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?

I'm having brain surgery for a tumour recurrence later this week, it's my 2nd surgery. I've also had partial seizures and am on medication, not anywhere near as bad as your seizure situation though. Given how badly this is affecting your life, in your place, I would push for the surgery option now, rather than wait. I do understand how serious the surgery is but if it is the solution then I would go for it.

Threads in chat don't disappear anymore. If you want this to disappear you need to report your post and ask Mumsnet to move it to "90 days only" or "30 days only".

Thank you @atticstage I can't keep up with the MN changes! I will report it.

@Mistymountain you sound a lot braver than I am, having a second surgery must be hard for you. May I ask (please don't feel obliged to answer, or PM me if you prefer?) which part of your brain has/will be operated on, and how you found your recovery? Mine isn't actually classified as a tumour, it's a rare condition that has only recently started to be recognised due to better technology/studies etc. So there isn't that much great data, and due to the areas involved, surgery is the last option recommended by neuro as they would prefer medication route first. I understand but some days it's hard. I would feel better if I was at least onto trying the last medication as I would know, if that makes sense? I've spent so long titrating up and side effects, titrating down and trying something new. Also this will sound awful, but my life insurance ends next year (obviously no one will re-insure me after that!) and sometimes I think I'd like the surgery to be before that date as at least if it doesn't work, my DC will inherit some money.

That sounds bad I know, and I really hope nothing I have said sounds insensitive to your situation. I'm not religious and don't pray, but if want to say what day your surgery is on, I will think of you.

I think I'm just having a slight pity party as I'm exhausted and really frustrated this morning. One of my DC who lives away is coming to visit and I so badly wanted to go to the shops and pick out lovely food and drinks treats for her. DH just found me crying (I never ever used to cry!) and we ordered shopping on Uber Eats which was a good idea.

Yes I have adult onset epilepsy. Mine is TLE, i don't have TCs. It is now controlled but it took a long time. Similar set of drugs to you but have never tried eslicarbazepine. I did cycle through four before getting to my current combo. But the side effects of incredible sedation is pretty common.

I think you should consider cutting and pasting this post into an email and forwarding to your epilepsy nurse and neurologist. realize you are probably telling them this too. Obviously getting the seizures under control is important. But managing side effects is critical too.

I won't say what meds I am on as it's irrelevant but also if you are experiencing some nocturnal events still and daytime seizures that level of fatigue could be normal with the epilepsy alone not the drugs. IF you achieved a medication regime that worked the fact your brain was not having seizures would reduce fatigue. At the moment you are getting a double whammy which sounds horrendous. So you have options like they ng something to replace the eslicarbazepine, but also looking at the clobberzam which will definitely be wiping you out as you think about a way forward.

There is no way to find a drug with no sedation as a side effect as you titrate, they all reduce brain activity in some way and will make you feel tired to begin with. But once they work long-term sedation is not inevitable.

The only thing I would say is years ago the theory was once you had tried 2+ drugs without success the odds of a new drug working dropped massively. Apparently there are so many drugs with different mechanisms of action that's no longer the case. The fact eslicarbazepine isn't for you doesn't mean the next drug you try won't be.

It's an absolute pisser. If swearing a lot helps do that.

Thank you @Bigcoatlady, sorry you are in a similar situation. Oh I do swear a lot! It's good therapy. I think I'm just at the end of my fucking tether today. So far I've just put up with cycling through titrations of various meds and waiting out side effects and judging seizure control, but I think knowing this is the penultimate one feels a bit like waiting for the final of your favourite series, if that makes sense? But not in an enjoyable way - I just want it fucking over and done with! (And I've done all this with medications for pain control before all this so I should be used to it.) Today is just a particularly bad day with DDs visit coming, I have other pain plus a leg injury and something has just flared up which I know is a possible hospital admission which means I'll miss her visit, I hate hospital and I also hate my DCs having to visit me in hospital. All that plus feeling just so absolutely fucking exhausted was the final straw this morning. I'm so so so knackered and so so so frustrated.

