I hate epilepsy!

[Ostryga]

I am sick to death of this fucking condition. I’m taking keppra, Tegretol and clobazam and it won’t fuck off.

Im so sick of having seizures out of the blue and the side effects of these horrible medications. I just wish my brain would stop being so ridiculous and I could go back to normal.

I fully sympathise. My DS was diagnosed at 18 months, AEDs would work for a bit, then stop. Vicious circle. Mainly absence seizures. He was on Clobazam, Keppra and Sodium Valproate, all at the same time in the end, but to no avail. Luckily, after months of tests & invasive monitoring he was deemed suitable for resection. That was 5 years ago and he hasn’t had a seizure since (he is 11).

Big hug. 💐Epilepsy sucks.

Im with you. My son who is 3 has epilepsy among other things and its the worst. Feel like we can never fully relax.

I hear you. My daughter just spent the week before Christmas in picu on a ventilator after a seizure. It sucks!

Sorry OP. Horrible condition to live with. Sending hugs.

Epilepsy can fuck off. DS was in hospital after multiple seizures recently, he’s on Keppra after coming off sodium valproate. We can’t ever relax, everything has to be planned. He’s having night time seizures now so I can never fully sleeps it’s like having a newborn for tiredness. He is hoping to go to university and I am dreading it completely.

I hate it. It’s unpredictable, the meds are shit and it’s always there in the back of my mind. I have been stable for 3 years, having FINALLY found the right combo of meds. One thing I hate is not being able trust my own brain. Sounds stupid, but for 32 years it was a pretty good brain and now it’s screwed and I don’t feel people get it.
It started 10 years ago, out of nowhere. Have you always had it? Do you think you might know what your triggers are? I thought I knew and then “bam” one comes along out of nowhere.
Any way I’m giving you all and those you love a hug (not even a nonmumsnetty one).
Mine is now stable (🤞🤞🤞🤞🤞🤞🤞🤞) it took many drugs and combinations but if I stick to remembering them, which has turned out harder than I thought, and I get enough rest it SEEMS ok.
But it’s still shit.

If you have the time and interest I can recommend two podcasts that discuss the use of the Ketogenic diet to treat seizure disorders, Stem talk 14 and 153. It might not be useful to you, but more information might help.
https://www.ihmc.us/stemtalk/episode-14/