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?

@Bigcoatlady I had an eating disorder pretty much from my teens to my thirties. However my GP wouldn’t acknowledge it and in my twenties I think I only ever saw a doctor to register and collect my prescription. I had grown a bit sick of doctors. Very long story but my Mother had a very twisted attitude to food up until she died.
If I wasn’t battling Epilim by constantly dieting radically and training obsessively, I had bulimia. I was still dieting and controlling what I ate when I met my husband.
Stupidly I asked a neurologist ‘do you have anything that would mean I didnt have to watch my weight so carefully’
Epilim seems to have a dose dependent effect that you look at food and gain weight. For years in my home town my arse of a GP told me I needed to diet and exercise more - so I did, fecking hell I did. And that twat increased the dose every time I had a seizure without bothering to ask why or where I had it.
Being given Topamax was like being handed the holy grail. It was rubbish as a monotherapy, but god I got skinny. Until I got too skinny. My husband possibly made me see sense there. Unlike you, my GP where I live now was sympathetic and gave me vile drinks to put weight on. They didn’t work but changing Keppra as the adjunct to Epilim did.

Sorry for disappearing act, just got home from unexpected hospital visit yesterday, I'm sure you all know the drill! <sigh> The discussion of migraines and triggers/meds are interesting as one of my DDs suffers badly with these and has had the same problems with finding the right combo, sadly still struggling.

Apologies that the seizure in the cauliflower cheese made me smile a little it's just so relatable. I think a lot of situations have a "smile and/or swear" reaction versus "sob and/or swear". I think I've spent this week both smiling and sobbing, sometimes simultaneously - but I know swearing is always involved! If it's any comfort, I once face planted into a pool of someone else's vomit in hospital of course, not in my house, just to be clear!

I'm also a miserable angry bitch when I come round, but to be fair I'm a miserable angry bitch most of the time, seizures or not! I like the dial up internet analogy (is that the right word?) I think my brain spends 90% of the time making that awful high pitched noise whilst very slowly trying to connect to something like teletext.

The weight/hunger and meds issue also resonates, I'm sorry people have struggled so much with it. My issues have been so minor compared to others here but it is such an important factor in quality it life isn't it. I have just titrated off lamotrigine (fucking long and slow process) I came off it as I'm titrating up on a non compatible drug, oh yes and also it wasn't fucking working anyway Lamotrigine made me want to eat everything in sight. Literally everything. I swear I considered eating one of my cats at some point when no one was at home to get me any food! I struggled with it as I have very limited mobility due to other condition, and really don't want to put extra weight on my joints for the same reason. There is a discussion currently underway about steroids which I'm reluctant to have (am also terribly vain and shallow and want to be able to keep fitting into my current wardrobe of adored clothes even I'm just wearing them lying in bed ) so I'm really fucking fed up about that. I have experienced them before and really really don't want to get the "roid rage" as I'm already such a miserable angry bitch!

I am fucking SICK of even just the word medication. See also: titration, reasonable expectations, quality of life, watchful waiting, etc etc. This week also seems to have consisted of LOTS of "patient has received appropriate safety netting advice" which seems to be the current trendy phrase. People please feel free to add any other fucking words/phrases you are currently fucking sick of!

I don't mean to sound unkind about medical professionals themselves, I actually think the overwhelming majority do an absolutely amazing job, as do the support staff like the receptionist who I saw being spat at this week and the cleaners and porters etc. I actually had exemplary care this week from every single person involved. And such kindness. Truly amazing. I may be venting on here but I'm never ever rude to staff in real life. Apart from things like calling people interfering cunts when I'm not aware of anything I'm doing or saying in immediate post ictal period! And god knows I feel guilty afterwards. I sometimes imagine seeing an AIBU thread about someone's 6yr old DC hearing an awful woman repeatedly shouting "fuck off you knobhead" in their local shopping centre "AIBU to think if you can't control yourself you shouldn't go to an environment where small children may be present?" kind of thing...

By the way, does anyone else find their actual sense of taste (and smell) is affected by certain AEDs? Sometimes I think I'm going mad...