I'm in regular contact with neurology team plus other depts and have a very lovely GP, so I can vent to a lot of people. Minus the swearing mostly

If surgery is an option I would push push push. All the meds have severe side effects and not are anywhere as effective as you would hope. Dsd has multiple seizures a day and quality of life is very different (she's the happiest person I know though!) no meds work, surgery if an option amazing. I'm hoping she may be eligible for the brain implant but her ld's caused by the syndrome currently mean I doubt she will be eligible

Have you looked into getting a medical cannabis prescription? Pretty sure epilepsy is one of the conditions you can get it for. You can take it as an oil or vape it.

@Epilepsy Don’t throw your meds out, you have no idea how many seizures you may have without them. It may be that they work, but not as well as you would want, or a lot of us would want sadly, but they are a helluva lot better than nothing.
My epilepsy started when I was three. I take tonic clonic and myoclonic seizures, thankfully I have been controlled for a good while now. However the difference between ‘seizure free’ and good quality of life’ seems to be lost on some of the medical profession.

You mentioned another medical condition, do you take medication for that condition too? The exhaustion and any other side effects might be exacerbated by the combinations. It might be worth while if you are on meds for both, to see your specialists for a review of your medication.

I know what I just said sounds dumb given everything you have said about surgery.
You say you have been on almost every drug. Keppra is a bit like reverse Marmite, it either loves you or it hates you and the split is roughly 50/50. The medical profession appear to like it, it titrates up to a therapeutic dose rapidly, it has high bioavailability for an oral dosage drug, it is just a severe pain in the bum for approximately 50% of us for whom it doesn’t really do the trick and has horrible side effects.
Clobazam is a benzodiazepine, a neurologist once offered it to me and told me (I get hideous insomnia, always have) that I would sleep well if I took it at night. Question is what time of the afternoon would I wake up? I refused.
Eslicarbazepine seems to be the new improved carbamazepine and oxcarbazepine, god knows if it is.

I have an ancient pharmacology degree that I wield if any of the tricky sods tries to do anything with my drugs now.
However, one of the drugs is causing serious bother. The titration to switch it started in November 2023.
OP when you talk about fatigue I get you, totally.
Yes, seizures increase fatigue and uncontrolled seizures are bloody awful for fatigue. I sleep for ages after seizures. But epilepsy medication, the fatigue tends to be dosage dependent and related to how many drugs you are on. For instance, my switch in November, I was previously on two drugs and would occasionally sleep for an hour and a half in the evening, ok, most evenings. Before the switch went totally bloody pair shaped in March, I was sleeping twice a day on a high dose of three drugs because I couldn’t manage to reduce one and couldn’t get hold of my neurologist.
Now, I have committed to a potential ten months of hell to make the switch another way. More bloody tiredness.
Life is:
wake up
Walk dog, apologise to dog for short walk, too knackered since we lost access to our field and he could run like a bonkers thing and I could stand still chucking balls and loving his crazy self.
Husband nags me to eat - too tired, what is easy and not too junky.
sleep
still feel tired
phone husband. Check email. Look at jobs I could do if I didn’t feel so bloody tired.
Feel sorry for the dog and wish I had more energy to give him another walk.
Cook something for tea - when I have energy, if not sleep.
Husband comes home
Dog is happy - no bloody wonder after being stuck with me all day
Have tea and last waste of life sleep before going to bed. I loathe the colour of the walls in our bedroom and the view.
I haven’t had as many injuries as it sounds like you have but I lost one job after being off for 4 months in a burns unit for plastic surgery to my scalp after a seizure - unable to be retrained. Another employer decided I was unsafe in the workplace and although four doctors said I was fine and I won a grievance, the situation was made so awful at work I resigned. Discrimination and all that jazz is a joke.
I get PIP too but I’m in Scotland, waiting to see if the SSS will decide I have suddenly recovered.

I am so sorry I promised I would write some sensible and pertinent advice. Instead I just bawled out a whole load of stuff about how absolutely horrendous the fatigue is. I really don’t think you can appreciate it unless you are on the drugs.
In 2017 I developed constant tinnitus and the tinnitus tires you out too, AND when I’m tired my tinnitus gets worse. What a kicker.

I remember when I first met my husband. Someone I knew tried to put him off me. They told him I was lazy and slept most of the time.
My husband paid no attention to him. He also carried me to A&E a week after we met and watched me seize and vomit over a doctor who thought I was a junkie.

