View Full Version : Tourettes or not tourettes that is the question!!!!


radiohead
10-13-11, 07:38 PM
I have had tics for as long as I can remember when i was very young I did them blatantly cos I didnt know any better but then tried to hide them but they must and do come out when I am alone. I am interested to know tho if impulsive conversation can be classed as a vocal tic as I find it very hard to keep my thoughts to myself without vocalising them.

C8H10N4O2
10-13-11, 09:40 PM
I have had tics for as long as I can remember when i was very young I did them blatantly cos I didnt know any better but then tried to hide them but they must and do come out when I am alone. I am interested to know tho if impulsive conversation can be classed as a vocal tic as I find it very hard to keep my thoughts to myself without vocalising them.

Seems like it.
http://www.webmd.com/mental-health/tc/tourettes-disorder-symptoms
But I'm not sure if it's just vocalizing thoughts or what. But it seems like a lot of uncontrollable things can be considered tics by the given description there.

radiohead
10-14-11, 03:57 AM
Also do tics always change over time or can they stay the same for long periods of time. my childhood tic changed into a different one but this one has stayed with me for many years

C8H10N4O2
10-14-11, 10:09 AM
Also do tics always change over time or can they stay the same for long periods of time. my childhood tic changed into a different one but this one has stayed with me for many years

I'm pretty sure they can stay the same, or change. So what you are describing would be possible...at least from my understanding.

namazu
10-14-11, 01:59 PM
I have had tics for as long as I can remember when i was very young I did them blatantly cos I didnt know any better but then tried to hide them but they must and do come out when I am alone. I am interested to know tho if impulsive conversation can be classed as a vocal tic as I find it very hard to keep my thoughts to myself without vocalising them.

Do you also have ADHD? Trouble keeping thoughts to yourself seems more like a manifestation of ADHD-type impulsivity than a tic, per se.

Most of the vocal tics I've heard about involve repeating a word, phrase, or sound rather than impulsively launching into conversation.

That said, ADHD and Tourette's commonly occur together (as do OCD and Tourette's). And I know there is debate about the many forms tics can take: Simple tics like head-jerking, throat-clearing, sniffling, blinking, etc. tend to be the most easily recognizable as tics, but there are also "complex tics" that involve more complex action. Many vocal tics that involve repeating phrases, etc. would fall under "complex tics". And some people have suggested that tics may even take other forms. ...So it's not impossible, I guess!

As for changing over time -- yes, tics can over change over time. Sometimes they are described as "waxing and waning" -- that is, they get strong for a while and then fade away, and may or may not come back later. Others tics may linger fairly constantly for a long time, while still others may appear briefly and then go away.

My understanding is that if you've had...
- multiple tics since childhood, and
- tics (not specific ones, just the fact that you have them) have lasted at least a year, and
- you have had at least one motor (body motion) tic
- and you've had at least one vocal (sound) tic,
...then you would probably qualify for a diagnosis of Tourette's.

I see you are in the UK, and don't know what organizations exist there.

However, the website of the U.S. Tourette's Syndrome Association has a good page for adults with TS
(http://www.tsa-usa.org/aPeople/LivingWithTS/LivingTS.htm),
with articles, profiles, and other resources that you might find helpful or interesting.

There is also a good video by Dr. John Walkup, an expert on Tourette's at Johns Hopkins University, on the page for newly-diagnosed people (http://www.tsa-usa.org/aPeople/diagnosed/newly_diagnosed.html).

Mychocostar
10-14-11, 03:16 PM
Hello. I'm a 20-year-old college student here. For the past 20 years of my life, I always felt somehow different, alone, and never knew why or what it was. I don't remember much from my childhood (very, very little compared to my other friends, actually) and most of the things I remember are horrifying memories as a child. When I was six, I remember watching the Simpsons every night at 6~7 before going to bed. I remember this one day vividly: during this period, I was in the habit of biting my cheeks and my tongue (while years progressed I came in and out of this habit, along with many more but this is the first I can remember). I was 6 years old. I would always have sores, always, and I remember the horror of trying to stop myself from biting my tongue, and that second or two of hesitation between each bite i would hold my breath. Any of you with tourettes will know what I'm talking about. Because of this, there was immense stress because my breathing was irregular, I kept biting myself, and as a kid I was just SO scared that I would bite my lips off and die. My mother wouldn't understand, and she would scream and me and tell me to just not bite myself. She wouldn't understand that I was scared, scared because there was NOTHING she could do to help me. Sometimes, I would ask for her to sleep with me just because having her there made me feel a little better. I would force myself to sleep, desperately wish I could sleep as I kept myself awake by biting myself. One day, I bit so hard on my tongue that I ripped through it, and so now I have a scar that reminds me still of that day.

