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.