Talking to Tourette
By Rick Green
Did you know that there is a huge overlap with ADHD and Tourette Syndrome? It’s been estimated 75% of people who have Tourette Syndrome also fall into the ADHD spectrum. This overlap means a lot of our TotallyADD.com members have Tourette, as well as other disorders. In fact the majority of us ADDers have a second issue to contend with. The medical term is a ‘comorbidity.’ Comorbidity. It sounds like a tern for a dead roommate, “This is Vlad, my comorbidity at college. He’s a zombie.”
Sorry, off topic.
Because of the overlap of ADHD & Tourette Syndrome, I’ve given talks at several events for the National Tourette Foundation of Canada. Amazing people. (And yes, it’s Tourette not TouretteS. The name Tourette is like the word Pony in that it doesn’t have an S in it.) 
Where was I?
Oh, right.
On Friday morning I spoke at the national conference in Ottawa Afterwards, a couple of women who had come to hear my speech last year at the Tourette conference in Winnipeg came up and shared their stories.
One had come to my talk last year because her child has Tourette Syndrome. And as I spoke, she had the epiphany. For 15 years she had been on medication for depression. Hearing about ADHD in detail had her realize that was what was going on for her.
The other woman had a similar story. After my talk she leaned over to her husband and whispered, ‘I think I have ADHD.’ She took it on and is now dealing with her ADHD. And having huge success.
I mention their stories because it’s common for adults and their doctors to mistake ADHD/ADD for either Depression or Anxiety Disorder. (In fact, until it was realized that adults could indeed have ADHD/ADD, they were usually diagnosed with Depression or an Anxiety Disorder. I know. From first hand experience.)
I also mention this story because this woman was no longer leaning over and whispering about her ADHD. She was talking about it. Openly. And the other woman is off her Depression medication and getting treatment for the ADHD, with great results.
And there’s a third reason I mention their stories. Cause I want to brag. I’m so proud of what we are doing here with this website, it’s easy for me to forget, or simply never hear about the difference we’re making. It’s easy to lose sight of the impact we’re having because we’re dealing with the day to day logistics of trying to make a website work and hopefully financially sustainable.
So to hear that we are making a difference, that we are one more person closer to the tipping point, after which ADHD will just be something people have and not a secret shame… well, it’s awesome.
I hope you don’t mind the bragging. I’m bragging for Ava and Umesh and Patrick and Janis and Jimi and Aerin and all the others who have helped are helping us now to make this a safe, fun, informative and transformative experience.
Yay for us!!! And Yay for you for sharing in the Forums and spreading the word.
Okay, enough celebrating. Gotta get ready for the CHADD conference in Orlando.
10 Responses to “Talking to Tourette”
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Thanks Rick for mentioning this! I had no idea that such a high percentage of people with Tourette syndrome also have ADHD. I was just diagnosed with ADHD combined type and mild Tourette. Nice to know I’m not alone
Wow, I’ve been so busy moving this last week that I haven’t checked online. Thanks for all the kind words. So rewarding to know we are making a difference.
One of the things that I hear running through many of these comments is the fact that this isn’t a quick fix, that it’s complicated, tricky even, and there are so many possible overlaps with other disorders or issues. I also get that you are taking on all of this because you sense there is hope, or you have experienced some improvement, no matter how small, and want more. That’s what’s so cool. The trick is to keep the faith, not lose heart and remind yourself that even this struggle to figure out what works, what doesn’t and what the hell is going on is all good. This can be scary ride. But if you relax a bit, and cut yourself and everyone around you some slack, it can be fascinating and even exhilarating. And yes, sometimes exhausting.
Rick,
I attended both the keynote and the professional follow-up you gave at the ADDResources convention in Seattle last weekend. One of the many great points (complete list available upon request) you made was the importance of an accurate diagnosis. This has been a growing question for me over the last couple of years.
I was tentatively diagnosed with ADHD in 2002 in follow-up to an initial diagnosis of depression, unfortunately I lost my job -and thus medical insurance- before it could be confirmed. I spent the next 4+ years in a Hell my wife & I refer to as “the dark ages”. Losing insurance meant losing my Zoloft & Wellbutrin prescriptions, which I came off of “cold-turkey”. I spent from March 2003 until May 2007 in a chaotic cycle of applying for jobs- and all the effort, angst, and emotional crashes ensuing from failing to land it- while trying to work as an independent contractor. I would spend weeks in darkness, punctuated with episodes of inappropriate activities- buying binges, web chat-rooms, surfing risque ( I love euphemisms, they afford a linguistic veneer of refinement and correctness) sites. This placed an enormous strain on our marriage -financially and emotionally, as neither of us understood these compulsions -why I felt the need to buy out Ebay or find the next “alternative lifestyle” website- we continue to deal with these today.
