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Any Briviact experiences to share?
Epilepsy & Seizures | Last Active: 4 hours ago | Replies (143)Comment receiving replies
@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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@santosha
Thank you! I’ll keep all in touch after my discussion with the local specialist I had been seeing next week. He knew about my auras issue. And they still impact my quality of life because of the frequency issue. I’ll also let you know if reducing screen time works!
I finally also had that thought to live life for myself. Step back from the usual a little. Not sure if that will help. For too long, even after having this condition, I realized I was too obsessed about work. I had been neglecting my closed ones who are also battling this with me. I didn’t consider what my mum always told me - “if you still don’t have the money to spend, tell me because when I’m gone ultimately my asset goes to you”. I think my dad feels the same way.
Of course as a son I won’t want to go beg my parents for money. But actually, my role as a son is to spend whatever they will leave me in a meaningful way and let them witness the results while they are still alive. And that’s not something I had done. I knew my wife always wanted another kid and perhaps my parents wanted another grandkid to have fun with. My wife and I are a bit old for another kid now. But because of monetary concerns which I had over this issue, I never gave all those things much thought when I should have. Use their money. It’s not shameful, when I won’t spend it in ways which are meaningless. After all, it’s continuing a family’s legacy and for my parents, also let them have more fun in their final years by me using whatever money they have given me. Don’t make the same mistake I made if you’re still young enough.
Cheers,
Louis