A Difficult Transition in My Epilepsy Journey
I received some disappointing and shocking news — something I never expected. I’ve been with my neurologist for eight years, and together, we’ve tried everything to manage my seizures. Years ago, we even consulted the epileptologist in his group, and the conclusion was that my doctor was doing all he could.
Over the years, I’ve seen more doctors and been through more medical facilities than I care to count — it’s exhausting to think about. My current neurologist works out of a Level 3 Comprehensive Epilepsy Treatment Center, and at my last appointment on Tuesday, after explaining my recent struggles, he looked at me with a heavy heart and said:
“David, it’s not that I don’t want you here, but I need to transfer your care to a Level 4 Comprehensive Epilepsy Treatment Center — UCI — where you’ll be under the care of a team of five epileptologists. They have access to resources I don’t.”
Hearing those words broke my heart. Building a strong, trusting relationship with a doctor is incredibly difficult, and I had that with him. My first question was, “What are they going to do that we haven’t already tried?” I’ve been on countless medications (26 is more than enough), I’m not a candidate for surgery, and I’ve already had a Vagus Nerve Stimulator (VNS) implanted. So, what’s next?
He explained that my case is complex, and UCI has access to new research programs and advanced treatment options that might offer something different. While I understand his reasoning, it doesn’t make it any easier. I first met with an epileptologist at UCI when I was 19 years old — now, decades later, I’m returning to see if they can offer any hope for improvement. I’ll go. But I’m not feeling hopeful.
In This Article
Understanding Level 4 Epilepsy Centers
For those unfamiliar, Level 4 Comprehensive Epilepsy Centers are the highest level of epilepsy care available. They offer specialized teams of epileptologists who focus solely on epilepsy, advanced diagnostic tools like long-term video EEG monitoring, access to clinical trials and cutting-edge treatments, comprehensive surgical evaluations even for patients who aren’t surgical candidates, and multidisciplinary support teams including neurologists, neuropsychologists, and dietitians. If you or a loved one is struggling with uncontrolled seizures, you can find an epilepsy center near you through the National Association of Epilepsy Centers.
A New Diagnosis to Process
On another note, I’ve been battling through a lot since my mTBI in December. For months, I’ve been overwhelmed by symptoms that I couldn’t fully understand. During my visit on Tuesday, I received an official diagnosis of PTSD and Post-Concussion Syndrome.
While I’m relieved to finally have answers — because a diagnosis means I can move forward with treatment — the news still hit hard. At times, it’s been difficult just to breathe.
What is Post-Concussion Syndrome (PCS)?
PCS is a condition that occurs after a traumatic brain injury and can cause a cluster of overlapping symptoms. Chronic headaches or migraines, dizziness and balance issues, sensitivity to light and noise, sleep disturbances, depression, anxiety, mood swings, and cognitive challenges including brain fog and memory difficulties are all common presentations. Since I also live with epilepsy, these symptoms overlap with my existing neurological challenges, making everything even more difficult to distinguish and manage. More information is available through the Brain Injury Association of America.
PTSD: A Silent Struggle
Living with a neurological disorder is already overwhelming, but adding PTSD to the mix has been another level of difficulty. PTSD can develop after experiencing a life-threatening event — a seizure-related injury, brain trauma, or even the sustained stress of living with an unpredictable, life-altering condition. Symptoms include flashbacks and intrusive thoughts that surface when you’re trying to move forward, hypervigilance and anxiety that keep you constantly on edge, emotional numbness that makes it hard to feel joy or connection, and sleep disturbances and nightmares that replay the worst moments of your experience.
Coping with PTSD and PCS requires a multi-faceted approach. Mind-body practices — meditation, breathwork, and grounding techniques — can help regulate the nervous system. Working with a trauma-informed therapist who understands the intersection of chronic illness and trauma is particularly valuable. Anti-inflammatory nutrition and targeted supplementation can support neurological recovery. Lifestyle adjustments, including reducing sensory overload, prioritizing rest, and building supportive community, round out the picture. If you’re struggling with PTSD, help is available through the National Center for PTSD.
Moving Forward
This has been a difficult season in my life, but I know I’m not alone. I also know that accepting help and seeking new solutions is sometimes the hardest step. To anyone reading this who is also fighting epilepsy, PCS, PTSD, or any other chronic health battle — I see you. You’re not alone. Healing isn’t linear, but every step forward is still progress.
If you have experience with Level 4 epilepsy centers, PCS, or PTSD, I’d love to hear your thoughts. What worked for you? What didn’t?
God bless everyone walking this journey.
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Sources & References:
- National Association of Epilepsy Centers — Find an Epilepsy Center
- Brain Injury Association of America
- National Center for PTSD
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Disclaimer
This content is for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional before making any changes to your health regimen, including medications, diet, exercise, or supplementation. David Julian, Natural Vitality Advocate, is not a licensed medical professional. Views expressed are personal and based on lived experience — they do not guarantee specific outcomes. David Julian is not affiliated with Natural Vitality or NaturalVitality.com.