About a year ago I began treatment for my traumatic brain injury in a new facility. My neurologist had recently retired, and I had spent almost a year unsuccessfully trying to find a new one. She had been with me since the car accident. A few years in, however, she confessed that the complexity of my case had outreached her. My recovery had slowed to a crawl, and then a stop. I was desperate, and almost without hope.
After several months of pestering everyone on my care team for possible leads, I moved on to pestering my friends. One friend (a stroke survivor) contacted her neurologist. He put me in touch with a physiatrist at the Neuroscience Center in Minnesota, where we lived. A physiatrist is trained to use a holistic viewpoint to consider how all of the body systems connect and affect each other. She was considered a specialist in TBIs.
At my first appointment, my husband and I liked her immediately. She had a lot of ideas that were new to us. New ideas that I was ready for.
She questioned the lack of medications on my chart, which included a note stating that I was “hesitant” to try any new prescriptions. I told her I had experienced issues taking medications my entire life, and it had been exacerbated by the TBI. Some medications seem to give me every single side effect. Sometimes, a medication did not work at all. I had felt for years that no one believed me, especially my care team.
It was then that she told me about pharmacogenetic testing. A simple saliva test, it reads enzymatic activity in the body. Enzymes are what metabolizes medicine. Genetics are different in each of us, so the type of enzymes we have and the rate they metabolize medications is different, also. It astonished me that no one had ever suggested this to me, and I immediately checked my insurance coverage.
The saliva tube arrived at our home, and I returned the sample as directed. A few weeks later I was on a zoom call with a pharmacist of genetic counseling. She broke down my test results, explaining the different levels of enzymatic activity that had been found. I had increased enzymatic activity for some meds, which meant that my body processed them very quickly. I did not have time to receive the full benefit of the drug. I had decreased enzymatic activity in others, which meant that they tended to build up my body. The abnormal accumulation was why I sometimes experienced a lot of side effects.
Together, we discussed my current medication list and my experiences with each one. Often, my experience lined up with what she read in the test results. I wasn’t crazy. Not every medication worked for me. My body processed meds a little differently.
One of the most persistent symptoms to interrupt my daily life was my ever-present nausea. It was the first side effect to wash over me when my brain injury was triggered. Once I was nauseous, a cascade of symptoms followed. I had complained for years that my current prescription, Zofran, didn’t work. Days, weeks, and years were lost to a mix of nausea and anxiety. No one believed me.
Except her. “A lot of very frustrated people come to me,” she said. “Oftentimes, they find vindication. Someone finally believes what they say. I believe that Zofran does not work for you. And I will explain why.” She went on to describe the test findings, and why my enzymes weren’t compatible with processing that drug. She then offered me an alternative that she thought my body would process better.
At the end of the appointment, I had a list of suggested med changes to discuss with my doctor. I ended the call torn between laughing and crying. Why hadn’t I been offered this test years ago? I went through prescription after prescription after the accident. So many years of pain and frustration surfaced.
But dwelling below the frustration I felt empowered. Finally, I had science behind me. I emailed each of my doctors, requesting a consultation for changing my meds.
Within days, my nausea medicine was successfully replaced. The switch was a game changer. Now, when a wave of nausea starts to come over me, I take an anti-nausea pill (granisetron) and try to rest for thirty minutes. Often, within that time the nausea is gone. I am able to continue with my day.
We are not all made from the same pattern. Each of us has different body chemistry. We deserve to be treated differently. We deserve to be believed. That one med was just the beginning. My physiatrist is using the test results to seek out new treatments for me. For the first time in years, I have hope for what lies ahead of me.
-Sara Scott
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