View Full Version : Tourettes Syndrome and my tics


Energizer_Bunny
04-15-03, 09:10 PM
I thought I would list out my tics that I have or that I have had in the past:

Open mouth wide and stretch it

Upper lip to bottom of nose

A vocal noise that sounds like a motor boat or Mr. Ed the horse

Sighing and blowing air out

Grunting

Snorting

Left eye winking

Shoulder shurgging

All sorts of facial tics or facial clowning

My skin can itch when I tic

Pop my wrists and turn hands in an upward or downward motion

Lower back twitch

Left shoulder to ear

Pop ankles inward while sitting and walking

Clinch buttocks

Facial touching with hands

Moving hair out of face when hair not in face

Head to the left, hands in a praying postion under my left ear, snorting, and contracting muscles at the same time

Arms going out in front of me or up

Dystonic tics-Squeezing of muscles in the process of a tic and holding until it feels just right. Can last up to a minute, maybe more, I have not timed it

Roll up my upper lip and buck out lower jaw

Pushing stomach muscles out

Jaw clenching

Eye blinking

Full body movement at night in bed

Closing eyes tightly shutting and squeezing and bring head down to the left. This has effected me while driving and is very scarey

mark
04-22-03, 01:12 PM
Just caught this post today Energizer,
I myself have some of the exact same tics, facial, vocal, limbic,etc. Always thought it was just nerves or something. Then I got my adult diagnosis of ADHD and OCD. Started reading up, and bingo! I see all the stuff about Tourettes and ticks. Weird how all of these things go together, huh?

Energizer_Bunny
04-24-03, 02:44 PM
Hey Mark,

Yes it is. I actually believe that Tourettes is the bigger picture and that ADHD and OCD or part of Tourettes. How bad are your tics and are you being medicated for them?

Sherry

Jonathan
08-08-03, 09:07 AM
Hi! Didn't want to post today as I should be working - but just wanted to quickly respond after reading your list (in effect, echo mark's sentiments) - though I would not be inclined to say I have Tourette's (I was about to say I am sure I don't have it till I read your bigger picture hypothesis) - I have done practically all of the things you said (with varying degrees of regularity or compulsion): it's amazing reading, somehow, because this stuff normally feels so painfully personal.

As you say, Mark, it is weird how all this stuff goes together (also the various ADD characteristics, I'm in the first flush of discovering it all (as something out there not just in here)).

Jonathan.

Energizer_Bunny
08-24-03, 09:26 PM
Hi Jonathan,

I was in denial for the longest and I even thought my doc was crazy and he had no clue what was going on. But it took a medication that brougth my tics out for me to a level of severity that made me realize I had TS. And yes, it is very personal, but I think talking about it and educating others about in its own way is a sense of therapy. If you think you have it, get to a neuro, and get the mystery solved.

InattentiveType
09-27-03, 02:00 PM
I have a lot of the same tics.

I also have had some scary moments in the car when my squinting / rubbing eyes or turning head have been the cause.

I think it's also inter-linked with ADD because when I drive slower I tend to lose concentration/focus (i.e. start daydreaming) and Tic more as well. Whereas when I drive really fast I'm able to focus and my Tics dissipate.

Question:

Does the symptom of tics alone mean I have Tourettes? I've never sought a diagnosis. I have other family members that tic as well.

Wheel1975
10-06-03, 10:26 AM
Why not ask a doctor?

Wheel1975
10-06-03, 10:28 AM
Tics are basically "insubordination", aren't they?

Wheel1975
10-06-03, 10:35 AM
Tics are basically "insubordination", aren't they?

It occurs to me, that though i am way under the radar on this one, that I do about half of those things "for no apparent reason" ... and a few things i do for an apparent but unlikely reason...

I "cringe" or "shudder" when i drive under high tension electric lines across the road. i actually have a meter to detect the elecric field. i can inhibit the act, but the feeling, urge, remains. also it seems to be the idea, rather than the fact... field strength is not a good predictor of whether i do it or not, so far as i can tell.

how much is the bell and how much is the food? (Pavlovian response)

Energizer_Bunny
10-19-03, 12:01 PM
I see Tourettes as being the larger spectrum of ADHD and OCD, with Tourettes being the main diagnosis.

insubordination? No. Tourettes is a neuro-biological disorder that is genetic.

neuroangel
03-20-04, 12:49 AM
Originally posted by InattentiveType

Question:

Does the symptom of tics alone mean I have Tourettes? I've never sought a diagnosis. I have other family members that tic as well.

