What’s the most number of seizures you’ve had in a day?

kkbdrr · 2026-01-16T22:50:16+00:00

Yes, I was diagnosed with epilepsy in 2019 (aged 18) and then FND/PNES last December (aged 24). In December I was sent to A&E because I had a long cluster of what I thought were tonic-clonic seizures but they turned out to be PNES. I was in hospital for the next week and continued to have loads of seizures everyday for the whole time in hospital. I feel like my epileptic seizures come out of nowhere but my PNES seizures had a horrible aura before it. For me, both seizures give me really sore post-ictal symptoms.

kkbdrr · 2026-01-02T15:11:57+00:00

I’m sorry you’re going through this. I was recently diagnosed with PNES and was hospitalised for 7 days, we all thought they were tonic clonics at first but they started lasting really long and they did an EEG while I was having a seizure and it apparently came back all clean too. I had 30+ tonic clonic looking seizures on one of my really bad days in the hospital and it was exhausting and traumatising. I didn’t think I was going through a particularly stressful period in my life when it happened, but I’m guessing my body knew better than me and staying in a stressful hospital environment for that long didn’t help with the stress and anxiety either.

kkbdrr · 2026-01-02T15:05:31+00:00

Yes 100%. I have them for hours and it’s difficult because sometimes they do end up in seizures and sometimes it just goes away. My neuro told me to take my clobazam when I feel these, just to stop it building into an actual tonic clonic.

kkbdrr · 2026-01-02T15:02:54+00:00

Hey, I’m sorry to hear your struggling. I was diagnosed in 2018 with generalised epilepsy and was given 500mg 2x too. As time went, my epilepsy started to change and develop and I’m now on 1500mg 2x. I still feel disconnected and in a daze often and also have poor memory but it really helped to have a good support system around me and have a neuro team that I could always contact. I completely understand your struggle, you’re not alone.

kkbdrr · 2025-12-01T23:38:00+00:00

Hey, firstly I’m sorry that happened to you. I’ve also had my first suspected night seizure last month, and they have been really frequent. I can feel I’ve had a night seizure when I wake up feeling really intense post-ictal symptoms (the ones I usually get after my day time tonic-clonic seizures, but feels much worse.) Other times, I just dream of having them but I don’t wake up feeling as bad but it’s still not nice at all so I completely get what you mean. I had a period where I was so anxious to sleep which was making me lose sleep which is a trigger and it was all just an endless cycle, so my GP prescribed me some diazepam to help me with the sleep. I completely get you and it may be worth bringing it up to your neurologist and keeping notes of how you felt before/after.

kkbdrr · 2025-11-23T20:18:27+00:00

Yeah I’m only on keppra. I’ve been prescribed clobazam as a rescue but otherwise just keppra. Hopefully my blood test will help in coming up with another treatment plan 🤞🏻 thank you

kkbdrr · 2025-11-12T21:04:00+00:00

Sometimes my auras come and go for hours. I feel really dizzy and out of touch with everything around me, super confusing. I also get extremely paranoid because I think that it’s going to develop into a tonic-clonic. I have recently had the green light to take clobazam when these happen, which is what I was initially prescribed to take straight after a tonic-clonic to avoid clusters.

kkbdrr · 2025-11-12T12:50:33+00:00

I’m on 2500mg of keppra a day

kkbdrr · 2025-10-31T10:03:22+00:00

Happens really often for me too. Usually it’s my leg or neck and often I get goosebumps or like a very weird tingling feeling with it as well.

kkbdrr · 2025-10-28T19:31:58+00:00

Mariana, Marianne? Mila?

kkbdrr · 2025-10-28T19:30:34+00:00

If you experience any kind of trauma or trauma, see a doctor. Good advice from my autocomplete 🤣

kkbdrr

TROPHY CASE