View Full Version : Wondering HOW it FEELS to have a tic (TS / Tourettes Syndrome)


GirlDriver
08-31-04, 01:48 AM
I am a newbie and have read many of the posts here, but am wondering what the "onset" or "urge" to tic feels like?

Is it anything like the anxiety an OCD person might feel prior to acting on the obsession? Is it a mental or physical "urge?" If a person stifles a tic, will that cause anxiety until the tic can be released?

Also, has anyone experienced that certain tics occur in certain environments? I have observed a throat-clearing tic that only occurs at home on the sofa, maybe watching T.V. Does that seem odd?

analog guy
08-31-04, 02:04 AM
I have suffered with very mild tics as long as I can remember. They mostly come with stress, but when I have the urge, fighting it is useless. To fight it, I have to think about it, when I think about it, the urge is stronger. It is very much a positive feedback mechanism with me.

Think about it this way *and I'm sorry if it is gross*

you have an irritant in your nose. You want desperately to brush your nose with your hand to make the sensation go away because you don't have a kleenex handy. so you wrinkle your nose. That makes it worse. Now you REALLY want to brush your nose. People are watching, so you dare not be rude, but the urge to DO SOMETHING is mounting. that "sensation" of desperate irritation is how it feels when I have an urge to "bounce" my eyebrows up or click my throat. sometimes it feels like when you try and hold your breath for a long time. Right before you gasp in air, there is a moment when your brain is screaming at you to do something you are conscientiously forcing yourself not to do. Eventually you will lose, and that instant right before you do lose to your involuntary system, while you are still trying to hold your breath in, that is what it feels like to fight the tic.

In high school I used to bury my head in my folded arms an release a burst of pent-up "tic" energy that I had been holding in for 10 or 15 minutes. After a few moments, the orgastic release would pass, and I would be o.k. for annother 10 - 20 minutes. Mind you, this was all just to fight a very mild occasional twitch of the eyebrows. I'm sure few would even have noticed..but I knew, and trying to fight it amplified the eventual loss to the urge. Like breathing; a few gentle breaths will suffice, but if you hold them back long enough, you end up with a giant sucking gasp that draws everyones attention.

Jellybean
08-31-04, 02:39 AM
I wonder a lot about tics too,

I constantly have little needs to wrinkle my nose and stuff, but it always seems to be for a reason. Lots of other ones. But I think in my case it is just a case of my constant distractions, overactive nerve endings.

Lately I feel my teeth the inside of them with my tongue a lot because a little jagged area in a couple places seems to perplex me. I lately wonder if I am a borderline tic-er.

analog guy
08-31-04, 02:47 AM
I am no tic expert. I just have some.

I don't think a tic is a stimuli driven response. If you have something between your teeth and you keep probing it with your tounge trying to dislodge it, that doesn't sound like a tic to me - most normal people would do that becuase it is bugging them! I twitch my eyebrows sometimes or click my throat because it just happens, and the more I am aware of it, the more intensified the effect. I am controlling it, it isn't like my heartbeat or digestion, I just can't control NEEDING to do it. Like I said, I control by breathing (this second versus three seconds from now, deep shallow, etc.), but I have no control over needing to breath: if I don't, my body will for me. If you can't stop yourself from doing it if you don't want to do it, then I think maybe it is a tic.

charlie
08-31-04, 09:37 AM
This is interesting to me. My youngest @ 10 has twitches that I've been trying to 'figure out'. Spoke to a nurse yesterday asking IF this is a tourettes is it controllable? Nurse says no tourette twitches are 100% not controllable without meds.

