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  • Topiramate for Tics

    Hello!

    Hope this is the right place to post this. Has anyone taken topiramate for their tics? I have both motor and vocal, mostly complex tics. I looked up some side effects but was wondering about anyone's personal experience with it. I'm also on an extended release form of tenex that helps with some ADHD symptoms but doesn't help much with the tics.

    Thanks for any input anyone has!

    Char

  • #2
    Re: Topiramate for Tics

    That's not a common usage (even off label usage) for topiramate. Who has suggested this to you and why is it thought this might help you?

    Comment


    • #3
      Re: Topiramate for Tics

      Added: I've been informed that there are several studies on the use of topiramate with TS (I was not familiar with these). We'll be following up on this and I or Steve will provide more information.

      Comment


      • #4
        Re: Topiramate for Tics

        Though I do not have first hand experience with topiramate (Topamax) in treating symptoms of Tourette Syndrome here are some credible online references on the topic:

        http://www.bcm.edu/neurology/pdf/pos...mateTS_MDS.pdf (Attached)

        Topiramate in treatment of toure... [Clin Neuropharmacol. 2010 Jan-Feb] - PubMed - NCBI

        Tourette's Syndrome - American Family Physician (See Table 7)

        PsychiatryOnline | American Journal of Psychiatry | Control of Tourettes Syndrome With Topiramate


        Tourette Syndrome (See Background Section)

        Have you discussed this option with your doctors, and have other forms of therapy, including behavioural or habit reversal therapies been considered?
        Attached Files
        Steve
        TouretteLinks Forum

        Comment


        • #5
          Re: Topiramate for Tics

          Steve - yes, it was the option discussed with me by my neurologist after chlonodine's side effects messed with some GI problems I already have. It was one of the lower-strength meds they wanted to try with me next. I'm also doing therapy through an OCD clinic with a psychologist who specializes in OCD and Tourette's who's working on cognitive behavioral therapy with me.

          Thanks so much to both of you - I will definitely look through some of the articles posted. I tried to find some on my own and was able to find much so this is really helpful. Thanks for doing some more research for me!

          Comment


          • #6
            Re: Topiramate for Tics

            You are most welcome Char. I'll try to do more research next week to see what I can come up with.

            Do keep us posted on your progress.
            Steve
            TouretteLinks Forum

            Comment


            • #7
              Re: Topiramate for Tics

              As promised, I investigated this question with members of the Medical Advisory Board of TSFC during last week's TSFC National Conference.

              Their advice, based on the Canadian Guidelines for the Evidence-Based Treatment of Tourette Syndrome was that topiramate would be a fourth line choice for therapy, after CBIT, anti psychotics, and alpha blockers.

              Recommendation Grade for Topiramate: Weak Recommendation, Low-Quality Evidence.... Source: Canadian Guidelines page 31
              Steve
              TouretteLinks Forum

              Comment


              • #8
                Re: Topiramate for Tics

                Thank you so much STeve! That's awesome!

                So I just found a copy of that study online and did look at some of the medications listed but I guess I'm still a little unsure. So I'm doing CBT,and I believe chlonidine which I've already tried and can't take is an alpha blocker. I'm not sure what anti-psychotic medications would be - do you have an example? Am I otherwise correct in saying that other than anti-psychotics, topirimate might not be a bad choice for me at this time as I seem to be trying or have tried the other three options?

                Comment


                • #9
                  Re: Topiramate for Tics

                  topirimate might not be a bad choice for me at this time as I seem to be trying or have tried the other three options?
                  Char,

                  To determine what medication option is best for you, if at all, you need to have a discussion with your doctor who knows your medical history and the nature of the symptoms that have to be addressed.

                  It would be unethical for us on the Forum to make any form of suggestion.

                  It would be unrealistic, according to my understanding of medication interventions for tics, to hope to eradicate every one of your tics. You have taken steps to control ADHD symptoms, which is a rational approach, because associated disorders like ADHD, OCD, anxiety and other mood disorders are generally easier to treat than the actual tics, especially with medications.

                  You mentioned doing CBT, Char.....is the CBT intended to help with associated disorders or with tics?

                  If with tics, you may want to ask your therapist / doctor about the behavioural treatment specifically designed for tics called Cognitive Behavioural Intervention for Tics or CBIT.

                  CBIT addresses the tic(s) you feel are the most important to you to be addressed, and by using specific behavioural strategies, a therapist trained in CBIT can help you manage that (those) tic(s) in a way that does not necessarily involve medications and has been found to have a high success rate in controlled clinical trials.

                  CBIT is now the first line recommendation by The TSFC and European Tourette advocacy groups for both children and adults.

                  In response to your question about the medications used to treat Tourette tics, I would point you to a couple of Forum posts, and the attachments they contain, that should provide the insights you're looking for along with how these options rate in effectiveness and tolerability.

                  Canadian Guidelines for the Evidence-Based Treatment of Tic Disorders

                  Medications for Tourette Syndrome (TA)
                  Steve
                  TouretteLinks Forum

                  Comment


                  • #10
                    Re: Topiramate for Tics

                    I was hesitant to put my son on medication, but when his tics got so bad that he could not walk, his neurologist said he had seen good results with topamax in his patients. So my son went on topamax about 4 years ago. It took a week or two to start working like the dr said it would. My son's tics were essentially gone. He stayed on 12.5mg for awhile and we increased the dose to 25mg. He was about 9yr when we started it. He stayed on it for two years. We took him off of it 2.5 yrs ago. When he was on the topamax he had an occasional eye tic, but that was so much better than the previous tics. Before topamax every part of his body ticked, even his abdomen. This dr was a miracle for us. I am so thankful for topamax. He had no side effects either. His sleep walking stopped also on the med.

                    Comment


                    • #11
                      Re: Topiramate for Tics

                      Erikah,

                      Thank you foe sharing your son's experience.

                      How is he doing now and how old is your son at this time?
                      Steve
                      TouretteLinks Forum

                      Comment


                      • #12
                        Re: Topiramate for Tics

                        Steve, my son is now 13yo. He is doing fantastic. He has not been on any medication for 2.5 yrs. he still has an occasional eye tic that no one really notices. It's primarily when he is overtired. He started tics at 2yo.

                        Comment


                        • #13
                          Re: Topiramate for Tics

                          Erikah,

                          my son is now 13yo. He is doing fantastic
                          Great to hear! You may want to further advise him that although his symptoms have subsided or have gone into remission, that he should be aware, going forward into teen years and adulthood, that potential triggers such as stress, anxiety and fatigue might adversely affect him if he experienced Tourette related tics in his earlier years.

                          He should be conscious of practicing good sleep hygiene, especially while pursuing his studies, which should continue as he builds his career. Understanding stressors and avoiding them or finding ways to mitigate them should also help.

                          Finally. if indeed he received a definitive Tourette diagnosis, it should be discussed in with his life partner if there is ever any thought to having a family.

                          I mention this only because if he continues to be symptom free, and at some point chooses to have a family, it would be wise to discuss his medical history with his life mate, if for no other reason that for mutual awareness, in case any symptoms evolve in his child(ren).
                          Steve
                          TouretteLinks Forum

                          Comment


                          • #14
                            Re: Topiramate for Tics

                            Thanks for the advise. The dr never definitively diagnosed him with TS, but he does meet the criteria. His older brother also had tics from 4yo until they completely stopped at 9yo. He is now 15. It's definitely in genes. Thanks again!

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