View Full Version : Medication and Tourettes Syndrome


bigbowlindude
08-15-04, 01:10 AM
Hey everyone I was curios what luck everyone has had for there medication.
I was diagnosed with ts a few years ago, and I'm going to see the neurologist in a few weeks to get diagnosed with add. I am currently not on any medication for my TS, the last neurologist I saw said the side effects were too bad for my mild case. I didn't like the last one I saw he seemed in a rush to get me out, and he based his diagnosis on the short time I was in there when I was "holding back". I was thinking a heads up for medications wouldn't hurt, especially after I read what poor energizer bunny went through when she was diagnosed with add. Thanks everyone.... sorry if I ramble

Energizer_Bunny
08-18-04, 12:36 AM
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bigbowlindude
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Ah, please don't call me "poor energizer bunny" and the reason I say that is that with TS, I don't want people to feel sorry for me. But I sincerely thank you for your compassion. :)

The neurologist that your first saw may have been correct depending on the severity of your TS. When you go to see a new neurologist, and because you have a tendency to hold your tics back, you may want to go ahead and let them happen because he/she needs to see your tics for proper diagnosis. If you have problems in doing this, you may want to have someone use a camcorder and tape your tics so that the neurologist can view them under your normal circumstances.

If your tics are not severe, I must say that I agree with the neurologist in that if the tics are not that bad, the side effects of the medications can be a lot worse. You need to consider if you and can deal with your tics without medication.

I went to a seminar on Tourettes In January 2003. One of the things that they talked about is that if a person as Tourettes and other conditions as well, it is important to treat the disorder that is worse before actually treating the TS. For example, if you have OCD and ADHD, and your OCD causes you more problems than your ADHD or your Tourettes, it is best to treat the OCD

I will say that the general medications used to treat tics are anti-psychotics and the side effects can be rather bad. When I was first placed on medication, Iwas a drug called Proxlin and within 3 days I had a reduction of 75% in my tics and I felt so thrilled, however, eventually the side effects started setting in, which included major anxiety, weight gain, lack of motivation and I was starting to have some tardive dyskinesia. I had to be taken off of the medication.

TS can also be treated without anti-psychotic meds which may help. Some of these medications found useful in the treatment of tics include clonidine, guanfacine and clonazepam. Botox injections are also another option.

However, would you mind sharing with us your tics?

Thank You

Piupau
08-18-04, 12:45 AM
I'm getting along med free. I don't like the side effects from the meds and I've ssen what Risperdal and Haldol has done for my friends. It's SCARY!

bigbowlindude
08-19-04, 08:57 AM
My main concern was the medications that make TS worse. I am sure the neuro will know about that stuff, I figured getting a heads up wouldn't hurt. I don't think my TS right now is too bad, I can hide it for the most part.. not too many peoplel have asked me about it. It does seem to go in waves, sometimes it will get pretty bad my girlfriends mom even noticed it while she was on the phone with my girlfriend(times like this I would consider medication).

Hmm some of my tics...
blinking my eyes, sometimes short duration sometimes longer
raising my eye brows
scrunching my lip
any kinda moaning/grunting sounds
I kinda bite the inside of my lip sometimes
I have alot of different face ones... tought to describe.. tougher to remember some of them
nodding my head(this is the one I hate.. I have given myself many many headaches and very stiff necks)
That is about all I can remember.
Hey Piupau, are you completely med free? Or do you take meds for add?

Piupau
08-19-04, 12:37 PM
Completely medfree... except nicotine ;) No really, I do need meds for my adhd. I got my dx last year but I haven't found any doc who'd give me meds. But I'm working on it. It's a different situation in Sweden than in US because adult adhd is pretty new here and suddenly they've recognized there are many of us. The docs used to send us to the psychiatrists and many of us with adhd got a dx of borderline or something before and they got lost in the system, became guinniepigs for new untested medications... It's hard to make changes in the system.

hopetalk
09-12-04, 03:21 PM
I was wondering what you had observed with your friends taking haldol. I have ADD with Tourette's. I had taken Ritalin before but now I take Ritalin and Haldol. My tics are almost completely gone but I notice that the Ritalin doesn't seem to work as well and I seem to have lost that "spark" that so many of us with ADD seem to have. You know, that unchanneled creative spontenaiety that makes us interesting. I now feel boring, lethargic, and apathetic about most everything. It's not what I would call depression either...been there before and this doesn't feel the same. Insight anyone?

Piupau
09-13-04, 12:06 AM
I don't remember what my one friend tried (Might be risperdal... or not), but he got very slow and "stupid". My other friend tried Risperdal and become like a zombie. She just sat like a plant stearing at the wall. :o Luckily both realized they had to stop.

hopetalk
09-13-04, 12:20 AM
I may have to stop...I don't know. I've went from 1 mg to 1/2 mg to see how it does. I may try to stop taking it after this. All I know is my brain feels slow...wmy wittyness is gone and I don't seem to have the mental agility that I once enjoyed. We'll see, I'll toy around with the doses for awhile and see what happens.