My poor husband has injured his knee and is in real pain with it and I just feel tired all the time.
I can sympathise with wanting to cry. My husband has been asking me what is wrong since the beginning of the year.

Im very sorry I couldn’t write anything more helpful. I did start off with good intentions.
In an attempt to rectify things, has this drug been tried it is one of the newer ones, although I don’t know if they would think it the best one for you.
https://epilepsysociety.org.uk/news/cenobamate-treating-focal-onset-seizures-epilepsy

Thank you for all replies, and PMs.

@mitogoshi it was lovely to read your DD is the happiest person you know, it was really touching. That's the most important thing we all want our DCs to be, when it comes down to it isn't it?

@UnpoachedPears medical cannabis for epilepsy is only available on the NHS for DC with the most severe forms, and I believe since the great fanfare of the announcement and how wonderful the government were in licensing it, something like 5 children have been issued with it via the NHS Even if I could afford to pay for it privately, I don't want to add to the "tinkering" complications of all my meds, it's the last thing I need when I'm trying to reach a balance (even if extremely bloody tempting!)

@FortunateCatsGlugDaquirisAllEveningBlindly you are very knowledgeable, that degree must be very useful if you can beat recalcitrant or less knowledgeable doctors over the head with it! I hope it was a bit cathartic for you writing that? Re your sadness, and your DH has been asking you what's wrong for ages, have you sat down with him and sobbed and got it all out? I so understand the reluctance to do that as I'm exactly like that myself. DH is so fabulous in practical support and kindness and I know I can (literally as well as figuratively !) fall backwards and he will always be there to have my back. He never says a word of complaint himself, he does everything including working shit hours of split shifts so he can be there for me, and I know sometimes he is exhausted himself. Our lives when we met were completely different, I was the breadwinner (I lost my good career too) I never imagined our lives would end up like this.

I feel a lot of sadness and also guilt that he carries such a heavy load and always feel the last thing he needs is me sobbing on him and giving him an extra worry. BUT he, like your DH already knows you're sad, which is why your DH has been asking you. Please confide in him and get it all out. (I never want to presume about peoples' relationships so I hope I'm not overstepping the mark, but our situations and DHs do sound so similar) It takes a lot to make me actively cry properly, I'm an expert in saying "no honestly, I'm fine, no really I'm sure" whilst smiling with my lips squeezed and hoping the tears stay in the back of my eyes, while DH looks dubious. Apart from women being socialised under the patriarchy (whole other thread!), I think we just don't to feel like we are loading more onto our already overloaded DHs by showing sadness, especially when they can't fix it. But now I try to see it as sharing not loading it, certainly when I "gave in" yesterday I felt so much better and DH himself looked miles better afterwards, I realised I had actually allayed his worries about me, as well as getting it off my chest. If he knows I am happier, he is happier, basically.

Women like us "trying not to cry" type are our own worse enemies I think! If you needed the toilet you wouldn't save it up until you were bursting and in pain, you would just go to the toilet! Why do we save up our sadness and frustration? I tell my DCs (esp DDs) to treat their emotional health like their physical health, but for some reason I'm shit at it myself. Honestly, please talk to your DH. I know I've gone on and on there but you've given me a lot of good advice so I'd like to try to repay it in some small way.

On the more boring topic of drugs and surgery, Cenobamate was horrific for me, I actually had to stop it before full titration as I was showing signs of neurotoxicity(?). I too think it's a marmite drug like Keppra, which funnily has been easy for me and was effective until it wasn't (IFSWIM) My new med is an add on to it not a replacement. I'll keep going with this one and try the last option if I get there. The surgery is relatively "new" compared to existing, more tried and tested types of epilepsy surgery. It's quite invasive and one of those where they don't know exactly what they can do until they get in there! It's also bilateral (of course ) which doesn't help. Obviously they wouldn't offer if it if the risk was too great, and my consultant is very specialist/renowned so I trust him. I think I'll cross that bridge when they get there and just worry "one medication" at the time, at the moment. As well as always refusing to cry, I overthink absolutely everything and DH advised me yesterday to just go one foot in front of the other at the moment, which is good advice.

