Good Morning @kelli1989
As many here in this supportive community have already expressed, you are definitely not alone in your epilepsy journey.
I have lived with temporal lobe epilepsy since my teenage years, but I wasn't diagnosed until 2019 at age 48, when my condition worsened. The first two years of treatment were incredibly challenging and difficult. I had to leave the job I loved and became dependent on others, feeling unwell most of the time. My physical and mental health deteriorated to the point where I experienced suicidal thoughts—something I could barely admit to myself. Please know that having these feelings is nothing to be ashamed of. With my husband's incredible support, I found the strength to persevere and seek help.
I share here the main approaches that helped me move forward:
Neuropsychological or Psychological Support: The guidance from my neuropsychologist was essential to rebuilding my strength. Accepting a lifelong condition requires effort and adaptation—something we worked on extensively during those difficult early years. As @dannoyes wisely said, epilepsy is just one aspect of who we are.
Specialized Treatment: Finding the right medical support makes all the difference. During those first two years, I saw numerous neurologists and psychiatrists, but many treatments seemed to cause more harm than good. When I finally connected with an epileptologist (thanks to another member of this community), my condition improved dramatically, I got much better, and could stand up again.
Building New Connections: After my diagnosis, I initially felt ashamed and isolated. As I gradually regained confidence, I began opening up about my condition. Some people distanced themselves—something my neuropsychologist had prepared me for—but I discovered new, supportive communities. This Mayo Clinic epilepsy group has been invaluable, connecting me with understanding people who face similar challenges. I have also found an amazing community through yoga, besides meeting nice and understanding people at my Pilates, and tennis. Additionally, since my mother has Alzheimer's, I joined a wonderful family support group. These new connections have shown me that I am not the only one with struggles and that we can grow stronger together.
Lifestyle Adaptations: Smiling again required adjusting to my new reality. Losing driving privileges initially felt like losing my independence, making me reliant on my husband for transportation. Gradually, I discovered alternative ways to maintain my freedom—walking, using Uber, or public transportation. I must say that I am fortunate to live in a neighborhood with so many facilities around me. People at places I regularly visit know about my condition, which provides peace of mind. I wear a medical alert bracelet with crucial information, giving me confidence to venture out independently. I have also developed strategies to manage my memory issues. But most of all, I have learned to respect my body.
Have you had support from a psychologist or neuropsychologist? If not, I strongly encourage you to consider it.
Regarding Stevens-Johnson syndrome, I have done some research and learned it is primarily associated with certain anticonvulsant medications. Lamotrigine, carbamazepine, oxcarbazepine, phenytoin, and phenobarbital carry higher risks for developing this condition. Have you taken any of those AEDs? Are you currently on an AED together with your VNS?
I would love to hear from others in our group about what has helped them better manage epilepsy and improve their quality of life.
And to end, one of my yoga teachers always says: You can get discouraged, but never give up!
Wishing you strength and healing!!!
Chris (@santosha)