Energizer_Bunny
09-15-04, 05:34 AM
I am surprised your doc has you on Haldol. There are so many newer anti-psychotic medications out that that treat TS. My doc first put me on Prolixin, 1 mg twice a day. In Prolixin tardive dyskinesia is less likely to happen. I did have side effects and as a result I had to come off of the medication. I had acute anxiety, weight gain, and Akathisia which has been described as a sense of "inner restlessness", which is a subjective sensation of restlessness that has a strong component of motor restlessness where I could not keep physically still and maintain a static posture for an extended period of time. I felt very fidgety, and had a strong urge to repeatedly or constantly shift position in a chair, or make constant rocking motions, or constantly cross and uncross his legs, and constantly swing my legs to-and-fro. I had to come off of it. But I have heard of a few other people being on the medication that did not have the same side effects as me. I can say that I did have a 75% reduction in tics within 3 days. But we have to remember, how one person reacts to a medication, another may not!!!!

uniquemess
05-12-08, 10:02 AM
I'm getting along med free. I don't like the side effects from the meds and I've ssen what Risperdal and Haldol has done for my friends. It's SCARY!
could you tell the side effects of halodol and risperadal in detail that your frnds experienced. i have had tics but recently they have come up to a level of being annoying spl my tongue protusion and itching and head jerks............i just started taking risperdal 2 days back ..........thankss

uniquemess
05-12-08, 10:05 AM
I was wondering what you had observed with your friends taking haldol. I have ADD with Tourette's. I had taken Ritalin before but now I take Ritalin and Haldol. My tics are almost completely gone but I notice that the Ritalin doesn't seem to work as well and I seem to have lost that "spark" that so many of us with ADD seem to have. You know, that unchanneled creative spontenaiety that makes us interesting. I now feel boring, lethargic, and apathetic about most everything. It's not what I would call depression either...been there before and this doesn't feel the same. Insight anyone?
wow i can relate almost completely with this msg of yours ............ where r you as of now ( in terms of your situation )

Celticgoddess
06-15-08, 10:24 PM
My little guy has a severe case of TS and he's on a low dose of Risperidone and it has worked wonders. No nasty side effects at all. :)

MrUbiquitous
10-12-08, 12:29 PM
I am a 39 year old male with Tourette's, and possibly ADD. I started on haldol..(zombie music plays here)...not good....I lost the 'spark' and i was lethargic, listless and slept most all day. I changed to Orap (Pimozide) and I am on 2mg a day I take concurrently with Provigil (200mg) for attention problems, depression and sleepiness. I would reccommend Orap to anyone who wants to get off Haldol, it worked wonders for me. My tic severity is probably a 5 on a one to 10. At one time it was a 7 or 8. Medicated it may be a 1-3 or less. One thing that REALLY worked..like a miracle..I went to an Osteopathic Neurologist who did a series of 17 or so adjustments on me.I went from a 7-8 severity to a 0-.5 in a matter of 2-3 months. Amazing. I have since un-adjusted myself thru time and need to go back..but it helped my concentration as well. I would reccommend an Osteopathic Neurologist not a normal M.D. but a D.O. first and Orap second or a combo of the two..but definately the 1st. Hope this helps!:cool:

TTdrummer
10-13-08, 11:29 PM
I had similar tics to bigbowlindude when I was a teen. Prior to that, as a young kid, I had a pretty severe neck yaw that were disturbing to others around me. I guess I didn't like people staring at me so I reconditioned myself into different tics that were less obvious. When I started driving I found that my tics changed slightly again so that as my head twitched in one direction my eyes would roll in the other direction so they never left the road. I guess necessity is the mother of invention. (Incidentally, my buddy and I took our road test together. He failed his and I passed. He couldn't believe they let me drive a car with my tics but I guess the testers are used to very nervous 16 year olds...)

As I got older my tics started dropping off and stabilized into some head shaking, neck muscle flexing and throat clearing. Hasn't changed much for about 20 years now and I don't feel the need to medicate. Like bigbowlindude my tics increase in severity with different activities. Generally speaking the more brain activity the more tics. Using a computer - tic. Engaging conversation - tic. Brainstorm - tic. Reading - tic. Anything where I can zone out and the tics subside (watching a movie, driving, listening to music, sex :)

Years later as an adult I saw a cognitive therapist for anxiety related issues. TS wasn't really something we were focused on but in passing I mentioned this reconditioning that I experienced as a child. My therapist said that some cognitive psychology techniques had been shown to be effective at reducing tic severity. Specifically she mentioned concentration therapy. I never followed up on this but it sounded intriguing.

I'm a huge advocate of medication if you can find a drug that works for you. If you can't though then cognitive therapy might be a workable alternative (although it truly is hard work, intellectually and emotionally).

To date I haven't used medication for TS and am perhaps lucky to have had a normal life. In close to 40 years I have never once been asked by any adult about my twitch. Sometimes I can sense they want to know so I steer the conversation in a way that we can talk about it (they will ask my wife though!). A funny thing though is that young kids will frequently ask, "why do you do that?". Their parents gasp in horror but you can just tell the kids don't have an ounce of judgementalism in their minds. They just want to know.