RodrigoDiaz777
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Hi - I'm a 40-something Seattle-area professional, originally from the Northeast. I work in Web publishing and related fields.
I've had seizures since my early twenties, starting about a year after injuring my head in a car accident. I also have an older half brother who had seizures as a teen, but which in his case resolved in adulthood. So it's unclear to what extent my epilepsy is genetic or related to the injury. Episodes almost always happen on waking suddenly or after too little sleep. The first symptoms are a sensation of troubled breathing, anxiety, repetitive thoughts/inability to complete a thought, the sensation of needing to urinate without being able to do so, and, finally, repeated sensations of electrical shock through my head and chest. This "seizure cluster" will continue indefinitely until I lose consciousness one way our another--sleep or fall into a rigid, shivering grand mal. I wake from grand mals with my mind clear again (i.e., able to think) but muscles pulled all over my body.
I've spent years finding an epilepsy specialist and effective medication. Most AEDs I've tried have been ineffective, only causing side effect of low energy, constant drowsiness.
Zonisamide is the most effective medication I've been on, largely ending my grand mals if not the occasional seizure clusters. I still manage to work and keep up a social life. But I sleep nine hours a night, struggle to wake up in the morning, and find myself dead tired on weekends. My seizures are terrifying when they happen, but they're reasonably well controlled at the moment. The low energy is the hardest thing, right now.
So that's my situation. Nice to meet everyone.
I've had seizures since my early twenties, starting about a year after injuring my head in a car accident. I also have an older half brother who had seizures as a teen, but which in his case resolved in adulthood. So it's unclear to what extent my epilepsy is genetic or related to the injury. Episodes almost always happen on waking suddenly or after too little sleep. The first symptoms are a sensation of troubled breathing, anxiety, repetitive thoughts/inability to complete a thought, the sensation of needing to urinate without being able to do so, and, finally, repeated sensations of electrical shock through my head and chest. This "seizure cluster" will continue indefinitely until I lose consciousness one way our another--sleep or fall into a rigid, shivering grand mal. I wake from grand mals with my mind clear again (i.e., able to think) but muscles pulled all over my body.
I've spent years finding an epilepsy specialist and effective medication. Most AEDs I've tried have been ineffective, only causing side effect of low energy, constant drowsiness.
Zonisamide is the most effective medication I've been on, largely ending my grand mals if not the occasional seizure clusters. I still manage to work and keep up a social life. But I sleep nine hours a night, struggle to wake up in the morning, and find myself dead tired on weekends. My seizures are terrifying when they happen, but they're reasonably well controlled at the moment. The low energy is the hardest thing, right now.
So that's my situation. Nice to meet everyone.
