too, Plotterboy.shelley posted:I'm not diagnosed with Tourette's or OCD, but I definitely have compulsions, all physical and mostly about "maintaining symmetry". Reading this thread made me realize that my thing with symmetry isn't just me. Thanks, thread. OCD and symmetry are really interconnected, I think that's more of an OCD thing that necessarily a Tourette's thing. Shithouse Dave posted:I hadn't noticed this thread before, but it is interesting. That 'itch' feeling describes a thing I get with my legs. I have what I think might be restless leg syndrome that started when I first went on SSRIs and it feels just like that, especially when I'm sitting or trying to sleep. It's a thing I've never remembered to tell my doctor, because when I'm out and about doing stuff it doesn't really happen. Resisting the urge to jiggle my leg or flap my foot is really uncomfortable. When I first went on fluoxetine, I was repeatedly flexing my glutes while trying to sleep and I was really embarrassed about it when sharing a bed with another person cause I was worried it would look like humping. I've kinda toned it down to a repeated foot flapping kinda thing over the years, and sometimes I think it feels like when a cat waves its tail around. Hey there, echolalia buddy! Echolalia is basically the need to say or repeat something that you either hear or think of in your head. So when you hear the boops of a checkout and want feel how that feels to say? That's echolalia at work. I tend to get mine from the intrusive thoughts that pop into my head, like if I'm anxious about something, I'll repeat that word over and over. I actually wrote something as a 'snap shot in my life thing' that might kinda explain the shower thing and my echolalia, so. Here it is. 'My alarm goes off and as I open my eyes, anxiety raises into my throat. I know what I need to do, but all I want to do is stay in bed. But I have to get to work on time, so I drag myself out of bed to steel myself for my ordeal. I have to take a shower. My head is still hazy from sleep as I stumble into the bathroom. I slip off my glasses, thinking about how stupid this all is and as I set them down on the counter, I realize that I'm speaking. "Dumb dumb dumb dumb." I mutter like a mantra, vaguely recognizing that I shouldn't be calling myself that. I start to make a hooting sound, pushing the air out of my lungs and my shoulders relax. As I step into the shower, all I can think about is how much I hate this cycle that I'm stuck in. I get stressed about taking a shower because I tic in the shower, and I tic in the shower because I'm stressed about it. I try to hurry up but my hair is thick and the battle in my head is going strong. I've tried to contain my tics and swallow them before they leave my mouth, but my hands then start to twitch and my physical tics take over to release all of that nervous energy. Not wanting my hand to twitch at the wrong moment, I prefer to let the sounds spill from my lips and keep my body as mine, at least for a few moments. Sounds are easier when I'm alone, small hoots and grunts, but my anxiety is bad this morning and I find myself saying, "I want to die." I know what this is. It's my mind's reaction to stress, to think of that ultimate solution and I'm aware that this thought is irrational. But the words keep spilling from my mouth and I am stuck in this curtained bathtub and I still need to rinse the conditioner from my hair. As I finally step out of the bathtub, walking through my cognitive behavioral therapy steps, I'm struck by how heavy this all is. I wipe the foggy mirror off and look at myself through blurred eyes. There's one tic that I know will stop the thoughts and I don't want to do it, but I watch as my fingers make the shape of a gun. I open my mouth and tap the top of my mouth with my two fingers, pulling my thumb down. I calm down despite how much I hate that motion. I do not want to die, but the spiteful creature in my head that acts up and throws tantrums with my nervous system doesn't seem to know this. I dry myself off, get dressed and head out the door like nothing happened. I have a life to live that is far bigger than the confines of my bathroom walls.' Kinda cheesy, I know. But. That's what my tics have been like lately. It was even better when a friend I've known for literally years confided that she had tics too, though her OCD was much more prevelant than mine and she didn't really have echolalia. Still, it got to the point where we had to turn away from each other from a moment so we would stop ticcing because we both were just so excited to find someone else like that that we both got really set off. Seriously though, I'm shocked that I never picked up on it.
