Eye Health Week Special Post— September 22nd, 2025

Hello, Dear Readers. We are doing something a little different with this blog post today. In honor of Eye Health Week, we are spotlighting my journey with my ophthalmologist Dr. Kathy Milano, to explain how important it is for Tourette’s patients to be truly seen by their doctors. This post will be written in the third person to show my experience from the outside, kind of along the lines of an informal “case study.”

Dr. Milano first became aware of Jennifer’s abnormal blinking after Jennifer’s performances at Mile Hi Church. Her first impression was that this was likely due to dry eye. Many factors can make dry eye extreme in people and Dr. Milano thought that Jennifer had one or more of these factors. For instance, Jennifer has large eyes and Dr. Milano had reason to believe that she might have lagophthalmos, a condition where the patient is not able to close their eyes fully at night. Not closing one’s eyes fully at night leads the eyes to get dried out, so it made sense as a potential explanation for how hard and how often Jennifer was blinking.

After examining Jennifer’s eyes in clinic, the dryness was apparent and the question was then how to find the best method to treat the dryness problem. There was no conversation initially about involving a neurologist or treating it as though it were a spasm. Whereas blinking like that in a child might have caused Dr. Milano to think in terms of cognition and movement disorders, this connection did not initially seem relevant as she worked with Jennifer to treat the problem of her dry eyes, which were in fact an issue happening alongside the as yet undiagnosed Tourette’s. Dr. Milano had seen a patient with Tourette’s before who had motor tics, but at the time she did not make the association between the tics she’d seen in patients with movement disorders and the tics she saw in Jennifer. This is an example of how varied Tourette’s and other movement disorders can look like. Just because you’ve seen someone with Tourette’s does not mean everyone with Tourette’s will behave the same. Through educational initiatives like this post, it is possible to learn more about Tourette’s and other tic disorders, allowing us all to have a deeper understanding of these conditions. While it was ultimately incorrect to think that the dry eyes were causing the blinking, Jennifer did have severe dry eyes that needed treating, so it wasn’t, strictly speaking, a misdiagnosis.

Dr. Milano and Jennifer tried many different treatments to treat the dry eye issue, but none of the treatments resulted in any change to the tics. The dry eye treatments included conscious blinking, punctual plugs, Restasis, and other prescription drops for dry eyes to help stimulate the production of tears. Then they cast the net even wider and incorporated lid hygiene, warm compresses, different brands of contacts (each more expensive than the last), sleeping with an eye mask and even an amniotic membrane transfer. These treatments had absolutely no effect on the movement disorder.

At that point, Dr. Milano and Jennifer started to try to think more outside the box. An endocrinologist was consulted, but Jennifer did not want to risk the impacts on her voice as a vocal artist, so she ultimately declined hormone treatment. Eventually, after so many thwarted attempts to address Jennifer’s blinking by addressing her dry eye problem, Dr. Milano and Jennifer settled on considering that it could be blepharospasm (uncontrollable spasms in the muscles around the eyes). Dr. Milano first considered consulting an oculoplastic surgeon, as that is one of their specialties.

When Jennifer saw the oculoplastic surgeon, he thought her uncontrollable blinking was actually dystonia, a neurological disorder resulting in involuntary muscle contractions. The treatment he recommended was Botox injections in the muscles around the eyes and along the nose. The first round made Jennifer feel a little more in control of her blinking and helped her relax a little for about four weeks. She then had to wait three months until she could do the next treatment, which was when it was next recommended. When she did it the second time, she did not get the relief she had anticipated. Instead, she couldn’t close her left eye for six weeks. This really discouraged her from seeking out more Botox treatments for her tics, despite the fact that the first round had offered her relief.

The component that no doctor knew about at the time was that Jennifer had a number of symptoms of a learning disability and associated symptoms of ADHD and OCD. Not only did she really struggle to comprehend when she was reading, she also had a number of strict compulsions that had to be followed, such as having the volume on the TV or the radio be in multiples of three, or having the temperature on the thermostat be an even number. Her OCD symptoms even included a crippling aversion to popsicle sticks. During the process of trying to get answers about her uncontrollable blinking, Jennifer began to suspect that her reading comprehension difficulties were dyslexia, but it did not occur to her that it may be related to a neurodevelopmental origin of her tics. All of these signs of greater psychological and neurological problems were essential information for Jennifer’s ultimate diagnosis, but the initial experts that were consulted for what appeared to be just intense blinking were unaware of the deeper problems going on. It wasn’t until her Tourette’s diagnosis that these compulsions and aversions were explained and understood.

After striking out with many eye doctors and related experts, Jennifer began to try to find a neurologist. It took years to find the first neurologist, who examined Jennifer’s gait, and then told her her hard compulsive blinking was just a habit, not dystonia as she had previously thought, and was not a big deal. Jennifer felt that her compulsive blinking was being really minimized by this doctor. It was something that was causing daily pain, frustration, and yes, humiliation for Jennifer, but she was supposed to believe that it was not important. The neurologist suggested that Jennifer do Cognitive Behavioral Therapy (CBT) to get control of her habit. The neurologist recommended CBT not CBIT! Jennifer tried for a long time to find someone who would do CBT to address a tic and was ultimately unable to get into anyone. With neurology offering few answers, Dr. Milano tried to consult with eye doctors who specialized in traumatic brain injuries, but got no insights. She also tried to consult with physical therapists and neuro-ophthalmologist. The answer that the various experts Dr. Milano consulted with kept coming back to was that the uncontrollable blinking was a habit as a result of anxiety, but this answer did not appease Jennifer and Dr. Milano. It felt like more than that.

Eventually through the help of an acquaintance in the theatre world, Jennifer was able to get in with a second neurologist. It was only once Jennifer found a second neurologist in May of 2024 that she was able to understand the difference between blinking because of Tourette’s and blinking because of dystonia, and the various comorbidities that went along with Tourette’s. In a for-profit medical system with so little time for interaction between patients and providers, it was very difficult for the appropriate resources and knowledge to be available to get Jennifer these answers. Adding to this was the way the U.S. medical system silos mental health care and physical health care away from one another, which meant that it was hard for Jennifer to find one provider who would listen about and know to ask about both facets of her health.

Jennifer is not alone in struggling to find answers for her medical problems. The motivation for this blog post and part of the mission of Facing Tourette’s is to encourage basic awareness and education about what TS looks like in reality and outside of the pop culture stereotypes. Education and willingness to work with patients to find answers alongside medical providers is ultimately what saved Jennifer, between her years of work with Dr. Milano and finally finding a compassionate, competent neurologist. Along the way, no one in Jennifer’s life, medical professional or not, was as attentive and proactive as Dr. Milano. Without this support, Jennifer would have given up in her search.

Once Jennifer finally had an answer, she began to work with a therapist specializing in Comprehensive Behavioral Intervention for Tics (CBIT) and to explore medications to get relief, ultimately settling on the right combination of therapy and medication for her. This could not have been achieved without Jennifer fighting for herself alongside passionate medical professionals.