Anyone out there?

Hi,
I just joined this group,i've noticed only 1 post here..where is everyone at? I am 32 with TS, OCD and ADD, Is there anyone here from Tenn?
Does anyone have any meds that actually help with the tics besides haldol?
Hope to hear from someone ...
tn_angel

.i just joined this forum also and am looking to share and learn new info about tourette's. i have a son .26..and a grandson....7 with tourette's.lets get in touch.........julia

Julia,
Hi, it's great to see someone post to my reply, don't know if anyone comes here much, i haven't been in a while to tell you the truth, shhhh..lol
I would love to get in touch, I actually go see my neuro on the 13th, hoping she will give me something new, as of right now, i'm off the haldol, I am currently on Trileptal,Calan SR, and Zyprexa.
How long has your son and grandson been diagnosed with TS?
are they currently on any meds for it?
I really would love to hear something works for it other than haldol, or other meds in that category.
Hope to hear from you soon,
Lynda

.lynda..........so good to hear from you.........i'm very interested in keeping in touch and discussing your progress with the meds, etc.....my grandson was just formally diagnosed in january although we have seem tics since he was 3. he has put on klonadine..........a little too soon to know how if this will help.......so far it makes him sleepy but does seem to take the edge off for him.my son jeremy, 26, has never been on meds...his choice.......although he has had some pretty rough bouts with the tics both verbal and motor........he recently married....bought a house....his new wife is pregnant....and started a new job.....so you can well imagine with all that stress..the tics are coming through! lol....he is now scheduled to see the dr and would like to try meds.........i am not familiar with the meds you are on and will research them......lets keep in touch.......here's my email.......butterflylady747@yahoo.com.........julia

I am a 56 yr. old female with Tourette syndrome. I cannot remember a day that my mind did not race, even as a child. My first tics started at 11, pretty old for first tics. It was neck twisting, and the eyeblinking started right after that. Sniffing is the only tic that I have that is called a verbal tic. Sometimes, I will say things twice with no control over it. I have been able to work all my life as an x-ray technician but not under stressful conditions, like in a big hospital.
My father had the eyeblinking and throat-clearing tics. Some of his brothers were alcoholics and some of his sisters have obsessive compulsive disorder. My sister hums constantly and has a forehead wiping tic. No one would actually know that she has TS. She has low self-esteem and is short-tempered. I have more noticeable ADD than she does. I am always losing keys and reading glasses, make the biggest mess when I am cooking something, wait until the last minute for things.

When I was about 40 years old, I started taking an antidepressant. After about 2 wks., I can remember lying down on the couch after work and not having the eyeblinking that would come so bad in the afternoon. And, the mindracing was gone.

I had tried Haldol, but that was a mess. I don't know why doctors don't know what to prescribe. TS is the same disorder as OCD. OCD is known as TS without tics. An antidepressant is typically prescribed for OCD. I am now taking Strattera, and it seems to work. It is known as a non-stimulant medicine for ADHD but is a type of antidepressant. There is a new drug that will be available this month called Cymbalta. I want to try it.

Hello,

My name is Kyle and I ahve had Tourettes Syndrome since I was 9 years old. I have had "tic's" ranging from extreme head "whipping" back and forth, to eye blinking, to prolonging of my tongue, to many vocal tics, clearing my throat being the most noticable. I have had other tics wgile dealing with my fight against TS. Now "tn_angel", you had asked if there were any other medications that work for TS, ADHD, and OCD besides Haldol? Being a person who has all three of these conditions, all I can suggest is that you work with your doctor to find a combination of medications that work for you. During my time with severe TS, I worked with the top TS doctor in Canada to find the correct combination of medicine to help with my conditions. I found most of them to work for about a 3-6 month period, them they seemed to "stop working". Currently, I am 20 years old and have been blessed to have my TS have gone into a slight remission. I still take medications to treat my TS, ADHD, and mild case of OCD. I take Resperidal, Clonozapam, and Ritalin to treat the conditions I have. This seems to be an excellent combination to treat the conditions and has been successful in the fight for 3 years now. I am now able to live a "noraml" life and am currently finsihing up my last year of a 3 year program in TV-Broadcasting and has started my own Video Production Company. In your second post, you mentioned three medications: Trileptal, Calan SR, and Zyprexa. I am not very familiar with these three medications. Are each of them used specifically for a certain condition? I will do some research on them, and if you would like, i can contact you with some medications that were very helpful in my case of TS, ADHD, and OCD.

Julia, You mentioned in your post abou the medication: Clonodine. This medication in my opinion is highly over-rated, and does not provide the effects needed to help a person with ADHD or TS. In some cases is does work, but in a majority is does not. Clonodine is a medication that is primarily used to treat people with ADHD, but in some rare cases, can help people with TS. I have taken Clonodine when I was younger, but it did not have an effect in helping my TS or my ADHD. In actual fact, it caused more bad side effects than it did to help.