I may not be talking about the same tics this post is about...but I'm interested in learning more.
running late gotta go,

Piupau
08-31-04, 09:08 PM
For some tics aren't controllable at all. But it's like trying not to sneeze, blink or like brush your nose, like analog guy wrote (Love that one, have to save that quote! :D )

I have some control over my tics, I can delay them until it's ok to tic. (Not like many HOURS, but 5-60 minutes) And sometimes when I feel I have to tic I do it once and the stop it. (not many ppl react if you jerk your arm or head just once) It's like when you're really really thursty and drink just a little sip, it makes you manage for a couple of minutes more :p Now someone thinks... how on EARTH do you delay your tics for 60 minutes? I tell you. Go see a doc! ;) But I was a complete freak after I left his office. I jerked my head backwards and ran and jumped like a monkey at the hospitel. Luckily noone thought I was a "runaway" from the psych ward :D *g*

How it feels to tic? Well, I usually get some kind of "warning" it's coming. it's like som kind of tingeing or something. I know my head is about to jerk when I feel it in my neck. It's like if you try not to blink, soon you'll feel in your eyes it'd feel very good to blink, it will feel like cold or itching or something. I have a tickeling feeling in my palms when I have my clap hands tic, the tickeling only disappears when I've clapped hard enough and when it feels right.

For you who are wondering how it feels... have you ever had jerks in your legs or arms when you're falling asleep? (compltetely normal to have)! Try to stop it :)

GirlDriver
09-02-04, 02:39 AM
Dear P,

Excellent analogy about attempting to stop jerking legs or arms when falling asleep. This explanation of the tic sensation is quite easy to understand. And hell no! I cannot stop those sleepy-time jerks, and they are frightening!

GirlDriver

Dex
09-02-04, 06:25 AM
I'm a bit of a computer nerd and I have transfered some tic energy into mouse clicks... no I'm being serious. I just keep clicking the screen all over the place. Sometimes I have to make a clear space on the desktop so I don't start something by clicking on it. When browsing the web I keep the pointer on the white spaces on websites so I don't accidentally click links, ads etc....

sam
09-02-04, 08:35 AM
I don't have tourettes (or at least not diagnosed..) but I remember as a kid I used to have the most awful tics! I used to squeeze my eyes close, think blinking but longer and with more applied blinking. Used to scruntch up my face at times too by doing the eye thing but at the same time "smiling" as hard as I could. I still raise my eyebrows from time to time, but used to be worse back then. I haven't had any -major- tics for years, but it was -exactly- like analog guy explained: I remember that the more I thought about it, the more of an urge I'd have. The longer I waited, the more dramatic tic I'd -have- to do. It really sucks when your peers ask WHY you do that, but luckily I could hide mine most of the time.

The weirdest tic (thing?) I ever had was an unexplainable urge to jump and bend my legs as much back as possible. Got kicked out of music class for doing that once haha. Took me a while to get over that, but I just about used every ounce of strength I had to stop as it drew -way- too much attention to myself. The "weird" kid who'd just moved from Cananda didn't need the extra attention ;)

Hmm, now that I think about it.. maybe I should read up a bit more about tourettes..

aularian
09-02-04, 09:05 AM
hey sam yeah i know what you mean it's hard when your peers ask you why you do it. The worst tic i have is this twitch of my nose, just because i do it ALL the time, it even annoys me. And i was convince by my mum as a kid that it was a habit i had that started with the fact that i have bad hayfever (of course now i know that is not true but she won't believe that). And people always asked why I did it. And the answer always was "I don't know". Which doesn't help their knowledge or mine. I think just recently it started to make a bit of sense...

sam
09-02-04, 09:47 AM
Back then I had no idea of anything like ADD, so I just dismissed it as a habit and told others the same thing. I don't know, maybe it was because I haven't really had any tics in years. It's only when I think about it that I get a tiny urge.

Piupau
09-02-04, 03:01 PM
Sam, that was really funny, I can see you doing that jump! :D One of my worst tics I've had I had 2 years ago, I made piruettes! It was really awful, I was walking in the mall or something (where it was LOTS of ppl of course) and then suddenly I started making piruettes while walking! I didn't know what tourette's was yet and thought I had gone crazy... and so did everyone else! :p I've also been spitting... even in my car, but it doesn't bother anyone but me :D

Dex
09-03-04, 01:09 AM
When I was a kid I had this facial tick where I'd open my mouth as wide as it could go so the skin around my mouth would stretch tight an I'd bunch up all my neck muscles all at once.

Some people found it alarming

hahahahahahhaha

oh man it feels great to reveal all this stuff and laugh.

aularian
09-03-04, 02:26 AM
yeah it does. because my whole life i have been so negative about it all i don't talk about it to anyone. maybe because they don't know what tics are or why you can't stop them. its nice that here others do.