The good news today I that I don't need a hospital admission(DH was right when I finally sobbed in on his T-shirt, I was stressing about something that I didn't need to, as it was a possibility not a definite!) it's related to my other conditions, and you are right in that some of the meds you mentioned, can interact so it really is a jigsaw. But I have things like nerve and optic problems which require medication, and I have very limited mobility. I'm very lucky to have an amazing MDT as my epilepsy and eyes are managed under a separate hospital to the others, everyone including me is involved in all decisions and all correspondence about everything is copied to everyone, including me. (I'd start in about PIP here but fuck me that's worth a whole thread!)

God that was long sorry. I hope you feel better, do please get it off your chest to your DH, honestly after doing it yesterday I know we both feel miles better mentally.

Oh, and this "I loathe the colour of the walls in our bedroom and the view." I can't tell you how much this resonates with me! (The worst is we have fucking awful neighbours on one side, and I mean awful. I can't change that view (or their awful fucking noise and barking dogs) Our bedroom is overloaded so I don't see much of the walls but we have the nicest curtains and bedding that we can afford. Even just a selection of lovely throws/blankets for the top which are swapped every day cheers me up.

Sounds daft I know, but it really does help me.

Hi OP I don't have epilepsy but I have been on pregabalin for nerve pain from shingles and that was horrible, the brain fog and tiredness even though it helped the pain were too much. So I understand what these drugs can be like.

I just wanted to say I get PIP and also ESA, it might be worth sending ESA your PIP decision letter with the points etc, they are not the same but they can now use this to help with the ESA (and vice versa). Hope this might be helpful. And I hope the surgery helps.

Dh was diagnosed with a cavernous hemangioma which caused him multiple partial complex seizures a day. He had the surgery and is drug free.
His cavernoma was above and behind his right ear. Had tried multiple meds with poor control.
What I found was certain foods triggered him or decreased the meds reliability. Cherries were the worse but most fruit, all foods that rushed through the intestines high fiber etc. Most of the meds he was on were absorbed in the intestine, not the stomach.
seizure free 15+ yrs, med free 10+ yrs.

I don’t have epilepsy so I can’t comment on the wisdom of throwing all your drugs out but I do have trigeminal neuralgia and carbamazepine is the drug of choice.

I prefer to take the pain of an attack than live with the side effects

@Orangesandlemons77 yes I take a similar drug to pregablin for nerve pain but I can cope with that one, funnily enough! I know shingles is absolutely horrific, I hope you've recovered well. I am not eligible for ESA only Universal Credit, who think I am fit for work I do receive full amounts of care/mobility components of PIP, have written consultant diagnoses for everything not just epilepsy, and my GP has been happy to provide/renew sick notes. I have looked at my diary and since the beginning of June, seriously, cannot see one, one fucking occasion that I have been able to leave my home, even in my wheelchair, apart from hospital emergencies. In that time DH has had to cancel 8 scheduled (and important) medical appointments for me due to seizures. So one would think me not being fit to work is a no brainer (pun intended!) but apparently I just need the right support in place Obviously I'm dealing with this but that stress is not fucking helping me. It also upsets me, as they treat you like a lazy scrounger stereotype - I had a fucking good career I loved, and a bloody good work ethic, why would I choose to lose all that (and a fucking nice company car!) and live like this instead? Who the fuck would willingly choose this? I would fucking LOVE to be well enough to work.

@CurlsnSunshinetime4tea I am glad your DH had successful surgery and remains seizure free, that must be a huge relief for you both.

@Elphame that's the thing as mentioned up thread isn't it, quality of life versus meds side effects/surgery risk. Applies to so many medical scenarios!

