Tourettes Syndrome - Please Be Honest

Hi! I just found your post and thought I would reply :) I just turned 34 yrs old and have tourette's since I was about 10 yrs old. I unfortunetly was a "late bloomer" and was not diagnosed until I was 22 yo, though. Ts (tourette's syndrome) can be different in most people with the disorder. The tics range from mild to severe. I have both mild and severe tics myself. My tics can sometimes be very painful! It just all depends on how stressed I am or how relaxed I am for whether or not I tic alot. My tics are looking over my right shoulder, eye blinking and "popping" my arms/elbows. I also sniffle. To me, the tics can be embarrassing at times. Sometimes I get weird looks from people, etc. Most of the time I just let it go, but other times it makes me very mad! I have learned to live with it over the years, though. I was more worried about my children having ts or getting it. (its hereditary) more info...I am a single mom with 3 kids. My two youngest have ts, but only a mild form of it. Sometimes they get teased at school, but they tell others they have it. I have also told their teachers so they are aware. Along with ts comes other disorders as well such as adhd and odd. My son has both of these. (my middle daughter only has adhd and mood disorders) anyhow, if you would like more info, please feel free to send me a msg! :)

jeannine

My grnadson, might have tourettes. And I am very worried about this. Hi has been ticing for 1 yr. Blinking, eyes rolling into his head, jerking his head back and forth. Saying ss sounds. No meds yet. But I am scared and so is he. Anyone want to talk about this call 813-926-7537
anything will help. Anybody please tampa fl patricia pico

All through my childhood I had a variety of tics, both motor and vocal.
It was never diagnosed or pursued, as my older brother had learning disabilities and acted out in school. He was always in disciplinary trouble, and was going to multiple child psychologists at the time.
I'm now 45 years old. At that time, very little was understood about either learning disabilities (my brother) or ts (myself).
I learned to control the tics as much as possible. However in times of stress, I would find myself completely overwhelmed by the tics.
Later in life, I developed chronic back and neck pain. I very belatedly came to several conclusions about myself.
One was that "they" only recently recognized that there are milder forms of ts. Not just the version portrayed in the movies and tv, where the sufferer is cursing uncontrolably in addition to the tics. I only ever had motor tics such as blinking and head jerking. My vocal tics were merely easily hidden grunts. Otherwise, my life was pretty normal.
I began to realize that I have a somewhat lesser version of ts.
Also, my orthopaedic doctor was amazed that one side of my neck was highly arthritic and damaged, whereas the other side was essentially normal. I belatedly realized that this was the long term damage of the head jerking of my youth. I thought it was important to mention this, as it shows that tics are not necessarily harmless inconveniences. I am truly suffering now from the long term effects.
I went last year to a neurologist with my suspicions and findings. Of course she cautiously ruled out all other neurological possibilities first.
She then placed me on haldol. This effectively stopped the tcs, and showed me there was hope. However with time I developed a sensitivity and dyskenesia began. This was a frightening condition in which my feet in particular began to move randomly. I also developed abulia, which is basically the feeling that you are becoming stupid, but don't know quite why... Sort of a mental fog that you can just barely feel creeping in. This was worse than the tics because I felt as if I had truly lost motor control over my own body, and felt as if my iq had suddenly dropped several points.
I had to "detox" for a couple of weeks, then she put me on orap. This has been very effective for a longer period of time. However I am finding that I feel restless, which I can live with. But worse is that my speech is becoming slurred. I see the doctor in a week. Meanwhile I didn't take my morning dose of orap. I wanted to see if my speech improved. So far, only mild improvement. However, I can feel the tics sort of creeping in and 'trying' to come out. One missed dosage and I already feel a struggle for control. However I know that the doctor will invariably tell me to stop the medication and detox once again before starting me on something new.

My question for anybody out there... Is there another medication that you found to be effective?

Obviously this condition can be controlled through medication. However the side effects can become difficult, if not intolerable to live with. At least that's been my experience thus far.
Any shared experiences would be appreciated.

A dignosis of ts is not the end of the world. I am 35 and my son is 7 and we both suffer from it. I see my son struggling with it but as he matures, he is coming to terms with it. Of course, I wish he would not have it, but theres not alot I can do except help him live with it. There are days when you think "this stinks and I want to hide in a corner or sleep for 2 weeks" but there are alot of positives as well. Ts sufferers are the brightest, deepest thinkers, most creative children I have met (ibelong to a ts support group). There is hope beyond tranquilizing them. Trust me. It gets easier (and in some respects, harder). No matter what, be thankful that you (or your child) are "healthy" and able to be here to talk about it. Some kids are not so lucky! Seek treatment and support for your children. Most of all, read all you can (good and bad), support them, love them, and cry when you need to. Being there and letting them "tic" at home (a relaxed" atmosphere is the best thing you can do for them!
Good luck and I hope this helps (even a little).