Tourettes from Childhood to Early Thirties - Advice

[MissX]

I have been reading this forum for some time now, and have decided to post my own story in the hope of some advice to guide me in right direction.

 

I am a 31 yr old female, and have had tics since as early as being about 6 years old. I remember being very young and having a sort of ear popping tic which made me uncomfortable. It was not too serious, but then after a big move from the UK to Australia at about age 8 I remember it developing again. I had the eye rolling, blinking and more I cannot really remember. I also remember developing severe OCD at that time, had to wash my hands constantly, had to say the same thing every time before leaving a room etc. My parents did not do anything about it, and eventually around age 11 - 12 it disappeared. I was fine until the age of 15, where my tics came back, and have been with me ever since. I have neck turning, eye blinking, a constant cough, throat clearing and a few vocal tics (high pitched squeaks) and sometimes full body shakes. They have been of differing severities over the years, sometimes its ok, sometimes its so terrible I don't know what to do. I have seen a couple of unhelpful doctors, and it has gotten to the point where I feel silly even talking about it because of the reactions I have have had. So i'm dealing with it in silence and its becoming exceedingly difficult.

 

From reading this board I have gathered there are many triggers, and I'm finding the whole thing so overwhelming I don't know where to even begin. One thing I do know is that I have had tonsillitis issues pretty much since I was about 5, but not severe enough to have them removed. I do remember being very ill just before my tics came back when I was 15, and was wondering about the PANDAS connection. But from what I have read it is very rare in adults. So I'm wondering if that could be a possibility. Also I remember once I was on a candida diet, as I thought that might be the trigger and I took some very strong garlic tablets (to kill the candida). My tics went so out of control I was crying myself to sleep, it was truly horrible. I stopped taking the garlic tablets and the tics became under control again. But I have gone days without eating garlic and my tics do not seem to get any better. I have also tried taking magnesium, but did not see any particular improvement. I stopped after a couple of weeks, perhaps I should have kept going. Or it could have been the wrong sort I'm not sure. Should I try a naturopath, allergy specialist, dentist (I have an overbite and now I am wondering about the whole TMJ connection). I am in Australia, and there are not as many resources out here.

 

I would appreciate any advice from the wonderful people on this board, you are all truly amazing getting through what you all have to deal with, and I hope everyone is finding success with their methods.

 

Thanks in advance

[Chemar]

Hi

I just wanted to welcome you to the forums

 

very rushed for time right now but will try to reply tomorrow.

I have a link in my signature about what has helped my son (now an adult)

Also check the pinned aka "sticky" threads at the top of the forum for good info

 

all the best

[laurena82]

Hi Miss X--

Welcome

 

I'm not any expert, but just wanted to say "hi" and "welcome" to you also---as I just looked in to see what was new here, and the board doesnt look very busy so you havent gotten many responses yet.

 

Chemar has and will give you good advice----when you read here, you'll see so many have had experiences of degrees of success with so many different things----it IS hard to know where to begin.

 

From your history, the PANDAS connection seems relevent, perhaps. Another thought---since so many things to try include diet modifications and dietary supplements---eating a "healthier" diet of more basic natural foods never hurt anyone---that might be a simple place to start. (If/when you want to avoid certain food allergans, you pretty well have to be eating basic foods,as commercial foods have so many additives/other allergans in them---eg food starches/corn syrup/whey/colorings/flavorings etc---you cant really tell what youre getting/avoiding until on more basic natural foods diet anyhow) And then while you're doing that--start reading up on other things.

 

Also--it is intriguing re: the lack of symptoms ages 11-15----------any thoughts you have on that? Changes in enviroment/living situation? (all I can think of is hormone related?)

 

Consider also time of year--------are your symptoms worse one season vs another?

 

 

((((((((((hugs))))))))))))) and best wishes......!!

[guy123]

There is some good advice on this forum about ways to find your triggers (certain foods, etc.) which can be useful. For example, some people are sensitive to MSG. Other people are sensitive to chlorine in the pool, etc.

 

There are also some supplements and natural treatments listed that have helped some people (vitamin B, taurine, magnesium, etc.). Keep in mind some supplements also make other people worse. Since everyone's chemistry is a little different, there's no one-size-fits-all answer.

 

If you choose to go the prescription medication route, here is some information to bring you up to speed. It's a list of all known prescription medications that have been used to treat tics. Study this or print it out and bring it with you to the doctor to make sure he doesn't start you on some super strong medicine with powerful side-effects (such as Haldol).

 

http://www.tourettestreatment.com/list-of-treatments.php

 

Generally speaking, for most people, the prescription medications with the least severe side-effects are:

 

- Clonidine

- Tenex

- Topamax

- Marinol (prescription, pill form of marijuana)

- Marijuana

 

While some people have adverse reactions to those (for example, Clonidine causes rage in some people), on the whole they tend to be less severe than drugs in the neuroleptic class for example, whose side effects include permanent movement disorders and sudden death.

 

Whether with supplements or medications, always start with a very small dose, smaller than what you think you need. And discuss this with your doctor.

 

Do tons of research on everything before you do anything.

Edited July 26, 2011 by guy123