@Epilepsy actually yes a massive weight off our shoulders. his epilepsy was poorly controlled for a fairly long period though, about 10 years. we lived very rurally and the family physician was not fully on the ball (ie didn't pick up that the prescription refills were more often) and didn't know about some provincial services in vancouver (yes i'm in canada). however once he was referred to the specialist things picked up pace extremely quickly. the specialist mentioned as above with having attempted 2-4 meds and combinations of the likelihood of medication being effective was unlikely. he was referred to the epilepsy clinic in vancouver (not in service at this time) was placed on 24/7 in hospital monitoring for 1 week, seizures were observed while both on eeg's and video. he had some cognitive testing and a wada test (he thought that very cool, done via the groin) the wada test showed that he had speech and memory on both sides of the brain and was therefor a good candidate for surgery.
the surgery was long in itself but it was a teaching hospital and there were several people who viewed his surgery. the recovery very quick; the bone of the head (being non weight bearing) has no pain receptors nor does the brain, so the discomfort was the suture line and probably due to swelling his jaw.
he had one or two seizures over the following month (partial complex) but he felt different and knew that he was seizure free. he spent 2 weeks at home doing motorcycle rebuild and yard work, then started working from home on his laptop (long before covid) and returned to work after about 1 month off. after about 8 years he saw a specialist to discuss coming off the meds, who said "go for it, nothing to loose. make sure someone is with you as much as possible for the next 6 months".
he focuses on the fact that by waiting x many years for the surgery that technology had improved and made the procedure a success.
positive thoughts @Epilepsy may the meds get sorted and know that there is always progress being made in the field of neurology.

I developed epilepsy in my late teens after a very serious illness. I don't have a lot of memories of the illness or immediate aftermath, and my mum (who looked after me after being discharged) doesn't like talking about that time. Slightly strange to be missing a year of your life! It took the best part of a decade to control my epilepsy though, and I went through around 12 different medications before settling on a combination of five for a few years, before coming down to the three I'm on today. The position of the scar that causes my epilepsy means that it is and always will be inoperable.

I can't say I know what you're going through as I missed (for want of a better word) the first year after diagnosis, but I do know what it's like to want to throw your drugs out of the window: if you want to get the surgery, push for it, but don't throw the meds out. Epilepsy is a difficult condition to have, and pretty much everyone I've met with it has suffered some form of workplace discrimination, me included. Still misunderstood and underfunded for research, but even in the decades since my diagnosis the meds have come on leaps and bounds.

@EncephalitisSurvivor When my epilepsy went haywire in my teens there is a large chunk of third year at high school that is totally gone. All that records it is a comment in my report card saying ‘did well to catch up after being absent so often’. I totted up the missing days and I was off for half the year!
@Epilepsy Thank you for everything you said. I should talk to my husband. I’m bloody awful at talking to anyone about my epilepsy.
My mother once told me how someone having a seizure ruined her dinner with her friends, having that level of empathy in the family teaches you to shut up. There is more fear and stigma even now surrounding seizures, I think it is the loss of control that scares people and the panic regarding the cause and what to do. The TV has a lot to answer for 🙄.
Is the drug you mentioned for the other medical condition gabapentin? Just chucking a guess in based on what was said. If it is god, no wonder you are shattered!
My husband is amazing. He knows I am dreadful at talking but like you said he has my back and will literally catch me.
I once woke up on our kitchen floor to find my husband staring down with a cup of tea in his hand for me. Not exactly ‘cushion the head, move stuff out of the way and time the seizure’ but it works for me.
I’m up typing because the fecking drugs are messing with my sleep and I’m getting weird dreams (hello, lamotrigine! Come on down!) And to reduce the Topamax (topirimate) from 200 to 175 involves going from one drug to 3, or seven, if they keep giving you parallel imports that you react to and you end up having to make it up from the prescription you didn’t return the last time this failed because….well, you never know.
I also feel like rubbish because of the quantity of drugs I’m taking. I made something nice for tea. Amazing! I had the energy. My husband loved it but now I feel ill. I think I’m just used to a diet of anticonvulsant drugs.

I’m sorry I keep having to delete what I’ve written because I’m too tired to make sense but I feel bleugh🤮 and can’t sleep. It’s either the drug reduction or my own cooking.
@Epilepsy PM me if you want. No one really acknowledges or appreciates just how tired the drugs and the seizures make you. I remember reading a news article about a teenage girl who killed herself because of the level of fatigue. Her parents said she could barely walk down a corridor in a straight line. She was on carbamazepine and another drug I’m pretty sure. The medical profession needs to understand that it isn’t just ‘how many seizures have you had since I last saw you?’ It isn’t black and white.
Christ, there are way, way more than 50 shades of grey about epilepsy and no fucking one of them is in any way erotic.
I hope either your current titration or the surgery makes a real difference to your epilepsy and the fatigue and side effects.