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Dec 6, 2014 22:05
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Effexxor posted:
Thank you for sharing this, it is a really interesting insight into both the process of ticcing and the daily challenges of moving forward with life.
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Jan 8, 2015 02:34
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aequorea posted:Thank you for sharing this, it is a really interesting insight into both the process of ticcing and the daily challenges of moving forward with life. Hah, no problem! Compulsive thoughts are great.  That being said, neurofeedback is going really well, though I have started compulsively popping my ear drums by yawning and doing this sniffly thing that's left my throat and jaw sore as gently caress. This is a first, as my tics have never really left me this sore before. So fun.
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Jan 9, 2015 03:19
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 Welcome to the club. Glad to hear neurofeedback is going well for you though.
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Jan 9, 2015 17:06
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Just wanted to thank everyone for sharing their stories in this thread. Chalk me up as another person who thought Tourette's was all about cursing like a sailor and having crazy violent tics --- now I'm much more informed! I used to run sound for a local theatre, and often worked with a director/actor who had a few tics (shoulder hunching and the occasional arm flap). I thought she had some form of Tourette's, but it always baffled me that she'd tic when talking to me in the soundbooth, but then would seem cool as a cucumber when onstage. Reading these stories about ticcing in private to release, suddenly that makes a lot more sense. Also (just spitballing here), maybe because she was acting a role other than herself, she was able to get past her tics while onstage? Glad you found a nice therapist, Effexxor! Hope the biofeedback continues to work for you. 
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Jan 9, 2015 23:22
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That "I need to tic"-feeling sounds oddly like the (extremely benign) restless leg thing I've apparently inherited. I get a feeling somewhere between an oncoming cramp and an ongoing tickle in one or both legs, which is dissipated by walking - or by bouncing my leg. Especially the latter, which is usually the first thing I consciously notice. I can stop, but forcibly holding my leg still feels ... wrong.. Not that anything bad actually happens if I do. So, yeah, I'll now imagine Tourette's as having that kind of itch to do a specific movement.
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Jan 12, 2015 16:45
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Computer viking posted:That "I need to tic"-feeling sounds oddly like the (extremely benign) restless leg thing I've apparently inherited. I get a feeling somewhere between an oncoming cramp and an ongoing tickle in one or both legs, which is dissipated by walking - or by bouncing my leg. Especially the latter, which is usually the first thing I consciously notice. I can stop, but forcibly holding my leg still feels ... wrong.. Not that anything bad actually happens if I do. Yeah, pretty much.
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Jan 12, 2015 19:54
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I have TS and wanted to weigh in and also have a few questions for the OP. I am 29 and at this point I can mostly manage all my tics so they wouldn't be noticeable to a casual observer. They definitely get a lot worse if I am anxious or bored and disappear almost entirely if I am engaged in something that requires my focus. My most prevalent tics right now are: I get an urge to push down hard on the pedals while I am driving but I alleviate this by just pushing down on the floor next to the pedals. I need to hunch my shoulders in an upward circular motion. I bite my lip where there is a tiny irregularity that drives me crazy. This is a new one I've only been doing for around 6 months since I got this tiny scar on my lip and now I worry that eventually I will do it so much that it will mess up my lip and make it look like I have herpes. This worry makes me have to do it more. Interestingly a while back I busted my lip open and having an actual painful problem with my lip made it so I didn't have to bite any more. Once it healed I started biting again. I feel like I need to sniffle a lot. This gets really bad if I am about to go on a date or a job interview or something and it builds in intensity up to the last moment so Ill be sniffling a ton right until the girl answers the door or whatever. Then all of a sudden when I am in the situation I was stressing about and actually have to engage with the person I forget about tics and they disappear completely. Now some comments and questions I had for the OP and others in this thread. First of all if I take adderall or any other stimulant it makes my tics 10x worse so I was wondering if you ever considered that your prescription might contribute to your TS. I also want to know more about the relation between tourette syndrom and anxiety disorders because like I was saying its really obvious that my tics are directly related to anxiety, but I have a hard time figuring out if my level of anxiety is "normal." Like obviously its bad enough that it is giving me tics but I don't know how anxious a person is really supposed to feel before a first date or a job interview.