Sometimes I also have the urge to jump or clap or kick my legs or twirl around :) But I don't think it's as much a tic as my facial ones, just some overwhelming urge that I can control if I have to...

charlie
09-11-04, 08:29 AM
I want to thank all of you who have shared what it feels like to have a tic.
Hard to believe even the nurse & psychologist I spoke with said TS could not be repressed:( Shows how little training they have in this, ..sad. IF I would've listened to them I would still be bribing/pleading with my son to just quit doing that!

After being ridiculed at school I was so glad DUE TO THIS FORUM that I was already 'read up on' this and could help him thru it. My son has appt next week.

Thanks again this is truly a great learning resource!!!

Energizer_Bunny
09-11-04, 10:02 AM
Analog guy,


That was an excellent description of tics and with TS a lot of us try to have a sense of humor, so me being one with TS, I have to laugh at that one. The reason, is that I have that particular tic. I have for years to the point that it is totally embarassing. I was at work the other day and my office mate saw me do it and she said "I saw that" and I said well it is a tic.

Actually, I talked to my neuro about it and it is called an obsessive compulsive tic. It bothers me enough that I get botox injections on the side of my nose to kill the sensation. It lasts about 3 months. I even skipped a treatment to make sure that it was all not "in my head" and sure enough it wasn't in my head because it came back full force. After that I received another injection and noticed a great imporvement but lasting only about 3 months. Botox can last anywhere from 3-6 months.

Also, TS is can be stimuli directed. Sounds, smells, touch, can set tics off. If I receive an unwanted touch I can start handflapping, etc. Even music, which is sound related can start me ticking.

And welcome to our little corner of the TS world!

Sherry

Christiana
03-24-05, 10:43 PM
wow you guys, this was a great thread! I used to know someone with Tourettes and I've always wondered what it was like. These were some excellent descriptions... it's cool that we have the forums :)

Little_Rivkah
03-26-05, 02:37 AM
Sometimes mere suggestion will start a tic. ^_^; Like someone said something about clicking their mouse all over the screen and I suddenly felt compelled to do the same. Hmm . . . Otherwise, to me, it feels like the tic "starts" without me even knowing it (it just kicks in) and then it has this mirrorlike effect. I wiggle my right toe . . . then I HAVE to wiggle my left toe . . . then I HAVE to wiggle my right toe again . . . and I keep going until it's "evened out." Or whatnot.

You know how you hear a song with a really good beat and you start tapping your foot without thinking? It's kinda like that but with no music.

Geise
05-22-05, 06:27 AM
I screw up in computer games when I have to do my finger rubbing/tensing tic...the finger happens to be my clicking index :( I can't effectively use the small buttons by the wheel in a game because I feel I need to rub my finger across them...

Anyway, I can describe the sensation to tic as a sort of intense anxiety with a wierd urge to satisfy it with a particular feeling or movement. Sometimes it will be the strong need to finish a song in my head (or vocally by humming), or the need to touch or tap things evenly and symetrically (if I run my hand down a chain link fence while walking, I'll need to do something similar in feeling with my other hand or the "urge" will build-and the "urge" is most unpleasant and aggravating :))

Imagine the "urge" as a similar sensation to when you hold your breath. You feel increasingly like you need to satisfy your need to breath. A tic is like taking a breath. I never could understand why I get the "urge", but I have learned "tricks" to reducing it (like training myself to turn the urge itself into a self satisfying tic-which has been very succesful for public places, but not so much when I'm alone in my home, since I'm more relaxed an less focused)

Oh btw, Hi everyone :D

aularian
05-30-05, 08:46 AM
Geise, I'm totally with you on some of those tics you mentioned. I have the symmetrical thing which is getting much worse, and the whole needing to finish a song thing. I have been wondering lately if they are more of compulsive behaviours than tics? I don't know if there's even a difference..

But I was more intrigued by what you say about turning the urge itself into a self satisfying tic. I have many facial tics which I would love to subside. Any advice at all is welcomed. How exactly does this work for you?

