u/Icy_Mast_Below

Hello,

I had a nighttime breakthrough seizure Friday and have spent most of the last 2 days sleeping. I was on the starting dose of Briviact, so we’re thinking it is just a matter of needing a higher dose than that.

However, my doctor is also talking about giving me midazolam tablets to take as a rescue med. I have focal seizures with a very long prodrome/post-ictal period that tend to cluster. I believe the thinking is that I would take it if I felt a seizure was imminent, or if I had a seizure and still felt “out of sorts” in order to prevent more seizures. Then I could limit future breakthroughs to be 0-1 seizures instead of a cluster of 10+ in a week.

I’ve mostly seen people talk about rescue meds in terms of TC seizures that last >5 minutes. Is there anyone here with only FA seizures that takes rescue meds? Do they help? Are you able to go back to what you were doing afterwards, or is it still a matter of being unwell & needing a large amount of sleep to recover?

We’re about 1 1/2 months shy of it being a year since I got estranged from my sister and her family.

I thought I’d be “over it” by now, and tbh, I think so did everyone else. We have several birthdays and holidays coming up in the next few months. I also am trying to come out on the other side from a serious medical issue. I think that’s bringing on some grief. I’m normally so independent, but I’ve just been feeling alone in the world.

I’ve been having dreams almost every night for the last week. I’ll be hanging out with my sister, or she’ll reach out to me, or she’ll send me a long text telling me she apologizes and wants to start fresh. I get to show her all the cool stuff I’ve done in the last year.

Then I wake up, and none of it happened, because they still hate my guts and consider me dangerous/incompetent. I almost want to reach out and just see what happens, but I know that’s a terrible idea. With my medical state, I can’t risk the stress anymore.

I guess I’m not really looking for advice…just folks who understand.

I found out I have an unusual form of epilepsy recently, after dealing with scary symptoms and a lot of chronic issues for years. I had medical PTSD already before all this, and talking about/living through medical situations is quite hard for me.

I also have multiple pet rabbits, who are a great comfort to me. I love rabbit plushies and rabbit decor - I’m not kidding when I tell you my entire house is decked out in rabbit items! 🙂 Needless to say, getting an ad for the Epilepsy Rabbit was very fortuitous for me!

It’s not going to cure me or anything, and I of course still have to deal with the hard work of treating my condition while caring for my mental health. But it’s a help for me to see this little plush rabbit who represents a big, scary problem. I know these are not meant for kids, but I wish I’d had something a bit like this during the medical crisis that caused my PTSD.

Thanks to the folks who created these plushies!

Hi! I have focal aware seizures exclusively with temporal lobe epilepsy. It’s been about 1.5 months since I got diagnosed. I’m on Briviact which seems to be helping (no seizures in a few weeks and only a few “funny feelings”), so now it’s just a matter of waiting to see if the pattern holds.

Talking to a counselor at my neurology clinic, she recommended that I get a medical alert bracelet. It’s the season when I do a lot of solo hiking/camping, and I’d asked advice on how to stay safe and prevent seizures with physical exertion.

My question is, has anyone here gotten a medical alert bracelet if they only have focal aware seizures? Like…I wouldn’t know what to put on there, besides the diagnosis. I don’t have a rescue med, and if I ever had a tonic clonic, I’d be as in the dark as to next steps as any random stranger around me. And I’m not super keen on carrying my diagnosis around with me (I’m worried about stigma).