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Any Briviact experiences to share?
Epilepsy & Seizures | Last Active: 6 hours ago | Replies (143)Comment receiving replies
Hi Chris,
First I must say I doubt I suffered any knock seizure, but I did fall asleep while watching podcasts or listening to music videos on iPads. I would be in the same position before and after being woken up by wife to sleep properly, both under same positions.
I must admit too much stress at work could be triggers, especially when I argued expressing different opinions and also of course too much screen time dealing with work related stuff. When I finally relaxed, there could be this seizure happening. Before Briviact, I must say I was seizure free for 5 days. Now? Not so. It’s back to those most daily mild out of the blue seizures. But of course, I can’t speak for the future.
Some reducing screen times and other recommendations in the link had helped. And I wondered whether getting newer lenses for my specs will do the same. Some many options out there besides drugs! I don’t know what to do now to be honest. But maybe that’s a good thing.
Cheers,
Louis
Replies to "@santosha Hi Chris, First I must say I doubt I suffered any knock seizure, but I..."
@louissc
Hi Louis!
I'm not a doctor, but multifocal seems to refer more to the type of seizures you experience — seizures that arise from more than one location in the brain — than to your epilepsy syndrome as a whole. If you can still communicate through your fingers during a seizure, your consciousness seems to be preserved, which in my case only happens during my auras.
If I remember correctly, you have an appointment with your specialist soon. It might be worth asking him or her about your epilepsy syndrome specifically, and whether it's possible in your case to experience auras. The Epilepsy Foundation has a helpful overview of epilepsy syndromes that might be useful to read before your appointment:
Epilepsy Syndromes
https://www.epilepsy.com/what-is-epilepsy/syndromes
I know how frustrating it can feel to continue having seizures with a new treatment. But let's look at the positive side — the glass half full: your current seizures are much milder than your previous ones and allow a much faster recovery, without disrupting your routine the way the tonic-clonic seizures did. Did I get that right?
And as I've experienced myself, the beginning of a treatment often requires gradual medication adjustments, demanding much of our resilience and patience.
You mentioned your hair is thinning — this can indeed be a side effect of the medications you take. My hair also got thinner with some AEDs. It's worth mentioning to your specialist. I use a very specific shampoo that's been helpful for that.
I'm also very glad to hear that reducing your screen time and following other recommendations from the link I shared have been helpful. Medication helps, but there must also be effort and commitment on our part. As you've wisely noted, there are many other options besides medications that can help us navigate our epilepsy journeys. As for the specific lenses, I'd recommend getting guidance from your specialist, as screen-related triggers aren't something I have personal experience with. Tell me more about how the reduced screen time has helped you!
Let's keep in touch! I'm looking forward to hearing from you after your appointment with your specialist. 🌻
Chris
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@louissc
Are you having Focal or Generalized seizures?
Jake