Spring
06-28-05, 01:38 PM
I am a newbie and have read many of the posts here, but am wondering what the "onset" or "urge" to tic feels like?

Is it anything like the anxiety an OCD person might feel prior to acting on the obsession? Is it a mental or physical "urge?" If a person stifles a tic, will that cause anxiety until the tic can be released?

Also, has anyone experienced that certain tics occur in certain environments? I have observed a throat-clearing tic that only occurs at home on the sofa, maybe watching T.V. Does that seem odd?
My husband has TS... his are worse when he is relaxed, like watching TV.... typically he is only vocal at these such times. Strangly, his tics are worse when he is relaxed. When he is in a new environment... or we are out in public... somehow he doesn't have them... but when he is relaxed, in a comfortable environment, they are worse.

prettymonster
08-07-05, 05:21 PM
I was googling medication for Tourettes because I have it and i've found with the huge amount of stress i'm under right now i'm having a ton of trouble controlling it.

Well I came across this and woudn't normally have joined but I was laughing so loud at Dex's posts the kids think i need to be locked away lol

I do that SAME thing with the computer, I'm a geek too eh? There's times i have to step away from the computer cause I keep clicking things...

I've found things that make noise ...repetitive noise seem to help calm the tics. Like tapping on a drum or clicking a pen.

Anyways...I'm new, HI!

adhdxyz
08-07-05, 08:25 PM
I have adhd. My husband has add. My 12 year old son has adhd. We are all medicated. My 14 year old daughter shows signs of adhd but is not yet diagnosed or medicated.

I have only been reading up on tics for the past month or so and we definitely have tic issues in our family.

When my daughter was young, perhaps 5 or so, she went through a phase of shooting her tongue out of her mouth like she was a frog catching a fly. It was the strangest thing and she eventually stopped doing that.

I have always been a sniffer. I have sinus trouble and have had 2 sinus surgeries but the more I read about tics, I am thinking that my constant stiffing is more of a tic than a sinus issue. Since I started Adderall, I have also started doing two tics. One was mentioned in one of the threads. I constantly feel the back of my bottom teeth with my tongue. Plus I have been pulling my bottom lip into my mouth like I am biting it. I am not biting it but I am holding it for some reason. My sister constantly tells me to stop. :)

My husband remembers that when he was young he made strange tic noises. He can't remember the type of noise but remembers his 7 brothers yelling at him constantly to stop.

My dad has this tongue thing going on especially when he is doing something like painting. He chews his tongue. (I have been known to do this in the past also.)

My son has gone through several different types of tics. The eye blinking, the throat clearing, the grunting, licking of the lips, biting his lip, and sniffing to name a few. The tics come and go.

We switched him from Metadate to Adderall in June at the same time we lowered his Respirdal. He did good for a few weeks and then came the horrible noise tic. He did it constantly around the clock. Low grunting/throat clearing. The doctor put him back on Metadate and we upped his Respirdal dose to what it had been. The constant non-stop tic improved but it is still happening.

We went to his doctor last Monday and he didn't make the tic noise even one time while there. His doctor said to give him another Clonidine at night to see if that helps with the tic and we will check back in 30 days. He starts school in one week and we are praying the tic goes away. It is very annoying and distracting.

I have been reading about tics and tourettes all weekend and have learned so much. I am going to check into several of the things that have worked for some people.

Today he started taking a daily vitamin once again. Several websites mention specific vitamin companies and different vitamin combinations that include magnesium and calcium. We are going with a multi teen vitamin and I will check at the store tomorrow for magnesium and calcium supplements.

We recently discussed his wanting to loose a little weight anyway so he is cutting back on bread, chocolate, cake, cookies, soda, and icecream. I read a few websites that said milk and chocolate cause tics in some people.

I am going to seriously check into an allergist to make sure he is not allergic to something that causes the tic. The doctor said it may be seasonal since it comes and goes and may not be related to changing him to Adderall and lowering his Respirdal.