I was flipping through the DSM IV a few days ago. The tics had to start before the age of 18, to be considered Tourette's. There are other tic disorders that come on due to meds or that just start a little later in life for some reason.

Cyndi (neuroangel)

neuroangel
03-20-04, 01:06 AM
Originally posted by Energizer_Bunny
I thought I would list out my tics that I have or that I have had in the past:

Sighing and blowing air out

Shoulder shurgging

All sorts of facial tics or facial clowning

Pop my wrists and turn hands in an upward or downward motion

Lower back twitch

Pop ankles inward while sitting and walking

Clinch buttocks

Facial touching with hands

Moving hair out of face when hair not in face

Dystonic tics-Squeezing of muscles in the process of a tic and holding until it feels just right. Can last up to a minute, maybe more, I have not timed it

Jaw clenching

Full body movement at night in bed



I deleted the tics that I don't have...the majority of these I didn't even realize were tics. I thought they were just muscle spasms and constant joint popping. Here's what else I do:

Roll eyes

Widen eyes and then scrunch my face

I blurt out "Weeee!" a lot

Turn my head side to side, like I'm trying to crack my neck

When I'm thinking hard or I'm really into something, I either hum or just let out short-quiet "aah" "ee" and random sounds.

My entire body jolts when I'm asleep or my hand starts jerking violently, needless to say, it wakes me up a lot.
_____

Thanks for sharing.

Cyndi (neuroangel)

Jellybean
03-20-04, 03:19 AM
I have read a lot about t.s, because my sis who isn't diagnosed seems to have it. She does this thing where she turns her lips inside out and angles them sideways. And does the swearing thing. Somedays she walks pidgeon-toed and hunchedback other days not. Anybody know what that may be about? (aside from depression?) When I asked her she just shrugged.
j9

Energizer_Bunny
03-22-04, 03:12 PM
A lot of times people don't know why they do what they do as for as the vocal and motor tics. Jainine, you may want to ask her if she feels like she has to do it and once she does it does she feel better. Also try asking her, not to do it and see see if she can't. But don't ask her not to do it to keep her from not doing it, just as a test to see how she reacts. For me, if I don't tic, it just builds up and can get worse.

Energizer_Bunny
03-22-04, 03:12 PM
Wow neuro, we have some things in common I see.

neuroangel
03-30-04, 03:40 PM
Hey Energizer,

I see my neurologist on Apr 19. I'm going to let him nkow about the tics and another thing. He treats my 10 yr old cousin for ADHD and Asperger's, and I think something else. So I am going to let him know that the two of us are related, maybe he can compare notes so it'll help him help us. I'll keep you updated.

Cyndi (neuroangel)

Gregster
03-30-04, 07:08 PM
I used to do the "open mouth wide" type tic. I also used to "sniff" like my nose was running. It drove my father crazy and I ended up going to an ear, nose and throat Dr and having an operation - septoplasty and terbinate reduction - to try and make it better (they thought it was an obstruction). Now, while learning about ADD, I realize it was probably a bit of a tic!
That's one missed diagnosis that caused me a lot of suffering, I tell you! The recovery from the operation was not a lot of fun - I couldn't breath through my nose for at least 2 months!

Piupau
04-01-04, 12:00 AM
I've experiensed that body-shaking only a couple of times (when I have been under pressure for a long time, like in a bus or train where I can't tic too much). Last time when I was at the hospital. The doc went out for a minute and my entire body started to shake. I tried to stop it and managed to do it. Then I relaxed and it started again. But it was gone when the doc returned. When I knew I could control it wasn't afraid anymore. I can most of the time control my tics but they get worse if I supress them. If I hadn't been able to stop it for a second I would have thought I had EP or something.

I've also had most of the tics on your list. Right now I have bad words, head jerks, arm jerks, spitting, humming, jaw clenching, facial tics, hand/finger tics, leg movements.

