Focul seizures/ temporal lobe epilepsy
Hi, I'm looking for advice or for anyone to share any similar stories as I feel like I'm going around in circles.
2 and a half years ago I was diagnosed with focul epilepsy despite my mri and a 20 minute eeg coming back all clear. As my tests have been clear, I'm having a really hard time fully accepting this diagnosis and starting my meds as I also have read stories about PNES and feel this could possibly be whats wrong with me.
My symptoms :
Strong deja vu that is accompanied by a rising feeling in my stomach along with intense fear and confusion.I feel like the Disney programme "That's so Raven", if anyone can relate lol.
"Mini" sort of deja vus that can cluster for a full day. Not as strong as a full blown deja vu but it feels like my memory is constantly being triggered by something ,I see, think or hear. (I find it hard to explain these ones) I do not always get the stomach rising with these. My brain feels so much pressure during these as if its building up to something massive but it always eventually comes back down and I'm left feeling exhausted and disassociated.
Multiple weird "forced dreams" per day. Again, triggered by something I see, hear or think. As if I get images of past dreams I've had that are vivid, but I can't actually always recall what the dream is or I'm only able to catch a tiny glimpse of it. These don't feel like normal remembering a dream, they come quick and sharp and almost as though my brain is making it up on the spot to relate to whatever triggerd it. Also comes with fear.
Weird deja vu feeling when I'm drifting off into a sleep, sometimes accompanied with the stomach rising and always with the fear feeling.Also, when I wake up sometimes my brain just instantly feels " off" and foggy.
Sometimes I get almost like a sleep paralysis and can feel my eyes flickering and as though I'm struggling to breath. Then I wake up with my heart racing.
Aswell as these, I've got a constant CRIPPLING anxiety and ocd. My life has been on total hold for almost three years and I'm desperate for answers if it's my anxiety/ ocd triggering PNES or is it infact Epilepsy that's causing all of this including severe anxiety. I experience some sort of weird symptom everyday and have struggled to find any story that is the exact same as mines.
These are just a shortlist of things I experience, I get smaller things like weird smells ( been woken out of my sleep a few times with the smell of burning) and am also prone to migranes.
I'm currently pushing for a prolonged EEG with my neurologist but he was very hesitant to even give me a 20 minute one as he's so sure that it is epilepsy and an EEG will be a waste of time as it might not pick up anything.
Is it normal with epilepsy to feel such bad anxiety and dpdr almost 24/7 as that's the part of my brain impacted ? Could this be PNES ?
Any advice or similar stories would be so appreciated as I'm desperate to get my life back. Thanks 😊 x