Successful treatment of refractory epilepsy due to benign brain tumor

In 2008, during the peak of a successful career in television news at the age of 32, I was diagnosed with epilepsy. I had “simple partial” seizures, so I was conscious and somehow able to continue reading a teleprompter live on the news when it happened. Unfortunately, my brain and body are highly resistant to anti-epileptic drugs. This is common for a large percentage of patients who never get the condition under control, myself included. I was prescribed more than 20 medications over the last decade. Neurologists struggled to increase doses due to serious side effects of some and dangerous allergies to others. We hoped for fewer seizures in what has been a never-ending battle. I also outgrew the small number of prescriptions that I could tolerate, and trying the next one meant surviving a terribly physically and emotionally painful transition. This was also often accompanied by more serious, life-threatening seizures (grand mal/tonic clonic) that lead to ambulance rides and emergency room visits.

In 2010, an MRI revealed that my epilepsy was due to a brain tumor. Surgeons were able to remove the fibrillary astrocytoma from my left temporal lobe. Luckily it was benign. However, in place of the tumor, the scar tissue that replaced it continued to cause seizures. I could no longer work in television news and struggled to find a new job and function as a single mother. In 2015, doctors discovered my epilepsy had grown worse, now with a loss of consciousness, and I am no longer able to drive, work or be alone much outside of the house. I am on social security disability income, dealing with unbearable emotional and financial stresses. My children, now 11 and 13, no longer live with me after a legal battle that just ended, painfully, in August 2018. While I cannot drive or afford the costs of travel, I am expected to visit my children in Wisconsin to be part of their lives. Unfortunately, the legal system that allowed this clearly cannot understand and does not take responsibility for accommodating what is an extremely debilitating, yet invisible, disability.  My goal is to continue working to find and supporting more effective, healthy treatments and possibly cures for epilepsy. I will also fight for patients who cannot advocate for their own health and civil rights. I am on the board for the Epilepsy Foundation of Greater Chicago, formerly serving for the Epilepsy Foundation of Wisconsin where I was diagnosed in 2008 and lived until 2013. When I returned to the Chicago area, where I was born and raised, I was introduced to Dr. Michael Smith who is an absolute legend in the neurology and epileptology world for many reasons. Since Dr. Smith prescribed CBDa six weeks ago, we have been able to increase the dose four times with no negative side effects. I have a dramatic reduction in seizure activity and the CBDa has served as a much-needed anti-depressant during what would have been a terribly painful time in my personal life. I am having fewer seizures and I am feeling an ability to focus that I lost for many years. I am also happier and more determined than ever to help find a way to get this medication to more patients who struggle with epilepsy.