Energizer_Bunny
04-02-04, 10:46 PM
Oh Greg,

I can't believe they put you through that.

I am just :o

Energizer_Bunny
04-02-04, 10:48 PM
Piupau,

I was wondering, are you on meds for your tics? Would you consider yourself to have moderate or severe tourettes?

I know of a girl that had the body shaking too, but she has Epilepsy......but they were finding that it may not have been the Epilepsy but the actual Tourettes. I can't remember all the details on it though.

Piupau
04-03-04, 03:38 PM
I consider me having mild/moderate tourettes. I don't feel handicapped by it. At work nobody cares if I make noices or jerk. There are more ppl w tourettes there I think. Don't know if they have a dx but they do tic. It's "normal" to tic at my work ;) *rofl*

Only when I go out in public and meet customers I have to stop them, but sometimes tics can escape and then they will look very strangely at me. But I'm not the embarassed type of person ;)

I don't have other meds than my wet snuff :) about 1 snuff/1-3 hours depending on how I feel.

I don't have all the tics at the same time, I tic when I forget to have control or when a new tic explodes that I'm not prepared for... except for that time I tried laughing-gas at my dentist's. God D*MN my leg had it's own life and my head jerked. It was some experience, I lied there for 30 minutes and was constantly moving. I think that was something new to him. "Are you really relaxed?" He asked me after 15 minutes... Who CAN'T be relaxed fully pumped with laughing-gas? *lol* :D He thougt it'd be ok to use that next time too, but that was 4 months ago! I have some other tics now! He'll be mighty surprised on tuesday! :p

neuroangel
04-16-04, 12:29 AM
What kind of meds are used for tourette's? One reason I never told a professional about my tics was because I was afraid of the medication. I heard that they use just antipsychotics. Those cause people to gain weight, sometimes a lot of weight! I already blew up from meds in the past, I'm scared of that happening again.

Cyndi

Piupau
04-16-04, 05:08 PM
Yes cyndi. Risperdal, Haldol are two types. You can get very scare side effects from them. Sometimes much worse than the tics! I don't touch the "schitzo-meds" at all. The meds can also make you numb and dull. You won't care about anything, you mind works much slower. And it's NOT absolutely sure it's reversable! If you use Risperdal and get TD (Tardive Dyskinesia, i think it's spelled like that) You might have that for the rest of your life!

neuroangel
04-16-04, 07:17 PM
Aack! I've met people with TD. One man had been on thorazine for seven years; his tongue was rolling and lolling, he walked on a slant...it's called, "The Thorazine Shuffle". People on Haldol march in place. Side effects of the neuroleptic (anti-psychotics/schizo-meds) really scare me.

I used to take an anti-psychotic at night to help me sleep. In fact, I've been on a few of them to try to help slow my mind down, and keep me from "jumping out of my skin". Seroquel, zyprexa, thorazine, and loxapine. I had a severe allergic reaction to the loxapine. My tongue got so swollen that I couldn't breathe, I had to go to the ER and get a few shots and an IV. With all the stuff I've been through with psychiatrists, you'd think I'd be terrified to ever see another doctor.

I'm thinking about not even mentioning anything about the tics to him. I'm really worked up about this now.

Cyndi

Piupau
04-17-04, 04:26 AM
If you don't need meds you don't have to take them! You can tell you doc of your tics, but you decide if you want meds or not. How old are you? I got my dx when I was 26 yo. I've managed my TS for 22 years and I've been w-o meds all that time. I dont need meds and won't have them ;)

neuroangel
04-17-04, 03:26 PM
I'm 20 yrs old. You're right. I don't have to take the meds. Sorry that I was kind of freaking out on here. Even if the ADhD meds make the tics worse, I think it'd be worth it if it helps me with school and work. Wow, I can't believe it's almost Monday. Time flies. :bowl:

Cyndi

Piupau
04-17-04, 08:56 PM
You'll do just fine. Asked about an adhd + ts evaluation when I wanted to be checked. I didn't talk much about ts. TS is somewhat embarrassing somehow and adhd is more accepted (atleast here in Sweden). But he told me I have TS even if I didn't tell him about THAT problem. I thought my adhd is much worse! But he told me I have TS too, I was in a room alone with him and we talked a lot, I think he saw my tics. You propably have to be alone for more than an hour with you doc to be able to relax... I did, and many ppl I know w ts doesn't have tics when they visit their doc. ;)

neuroangel
04-17-04, 11:09 PM
I think ADhD is more accepted than TS in the u.s. too. People look at me like I'm nuts when I mention ADhD in an adult reference, though. I guess it's still viewed as I childhood thing or just being immature. I know what you mean about not relaxing at the doctor's office. My blood pressure goes up when I'm at the doc's. Last time I went, I ticked a few times, I think he noticed. He looked at me weird the third or fourth time I ticked, but he didn't say anything. lol

Thanks Piupau.

