Not Enough: Tourette’s Syndrome & The Gap In Care
Guest writer Caitlin Lastuka
Reading time is about 6 minutes. The following is a guest post written by Caitlin Lastuka.
“No, I’m sorry, we only had one provider that was willing to treat patients with Tourette’s and they left over a year ago.”
“Then you should fix your website!” I am snappish, on the verge of tears, and taking my frustration out on this poor receptionist who had the unfortunate task of being the bearer of bad news.
This is my fourth or fifth call of the day to a major hospital and the fourth or fifth time today I have been told I am S.O.L. in looking for a neurologist. Swedish doesn’t take Tourette’s patients, Virginia Mason doesn’t have a neurologist willing to see patients with Tourette’s, St Michaels doesn’t see Tourette’s patients, and UW has an 11-12 month-long waiting list for me to be seen.
It isn’t my first battle with trying to get into a neurologist. I stopped seeing one at 18 when I aged out of Mary Bridge Children’s Hospital, and my mom spent over a year trying to find a neurologist to continue my care. Since then, I have been trying to manage my symptoms on my own and through my primary care physician, asking for medication adjustments based on how I am feeling and just trying to advocate for my care. My sleep doctor is the one who pushed me and said I needed a better handle on my neurological care and that I NEEDED a physician to oversee my care.
With my hair gripped in my hands and tears in my voice, I called one more clinic. This one is two hours away from my house, but finally, the receptionist comes back on the line and says they do see Tourette’s patients as part of their neurological movement clinic department (think Parkinson’s disease.) I don’t even care; I am so happy to finally have a neurologist willing to see me, with only a one-month wait.
Four weeks go by, and I drive the two hours to Kirkland to meet with the new neurologist. I listen blankly as she tells me that treatment options for Tourette Syndrome haven’t changed or developed any further since I was first diagnosed at 8. I am 31 now, so in 23 years, no progress has been made.
We don’t know why Tourette’s happens, we don’t know what causes it, we don’t know how to cure it or treat it. I have been on the same medication since I was 10, with just slight adjustments to my doses, and it’s still the best course of treatment that is available. There are some other new options out there, medications that treat a certain type of dystonia, but they have a high chance of causing tremors, foot drop, speech slurring, etc.. If my tics were worse, I could potentially qualify for brain surgery where we could use deep brain stimulation to try and treat my tics, but I don’t qualify.
My tics may be detrimental to me in the fact that they require me to hold my breath, yank on my fingers until they hurt, or put deep pressure on my stomach, but they aren’t inherently dangerous, so I don’t qualify for drastic measures of treatment.
I agree that maybe raising my current dose of Prozac in conjunction with cognitive behavioral therapy may be enough to treat or help lower my anxiety, the biggest trigger (in my case) for my tics.
We also discussed my ADD and OCD and how bad they are getting, but between the Trazadone, that I need to sleep, and the Prozac, I am already showing signs of serotonin syndrome1. We have to stop the Trazadone in order to raise my Prozac dose, and my neurologist is afraid that if we add another medication to treat the ADD in the mix, it will continue the serotonin syndrome symptoms. So, we don’t get to treat my ADD and now I lose my ability to sleep in order to better try and tackle the anxiety and my tics. Ironic how lack of sleep triggers my anxiety and begins a vicious cycle.
Three weeks after that appointment, I got a letter from the clinic saying they will no longer accept my insurance starting in November. I get a few short months to try and figure out a care plan and then start the long, arduous process of finding a new neurologist all over again. I am currently on a waitlist for a therapist to work on cognitive behavioral therapy in conjunction with maxing out my dose of Prozac. Still, we can’t determine if the dosage increase is truly working until we pair it with the therapy and see if we notice any difference, so once again I am stuck in limbo.
The thing with Tourette Syndrome is nobody knows what causes it. It could be genetic, it could be due to a bacterial infection when I was young, or it could be due to neurochemical abnormalities. Nobody knows, and because nobody knows the cause, they can’t even begin to try and find a cure. You know what doctors don’t care to try and research? Something that has no starting point.
Right now, the Tourette Association of America is the ONLY organization that invests in research towards Tourette Syndrome. They depend on grants, fellowships, and donations to continue their research, which means that myself, along with 0.5-1% of the rest of the population, are stuck with a neurological disorder that impacts our lives every single day, with no large-scale support on how to cure or treat it.
I have lived with Tourette Syndrome since I was 8 years old; I have a moderate case, not mild, but not severe. I am one of the lucky ones. I can function with minimal impairment in the eyes of society. I was lucky enough to outgrow my verbal tics and now have physical ones that I have learned to lean into and embrace. I have to continue to advocate for myself in a world that has no interest in advocating for me or researching for me.
They can’t even tell me the chances of my daughter or future children inheriting this from me because it isn’t even determined if this is a genetic issue. So, for now, I have to advocate for myself and advocate strongly because one day, I may have to advocate for my daughter, and I advocate for others who can’t.
I have learned to adjust to a world that is not designed for me, a world full of judgment and stares, bullying in elementary school, and shocked or snide comments when I confess as an adult that I have Tourette’s. I have learned to adjust to the stares and surprise from people who learn that I have a neurological disorder for the first time. The “I had no idea!” as if I was supposed to walk around with an advertisement stamped on my head, “CAUTION! MAY HAVE TICS.”
I have dealt with the fun other disorders that come with Tourette’s, ADD, OCD, Dyslexia, and severe anxiety. I have learned to adapt in a world that refuses to adapt for me, and I have learned to advocate for myself in a world that has no interest in advocating for me.
But I shouldn’t have to.
I want to thank Caitlin for coming back on Motherhood Minute and sharing her story! Last year she wrote about her journey in motherhood and mental health, which I’ve linked below. If you have a comment for her, please leave it here and I’ll make sure she sees it.
I also wanted to link the Tourette Association of America website if anyone wants more information for themselves or a loved one. 86% of individuals with Tourette Syndrome experience co-occurring conditions, such as Obsessive-Compulsive Disorder (OCD), Attention Deficit-Hyperactivity Disorder (ADHD), anxiety, learning difficulties, and more. Arming ourselves with knowledge will help spread awareness for future treatments and those needing support.
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-Chanel Riggle
Simon LV, Keenaghan M. Serotonin Syndrome. [Updated 2023 Jul 17]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK482377/