Question about tics with TS

[DinaGrimes]

My daughter (12 years old) has been diagnosed with TS since 5 years of age.  Her tics usually last about 3 to 4 months before changing to a different tic.  Some we have seen come back and some she has only had once.  Example, eye blinking was her first tic at age 5.  It came back at age 8 and has not come back since (not to say it won't).  She just recently went through a very ruff tic where she would thrust her head out at an odd angle.  This has just recently gone away to be replaced with a vocal tic (grunting noise).

Question:  Is this normally how the tics work with TS or do most people have the same tics continuously?  Also, I've been told that the tics tend to get better as they age but her tics seem to get more severe.

[stumo32]

Hi Dina, i suffered from TS from the age of about 7 or 8 till i was about 19, i went throught quite a few different tics, some i ended up doing alltogether.
Im 33 now and have learned to surpress my tics, i still feel the urge but only about 2-3 times a month, or when im writing something about it like this or see it on TV.
For me, i got to an age at 19 when i was so sick n tired of it i decided to fight against it and try hold in the tics, this was prob the hardest things i ever done in life as it makes u feel like your gunna burst if you dont let the tic out.
tics have good days and bad days, think its always like that.But they can vaninsh when she gets older.  :)

[DinaGrimes]

Thank you for your reply.  We keep praying that they will get better for her and are VERY thankful they are not worse.  I've seen documentaries on TV with MUCH worse cases.  I think she tries her best to suppress them during school so by the time she gets home they are really bad though she will go through periods (sometimes a couple of weeks) where she hardly has any.  I'm hoping with summer coming and the pressure of school off they will ease up for her.

Again, thank you!

[stumo32]

Heres the way i think TS works, i still get the urges today but just dont perform the tics.
Dont think the thought of the tics will ever vanish from me but actually doing the tic has 99% vanished from me.
People with TS will know that a tic is like a split second thought that turns into an action, you get a sudden urge that you think you cant control. But one day i just snapped like i said and decided to fight against it. Everyone that has TS has prob held back a tic for as long as they can before letting out the tic, so in otherwords, they are proving to themselves that they can fight against it.
Dont get me wrong, this was real hard to do and its only natural for a couple of tics to come out on ocassion at first, but after even a few days of not performing a tic as much, your mind sort of forgets to do it, you will see the difference.
When you perform the tic all the time, then your just in automatic mode and cant stop, so by not giving in to the urge your mind actually forgets about the tic.

About tics that come and go also, this to me is cos they are concentrating so much on other tics that their brain forgets all about the tic that has vanished, so its sort of put to the back of the mind in a way. Then you notice that your not doing that tic no more and it starts up all over again.
So practice tic holding everyday makes perfect....well kind of anyway :)
The effect of not performing the ticks is quite quick, within days i could tell i was ticking less, within a month or 2 i felt great.
Its all a question of putting up a fight against the urge, i felt i was going crazy when fighting against it sometimes, but was well worth the effort in the end.
So she gotta try put the same effort into holding tics back as she does at school, then i think they will ease off :)

[DinaGrimes]

You're completely right!  She has even mentioned to us that if she is completely obsorbed in something (which she is enjoying) she forgets about the tics and does not do them.  Though I've noticed it has to be something active.  If she is obsorbed in the TV the tics seem to get worse.  

I just read an article yesterday where it said that the severity of tics often peaks between ages 10 and 12 years and then will decline in severity and in some cases disappear.  Hopefully this is the pattern we will see.  In the mean time, I will talk to my daughter about what you have discussed and hopefully she will also have success!

Thank you for your help and input!

[stumo32]

Hi Dina,
            i've actually put that letter on youtube as i sent it to a young girl of 16 and she says here tics have died down by at leasy 75%, she's been doing it for 11 days now :)
At the moment she says she feels the best she has done in years, i just hope other people will take notice of this and not just think its rubbish.

the video on youtube is called   Holding back tics ( tourettes )

if this has worked for your daughter also i would luv you to leave a comment :)

thnx lots Stu :)

[stumo32]

btw....my tics where at their worst while i was watching TV also.

[cassbazos]

I would have to disagree with stumo32.  I have tried your technique in the past, before I was diagnosed with TS and it didn't work for me.  I think that trying to suppress the tics for an extended period of time only makes them worse, in the long run.  I don't think that people with TS really "think" about their tics, it just happens.  Yes, there is a split second decision to be made as to whether to action the tics to get rid of the urge but it's not like you thinking "oh, I'm going to have a tic right now" all day long.  I agree that if you are completely engrossed in an activity that requires mental feedback that the tics seem to dissipate a lot or if not all together.  But that's not to say that your brain isn't still thinking about it subconsciously.

Anyways, I only allow myself to express my tics in the privacy of my own home, or when I'm in my car and no one is around.  When I am out in public for a period of time and I am in a situation where I have to "control" the urge to tic I do okay, but as soon as I go to a place where no else is around the tics just come out on their own.

Ideally, I just wish that the general population was more educated about what TS is and that it can happen to anyone.  Then again I know this world isn't a Utopia.

[stumo32]

People with TS do tic as its a natural thing for them to do, you get so used to it then it just comes out, automatic mode as i call it.
I've mentioned to quite a few people about how i managed to overcome TS and they have also given it a try. Its been working for a few of them so there must be something in this ?
Some say they can hold them back quite easy, some say its too hard, myself...i was rolling round the floor with my head nearly ready to burst when i tried to hold them back, the pressure to tic was unbelievable.
You say you only allow yourself to tic in the privacy of your own home ???  you need the strength you use when your out with friends to still keep them under control when your at home. Your proving you can do it, so stay strong and you will see the benifit :)

When you say the tics just come out, if you think about it, its the fact that your mind then knows that its safe to tic and your not going to have anyone look at you and say ooo look at them ticking away..lol   cos thats what people do....point and laugh...nobody wants that to happen to them.
So as soon as its safe, they just come out cos your letting them.  This is really hard to do and will only work if you are really strong minded i think, refuse to be beat by TS and fight it is what i say,  i did and won and my TS was really bad.