Sorry for delay in replying, I've had a nightmare with an infection on top of everything else and it's all got a bit fucked up (definitely could be a sweary post!) I need a hospital admission but have hopefully managed to delay it until next week, although I imagine the IT problems are causing havoc, I have a lot of sympathy for NHS staff atm!

@CurlsnSunshinetime4tea I'm really pleased your DH is doing so much better, it was so interesting to hear that he "felt different" so quickly. There is definitely so much progress being made, I only obtained my diagnosis last year - although it's always been the cause of my epilepsy for years, it's the progress of technology that enabled them to finally find it.

@EncephalitisSurvivor and @FortunateCatsGlugDaquirisAllEveningBlindly the memory issues are, well if it wasn't so shit, I'd call them fascinating. When my neurologist explained the brain and memory to me, in the terms of the filing cabinet and what is stored where - so probably as simple as he could make it for a layperson and I still didn't quite get it, and have forgotten a lot of what he said (how fucking ironic) I'm sorry you've missed big chunks, could I ask if you have short term memory problems now? I seem to have lost various short periods from my past but it seems so random e.g. I only remember the birth of one of my DC but not the rest of them. I can't remember various other things like one of them sitting GCSEs, but it's just so random Again, this bit would be genuinely interesting if it wasn't actually shit, immediately post seizure I seem to travel back in time (have other threads on this!) e.g. once I was convinced my DC were little and wanted to see them, DH had to gently explain a couple of them weren't in their cots next door, they were away at university I remember the oddest things so exactly at these times, that I would never remember now, like reference numbers of really old electricity contracts, or I know the timetable for a specific day at school and a play date arranged for after, including the telephone of the mum of the friend. I think it must be similar to how people remember registration plates of cars they had twenty years ago! It's a bit disorienting as sometimes I'm convinced I live in a previous house, so I don't recognise the room I'm in and it can be terrifying not knowing what's outside the door of the room I'm in.

My temporal lobe means my short term/working memory is a bit fucked, I usually lose the day previous to a seizure, but day to day I can't keep memories eg I have to read things three times where a none epileptic person would only need to read it once. And a lot vanishes a couple of days later anyway. In some ways it's great as it means I can re-read books and it's like they're brand new. DD watched a film with me the other day, it was an edge of your seat action type thing so I was "oooh" at various intervals. Afterwards she gently told me we had already watched it together a few months ago

FortunateCats your DH sounds lovely, similar to mine! I came home from a hospital stay once after a head injury from a kitchen seizure and he had bought much thicker rugs for the kitchen, but had also bought a shelving unit and a new blind in the same colour as the rugs with a casual "oh I know you had been wanting to change the kitchen for ages" in an attempt to make me think the new rugs were absolutely in no way connected to seizure worries, no, not at all

I don't know if anyone else does this? but I can be aggressive and rude after a seizure, which is awful in public but not great at home either. I feel fortunate my DC are older, so we do use the odd "fuck" in general conversation, but nothing stronger/worse than that. A while back I shouted "fuck off you cunt and just leave me alone" really loudly at one of them when they were just trying to put me in the recovery position. Thankfully they saw the funny side and said they were trying really hard not to giggle at the time.

Hey OP, I'm sorry you're having a shitty time of it.

Just wanted to commiserate - I don't have epilepsy, but I do have chronic migraine and I have also been through the years of shite medications with appalling side effects and fuck all changes to the attacks, pain levels or exhaustion.

I'm now on the CGRP injections for migraine prevention which have been life changing with how effective they are, along with very very minimal side effects.

Compare that with topiramate which fucked me up so royally, it nearly cost me my career, my marriage and my driving licence.

I was being tested for sleep apnoea, blood cancers and a host of other issues as I could sleep standing up, my brain fog was so bad I couldn't work out left from right some days. All of it was the fucking topiramate. Neurology were brilliant, took me off it (albeit took a year for a referral!) - he said it wasn't working, so might as well not bother - and changed my regime to include new meds and Botox.

It's taken a while since to hit the right regime and I'm certainly not cured, but dear god the difference is immense.

