MyEpilepsyTeam

First, please know that what you're carrying right now is enormous — and the love and dedication you show your son is truly remarkable. Three years of this, largely on your own, is incredibly hard. You're not alone in feeling exhausted and frustrated.

Regarding Xcopri (cenobamate), it works in two ways:

- Blocking sodium Show Full Answer

First, please know that what you're carrying right now is enormous — and the love and dedication you show your son is truly remarkable. Three years of this, largely on your own, is incredibly hard. You're not alone in feeling exhausted and frustrated.

Regarding Xcopri (cenobamate), it works in two ways:

- Blocking sodium channels in the brain to reduce seizure activity
- Enhancing GABA, a natural calming chemical in the brain

Real-world data has shown some promising results for drug-resistant epilepsy. The slow titration (gradual increase) your son's team is using is the standard approach — it helps reduce the risk of side effects. Some common side effects to watch for with anti-seizure medications generally include:

- Dizziness and fatigue
- Mood changes or irritability
- Insomnia
- Weight changes

Always report any new or worsening symptoms to his neurologist promptly, especially during the transition off Vimpat. Regarding VNS (Vagus Nerve Stimulation), it's worth going into that appointment well-informed. Some things to know:

- It delivers mild electrical pulses to the brain via a nerve in the neck
- It doesn't eliminate seizures but can reduce their frequency and severity
- It requires a surgical procedure to implant
- It may take up to two years to show full effectiveness
- Side effects can include hoarseness, coughing, or throat discomfort
- It can affect the ability to have certain MRI scans

It's absolutely worth discussing with his neurologist whether it's a good fit for him. If you're feeling like the current care team isn't meeting your son's needs, seeking a second opinion at a dedicated epilepsy center is completely reasonable — and often recommended after multiple medications have not worked. Many epilepsy centers in the New York area have specialists experienced with complex, drug-resistant cases. Asking his neurologist for a referral to a Level 4 epilepsy center (the highest designation) is a great place to start.

You're advocating so hard for your son. That matters more than you know. 💕

 AI-generated responses are not a substitute for medical advice. These services are not intended to diagnose, treat, or cure any condition or disease. Always ask your doctor about specific health concerns.

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