Epilepsy Support Thread

[Ostryga]

Hi all! Hopefully this will be a safe space to discuss the highs and horrible lows of living with epilepsy on a day to day basis. Somewhere we can support each other through a really difficult and misunderstood condition.

Hi charkbite, sorry you're in this crappy club too 🙁 you're absolutely right - it's all the stuff alongside the seizures that makes it so hard to deal with. I thought mine was under control for a bit, but it definitely isn't - I think another keppra increase is on the horizon.

@iweiwentjasonwaterfalls I've moved from keppra to brivaracetam a couple of years ago. Having spent the best part of 10 years on keppra. Briv is effectly keppra 2.0 without some of the side effects.

@chalks, so many of us fully understand your situation. I found one of the most emotionally challenging points was the approach to getting my driving licence back. My entire family seemed to be on a countdown.... oh, well, you've gone 2 years without a license. Only slither 6 months to go. Argh!!!

The mundane things we take for granted. Not being able to make a cuppa tea, cross the 'main road' or take dogs for a walk at a height of fits, to name a few.

One thing my neurologist told me 26 years ago... rule your epilepsy, don't let it rule you. It's stuck to me. It's made me more determined to overcome the ignorance of others.

@iwentjasonwaterfalls @Toomanylosthours
It is crap when they list all the things we are not “suggested” to do. Do admit to ignoring all of these in my 20s and doing whatever I felt like doing but that’s just having no fear isn’t it? Even though the tonic clonics (TCs) were vile and took ages to recover from, it felt like I could conquer anything. I never realised age would make it a more complex situation?!
I also didn’t realise the implication it would have on my brain. Back then nobody said taking the drugs would cause problems in the present or the future. I trusted everything they said, I guess.
anyway, no regrets. It has made me who I am and I am resilient - epilepsy does that, doesn’t it? What do you think?

if you can I would ditch Keppra and go to Briviact. I have done and am much better for it even though I’m drug resistant. I’m on three drugs and most of the month they can work.

I was wondering how you get on in your daily lives?
for example I have two girls - one teen and one under ten - and I have a partner, and I struggle sometimes and overcompensate for my lack of ability to properly feel like I’m a “proper “ parent, if that makes sense? On the days when I seize or I am too fatigued to do very much, I feel endless guilt. It is bottomless. So the days when I am active I go nuts doing lots and lots of things I know everyone will like, which in itself can have repercussions. My girls are everything to me and I try to get them, transport-wise, wherever they need to be, but sometimes this can be exhausting for them, and for me! Sometimes I look at drivers and their cars, and I simply loathe them lol! I’m filled with so much envy, I can’t even breathe.

i never used to be like that but as I have walked so many miles over the years, and worn through SO many trainers (I look at people buying HOFFS and wish I could buy something so swish however they would nt last a minute on 35 miles a wk) and to just slip into a car would be amazing. how cool to get your licence back @Toomanylosthours !!!!! That is awesome! I will not be loathing you obviously. 😘

and the final thought for today - sorry if this seems like a moan. I really am sorry. I don’t go on Mumsnet to write ever as I cannot relate but maybe I’m not relatable now!
my final thought is I HATE asking for help such as a lift somewhere which is pretty much what I have to do quite a bit. I had to do it yesterday as my daughter has been poorly with a cough and yesterday she got on the wrong side of poorly and my partner couldn’t take the time off, so my option was walk her - obviously not an option - or ask for a lift. And I spend my life constantly asking for help.

epilepsy is a shitshow. I really wish there was more discussion about it, more advice available - I only received PIP in the last two years and I’m so grateful for it, and I only got a bus pass recently too.

Sorry big rant.

Safe & happy days, people.

Chark completely feels your pain. I don't have children myself (stop sons), I was too petrified as a youngster to have children as really didn't want to pass epilepsy onto a child and have them go through what I'd experienced. I decided to plough myself into a career. The driving I can relate to. I feel so fortunate every day that I'm able to take the easy route and jump in the car. On the 4 occasions in 20 years where I've volunteered my license back, it's been torture. Do I selfishly keep the license and risk fitting behind the wheel? Asking for help is the hardest. You feel like such a burden and then become angry that people aren't asking if you need anything. I'm not sure if you're aware, but you can also apply for cheaper train travel. It costs £54 for a 3-year pass, but it will allow you and your career to receive cheaper travel. Doesn't solve your issue but may help a little financially and give you more options.

Ever get the feeling that people look at you and think, well, she looks fit and healthy, not sure what she's got to complain about? The joys of having a hidden disability

@Toomanylosthours oh my god I can’t imagine getting my licence and then giving it up. That must be utterly horrific. Hugs.
and yes, your last paragraph struck a chord. I often think if I look too well then folk won’t believe me. Walk too fast and I can’t possibly be genuine as a disabled person. Gah!

I was told not to have children by several GPs however I spoke with a specialist and they said it was alright. It doesn’t stop people asking if my daughters have epilepsy though! Usually strangers and usually in front of my girls which is so bonkers. I’d never do anything so ignorant but people really do not understand the condition. I came off my AEDs to become pregnant and remained off them for as long as possible. Once they were born I immediately started to seize. Whilst pregnant it was weirdly like I was protected. It was super nice being straight and drug free.

I worry a lot that I may pass on The Gene to them, however so far they’re healthy and marvellous but I so think sometimes that I have been selfish. I researched everything but ultimately it was a desperate bid to be “normal”.

Chark you've not been selfish. You've been brave! sounds like your girls are healthy and have so far avoided epilepsy so all should hopefully be good moving forward!

People's perspectives baffle me... its just epilepsy at one side and the other side of the scale look at you like a freak rolled out for entertainment. Folks are strange