You have all my empathy and crack on with the fucking swearing - there's lots of evidence it helps manage pain levels BTW, so why not stress levels too!

Fuck epilepsy. I'm sorry. Your family sound great though!

Sending solidarity to all. I am recovering from radiotherapy for a brain tumour after years of adult onset (fucking) epilepsy.

Carbamazapine was pretty awful as was keppra but brivaracetam has been considerably better than keppra. It's a very similar drug, just with higher specificity in terms of where it acts I believe so it causes fewer mood related side effects.

When much younger I even had a go at non-medical cannabis once thinking it might be a miracle cure. Needless to say I had a seizure in my cauliflower cheese at work the next day!

Ah the turning on the charm after a seizure I can totally relate to! My kids all tolerated it really well and found it quite funny. DH got very good at realizing I had just had a seizure and saying nothing.

It's not the greatest side effect but I have yet to meet someone with epilepsy who cannot relate to that.

And totally relate to the arsiness.

@Catunderling Ooh done the terrible twosome of brivaracetam and levetiracetam. Carbamazepine just exacerbated my myoclonic seizures so that was curtailed sharpish to avoid breakages!
@Bigcoatlady @Epilepsy Oh hell yes I am a miserable angry bitch when I come round. Mentally it is a combination of the following:

1. Argh! My head feels like a bomb went off inside it and hurts like hell.
2. Not-a-fucking-gain!!!!
3. Stop fucking crowding me!
4. WHAT IS THIS SHIT in my hair this time!!?
5. Yes I know the bloody Prime Minister’s name, though we were going through them at a hellish rate.
6. NO I don’t need to go to bloody hospital!

Oddly enough if someone phones my husband he can talk me down from any post ictal rage.
I once had a seizure and my stepson came home unexpectedly. Poor sod was met with a torrent of abuse. I had just come round and didn’t recognise him. I thought he was a burglar and screamed at him to ‘Get the fuck out of my house or I’m calling the police!’.
He legged it and called his Dad.
I had recovered enough to answer the phone ‘Can you let DS in?’
‘Eh?’
’I hear you had a seizure and were a bit upset when DS came in unexpectedly. He’s outside.’
Still feel bad about that because I can see his face when I was yelling in my mind.

On the other hand I have had the filing cabinet analogy too. I can’t remember much of third year at high school. I know that pretty much every school disco ended in a seizure.
Seizures close together or status really suit the filing cabinet analogy, some of the memories you get back, some you don’t.
I had two seizures close together one at work and one in the taxi going home. All I know is the first aider who took me home never spoke to me again until I left the job - can’t remember a thing to this day.
Being loaded with meds I feel the effect on memory is more like the difference between trying to load a webpage with optical fibre broadband and trying to load the same site with ADSL or dial up. Yeah, sometimes it doesn’t load and it buffers with you hoping something other than a 404 error churns up.

@ButtSurgery topirimate or rather the branded version Topamax is the drug I’m trying to get rid of. I remember thinking it was wonderful at first. I was on Topamax 200mg and Levetiracetam 500mg BD and my weight, which was normal enough, plummeted so much that I dropped a shoe size. My husband’s friends thought I was ill. My female friends thought I looked excellent and asked how I did it.
After years with Epilim, I was delighted.
To cut a long story short I ended up begging another neurologist to take me off Levetiracetam, which had gone very bad and put me back on the loathsome Epilim. And there I stayed for the next 13 years.
Topirimate is noted for its effects on memory, language skills and attention, I knew a couple of people on topamax sprinkle for migraine. CGPR was the next big thing as I was leaving uni. I have a friend who suffers badly with migraines and I remember forwarding something from a lecturer to her. I’m glad that they are working so much better for you than topirimate.

Losing so much weight you drop a shoe size was what happened to me on zonisamide. In about 4m. And likewise I wasn't big to start with. I ended up going to my GP and saying this is a real problem as I am clinically severely underweight (I think my BMI was about 17) and at the time I was working with people with eating disorders, I was probably triggering my own patients to relapse.

He literally said I needed to eat more pies. Probably good he didn't do my job - did give me some idea how eating disorders can get so serious before people get help though.