Lastly "tewald" put a post about any "Non-Western" medicine that is available. Let me start by saying that stress can play a major role with people with TS. If your job or situations you encounter have high stress levels, you are prone for your "tics" to become more severe. A good way to reduce stress is to go for a daily run, preferable early in the morning (6-7 AM). Keep the run about 30-45 minutes and be sure not to become dehydrated. Other excersises that I use are martial arts (Tae Kwon Do) and Yoga, which should be done later at night, to help the body relax. You will notice that you will get better and "deeper" sleeps and will feel more refreshed in the morning. I have also experimented with accupuncture, which was extremely helpful in relaxing the muscles in my body. This was a temporary fix for TS, but I never really was given the opportunity to explore all it's potential. Give it a shot but make sure you go to a certified accupucture clinic. It is really amazing what this type of natural remedy can do to calm your nervous system down.

Well, thats enough for now. Hope I have been helpful to answering your questions. If you wish to speak with me on a personal basis, please contact Kyle a sheak19@yahoo.com with teh subject line reading "TS".

Sincerely,

Kyle

Hi, my name is Laura and I have Tourette Syndrome. I'm not going to tell you about my other diagnoses because there's too many to list... I'm 18 years old from Florida.

I used to have tics really bad, but then I went on Seroquel. Now my tics are small/unnoticeable.

Oh, and to anyone who's taking Haldol: please don't! I've tried it, it was brainrape, Seroquel does the job perfectly fine, and no one deserves to be tortured (taking Haldol was the worst experience of my entire life, even though I've been through abuse/depression/ suicide attempts/drug comedowns/severe physical illness/etc.)

<<[There is a new drug that will be available this month called Cymbalta. I want to try it.[/quote]>>

My son was started on Cymbalta a couple of months ago after taking Paxil . . . he does not have TS but he does have RSD. His experience with Cymbalta was not positive . . . he began to get paranoid about going outside of the apt bldg, then about going to appts, then about going in the hall to get the mail. he developed very bad tastes in his mouth making food unappetizing to think about, he did lots of vomiting, constipation was a major problem . . . after six weeks I asked him to get to the doctor and tell him the symptoms. When he came in the room the doctor commented something like "you look like hell!"

Yes, he did, he wasn't sleeping, his pain zoomed upward because of no rest, no decent meals . . . salads were the only thing that tasted normal to him.

He has been weaned off Cymbalta and returned to Paxil and his frame of mind, pain, appetite, etc. are all just about comletely reversed.

I think that the DNA tests they can do to determine which meds will work for you and how much you need is well spent money!!

hello, i've just found this site. we have 4 children, 2 educationally labeled as gifted, 2 with borderline IQ to gifted. not such a big thing, but i'm just stating it to give you background.

our 3rd child, who is now 11, has a very high IQ and has always been unusually attuned to people's feelings and attitudes. we noticed this when she was just a toddler, it was that noticable (she also didn't speak in sentences until she was a little older, then broke out in complex structure). for the most part we treat her at her "mental" age because that's how she relates to us (her 16 yo brother just made a comment on that last week, how its hard for us when she gives the rare typical 11 year old reaction to something, because she is usually ahead of us). because she is small for her age, most people treat her as an annoying puppy. she can usually shrug it off, though not always, and it bugs me like crazy.

okay, here is the deal. just about 3 years ago she began to quietly or silently repeat her own phrases - literally mouthing the sentences seconds after stating them. we were stunned at first - and for a while my husband made it a point to try to "get" her not to do that. finally i pursuaded him to ignore it, hoping that THIS reaction to it would lessen it. she did have some stress in her life at this time, she never had any friends her own age (coming from a 2 parent family, no cable TV, being academically over her schoolmates - all this made her somewhat different from the other children in the lower income neighborhood in which we lived)... but finally 2 years ago we bought a house and moved to another neighborhood. we had the opportunity to put her into a "gifted" school, but i felt socialization was the most important thing for her and turned it down. during the move this mouthing behavior was really accentuated. finally, 2 years later, it ebbed but recently returned with her entrance into 6th grade junior hight (again, friends are a huge issue).

i searched the web but never found a description of her behavior, until NOW. palilalia! and in finding this, i see that it looks like she has another behavior that i had NEVER thought was an indicator of something else - the repetition of a phrase or song sentence over and over and over again. she has been singing to herself since she was a baby and for the past 2 years sings with a chorale group, so i just thought this was related to her gifts with music. but now i see it is also an indicator of possible tourette's diagnosis.

should i get her a clinical diagnosis? is it worth it since she doesn't even realize she does this and i see that many children outgrow the symptoms. i must admit i'm afraid of the medical bills (we have a lot of them already) and honestly i'm also a bit afraid of the stigma. any advice on that? reading the last post from the young woman with all the website links was very freeing for me. i felt good enough to write this here after reading her post. i guess what i've most been worried about it the possible implications for other issues (her sensitivity concerns me enough to worry about psychological disorders in her future).

she also has orthostatic hypotension, just a footnote. she has experienced a black-out and temporary blindness from this, but is currently not being treated because her symptoms were not severe enough to warrent medication and the doctor felt we could watch it closely enough without medication, tg.

thank you for listening. at the very least this has helped me put this together in my head for the future!
d,a,g,s 's mom