Hi @bearbayou
The same happened to me while taking Trileptal. My sodium levels dropped dangerously low—a known side effect of this medication—which triggered my first tonic-clonic seizure. While weaning off Trileptal, my general practitioner recommended preparing and drinking a homemade oral rehydration solution to help restore my sodium levels.
Let me share something I learned in my epilepsy journey. After experiencing my first AED side effects, I began reading every AED leaflet in detail, becoming increasingly alarmed by the long lists of potential side effects. This only created anticipatory anxiety and unnecessary suffering. Ironically, anxiety itself is a common seizure trigger. I don't recommend this approach.
Since then, my husband and I have developed a different strategy: I no longer read medication leaflets. Instead, if I experience any side effects, I tell him and he checks the leaflet to see if they're related to the medication.
What I've learned throughout my epilepsy journey since 2019 is that while all AEDs have many potential side effects, this doesn't mean your son will experience them. For instance, I've met many people who take Trileptal without any sodium-related issues. I'm currently on Keppra, an AED often feared for its association with depression and suicidal thoughts—yet I haven't experienced these side effects at all. As my doctor reminds me, each body is unique. What works for one person may not work for another, and vice versa. Xcopri might work wonderfully for your son, just as it has for others.
Has your son's doctor recommended any measures to maintain his sodium levels during the transition from Trileptal to Xcopri?
Chris