Always warms my heart when people who you've never met randomly message you because it's been a while since you've been on an inconsequential internet forum
Updates are warranted by that criteria
It's now been 2 years since my life was well and truly turned upside down - I'm still having seizures and they fecking suck.
Was going well up until November 2024, meds working (seemingly) but then had 3 seizures in one day.
First was at 3.05pm on a Friday afternoon during term time - luckily we kick out at 3pm, scared everyone shitless, came back to full awareness around 5pm, they told me an ambulance would take ages, but they'd called my wife who had spoken to a couple of mates who were on the way to get me.
Second was around 5.30pm in the car of the mate who was driving, second mate was trying to stop me eating my tongue (he won't do that again) - apparently parked at the side of the road for some time (more than an hour) whilst my brain rebooted, and he was confident enough to drive.
Third was in A&E behind the scenes as they wanted to monitor me (ECG etc), I remember being there covered in wires talking to my wife - until I had the final seizure, for which my wife did a full pull curtains open "Help me" shout and 12 medical staff descend on me.
That earned me a catheter, the weekend in the hospital, an increase in meds and (relatively fast) appointment with the neurologist.
Another bump in medication to the max dose that you can have of it (Lacosamide)
All will be well now.............
Nope!
During April - another seizure, luckily during Easter
During May - seizure at 6.20am in morning, wife films this one at request of neurologist (must send him the footage), during day am obviously groggy and a little disoriented. Wife is concerned so calls NHS 111, goes through the questions, and they want to talk to me ......
Had ............. A ............. Seizure .............. Whilst ..................... On ............ The .............. Phone!
Amazing how fast an ambulance gets to you when that happens!
Now on hybrid meds, is early days yet, but would like this to stop now.
It's not fun, everyone is my mum now and trying to be nice (offering lifts to bus stop etc. even though my bus is at 6.47am).
Friends and family call me endless names - spacker, spazzer, mong, mongboy, retard etc. (Which I don't actually mind as it helps me accept my situation more easily)
Thanks for remembering me, I am part of the Facebook group and do actually comment there occasionally - look for Simon Brown and you'll know I'm somehow, unbelievably, still alive.
The docs who treated me for the May seizures had the most dumbstruck faces when my wife did the medical history
They did however confirm that in a normal universe - I should be dead already