I read about the Clonidine patch that supplies clonidine throughout the day that helps some people control tics. He has taken Clonidine for years for adhd/behavior and for helping him sleep at night. Today, rather than giving him 2 clonidine at night, I went ahead and cut one of his nighttime clonidine pills in half and gave him 1/2 with his morning medicine (Metadate, Respiral and Zoloft) and the other 1/2 with his afternoon medicine. I noticed a slight improvement but I may be imagining this. He took a nap around 530pm, which he doesn't normally do but it was hot out and he was bored so he may have taken a nap even if I hadn't given him 2 clonidine halfs throughout the day. Who knows.

I am checking with his doctor tomorrow about the Clonidine patch.

Also what we have tried all weekend is that when he starts making the noise, I will let him know and he will try and redirect it. For instance, he can start humming instead or singing or tapping. I would much rather have him do that then the noise.

I really have empathy for everyone that is dealing with tics. Whether it's themselves or a loved one. Or even someone at work.

I will keep you posted on our progress and please share any insight that you may feel would be helpful. Any and all is appreciated as my son really wants to get a handle on this.

Crazygirl79
08-07-05, 09:56 PM
I have tics too and yes it FEELS different yes it FEELS annoying and strange and yes mine are the everlasting unchanging ones

singoalla
10-28-05, 06:07 PM
Hi I'm a newbie too with TS.
I recognise the need or urge to follow through with tics, and for me it is basically the way I imagine a junkie feels if he doesn't get his fix. Friends call me Twitchy now :), because I "twitch" a lot. lol.
But I have noticed that when I work out a lot the tics lessen. Recently I haven't worked out and the tics increase. My mother used to tell me to stop spinning my hair, that it would fall out, and so I stopped, and then I'd try not to do it because I didn't want to be bald, and ended up jittery and throwing my head so I could do something with my hair instead :D

Crazygirl79
11-01-05, 08:05 PM
YES YES AND YES!!!!! I know what this is likeI am a newbie and have read many of the posts here, but am wondering what the "onset" or "urge" to tic feels like?

Is it anything like the anxiety an OCD person might feel prior to acting on the obsession? Is it a mental or physical "urge?" If a person stifles a tic, will that cause anxiety until the tic can be released?

Also, has anyone experienced that certain tics occur in certain environments? I have observed a throat-clearing tic that only occurs at home on the sofa, maybe watching T.V. Does that seem odd?

aularian
11-21-05, 03:18 AM
Yeah I totally get that! Then again I wonder if that is just when I notice them the most.

tweedle
11-29-05, 09:16 AM
I've actually found this quite helpful as well (having made my last post about my son)

I am constantly telling him to stop doing 'things' We don't have a Dx but hopefully (with your help) I will be able to find out if it is this or if it is just him being his usual funny self. It is the face rubbing that drives me insane.. it looks like he is wiping his nose on the palm of his hand and shoves his nose up like he is trying to shift it to the top of his head.. I hate it!.. I will try harder.. NOT to complain at him.. if he can't help it.. he can't help it, regardless of my feeelings.

He just says 'he needs to do it' and usually does it again after I've asked not to.

It is wonderful to know there is a place he could come (if he could actually read well enough) and share his feelings.. maybe in a few years!

Replies to my Q would be most welcome.

Scattered
11-29-05, 01:31 PM
I've got this "gulck gulck" thing I do in the back of my throat along with licking the back of my throat. My mom was always on me about it as a kid and as an adult. Now my husband gets on me about it. It's not constant and seems worse if I'm stressed. I've been off my Concerta for four days now and it seems to be getting worse. I have a brother and grandfather who have Tourettes and I'm starting to wonder if I have a mild case or maybe just tics. Another brother and an aunt do the same throat thing I do. I don't always notice I'm doing it until somebody says something; other times I am more aware of it. I can control it consciously but feel irritable when I have to and will start doing it again when I forget.

Scattered

saltedhemp
12-27-05, 02:04 AM
i've been dealing with my tics for what feels like all my life. it really sucks... most of the time they seem pretty uncontrollable and usually leave me emotionally upset and in physical pain. not fun.

adhdxyz
01-02-06, 10:27 PM
My 12 year old son started his throat clearing tic again right when Christmas break started. He goes back to school tomorrow and I am hoping he can control the noises. When he went to the movies the other day, my husband said he didn't make the noises. When we were shopping he didn't either. But when we are home, it's been pretty bad lately.

