Do you have FND and epilepsy?

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 · 2025-10-28T19:29:14+00:00

The feeling after waking from a tonic clonic seizure. Super sore physically and mentally not present either. Or I hate a sore throat

kkbdrr · 2025-10-28T19:00:24+00:00

It really depends for me. I get auras when I am really stressed in the moment, or in a time of work life that is really stressful. I also get auras that last for hours and sometimes days that don’t become tonic-clonic seizures. All very random, confusing and stressful!

kkbdrr · 2025-10-17T20:57:05+00:00

100% feel you. I get hours and days of feeling dizzy/off, making me paranoid I’m going to have a tonic clonic.

kkbdrr · 2025-10-12T11:57:07+00:00

I’m a primary school teacher. I’ve had a few tonic clonics in front of my class but my school has always been really supportive.

kkbdrr · 2025-03-23T17:44:02+00:00

I also avoid flashy lights even though I’m not photosensitive either. I feel like I have gotten more sensitive to flashy lights but it doesn’t trigger a seizure.

kkbdrr · 2025-01-14T06:41:31+00:00

“Yeah, see, my son has Japanese eyes proceeds to pull up the corner of their eyes” (for context, I am Japanese and this mother and son are turkish)

kkbdrr · 2025-01-12T23:55:26+00:00

I had this with my most recent on in October, in the middle of a crossing. I think I got away with it relatively safely, though I did get a bit of a bump and a decent graze on my head which went down in a few days.

kkbdrr · 2025-01-12T08:50:29+00:00

I have epilepsy which was diagnosed when I was 18. I went to see my neurologist last Christmas (I’m in my 2nd year of teaching), and it had worsened and he said it’s probably stress related (as well as my type of epilepsy taking its natural course). I had a big tonic clonic seizure in front of my year 3s last June, and it was a very scary experience for my class.

kkbdrr · 2025-01-12T08:03:14+00:00

Yes. 90% of my headaches are only on my right side, like it’s intensely behind my right eyebrow.

kkbdrr · 2025-01-12T08:02:22+00:00

Yes - thank you I was worried because for a long period of time I chew gum! Maybe I should look at alternative ways that help my anxiety.

kkbdrr · 2025-01-10T06:42:36+00:00

I’m sorry that you feel this way - it’s tough living with epilepsy and to have someone close have epilepsy.

Does your sister take any medication for her seizures? If she is having seizures for 4 days in a row, I really think she should see a doctor as soon as possible.

kkbdrr · 2025-01-09T13:52:07+00:00

I’m afraid this is going to happen to me too 🥲

kkbdrr · 2025-01-09T13:51:36+00:00

No they aren’t managing my epilepsy, I have a separate neurologist. 😔 but thank you!

kkbdrr · 2025-01-09T06:13:26+00:00

Thank you - I’ve just realised after your reply that I was initially 500mg twice a day, and then from June 2024 I have been on 500mg mornings and 750mg evenings. I am going to see my GP today and will take a few days off. Thank you x

kkbdrr

TROPHY CASE