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Am i stuck with TS for life?


Guest Guest_B_N123

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Guest Guest_B_N123

:)

Had my appointment with my neurologist on Friday, and just moaned and moaned. told him i hated having tourette syndrome, told him its the worst thing ever and id rather not do anything than go out into public and have people look at me like im hitting myself :(

 

On saturday there was a religios gathering i had to attend with my family, but noway i couldnt go! mum n dad got angry because they said i cnt hide away from everyone! i didnt go, didnt want people sitting n watching me. noway.

 

its getting me so down at this stage of life. it didnt bother me before because id idnt care. now, i js dont know who to turn to, i get teary on trains, when i walk. i get angry at people.

 

just want to be able to STAY STILL!! ,

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BN123, Have you tried seriously eliminating artificial colors and flavors from your diet? If you've tried other things, and they haven't worked for you, then I really recommend that you try this. It makes a HUGE difference for us.

You have to do it completely, and you have to give it about 4-6 weeks before you'll truly know if it's helping or not. It's difficult at first, but then it becomes much easier. For some, the results are obvious within 1-2 weeks.

Let me know if you want more info.

Hang in there and keep trying to find your triggers...

Jeff

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i just dont know where to begin, i dont know how to

 

my life is so busy at the moment, that i just eat what i get a chance to. i cant think about it.

 

some help as to how i could find out what my triggers are would be helpful..

thanks

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I to think you have to start to eliminate some items from your diet. We sow changes within couple of days (even though firs two were very bed.) I would suggest eliminating artificial colorings and flavors, sugar and milk and milk products, yeast and glutens and see how you are doing. There are steel plenty of foods left: meet, fresh veggies, rice, potatoes, you can use UTZ potato cheeps but plane not flavored, fruits (but not citrus, I would not recommend it because you might have reaction on that one) olive oil (no vinegar, because it is yeast forming). In the health store you can get Ghee Clarified Butter (it is butter which is lactose and casein free.), also there you can get rice bread yeast free. Just toast it and you can use if as bread. You can use rice crackers and rice flour. As for juices use only sugar and artificial colors free. And also I would exclude corn and soy.

You have to try this diet at list 6 weeks. (Even though if you follow it thoroughly you will notice the differences very soon). After 6 weeks you can try add one pure food at a time and see your reaction on that. (Pure food I mean like sugar but not candy, or like milk but not yogurt etc.). Allow at list 3 days for pure food for reaction. (I mean for 3 days add milk to your diet and watch for your reaction. If you are fine than add next one, if you have reaction remove that food and wait 3-4 days for triggered food to leave your system than add a new one. And so on until you find food triggers for your condition.)

Meanwhile I would recommend some tests for heavy metals and yeast etc.

If you need some more information let me know.

 

And good luck. We all are trying to fight this.

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hi BN123

I know what you are going through. Please try and beat this thing. I work in retail and I have to face people every day.Sometimes I think they buy things from me because they feel sorry for me... :) I have found that if I be myself, be honest, and sweet that you get alot of people that want to be around you because you are a GOOD person, that you make THEM feel good. I find that the people I work with and surround myself with want to be around me,they think I'm sweet (that is true :D ) I am very warm hearted and they see ALL of my good points and know my true character. I would rather be a GOOD human being that has tics and friends than a ticless, heartless person, fantastically good looking,that is popular but b----y, but really at the end of the day, no one truly likes them.

BN123 just be yourself, go to social gatherings, let people really get to know who you are. If they stare at first, they'll soon get bored with that and then start to overlook the tics and see you for who you really are :(

Buddy.

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Guest_B_N123

 

It is also very possible that you are suffering with depression which is a very real and treatable part of TS in many people.

 

If you arent on any medications at the moment you may want to consider trying 5HTP (5 hydroxytryptophan) which helps to elevate seratonin and so help with depression.

It also brings relaxation and so helps you sleep, and my son has found that the relaxation also helps the tics too.

 

IT CANNOT BE TAKEN WITH CERTAIN MEDS THO!!!!!

 

My heart goes out to you cos it is really other people's reactions to tics that make it so much harder isnt it. Most of the time you probably dont even realise you are ticcing till someone else does!

 

But you really do need to take the offensive here and make some positive changes to improve your situation.

 

dealing with depression is a major step in the right direction

and

I wholeheartedly agree with those who have reminded you that a healthy diet with avoidance of artificial junk can make such an enormous difference.

 

you will start feeling better and ticcing less and then have the energy and desire to start implementing more positive changes and before you know it

 

living with TS will be less of a burdern and life will become enjoyable again :D

 

I am not just dishing out platitudes.......I really am speaking from experience!

My son was suicidal 5 years ago at age 10 :( and today he is loving life :)

and even appreciates the uniqueness that his TS has imparted to him.

 

hang in there B_N123.......there is LOTS of reason for hope and encouragement!

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  • 2 weeks later...
Guest Elizabeth

You should be thankful that they doctors diagnosed you with ts. I was so happy when my doctor diagnosed me. I have lived with ts all my life. I have tics that are very noticable to the human eye. As I was growing up i went to numerous doctors and speech theropist. I went to a neurologist that said there was nothing wrong with me. They speech theropist never mentioned ts to me. I never understood why I couldn't control the tics that i had. I can remember staying home some night because my tics were so bad. I had to take my little girl to the doctor and I couldn't even drive cause my tics were so uncontrolable. Talking to anyone was hard because I stutter also and my head was going 100 miles and hour so i would hold my breathe and no words would come out. I was finally diagnosed when I was 28. It was the most wonderful diagnosis that I have ever received. Now I am taking medication and the tics aren't as bad. My stuttering has also improved. I look at it this way. God gave us this disability for a reason and it makes a very special. It is what makes us unique. It makes us a stronger person. When I have my tics, Winking my eyes, People aask me what am I doing. I tell them right off the bat that I have ts and they accept me with no problem. People are more aware of ts now than they were 10 years ago. My advice to you is to try to get on the right medication and it will help. Keep that head up high and be thankful that there is help out there.

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Elizabeth..I give you a lot of credit for just being able to come out and tell people..I have had TS all my life..I am 31 now..Only a handful of people know...like you its pretty unnoticable...I can control things pretty good so no one really knows I have it unless I tell them.

 

I dont know what I would say if I had a tic that came about one day that I couldnt control...Sometimes I feel embarrassed that people would think differently of me.

 

Scott

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Guest Guest_B_N123

im constantly embarrased about TS. its not nice at all.

 

some days i get over it and accept it but as soon as im out, there you go, sum heartless fool who cant stop staring

 

i try to pick bad things out of them! (spotty..ugly) ops! i shouldnt but why they look at me

 

some days i get really depressed.. i cant control my arms!!

 

i may try acupunture but i hate needles!!! at the moment im not too bad

ive stopped taking fish oil, stopped magnesium zinc calcium combo as i needed a break and stopped my b6 n b21 vits!

 

thing is when i finally accept it maybe i'l feel better, but at the moment i still think this isnt me. its not happening to me.

 

still waiting fo the day..

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:unsure: Hang in there. We have eliminated artificial colors and flavors from our diet. My son also takes medication.. What I think helps the most is talking to someone about your feelings and that someone can validate the feelings. When we told people and explained that it was a neurological problem they seemed to understand it better.

 

Hang in there. Also, find a support group.

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Guest Guest_B_N123

ive been reffered to a phychitrist now to deal with this

 

im trying to find support groups in london

 

proves difficult as im on my work placement as part of my degree, whcih consists of working 5 days a week.. up at 6.30 bed at 11!! my 17 hrs days!!

 

if anyone knws of any support groups pleas let me know

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