AIBU to just want to throw all my epilepsy and other medication out of the window?

[Epilepsy]

Warning, this may be a bit sweary! I know sometimes these meds are prescribed for other conditions than epilepsy, so interested to hear all opinions. I know this is technically an AIBU question but it's in Chat as I want it to disappear, and would prefer people not to be as knobby as they can be in AIBU!

I have adult onset epilepsy and last year they finally found out the cause, which could be hopefully rectified with brain surgery but obviously that's a last resort. I have tonic clonic seizures which were nocturnal but became more frequent and now are occurring when awake too. I have another disease too which affects joints, nerves etc. I thought that was bad enough, I already lost my career etc and live with pain and other stuff daily but I could cope with it just about. This life now, I can't cope with.

Obviously it's fucked up my life even more in lots of ways and also affected my family. I am fucking sick of the uncertainty, of the A and E visits (the shortest visit length so far this year has been 8 fucking hours), of the frequent injuries, of the loss of independence, of knowing my family worry about me, of them finding me post seizure and having to deal with it. I worry so much about them finding me dead from a head injury, which I know is unlikely but I still fucking worry. I recently had a seizure in a small room and my legs looked like that bit in Misery after Kathy Bates wielded her hammer. I am sick of crutches and my wheelchair and missing all my fucking hospital appts due to seizures. I am so fucking sick of being always stuck in fucking bed.

I have tried pretty much every single medication. I currently take Keppra, Clobazam, and have just titrated up to max dose of eslicarbazepine. It makes me sleep 14 hours a night and the exhaustion feeling in the day is unreal. I cannot cope with it. I know the sensible thing is to stick with it, and see if I can bear the side effects for a reduction in seizures. This is the official medical plan, if it doesn't work I have one more possible drug option (so the whole fucking titration thing AGAIN ffs). If that doesn't work, surgery is final card to play.

I seriously don't think I can cope with such a small and crappy life as I have at the moment. I know I am lucky in many ways, my DH and my DC are absolutely fabulous, I couldn't ask for them to be better. I get PIP (although universal credit think I'm fit for work, that's a whole other story of stress).

Im so sick of injuries and pain but I could just about manage them til now. Now it's just the exhaustion. I want to throw the fucking eslicarbazepine and every other single fucking epilepsy medication out of the window right now. If they're not working anyway and the side effects aren't bearable, what's the fucking point? My family shouldn't have to live with all this either,it's so unfair for them. There is so much I want to do but can't. I really wanted to go to the shop to choose a specific present for a DD, it's impossible. I can't even do the tiny things I took for granted like just being to get out of bed and going to the bathroom. I am so so so exhausted and it's making so fucked off and frustrated. I feel like I am a zombie looking at everyday life through a thick glass window.

Has anyone else experienced this on Eslicarbazepine or just epilepsy? It's taken me sixteen weeks to titrate up and I cannot live like this, I think it's reduced brain activity on nocturnal seizures maybe, but I'm still averaging two "big" seizures a week, so what's the point. AIBU to say fuck it and just stop all the meds (obvs I do know I can't just stop everything immediately I would have to speak to medicals first)

I don't want sympathy (and please no suggestions for other epi meds as I have genuinely tried everything). I just want to know if anyone has experienced similar and got through it? Or just also wants to vent?

@Epilepsy Yeah 😂 the first draft of ‘don’t quote me’ would probably get me kicked out of MumsNet!
Sorry to hear that your epilepsy is swamping everything. Regards the crushing tiredness that the drugs bring I had the usual ‘discussion’ with my neurologist the other day. Faffing around with my meds has now reached its first anniversary. A lot of it has dragged on because of a failure in the medical community to think in joined up terms.
I should have picked up a prescription that she sent through for another month of dragged out beggaring about but my husband took me out for a meal instead. I can’t work up any enthusiasm for upping the drug load before reducing Epilim (I complained to my neurologist that I had put on a stone and if my husband or the dog stood still long enough they might be on the menu!
Had to switch down my availability at work because the buses suck enormously and my husband is only there to be chauffeuring me on fixed days.
I do hope that you have a break from it and that a time comes soon when epilepsy isn’t the first and last thing you think about.

No more fucks to give about my neurologist not getting in touch. Control went to hell in a handbag again following her advice. 😝

Hi @Epilepsy , you have my sympathy, I also have adult onset epilepsy but am nowhere like as badly affected as you. It's an absolutely horrible thing to have, and so shocking to suddenly have happen to you.