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Jan 12, 2015 20:35
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JacquelineDempsey posted:Just wanted to thank everyone for sharing their stories in this thread. Chalk me up as another person who thought Tourette's was all about cursing like a sailor and having crazy violent tics --- now I'm much more informed! Yeah, the thing with the theater director definitely sounds like she's getting all of her tics out in a private space with people she's comfortable with, but 'controls' it when it's showtime and she needs to not tic. Probably the focus that she's having to call on when acting and controlling what her body is doing is also helping a lot, doing physical actions tend to quiet tics. And thanks! It's been interesting and I am finding myself a lot more able to access a calm feeling. Hasn't done much for my tics but we haven't really been focusing on them much. I think I'm an interesting oddity for him since I'm the only person with Tourette's that he's worked with who isn't a pre adolescent boy. Women out of the teenage years with Tourette's are surprisingly rare. Computer viking posted:That "I need to tic"-feeling sounds oddly like the (extremely benign) restless leg thing I've apparently inherited. I get a feeling somewhere between an oncoming cramp and an ongoing tickle in one or both legs, which is dissipated by walking - or by bouncing my leg. Especially the latter, which is usually the first thing I consciously notice. I can stop, but forcibly holding my leg still feels ... wrong.. Not that anything bad actually happens if I do. Bingo! I do the leg bounce thing too and I've always thought of it as a tic. KingAsmo posted:I have TS and wanted to weigh in and also have a few questions for the OP. Oh god, take out the pedals one and I have those same tics. I had a crack in my lip that wouldn't go away for months because I just kept worrying at that little bastard without thinking about it. And yeah, the sniffles/eardrum pop tic always leaves my throat sore at the end of the day but I just struggle to get it to stop. The jaw popping tic has actually relaxed though, which is awesome because my jaw was starting to really ache. As for the Adderall, it actually helps with my Tourette's. ADD makes me hypersensitive to sensations, like a tag on a tshirt or an itch or soreness and I get hyperfocused on how that feels. The Adderall helps a lot to keep me from getting stuck in that hyperfocus and in fact, after I started taking it, my loud 'hmph' tic's frequency plummeted. Plus, when I'm out of control and unable to focus or do normal adult things like focus on things that I don't want to, that stresses me out and the tics emerge. There are non stimulant ADD meds but Adderall has such a good effect on my brain that both my psychiatrist and I don't think it's worth it to change. With the whole anxiety thing, I also suck at measuring my own anxiety and generally have to rely on my body to let me know when something's up. But in terms of measuring how bad your anxiety is and whether it's 'normal', normality doesn't really matter in this instance. What does matter is whether or not your anxiety, and it's side effects, are a big enough concern/annoyance to warrant treatment. I will likely never take medication specifically for Tourette's because the side effects outweigh the possible benefits, but I will totally do therapy like biofeedback to learn how to calm myself down and reduce anxiety. Basically, do a cost benefit analysis and take a look at what you would like to get out of potential therapy vs. the cost, both financially and physically. If it's worth it? Go for it. If it's not worth it? Don't do it. In either case, anxiety is so relative that what would feel like an anxiety attack to me might feel like somebody's bad day, so it's kind of pointless to try and measure it. On an unrelated topic, I noticed a tic in a non human creature for the first time. My dad has a dog with pretty severe epilepsy who is on an impressive amount of medication and I noticed today that she was smacking her lips in this slightly obsessive way that reminded me of my jaw tic. I asked my dad (PhD in neurobiology and who takes this dog to a canine neurobiologist) and he confirmed that yep, she was ticcing and that it tends to pic up before she has a seizure. So I made sure to give her some extra cuddles in the interest of ticcy solidarity. 
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Jan 18, 2015 05:41
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