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I can help with people dealing with TS


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I am new to this forum and would like to help people dealing with this terrible disorder. I have dealt with tourettes, stuttering, anxiety, and ocd my entire life and would like to help other people dealing with this situation. I have a lot of experience with this disorder and have tried everything. If you have a question or need help figuring out a way to reduce tics, stuttering, ocd, or anxiety, feel free to ask.

-Lets cope

Edited by letscope
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Hello letscope,

would you mind telling us what has worked for you? Are your tics and stuttering better now that you are older? I think some of us parents wouldn't mind hearing when and if things start to remit....

 

thanks,

Faith

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Hello letscope,

would you mind telling us what has worked for you? Are your tics and stuttering better now that you are older? I think some of us parents wouldn't mind hearing when and if things start to remit....

 

thanks,

Faith

 

 

Hello Faith,

Throughout the last few years my tics have subsided because when I was a kid I had violent motor and verbal tics. Thank God I have not experience the verbal tics now that I am older because they were very embarrasing. I played basketball in highschool and college and have noticed that my tics increased tremendously due to exertion. I think not that I am older, it is easier to control my tics, but I still have violent tics that hurt my body(i.e. biting down on my molar teeth, looking in uncomfortable directions, shaking my legs, etc.) It is said that tics and stuttering should subside with age. I guess I could say that is partly true because I went to college and didnt stutter as much and my tics were lessened. With my tics and stuttering, some days are good and some days are bad so I couldnt say that this time period in my life I have seen a definant improvment in my tics.

As far as my stuttering goes, anxiety does play a big part in this. I have learned that tics and stuttering are related because of the location of the brain that triggers the actions. My basal ganglia has increased amounts of dopamine that can be the cause of several issues in which mine are tics and stuttering. I have tried several medications of the course of the years, but the one that definatly helped me is a medication called seroquel. Its an anti psycotic used for demetia patients, but relates to TS and stuttering because of the part of the brain it affects. This drug reduces the amount of dopamine reducing my tics and helping me to be able to think and speak clearer and not feel like my brain is going 200 mph. Although this medication can work, the side effects can get overwhelming because the medication can make you feel extremely sleepy and grogy the next day. Months ago, I got to the point to where I stopped using the medication because of all of the side effects involved and also I noticed my tics where comming back. A person on this medication has to increase the dosage because they will build a tolernce. Once I was up to 100mgs, I was way too tired to perform daily tasks to the best of my ability, and would get frustrated because I did not feel that sharp during that time period. I would recommend this medication, but if possible, try to stay on a low dosage.

Xanax is another prescription drug that has helped with my tics and stuttering. This drug is an anxiety medication that does not have any side effects. Make sure to regulate the amount you are giving to your child because you do not want them to gain a high tolerance for this drug. I try and only take this medication if I am having an absolutly terrible day with my tics and stuttering because it takes the edge off my anxiety and reduces my tics and stuttering.

-letscope

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Hi Letscope,

 

Sounds like you've had alot of severe problems...I'm glad things are going better for you now.

 

My son had big problems with stuttering as well, and motor tics, although much less severe than what you describe.

 

He spent most of his childhood in "speech" therapy at school for the stuttering....with absolutely NO improvement.

 

Then,...once the TS diagnosis was reached, the speech therapist basically washed her hands of it.....she said the stuttering was caused by the TS, and she "couldnt do anything" about the TS......so, there he was.

 

It wasnt until the end of 4th grade when I learned that not all speech therapists have additional training in "DYSFLUENCIES" (of which stuttering is considered)....and so I found a speech therapist elsewhere who had had this type of training.....we started going to him in May following 4th grade, and by September, my son was fluent 80-90% of the time. Over the following year (5th grade) he learned to use these techniques in daily situations, and now (age 25) he doesnt "stutter" at all...in fact, hasnt really since 5th grade.....

 

I'm not sure where your "blocks" are re: the stuttering, but his were primarily at the beginning of sentences......the basic technique the therapist taught him involved saying the words VVVVVVVVVEEEEEEEEEEERRRRRRRRRRRRYYYYYYYYYYY slowly......and then increasing the speed of speech as the sentence progressed. (As I recall, it started with just a list of words he had to drone out VERY slowly, looking at a mirror while saying each one VERY slowly........then, it moved on to a short phrase, then sentence, where the FIRST word or two or three were very slow, and the pace picked up as you went through the sentence. )

 

It was, of course, easiest for him to do when they were "practice" exercises....but in real life, when he was excited/etc he'd forget....so, it did take time over the year or so for him to remember to use these techniques in stressful situations......---> but once he knew he COULD do it OK in practice, I think it made it start being easier to catch himself and deliberately do so more and more in daily life. (he then had a speech therapist doing her internship for college working with him who was so great--> she bought him a card trick game, so he could do "card tricks" for folks, but had to remember to use speech techniques when talking through them, etc)

 

ANYHOW>...I just wanted to share with you in case you have only had speech therapists like my son first did--> who basically threw in the towel and said they "cant" do anything *because* its caused by the TS......--> there ARE techniques that can help, and NOT ALL SPEECH THERAPISTS are trained the same......to anyone with stuttering I would REALLY encourage them to call around to NUMEROUS speech therapists asking if they have additional training in DYSFLUENCIES.....then see one of them and see if they have some helpful techniques to teach them....

 

 

BEST WISHES....and thanks so much for offering to share your experiences :)

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Well, you did say "This drug is an anxiety medication that does not have any side effects." Which isn't so, not by a long chalk. I daresay you didn't have any, some people don't, but that's not quite what you said.

Glad to hear it helped you, anyway.

All the best,

Wombat140

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