When offered a position in 2007, I was sure this was all in the past. I now had a job, which connotes an identity…and with it self respect & confidence.
…Not so much
In less than a year most of the symptoms were back, and worse than before. My GP again referred me to a psychiatrist, who once again put me on anti-depressants, but prescribed Adderal as well. About this time, Oct. 2008, I found ADDResources on the web. They had a chapter nearby (Olympia, Wa.) and, luckily, a meeting the next week. It was there that I found a room full of people who knew me, as they all gave my life story…except it was also their own. It was an epiphany. I also found my therapist, who I’ve been with since then (if s/he’s reading this – Thanks!). It’s been primarily through this person, and my spouse, that I’ve gotten to the place I can began exploring questions of diagnosis – especially the role of depression. I’ve never been on ADHD medication, presently Vyvanse, without an antidepressant. When I ask about trying just the Vyvanse alone I’m answered with cautionary warnings of possible consequences…all dire.
The thing is, I’ve never gotten the effect with either the antidepressants (I’ve been on Zoloft, Effexor, and currently Lamictal) or the ADHD medications (I’ve tried Adderal -both short & extended release, Ritalin -both short & extended, as well as the Vyvanse), that others I talk with experiance. It’s as if the effect of the medication is muted, either by the other medication, or some other factor – such as a mis-diagnosis, or a co- ( ’cause we ADHD’ers can never have enough) morbidity.
OK, I digress (ADHD means never writing a note when a novel will do…
Basically, I appreciated your emphasis on getting a correct diagnosis – whether ADHD is a component of that or not. In my case, I’m really questioning what my experience with ADHD & med’s would be like if I drop the anti-depressant altogether.
I have been treated for depression for quite awhile (years), and only recently realized that I most likely have ADD. I’m 68 years old and have felt bad about myself since I was a child. My house is unorganized, with piles of stuff on every horizontal surface in the house–I can’t find anything, so I buy a new whatever-it-is I’m trying to find. I am hopeful, for the first time in a long time, that there is help to be had for me and that I am not just a lazy, loser. Many thanks for the help. I have an appt for Nov 8 at the Learning Center at the U of WA.
I need to add my 2 cents and tell you how important your CBC radio appearance on Sept 1st (i think) was! I was driving from Toronto to Parry Sound and I cried through most of the show as I realized that I wasn’t alone for the first time.
I was just diagnosed this week, and I know it wouldn’t have happened without you and Dr Jain and your team.
Thank you from the bottom of my heart.
Rick
Keep bragging, it alway great to hear about the conferences that you and Umesh go to. It is important work. Educating people about ADHD is change attitudes.
All students are our future.
Thank Wayne McFarlane
Yes indeed! Thank you so much! The “ADD and Loving It” saved my life and I don’t feel like I’m exaggerating when I say it. It came to me at a time when I really needed. My life and well being has dramatically improved since then as I’ve sought out the correct treatment for my symptoms. Thanks to the documentary and this website…I’m not “shooting darts in the dark” in order to get better. And most of all…I no longer think that I’m stupid, lazy and have EXTREME bad luck.
I think you do an awesome work and this homepage is brilliant.
The position of ADDrs here in Germany is even worse and to find a good diagnosis for adult ADD is nearly impossible. I share your site as much as I can because I never found such detailed information on any German homepage. Keep going for the ADDrs worldwide… or at least for those of us who understand Englisch.
Yes! Yeah! for each one of you!!! You really have made a wonderful world of difference to the lives of another wonderful world of lovely people out there.
It’s reassuring to each one of us to be able to come on here and find out that there is another ‘one’ just like me out there. Another ‘someone’ who has strange unconnected thoughts constantly flitting through their brain.
I’ve made it through to the light and it’s great to be a part of this site as it leads others through to the light. Yes, indeedy, your entire gang is worthy of praise.
Now, off you go to enjoy that warm Florida sunshine! I certainly hope you drag Ava off to some of these warm and sunny climes so that she can enjoy some down time (while you are busy doing what you do so well- talking up a storm!).
Thanks again to ‘The Team”!
All of you are making a difference for me and my family! With meds, therapy and this amazing site, I have gone from suicidal (on antidepressants; thankfully not on them anymore) to having the confidence to head back to school to finally do what I was meant to do (but for the usual ADD reasons, never got there). I feel blessed to be a part of this family. I thank each and every one of you every day.
Sorry for the “mush”, but you’re all really wonderful.
Cherri