The other night he was making the noises so loud that I couldn't sleep. I finally got up and went into his room. I turned on a peaceful radio station and started rubbing his back. He immediately went to sleep and since the noises stopped, I was able to go to sleep.

I know he can't help it and it is very frustrating for him. Since it's a new year, I am definitely going to look into it more. I didn't check into the Clonidine patch yet nor an allergist.

Naomi2
02-03-06, 01:41 PM
I have had mild tics for as long as I can remember.

I have computer tics too (a few different ones).

Anyway, this is what I'm on this thread to say:

How difficult is it to stop? Try it yourself…
(The Impossible Experiment)

An easy way to understand how difficult it is to stop a tic is to try not to blink for as long as possible. When doing this, you will notice that as soon as you take your mind off trying not to blink, you blink by mistake. Notice also that the longer your eyes are open for, the more there is a build-up of the need to blink until you become desperate and either decide to blink or your eyes blink automatically after a while. Usually, when you do blink after this time, you will not blink just once, but many times.

You could also try to imagine that it’s unusual to blink but you do it so you feel conspicuous when you are with other people. This would mean that whenever other people are around you would feel the need to prevent yourself from blinking (remember how difficult that is). At the same time, you would need to try to carry on doing everything else as normal. It would make you very tense and annoyed after a while and you would not be able to concentrate fully on everything else that’s going on around you at the same time.

jaz-z0r
02-08-06, 10:25 AM
When I was a kid I had this facial tick where I'd open my mouth as wide as it could go so the skin around my mouth would stretch tight an I'd bunch up all my neck muscles all at once.

Some people found it alarming

hahahahahahhaha

oh man it feels great to reveal all this stuff and laugh.

Man! I'm almost 21 and I still do that to this day ! I twitch my eye every 10-15 seconds, pull out my goatee hairs ( now I have a bald spot) even though it horribly hurts me to do that. I think thats mainly my OCD, but I still do it

With my tourettes, I screech at the top of my lungs alot more than when I am thinking about it, than when I am not. I also mutter and yell obsenities when people are around me; not so much when I am alone. But when I feel a motor or vocal tic building up,the longer I hold it in, the worse it will come out
By worse I mean louder/pitch & length :(

jaz-z0r
02-08-06, 10:31 AM
My 12 year old son started his throat clearing tic again right when Christmas break started. He goes back to school tomorrow and I am hoping he can control the noises. When he went to the movies the other day, my husband said he didn't make the noises. When we were shopping he didn't either. But when we are home, it's been pretty bad lately.

The other night he was making the noises so loud that I couldn't sleep. I finally got up and went into his room. I turned on a peaceful radio station and started rubbing his back. He immediately went to sleep and since the noises stopped, I was able to go to sleep.

I know he can't help it and it is very frustrating for him. Since it's a new year, I am definitely going to look into it more. I didn't check into the Clonidine patch yet nor an allergist.

Yeah, I completely understand how your son feels. I was diagnosed in middle school. When my parents had a meeting with the doctor they came to the conclusion that I probably developed it when I was 7 or 8. That's how my tics started off to - by clearing my throat. As time passed, it progressed to clearing my throat louder and more often. Now I do every single tic I can think of. I twitch my eye, roll my eyes,snort my nose,screech at the top of my lungs & yell obsenities. In highschool this was too hard to deal with. I was made fun of all the time by people who didnt understand what I have to deal with. I ended up droping out my junior year, and taking internet classes at home. Luckly I graduated with Academic Honors, but that would have never happened at a physical school

Scattered
02-08-06, 12:36 PM
Man! I'm almost 21 and I still do that to this day ! I twitch my eye every 10-15 seconds, pull out my goatee hairs ( now I have a bald spot) even though it horribly hurts me to do that. I think thats mainly my OCD, but I still do it

:(The technical name for the hair pulling is actually Tricotilomania (sp?). They do tend to think it's related to OCD, but it has its own DSM-IV diagnosis. There is treatment for that but it does tend to be a tough one to stop. The treatment if memory serves involved behavioral therapy -- sometimes meds help but not enough without the behavioral therapy.

Scattered