Cyndi

Piupau
04-18-04, 02:00 PM
I think my doc has TS too. I recognized some of the "stopping-tics" tricks he had. And also I knew HE knew what to look for and what questions to ask! Someone with out TS doesn't know how a tic feels or how it feels to stop it. :)

neuroangel
04-21-04, 03:19 PM
I mentioned the possibility of me having TS to my mom. She agrees that I've had a few tics since childhood, but she got defensive and said, "You do not have tourette's!" So I left it at that. Parents.

Cyndi

lisaw163
07-11-04, 01:09 AM
i seem to be having similar problems. Most of them are the same as what I have but im not sure if I have ts yet.

allcountry
03-05-06, 04:32 PM
I am new to this site i found this site becouse of my son he is adhd add and posesive complusesive disorder . my latest concern is he is licking his lip to the piont ware he has scabs on his face ppplease help.

speedo
03-05-06, 07:32 PM
There is an OCD thread here: http://www.addforums.com/forums/forumdisplay.php?f=108

ADHD and anxiety seem to go together. I don't have full blown OCD, but I do qualify for "OCD tendencies" , and I can say that anxiety is the key, but cognitive tricks to break out of, or avoid , or modify compulsions are good too.

Do whatever works.

Medication seems to be the most helpful and for some people it is nothing short of miraculous.

good luck

ME :D

allcountry
03-05-06, 08:14 PM
they are going to change his meds but i have to wait for the doc to come back from vaction . he just started seeing this doc cause the other one would not lissen to nouthing.this new doc is the one that seid he is ocd add adhd but he has not taken over his medican yet . thank you for the imfo and thank you for your time

singoalla
04-13-06, 05:17 AM
Wow, I'm glad I found this thread. I joined the board a while ago, and then I just forgot about it. Did a google search again lol.
I recognised a lot of the things on your list, didn't know either that they are tics.

Make a Hm! sound, like a little hiccup.

Sighing and blowing air out

Grunting

Snorting

Left eye winking

Shrug shoulder and roll right shoulder towards right ear while bending head down at the same time.

All sorts of facial tics or facial clowning - Mostly I do the "bewitched" kind of nose shaking.

Pop my fingers and turn hands in an upward or downward motion

Upper back "lift"

Left shoulder to ear, head twitch to the side

Pop ankles inward while sitting and walking - pop toes too!

Facial touching with hands - rub bridge of nose and earlobes

Moving hair out of face when hair not in face - TWIRL my hair all the time. Drives people nuts. And I look like a moronic teenage twit when I do it too. All that's missing is the gum lol.

Left arm out and up and make a cracking noise with shoulder.

Move both arms up.

Tearing stuff apart, tie things in knots, roll things on fingers, curl and grind fingers together, crack knuckles - just about anything to keep hands busy.

Roll lips together as if spreading lipstick lol

Pulling stomach inwards and bowing back

Jaw clenching and click teeth together.

Eye blinking plus frowning and raising eyebrows.

I probably do other things too, people just generally say I look like I'm in need of a fix or just look plain nervous. lol.

TIMBO
05-11-06, 08:29 AM
Hi all, So glad I have found somewhere where I can finally talk to people who are on the same wave length as me, and who understand me fully.

My name is Tim or TTT (Tourettes Ticking Timmy) I live in Jersey Channel Islands. I have a moderate/severe case of Tourettes Symdrome. I was diagnosed at the age of 7 and am now 26.


Here is a list of all my tic's. Some of which are now and some from the past.

