#ADHD, OCD and: Tourette Syndrome

Fun fact: About 9% of people with ADHD also have Tourette Syndrome.

Tourette Syndrome: It’s more than just embarrassing/inconvenient swearing!

Fun fact(s): over 90% of people with Tourette Syndrome have ADHD, and over 60%-ish have OCD.

Comorbidities: More fun than a barrel of monkeys.

Fun fact: I have Tourette Syndrome. I guess that explains the ADHD and the OCD!

Wait, what? How did I get to be over 40 and not know I had Tourette Syndrome? Well it’s like this: I’m really good at suppressing my tics. And I didn’t know they were tics. Now, I know they’re tics.

If memory serves me well, I have also not really written previously about explicitly having OCD. That’s because when I was a teen and my OCD was bad, I was told that if I didn’t stop doing all the wacky OCD stuff, I would be taken to a shrink. How does a normal American teenager react to THAT proclamation? With total defiance. I made sure that I kept my OCD stuff…and my tics…to myself.

But you know what that does? It increases a person’s anxiety! You know what else? When you don’t tell your psych prescribers, for years, about your OCD stuff? They don’t treat your OCD.

It was a combination issue – I didn’t really know that some of my OCD stuff was OCD. I don’t know what I thought it was, but I didn’t know it was OCD. And the rest…well I had myself pretty convinced that I had it all under control. Yeah no. I didn’t. I’m laughing, sitting here writing this. I mean yes, I had some good adaptive strategies for some of it, which is why I was able to seem subclinical but…some weeeeeird stuff was still rolling around in ye olde brain. Stuff that didn’t need to be rolling about up there in isolation.

I am in the process of getting an official diagnosis of Tourette Syndrome at one of the best centers for Tourette treatement in the US, at Massachusetts General Hospital. I’m very excited to see the providers there. I already went to a symposium that they put on, where they addressed every piece of the Tourette puzzle…the tics…plus to co-occuring OCD and ADHD. It was a relief to hear clinicians who were so current and knowledgeable, share all of that information.

While I’m waiting to see them, however, I just had an appointment today with a new, local prescriber, a psychiatrist. I had a very bad experience not long ago, with a prescriber who simply didn’t know how to appropriately treat ADHD. Actually, let me backtrack for a second so you can see how nutty this was, and I’ll get back to the new guy in a second.

This prescriber I had been assigned to, after my awesome former prescriber had left the office…well he seemed good at first. My current ADHD meds were one 36mg dose of Concerta, in the morning. Problem is, my Concerta wears off by 4pm, then I was going home to manage family life, unmedicated. Those of you with ADHD, or an ADHD spouse know…that’s no bueno. I asked the guy for a second dose in the evening (I go to bed late, and methylphenidate doesn’t keep me awake, so it was not a concern for disrupting my sleep if I took a second dose at 3 or 4pm).

He said no, that he “couldn’t have me medicated 24 hours a day”. I told him “Well that’s funny, I have ADHD 24 hours a day and current clinical guidelines indicate that 12-24 hr/day coverage is ideal. Looks like your clinical knowledge is out of date.”

Predictably, he wasn’t impressed with my response. So I found a new prescriber.

The new prescriber looked at my file today, looked at me, and said “This guy makes no sense. Why on Earth does he think that a healthy adult with ADHD can’t take more than 36mg a day of methylphenidate? Most people take twice that.” THANK YOU. I almost hi-fived the guy.

So he’s prescribed me an evening dose, and…and…are you even READY FOR THIS…

He knows about Tourette Syndrome. He knows about it, he knows about tics, he knows how the tics roll, and he knows the current appropriate treatments for it, so he prescribed me a medication that is appropriate Tourette and ADHD and may possibly take the edge off of my anxiety, generally speaking, which might be helpful with the OCD. I’m going to be trying a small dose of Intuniv.

This man…he is a magical unicorn, covered in glitter and really terrible doctor handwriting.

I’ll be writing more about this in the future, but for now, I’m basking in the glow of all all these rainbows and all of this glitter.


2 thoughts on “#ADHD, OCD and: Tourette Syndrome

  1. All so interesting. My DH’s father has been treated for OCD, but not ADHD. C’mon, even his grand kids have it and aspbergery autism. I suspect my DH’s mother’s older brother had autism too from the stories they tell. He passed away before we married. I’d like to know the co-morbidity for ADHD and anxiety. That’s DH’s mix.

    • There’s a lot of people with ADHD and anxiety. I don’t have numbers off the top of my head, but I know enough to know that it’s extremely common. Remember too, that there are different anxiety subtypes. For example: Generalized Anxiety Disorder, Obsessive Compulsive Disorder, and others. They aren’t all treated the same way, and may have different causes. That’s where things get complicated but yes…ADHD and anxiety are totally buds and they hang out a lot.

      There’s some interesting recent research that talks about how ADHD and Tourette Syndrome do not seem to be directly genetically related to each other, but that BOTH seem to be genetically linked to OCD…which probably begins to explain why the three pop up together so often. It’s complicated…but when they finally sort it all out, it’ll be interesting to see what the links are.

      What I wonder is this. Current estimates for ADHD in people with Tourette Syndrome put the occurence at over 90%. Current estimates for OCD in people with TS are lower – around 60%-ish. But if OCD is the one gluing everything together, how can that be? I don’t know. But I look forward to seeing the research that figures it all out.

      I also wonder if people are less likely to report their OCD symptoms. Some people have OCD symptoms that they don’t realize are OCD symptoms and therefore, may not report them. However, I have also heard that many people with TS report their OCD symptoms to be the most impairing symptoms they experience.

      Come on, scientists, figure this out 🙂

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