Tuesday, October 1, 2013

Tourettes Tuesday: To Medicate or Not!

So two of the first questions I get from parents of kids with Tourettes is what kind of therapy have I tried and what kind of medications have I taken. A few of them are surprised when I tell them that I don't take any medications at all anymore. In fact I haven't since college. Especially with parents dealing with a child that has just gotten diagnosed I think what they're really focused on is how to get it treated and "fix it" than to prepare for the long haul of a life with Tourettes.

Sometimes you want your volume taken all the way to 11!
At one point during High School I was on Topomax, Geodon, Zoloft, and Abilify, respectively. I also saw a regular therapist and neurologist. And the main reason why I was on these medications wasn't initially because of my Tourettes. I was first referred to them because I was succumbing to depression and rage and eventually I was taking it out on my own body by cutting myself. I was brought to therapy not because of my TS directly but because of the toll that a lot of the piggyback disorders were taking on me. It just so happened that by also treating the TS along with the accompanying OCD, depression, and anger problems my quality of life improved somewhat.

You'll notice that I said somewhat. The biggest problem was that as much as my life was improved by the meds I found that the side effects negatively affected it too. I was very drowzy and often had to work through a "fog" in my brain. I had grown used to living with TS and being completely uninhibited. The meds tended to dial my volume down and a lot of the things that came to me naturally became very hard work.

In the end I ended dumping all of the meds into my dorm room toilet one night. After three years with living on the meds I found it was too much. And I also found that the therapy and the anger management gave me the skills to deal with the symptoms that put me on a level that I didn't need the meds anymore. I eventually made the decision that the meds were holding me down.

So if you're trying the medication route with your kids also consider taking them to a therapist that will help them recognize their behavioral and body cues and give them tactics to fight back. And talk with your kids to make sure that the side effects aren't negatively affecting them. Tourettes becomes a lifestyle, like the operating system on a computer. Make sure that changing or upgrading anything won't negatively affect their day to day life.

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