I just wanted to mention, going from your OP you really should be eligible for ESA. While it's likely you won't want to take the word of some Mumsnet random, I volunteered for several years, until earlier this year, at an advice centre completing sickness + disability benefit applications for people and would be happy to give advice if you want to direct message me. There is a particular way to answer and word answers to meet their approval- often ways that are not obvious and frequently not even logical. Obviously while being honest! But filling them in is a bit of an art form, and I would be happy to help. If you would understandably rather not trust an internet random 😁, do try epilepsy charities, CAB or local advice centres. Like I say, going by your posts, you should easily qualify.

Just noticed the thread is from July....

Don’t worry @Totallymessedthank you for taking the time to reply anyway. I do get full PIP but I do have other conditions as well. I agree the questions are somewhat misleading when really they are looking for specific wording. I always wince when I see people on here blithely say “just answer as though every day is your worst day” for fluctuating conditions like uncontrolled epilepsy as it’s all about whether you can actually do something safely, repeatedly, reliably etc. Anyway that’s a whole other potential very sweary rant!

Oh @FortunateCatsGlugDaquirisAllEveningBlindlyI am so with you about getting to the “no more fucks to give” when tinkering with meds. Perhaps “Fuck The Faffing” could be the mantra for that. Sorry about the job, it really really sucks being reliant on other people to drive you, especially when public transport is as shit as it is. I have a disabled persons travelcard which gives me free travel after 9.30am. Whilst I am grateful to have it, it really pisses me off that the assumption is that disabled people don’t need to travel to work etc in peak time. What the fuck. If the government want to help disabled people get into and remain in work, they could start with things like that!

I am well past the “Fuck the Faffing” stage (“Can’t even be Fucked to Faff”?) with meds too atm, to be fair, even my neurology team have reached that stage with me too! The surgery is still on the horizon but unfortunately another medical issue has arisen which knocks even brain surgery to the bottom of the “things to do” list. I’d laugh if it wasn’t all so fucked up. I’ve spent all these months worrying about brain surgery and then all of a sudden something potentially even worse appears out of the blue. And of course the operations for that are being fucked over by the epilepsy, this week I’m on my third reschedule now. God it is SO frustrating and stressful. But hopefully good for people on the short notice/cancellation list as I’d like to think someone was able to use the dates I’ve not been able to make.

I’m really worried about the stress on DH too, just to add to the worries, his job is now looking wobbly, which is all we need. I know he was reluctant to tell me as didn’t want me to stress but we’ve been married too long to get away with trying to hide stuff! So he’s worried about me being too stressed, and I’m worried about him being too stressed. He looks absolutely exhausted. I feel awful for him.

I can’t think of anything we can do to make it easier except wait it all out and hope we get some piece of good news no matter how small, whether it’s health or work, just to keep us going. Hopefully I’ll be able to have my (not brain) operation very soon, at least that part would be behind us even if there’s a wait for results and the next steps. I’d quite like to win the lottery but I don’t play it! At least all my Christmas stuff is organised as I’ve had time to do it and spread the cost (it’s only presents/stockings for the DC anyway) and am aware December may not give me a chance. And it’s been an added bonus that it’s done because if DH’s job is fucked, it’ll be a relief things are paid for already. And if I’m in hospital DH won’t have to sort anything out, it’s all done. I like to be prepared anyway, it’s comforting.

@Epilepsy The bloody neuro got back in touch and offered me an appointment on 30th December. Utterly gobsmacked. I phoned up and wailed down the phone about everything to her new secretary.
I have full PIP too but had to go to a tribunal to get it, despite having a seizure at my initial assessment. I was deemed able to walk the distance they check because I managed to get to the toilet to sort myself out after I came round. Utter bastards. Yep, I agree the forms are a nightmare and they have to be filled in in a certain way. ‘Your worst day’ Jesus, most days can be like that in some way but it is trying to make someone who doesn’t have the condition understand. As I said to my neurologist last time we spoke, ‘With all due respect, how can you say that (about fatigue) you aren’t taking the drugs’
I’m sorry to hear that another medical condition is making life worse than usual for you and I can empathise with the situation regarding your husband’s job. My husband has 75% hearing loss and has been let go from a few jobs purely on reasons relating to his hearing loss. Thankfully his current job is mostly lone working but he has to drive far too far. So much for health and safety and Disability discrimination!
I know what you mean about organising. I am the worst control freak, I think something about epilepsy does that too you, if you can’t get a handle on your seizures/control, by hell everything else will run like clockwork.
Sorry, I’m knackered, it’s the drug load that my neurologist said shouldn’t affect me 🙄
I hope everything turns around for you soon and that however shaky your husband’s job is just now, it either becomes unshaky or he is snapped up quickly for an alternative one.

Quick post just to say thank you, I know I have PMs but can't access to reply (stupid BETA app test and hospital bloody wifi!) Not ignoring anyone x

Thank you so much

Take your time…hope everything else in the hospital is treating you well, even if the WiFi isn’t!
Sorry about the f*ck up with the MN message system 😬
Take care.