Turretts Syndrome

Hi don...I have tourette syndrome also. I am 20 years old and have had ts since I was 5. It started out as motor tics and now I am vocal. I have had no luck with any medications. I think I am finally going to get some relief though...For once. I am on orap and have been for a while, I have been on it most of my life basically. I just recently added topamax to the orap and I notice awesome control over the tics, the ability to hold back and it has taken away or minimized most of my motor tics such as spitting and banging my teeth together. Its tough I know. I have been on pretty much everything. I have a whole list I could name for you. I would name them for you if you want so write back and let me know. I am only on 50 mg of topamax right now and 3 mg of orap. Tomorrow I increase to 100 mg of topamax which is november 8th. I can eventually go up to 400 mg a day with the topamax. Good luck to you and its a shame no one has responded to you except for me. That bites. Take care. :d

You still around here to read replies?

My 10 year old son has turretts and nf type 1. He hasn't prubity yet but the doctors say that is when we will see the true effects of turretts. Right now my son is only taking sretarra 20mg at night. I might have missed spelled the name of the med. He seems to be doing better with the meds so far. The one thing that I have notice to help is a strick routine and his dietary intake. Less suger less meltdowns and tics. You would be amazed on the type of kid he is when he is following his diet and is on his routine. It is hard to say no to my child you can't eat this or no you can't have that because of your turretts but he is much more calm in the end. Good luck to all.

My son is 7 and takes catapres (1.50 mg) at night. It really helps him with his tics during the day. He is very intelligent (a full grade ahead in school), going for his 3rd belt in karat next week, and he plays hockey in a league. Doing very well. But as he matures, more "side" issues are coming to the surface like hyperactivity and oppositional behavior. He's a great kid but the hyperness drives me nuts! I try my best to let him "be a kid" but sometimes it just overwhelms me and he gets in trouble for it. I'm working on my reactions (due to the fact that hes not doing it on purpose). Getting better at it.
Now my 3 yr. Old daughter is showing signs of ts. I hope to god it's only a "child hood" tic but i'm all too familiar with the onset of tics. My son had ocd terribly at age 2! She's not exhibiting ocd as of yet, but definately eye/facial tics. Breaks my heart when she says, "mommy, my eyes are blinking again". I suffered as a child but back then it was just "he's a little weird, he'll grow out of it". Turns out that I did not grow out of it. I grew into it. See what happens when my add kicks in?

My son is 12 y/o and was diagnosed this past summer with TS. Before that we had been told that he had simple motor tics from his pediatrician and he was put on Orap. When we went to see the neurologist this summer they changed his medicine to Clonidine which caused my son to become depressed. Diehlan is normally a very happy child, hyper- most definately but the depression was too much. Our neurologist wanted to keep him on Clonidine and wanted him to go see a psychiatrist. I decided to get a second opinion, as parents it is our respponsibility to do that if we feel our child is not receiving the proper care. Absolutely love our new neurologist, he took him off the Clonidine and said there was no reason to see psych. if it was the medicine causing depression. He put us on Topamax, 75 mg a day. Diehlan is really doing well on new medicine, tics have almost stopped and we ave not experienced any major side effects.

I had TS when I was in my youth, faded away at age 20 or so. I'm 35 now and in the past few years it started to return, and was either worse, or seemed worse since I have greater responsibilities now. I was having problems driving due to eye tics most of all. In my youth I tried clonidine, didn't work and made me too drowsy. I also tried haldol, worked over time but the benifits didn't out weigh the side affects(not to mention the associated risks). I recently went to a neurologist for the first time in years, and I asked if there was anything new now days. He gave me Topamax, and I swear, I can already notice a great difference. In addition, I can take my daily dose at bed time, so I don't have to worry about suffering the drowsy effect during the day. I think they might be on to something here, perhaps TS is a type of light epilipsy in itself. So far i'm pleased with the medication, it's even helped me cut back on drinking(not that I drink much), I hear they are considering approval for alcoholism treatment. Anyway, I just happened to land here while surfing so i'll probably never be back, but if you or your child has TS, ask about this drug...I think it might become a common treatment.

Have you heard of or tried baclofen? I was diagnosed with TS 5 years ago...btw i'm 19. I have been on this for over a year and it seems to help better than anything else had.