Scale 1-10 (10 being the worst)

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Make a loud whooping noise whilst breathing inwards, very, very loud sounds like a dog. 10/10

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Snort & Sniff very hard usually end up with cuts in my nose. 8/10

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Pretend to spit, sometimes do spit. 7/10

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Clear throat very harshly 8/10

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Jerk my head up and down violently which results in head, neck and back pains. 9/10

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Scrunch my eyes so tight that my vision goes blurry for 30 seconds + 7/10

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Click my neck and back bones (very painful) 8/10

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Shout swear words sometimes & also other words like pants, punk & pathoooogie, a word I made up years ago. In a way this word sort of means, “Superb” cause I always say it when I hear something good. I shout softer words rather than swear words I sort of can control what words I say. I usually enthasize the letters - A,B,C,D,F,P,S & T when shouting words. 6/10

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Shake my head from left to right very fast whilst making a wobbling sound. Sort of like when a cartoon character gets hit on the head and shakes it back to normal! 4/10

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A wicked laugh pushing out all of my breath. 4/10

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Tensing up until I get cramp somewhere on my body. 3/10

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Freezing up in a position for 10 to 40 seconds. 2/10

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Eye’s roll to the back of my head. 2/10

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Grind my teeth. Once I bit a pen so hard a chipped a little bit off of my front tooth 2/10

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After having a conversation with someone, I will repeat the conversation in my head to make sure I had replied back to them correctly. And sometimes turn my head to either side and repeat the words I had just said like someone was there. P.S. I’m not psychotic by the way. 2/10

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And a while ago when holding a sharp kitchen knife or any other sharp object, I would pretend to stab myself especially the eyes move very fast as close as I could from left to right eye. (Stopped this dangerous manoeuvre) 0/10 was 6/10

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Wave my arms around. 3/10

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Twist my wrists and ankles around. 4/10

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Push stomach in and downwards, my parents use to say I was laying eggs and my sisters used to call me Jerky Turkey.

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Wash my hands and face after touching objects. I usually wash my hands and face 10-15 times a day. (A case of OCD I think)

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Andi
05-11-06, 07:26 PM
Welcome Tim :)

joanneb
05-12-06, 05:22 AM
Hiya im new here too i live in england my son is 7 and was diagnosed earlier this year with ts ocd and adhd some of his tics which he has had are

Blinking ,winking,shoulder shrugging,shoulder rolling,blowing up his nose,sucking cheeks in,snorting,grunting,cough tic,sniffing,rubbing finger and thumb together,neck stretching,facial grimacing,twirling.pulling clothes off neck,lip licking and probably a few more ive forgotten about.

He does have several tics which are his most regular ones such as the winking which i think is quite a cute one.

TIMBO
05-13-06, 02:13 PM
Thanks for the welome Andi :) Hi: <TABLE cellSpacing=6 cellPadding=0 width="100%" border=0><TBODY><TR><TD noWrap>joanneb (http://www.addforums.com/forums/member.php?u=11510) http://www.addforums.com/forums/images/statusicon/user_offline.gif<SCRIPT type=text/javascript> vbmenu_register("postmenu_290233", true); ***********
Newbie
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I have so much to say but right at this moment I can't explain my self properly cause I've had a few drinks! Seem's to be one of the best remidy's for my tourettes which i'm sure your son is'ny ready for yet :)

One thing I can suggest is with the "pulling clothes of neck" is cut the lables off the clothes, cause that is one thing the really got on my nerves! It seemed to help me a lot with my tic's. The lables on my clothes made my tic's worse because I was getting annoyed with that constant & irritating itching.

Another idea is get your son to consentrate on things like:-

Drawing

Computers - games or real I.T. stuff

Which ever sport or things he is into at the moment, encorage him to get into it, My dad brought my up with computers, and when I have a really challenging subject my tic's go away. (Consentration is the key - it works for me)



Hope this will help a bit :)

joanneb
05-15-06, 07:51 AM
Thanks timbo funny enough my son has always had a obbsession with labels he will sit and feel it.Even when he was a baby other babies had blankets nathan had labels,he says if he sees a label sticking out of someones clothes at school he feels like he wants to go and feel it.So hed probably kill me if i cut them all out lol.He is only 7 but very good on a pc he does play games on it alot i find he tics the most when he is sitting watching tv.