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December 14, 2012Posted in: News & Information Tagged:

A Personal Account of Living with Tourette Syndrome & Associated Disorders, Part 2: Treatment

This blog article was originally posted on New Jersey Center for Tourette Syndrome’s TS Parents Online Blog and is republished here with kind permission.

 

In my post yesterday, I talked about what having Tourette Syndrome was like in my early life. Now, I’ll talk about how it started to be treated leading up to present day. My initial treatment was as follows: I was on Pimozide for a few months, and it turned me into a virtual zombie. Then I was put on Sulpiride for about 4 years, and it was better, but it took a good part of the life out of me. Then I was put on Olanzapine for 5 years, which was better again, but it still took a good part of the life out of me. In May 2010, my new neurologist put me on Tetrabenazine because at that point in time I had been taking neuroleptics for a little more than 10 years and with continued use I would be at an increased risk of developing Tardive Dyskinesia, a very unpleasant, debilitating and irreversible condition. Tetrabenazine was the best med up to that point with regards to its side-effect profile, which was more tolerable; however, it wasn’t really effective with regards to my motor tics and jitteriness. Then, about 14 months into taking it, I started having terrible Parkinson-like side-effects, which led me to immediately stop taking this med. I was doing well for a couple of months thereafter, but then the tics and jitteriness came back in full force. This led my neurologist to put me on Clonidine, a medication originally developed to treat high blood pressure having a more tolerable side-effect profile and which, in my case — from the eighth month on — has been by far the best med to date. However, as is the case with virtually all meds taken for Tourette Syndrome, I had to experiment and try different doses and methods of taking it in order to find the dosing solution that would provide maximum symptom control with the least amount of side-effects. (That’s another part of having Tourette Syndrome that really stinks — whenever trying a new med, one has to go through a frustrating process of finding their proper dosing solution.) Anyways, the irony of this more tolerable med is that it has been around for decades, but my initial neurologist didn’t put me on it first — he instead put me on neuroleptics that did help me, but at a big cost in terms of the quality of life I didn’t have. It takes on average around six months for Clonidine to attain its maximum benefit, and I must say that for the first time in my life, I can say that my Tourette Syndrome is under good control with virtually none of the terrible side-effects associated with the previous meds I had taken. I still experience days where the tics and jitteriness are pretty strong, but the great majority of the time they are under good control. It took about the first 50 and best years of my life to get to the point where I feel and function as close to normal as possible and to finally know what it’s like to have virtually all of the normal functionality that all individuals have from birth. Better late than never, I guess.

5 Comments

  1. Jim Fitton says:

    I was recently prescribed tetrabenazine by my neurologist and found it immediately effective in suppressing my compulsions and restlessness and hyperactivity. I still have lots of energy on tap but am no longer obsessed with completing multiple tasks each day. My tics, which have worsened with age, have not been affected by this med.

  2. Jim Fitton says:

    I tried clomipramine with the tetrabenazine to address my obsessive behaviours but found it not effective, and the expense of the tetrabenazine caused me to discontinue it when I was finding it not very helpful. I am now taking clonidine which I have found has immediately reduced my hyperactivity. It’s strange to get up in the morning and not want to start running around!

  3. Jim Fitton says:

    I tried tetrabenazine on its own and in combination with clomipramine, but found that my hyperactivity and tics were not well controlled. Most recently I asked my neurologist to put me on clonidine and have gradually increased the daily dose to 0.6 mg. After six weeks I can say I feel the calmest I have ever been. I am no longer restless, tight and irritable all day. My energy level has been greatly reduced , I sometimes feel dizzy and tired, and my mouth is dry. These problems seem to be lessening as time goes by, and I am optimistic that, in time, I will feel mostly the benefits of this drug.

  4. The last thing I want to say about my experience living with Tourette Syndrome and its associated disorders is that I will always be grateful to my caring wife for pushing me to seek the medical help I so very much needed and for having a great amount of patience to put up with my tics and associated disorders. With no family member to turn to, it goes without saying, that without her support I never would have made it this far.

  5. When my Tourettes resumed in my retirement years, I did A lot of research about it and treatment. Clonidine first line of therapy, I also take Adderal which slows me down. Gabepentim and Abilify at night. Now I am seeing a habit reversal therapist. I can stop the tics before they get out of hand. Good luck

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