Throughout the years, my symptoms varied, such as eye bulging, eye rolling, sticking my finger into my eye sockets (this was HORRIFYING), cracking my jaw, opening my jaw as wide as I could without breaking it (on this note, I'd like to mention another thing is that whenever I heard scary stories, such as the story of my mom and how she'd dislocated her jaw by taking a very big bite, I would immediately be stuck with the idea, and have to challenge msyelf to do this. opening my mouth as wide as I could was one of the scariest moment of my life, because I couldn't stop doing it, and I was really scared that my jaw would dislocate--I have a cracking jaw now because of this--and the only thing I could do to stp myself from cracking my jaw was to start grinding my jaw, and my teeth would sink into my gums and this hurt very much). I was still only around 6~10 during this period.

Before I continue with my later years, it is surprising to me as I write this (I just found out today about what tourettes syndrome really was, not the quite the southpark version) that all of my memories revolve around my symptoms. There are some very important details in my life that I don't remember, yet I seem to remember every symptom that had occurred to me from childhood. This is really how you know you ahve tourettes. EVerybody has tics and compulsions, but with tourettes your life revolves around it. You feel helpless against yourself, and seek help from others but the only advice they give you is to stop. But since you yourself is the one doing it, you can't stop it, and it puts you in a very lonely, depressed, confused state. For 20 years of my life I'd gone through depression, dropped out of highschool, tried to cut myself, all because I didn't understand what was going on. I was finally diagnosed with ADD in highschool, but still that didn't explain some of the things (and give me the reassurance I needed) that tourettes did. Knowing that there is something called tourettes, that there are others out there like you, makes you feel safe inside. To be able to talk to someone else and have them understand the powerless feeling you're subjected to is one of the most relieving expriences. I almost cried when I found this forum and read other people's posts. In the end, all you want is to know you're not alone.

But to continue with my symptoms, as I grew older, around the time of middle school, my symptoms were less self-damaging. Although I did get into a phase where I would wriggle my adult teeth (my front two teeth were weakened because of this), and to this day I still have nightmares of permanent teeth falling out. My symptoms became more localized to the face, and I would blink constantly (so much that I couldn't even concentrate in class or read the teacher's notes) I would roll my eyes, frown, smirk, and generally just move my facial muscles. As most of you will know, by the end of the day your muscles are in extreme pain, and you don't know what has happened during your day because everything is just a blur. A lot of attention goes into these ticks, and you find yourself absorbed by them. But this is the age when I began to have vocal ticks. My vocal tics weren't phrases, as most people commonly believe it has to be, but they included coughing (excessive), throat clearning, and also making a high-pitched noise within my mouth. I wouldn't open my mouth and let the noise out, so it was more a contained screech. This made it really hard to breathe, and constricted my neck muscles. But through this I learnt the techniche of whistling with my throat...anyhow. I would also have the urge to say words, but usually I kept myself from uttering phrases and instead made sounds. Like a high-pitched hmm or sometimes, when I was saing something like "it's hot today," I would feel the uncontrollable urge to shout one of the words VERY loudly. I would randomly SHOUT words, and I'd feel the urge to have to shout even LOUDER at random times. People thought I was weird.

As I became an adult, my tics generally lessened. Sometimes, I go for a long period of time without having any tics (except for my shoulder twitches and neck moves. I had used to turn my neck to the side, as far back as it could go, but stopped doing this as compulsively. But since then, I have never lost the habit of occasionally looking to the side, or twitching my shoulders. But I do this in a way that most people don't notice it). These days, when I begin to have a tic I don't usually notice it first until someone says, "I love it when you do that." It's weird because in elementary school people called me weird, but now my friends would say they loved that face I made with my eyes. They don't know it's a tic. But when they mention it to me, I am reminded of the tics and for a period of time continue doing them until one day i forget. This is the secret. You cannot force yourself to forget a tic. The more you try, the more you think about it. only time, and hopefully some event, will take your mind off it.

There are so many more that I would like to write, and haven't included, like my obsession with hair. I have always liked twisting, tangling and untangling my hair, etc. The point is that tourettes can't be determined by trying to fix symptoms into the categories. Just because you have had other tics and not a vocal tic doesn't mean you don't have tourettes. This can be said the other way around, too.

When you have tourettes, I believe you know it in your heart. The moment you find out about this syndrome, and that people exist who have it, there is a great relief and hope that your life will be different. During stressful times, I can go through a phase where compulsions overwhelm me, and sometimes I wonder if I will live life forever in the anxious, worrying, helpless state. But knowing that there are people, now, I feel as though I can share my experiences, and read others' as well.