Hi everybody, I have a 10 years old boy with Tourett syndrom. He was diagnosed at 5 years old, he took all kind of medication, dexedrin, strattera, orap, haldol, even ativan, right now he is in a severe state. TADH with Tourett. We went to the neurologist on thursday, He was taking, Strattera 25 mg / day, Haldol 1 mg / day, and Adderall XL 25 mg /day. Because of his mood swings (aggressive) he decided to take him off the Strattera and replace it by Topamax. He started friday. I've stopped the Strattera and gave him topamax 25mg at bedtime /for the first week combined with Haldol 1mg bedtime, and the neurologist decided to put up his Addrall to 30mg in the morning. For the next 4 weeks, he'll be adding on more topamax.
week 1 = adderall 30mg morning
Haldol 1mg bedtime
Topamax 25mg bedtime
week 2 = adderall 30mg morning
topamax 25mg morning
Haldol 1mg bedtime
topamax 25mg bedtime
week 3 = adderall 30mg morning
topamax 50mg morning
Haldol 1mg bedtime
topamax 50mg bedtime
week 4 = adderall 30mg morning
topamax 75mg morning
Haldol 1mg bedtime
topamax 75mg bedtime

Do you find the doses high for topamax in daytime. I'm affraid he'll be confused at school and sleepy. What do you think ?

Thanks for answering

I had TS since i was 4 or 5 but i was not diagnosed with it until about 3 years ago and i am 25 now. Doctors have told me over there years that i had it but really never diagnosed me with it. I joined the army jan 2007 and i had a hard time and they diagnosed me with tourettes and after over 2 years they said i cant be in the army so they gave me a medical discharge for it. But while i was in they put on on Fluphenazine. It has been so good for me. I had vocal tics also but since i started taking that in april 2007 the vocal part went away. it has helped me so much so that is a option to talk to your doctor about. its 1mg fluphenazine. i am out of the army now and the VA pays for all my meds for that so i am blessed with that. i was on another med when i was little but it had so many bad side effects. if you have any questions for me write me my name is Mark.

Hey y'all, I have had tourette's since I was 6 (i'm 35 now) As a kid I was on everything that exists. I was on Haldol, THorazine, Ritalin, etc etc. Nithing seemed to help. Finally my mom said that if he is on all of this stuff and nothing helps, I'd rather him be drug free and twitch. It was a good idea, it was a lot easier to just twitch than to be pumped full of meds. However, as an adult, My tics got worse and I felt the need to supress them. Haldol made me want to jump out the window, Thorazine made me stiff all over, risperdal did nothinhg, orap did nothing, Zyprexa made me fat and suicidal. Finally I took xanax for four years and even though it helped, I developed a serious addiction. Finally I am trying this new drug Topomax. I have heard a lot of great things and I will report weekly about the effects. I HAVE ONE THING TO SAY TO PARENTS ABOUT KIDS WHO TWITCH: SOMETIMES IT'S BETTER TO JUST TEACH YOUR KIDS TO ACCEPT AND EMBRACE THEIR TICS AS PART OF THEIR PERSONALITY THAN TO MEDICATE THEM WHICH CAN HAVE LONG TERM DAMAGING EFFECTS.

sjtwitch - Juat started my 10 year old on Topamax tonight, along with his Tenex. He was reluctant due to the side effects... but Tenex dosage was getting too high. He hates his ticks, interfere with school, hockey, starting to get made fun of at school, and they are actually becoming painful. Please keep us updated on your progress with Topamax. I feel bad putting him on medication... but also wonder if it is sometimes more torture to not try to suppress the tics.

Hey there i have been in the army since Jan 2005 with TS.

I was diagnosed with TS about 1 1/2 years ago on my current base.

They first put me on Risperdal. that made me horribly depressed and worked temporarly and the problems it can cause out weighted what it can do for me.

but now they have me on topiramate ( topamax )

this is awsome, i am on 50mg in the morning and 50mg at night, and it helps me 99% of the day and night i love it!

i 100% recommend this!

if you have any questions write me.

Hi my son has Tourettes Syndrome. He is 11 and has suffered terribly since he was 8. We see a Dr. in Houston has him on Tetrabenazine which helped for couple of years now tics are bad again . Dr. added Topamax to help tics . I am praying this drug controls his tics. Before Topamax Dr. gave him Fluphenazine which did help but he had a reaction called Distonia to that medicine. My son hates his tics !!!!! I feel so helpless sometimes because I want to help him so bad and I can't. If anyone has advice or tips let me know
thanks, Vanessa