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.

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 (neurologists 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 if a patient isn’t a candidate, they can assess alternative approaches)
✅ 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 (NAEC):
🔗 Find an Epilepsy Center

A New Diagnosis to Process

On another note, I’ve been battling through a lot since my mTBI (mild traumatic brain injury) 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 (PCS).

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 (TBI) and can cause symptoms such as:
🧠 Chronic headaches or migraines
😵‍💫 Dizziness and balance issues
🔦 Sensitivity to light and noise
💤 Sleep disturbances
😞 Depression, anxiety, and mood swings
🧠 Cognitive challenges (brain fog, memory issues)

Since I also live with epilepsy, these symptoms overlap with my existing neurological challenges, making everything even more difficult to manage.

🔗 More on PCS: 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 incredibly challenging. PTSD (Post-Traumatic Stress Disorder) can develop after experiencing a life-threatening event—like a seizure-related injury, brain trauma, or even the daily stress of living with a condition like epilepsy.

Symptoms of PTSD include:
⚡ Flashbacks & intrusive thoughts – Reliving traumatic moments, even when trying to move forward
⚡ Hypervigilance & anxiety – Feeling constantly “on edge”
⚡ Emotional numbness – Struggling to feel joy or connection
⚡ Sleep disturbances & nightmares – Reliving trauma at night

Coping with PTSD & PCS requires a multi-faceted approach, including:
🧘‍♂️ Mind-Body Practices – Meditation, breathwork, and grounding techniques
📖 Therapeutic Support – Working with a trauma-informed therapist
💊 Holistic & Nutritional Support – Anti-inflammatory diets, targeted supplements
💪 Lifestyle Adjustments – Reducing sensory overload, prioritizing rest, and seeking supportive communities

If you’re struggling with PTSD, know that help is available.
🔗 National Center for PTSD

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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.