Simenora
10-14-11, 05:33 PM
Try singing. DS has tourettes with complex verbal tics. sings the first 2 lines of a given song for 8 hours a day for about 2 weeks, mostly on key thank-g-d.

radiohead
10-15-11, 05:52 PM
Sounds like you have had a very difficult time but you have a good attitude and seem to be a strong person and you are gettin thru fine. You should be proud that you have stayed strong. It can be very lonely and frightening when you don't understand why thing's are happening but I agree you have to avoid focussing on it. Your so young but you will be an inspiration to many people because of your bravery so take heart because difficult problems make you strong and able to cope with anything that comes in the future. Don't be afraid of thoughts just remember that that is all they are and although it is difficult you are in control of yourself I believe that when intrusive thoughts come your best plan is to attempt to do something to distract yourself make it something nice and safe so that it ends positively for you. Best wishes

radiohead
10-15-11, 06:01 PM
I am being assessed for adhd in a couple of weeks didnt have any idea that I might have it came across adhd by accident when I was putting my symptoms in a search and it kept popping up don't know yet whether I have it but can certainly identify with a lot of the difficulties people express on this forum and then there are the tics too and I heard that there are usually an accompanying condition to Tourettes. thanks for the info really appreciate it

C8H10N4O2
10-15-11, 08:37 PM
I am being assessed for adhd in a couple of weeks didnt have any idea that I might have it came across adhd by accident when I was putting my symptoms in a search and it kept popping up don't know yet whether I have it but can certainly identify with a lot of the difficulties people express on this forum and then there are the tics too and I heard that there are usually an accompanying condition to Tourettes. thanks for the info really appreciate it

Good luck. I hope your meeting(s) go really well. It really helps just knowing about it, because you can start making your environment work for you, instead of against you.

rickymooston
10-19-11, 02:06 AM
I have had tics for as long as I can remember when i was very young I did them blatantly cos I didnt know any better but then tried to hide them but they must and do come out when I am alone. I am interested to know tho if impulsive conversation can be classed as a vocal tic as I find it very hard to keep my thoughts to myself without vocalising them.

Not sure about your vocal impulse but I have two ticks. I close my eyes a lot and I nod my head. Sometimes I can reduce the head nodding.

I had a friend with an obvious vocal tick. Hi said "hic" often. I understand, this and his OCD caused him a lot of distress.

The diagnosis of Tourette's confuses me; they count the number of ticks you have ... :O.

radiohead
10-19-11, 05:36 PM
That is strange that they count the ticks. I have a bit of a complex one which involves both my arms and holding my face in a squeeze but I know that i do something with my face when i am suppressing tics when in company or concentrating cos other people have noticed it and I do feel quite anxious if i spend too long in company and have no opportunity to tick but yet i wouldn't say when i go to be alone it is to go and have a tic I would say it is more like i go to the loo or something and while i am alone the tic has happened before i even have time to think about it!!:o

rickymooston
10-29-11, 02:30 AM
That is strange that they count the ticks. I have a bit of a complex one which involves both my arms and holding my face in a squeeze but I know that i do something with my face when i am suppressing tics when in company or concentrating cos other people have noticed it and I do feel quite anxious if i spend too long in company and have no opportunity to tick but yet i wouldn't say when i go to be alone it is to go and have a tic I would say it is more like i go to the loo or something and while i am alone the tic has happened before i even have time to think about it!!:o

If it makes you anxious enough, you could consider discuuss it with doctor whether or not its labeled tourettes

radiohead
10-29-11, 12:17 PM
If it makes you anxious enough, you could consider discuuss it with doctor whether or not its labeled tourettes

Thanks for the advice having my first discussion Tuesday for diagnosing adhd feelin nervous like you not particularly interested in meds maybe just to get things done occasionally.

rickymooston
10-30-11, 10:27 PM
Thanks for the advice having my first discussion Tuesday for diagnosing adhd feelin nervous like you not particularly interested in meds maybe just to get things done occasionally.

Well, the cool thing is, it is an option. I've not ruled it out in my life yet but its not my current aim.

My tics aren't a worry.

:D

radiohead
10-31-11, 09:19 AM
Mine can get intense at times and slow me down in that kinda way of the more i need to get on the less I can cos of ticking especially if I am in a rush or excited or angry. Sometimes too as I am gettin older I worry that I can make myself dizzy with the frequency and intensity of the tics at times as I can make myself a bit lightheaded with slightly holdin my breath while ticking I know that sounds quite weird but thats what happens:o its not all the time and I have control at times like when i am concentrating on stuff but thats what I don't get how I can control them sometimes and not others????

BlackorWhite
10-31-11, 09:43 AM
Are you guys sure that some of these things you're experiencing are tics? I've done many similar things in my life and an old psychologist told me that I don't have OCD, which i thought my self mutilation, and counting games I played in my head must have been. I also do the sudden movements/vocalisations sometimes, but not too often, usually when I'm about to fall asleep. Also, I'm almost positive that my constant throat clearing that I've done since I was 12, is not a tic which my current psychiatrist told me. Just my opinion, but sounds like you're mixing a couple of condistions here.

Radiohead, sounds like that symtom is pure ADHD, or maybe just impatience... From what I know, I don't think you would really have a chance to think about a tic till it has already happened.

Mychocostar, you remind me alot of myself growing up, I have MANY permanent scars. It's very difficult when mental issues manifest physically. IMHO, I think we both have OCD, yet docs seem to pin ADHD on ppl like us.

radiohead
10-31-11, 07:40 PM
Not sure about anything which is why I am bein assessed just explaining my experiences. When tics twitches or whatever you want to call them come it is automatic see my earlier posts and i do feel anxious suppressing them when at work but what i was saying was there is a level of control there where i can do it even though i feel anxious but as soon as i am alone they are automatic.

radiohead
10-31-11, 07:55 PM
Are you guys sure that some of these things you're experiencing are tics? I've done many similar things in my life and an old psychologist told me that I don't have OCD, which i thought my self mutilation, and counting games I played in my head must have been. I also do the sudden movements/vocalisations sometimes, but not too often, usually when I'm about to fall asleep. Also, I'm almost positive that my constant throat clearing that I've done since I was 12, is not a tic which my current psychiatrist told me. Just my opinion, but sounds like you're mixing a couple of condistions here.

Radiohead, sounds like that symtom is pure ADHD, or maybe just impatience... From what I know, I don't think you would really have a chance to think about a tic till it has already happened.

Mychocostar, you remind me alot of myself growing up, I have MANY permanent scars. It's very difficult when mental issues manifest physically. IMHO, I think we both have OCD, yet docs seem to pin ADHD on ppl like us.

Sorry if previous post sounded a bit pointed it's just I have had a bit of a bad day and I guess i am a bit fed up of wondering round in the fog of my life. You could well be right and God knows i am not eager to have any more labels than I have to was just curious

rickymooston
11-01-11, 08:34 AM
Are you guys sure that some of these things you're experiencing are tics?
us.

Yes. My neurologist told me so. They are too minor to worry about tho.

davgall53
12-29-11, 03:40 PM
I have had tics for as long as I can remember when i was very young I did them blatantly cos I didnt know any better but then tried to hide them but they must and do come out when I am alone. I am interested to know tho if impulsive conversation can be classed as a vocal tic as I find it very hard to keep my thoughts to myself without vocalising them.
Hi Radiohead,
Your question is a *very good one*' but I personally believe the answer can be complex But frst, without treatment and some treatment training in an area called "imaging"-- the tics almost always come out one way or another. But you hit upon a very close topic above --questioning whether impulsive concersation can be a vocal tic. I believe Yes. but it goes beyond this too: Very many people who have Tourette's also have verying degrees of attention disorder and Obsessive Compulsive Disorder. They are comorbid -- meaning that Tourette's is your first diagnosis, (primary) but it many many people, ADD (and all it's varients 'are part of TS -- but secondary...The thinking being that if you were not afflicted with TS; chances are you would not suffer OCD or learning issues either. But where does one disorder stop, and the others begin?? This varies greatly, but if you say -- think of obsessive verbalizations -- that is a major symtpon of OCD - but also a major symptom of Tourette Syndrom -- sometimes this symtom is "one has to get it "just right."

I've had all of these symptoms, and my own opinion, is that we really don't know where one ends, and the other begins...Kind of similar to "three people dancing as one."

Are you being treated for TS, and if so -- are all aspects being treated or just one (usually the movements). If you are close to a good TS clinic or treatment center, I strongly believe that having neurological psychiatric testing would benefit you greatly.Basically this routine conists of a number of psych tests (not a lot different than IQ or personality tests. But if do and I urge you to undergo these -- be sure the tester is well versed in OCD,TS, and learning issues. Finally, despite your living on the "Other Side of the Pond -- please don't worry...There is a LOT of work and research going on worldwide. I would suggest that you look up the Tourette Syndrome Association in Bayside New York.l They are a wealth of knowlege -- and you can reach them at: http://tsa.usa.org . You will find and incredible amount of information there....And, if you have any issues or questions, you'd like to about -- please feel free to email me too.

/Dave