I think I might change my username to MiserableAngryBitch (although a clever MNer probably already has it!) That really was a long self pitying rant, I'm fed up because I've missed some important stuff this week and have something to do next week which is really really really important to me. I'm also feeling really guilty about the effects on my DC and DH atm. I know a lot of you know what that's like.

@Epilepsy We are moving house and every house we have looked at I have looked at with the viewpoint ‘what would it be like to have a seizure in a house like this?’
The one we have an offer accepted on is a bungalow (no stairs to fall down if you have a seizure at the top…) and the oven is eye level (can’t fall into it and burn your head if it is pre-heated) to name a few benefits.
Stressful as hell, and I’m reducing one of my drugs and the chemist doesn’t have the one I’m increasing in yet😬
Yep, the drugs affect your sense of taste and smell. I loved cooking. Then when I was on topamax and levetiracetam my appetite went completely. When I did cook I seasoned food completely wrongly and I had to ask my husband to taste things.
My sense of smell has always been pretty awful unless the smell is something nasty - lucky me!
Lamotrigine is making me feel 🤮, but lowering the topamax is giving me my appetite back gradually.
I think MiserableAngryBitch may be taken and you may have to put a very high number after it to make it yours.
I totally get what you mean about clothes.
Other people have a Winter wardrobe and a Summer wardrobe, I have amassed an Epilim wardrobe (floaty stuff that I like that hides anything the drug throws at me), a Topamax wardrobe (all the stuff I bought when I was model thin, that I will never fit again but cannot bear to throw out….just in case) and a Lamotrigine wardrobe (normal sized clothes). My husband says I have far too many clothes…hah! I have been on far too many prescription drugs.

Speaking as someone who was a small child who had seizures, yes there were several times I thought it was bloody unreasonable to let me out in an environment where there were dumb adults present. At school and in my childhood I had a lot of seizures in toilets or falling down stairs - hiding or running away. As a 14 yr old sneaking into a disco for over 18s a friend had to climb over the toilet door to rescue me when she saw my feet sticking out from underneath.
To repay the debt I tended to stay sober and hold hair when friends had drunk too much vodka and blackcurrant 🤢
In neurology it really is the neurologists I moan about. Although I found out that the ‘I will get in touch with your neurologist’ when my titration was going wrong never happened, neither did getting in touch with my plan to sort the mess.

I want it fixed before we move as I couldn’t bare the hassle of telling another GP and pharmacy that I don’t want to see how many generic topirimate versions make me seize, I want the branded drug, like I had before. Feck of a job I had last time I moved.

I have to say none of the drugs have ever made me feel like eating one of our cats😂

Still laughing about that.

"We are moving house and every house we have looked at I have looked at with the viewpoint ‘what would it be like to have a seizure in a house like this?’"

That sounds so Lloyd Grossman Bungalow sounds so ideal, are you able to "delegate" any of the process to DH (like chasing solicitors, and then chasing them again etc ) as I know how stressful it can be. One of the worst aspects for me is I know stress is a trigger and yet I'm the "totally unable to delegate control freak, and even I do delegate I will still try and micro manage" type. Something very long term like a lovely house, is so worth it for you in the end though! It's just a shame the process is so stressful (assuming you are buying in England of course).

I must confess I rarely do any cooking these days (used to love it, and baking, especially when the DC were little). Even if there are other people at home I rarely have the energy. DH usually cooks, and I don't really eat properly at the moment (at least the cats are safe!) I have so many lovely cake tins etc just sitting there. It's sad really. I know I am very fortunate not to have a childhood with seizures as I can only imagine how difficult that must have been for you and others. Developing it as an adult has given me those years "free" (fuck me I am wording this so terribly!sorry) but means I really struggled to adjust to the different life pre and post epilepsy and the other conditions. I took so so much stuff for granted! I literally didn't know how lucky I was. Being able to run (my favourite thing ever). Just put trainers on, get key and phone and go. Now I can't even walk properly. Moan moan moan. Sorry.

Oh chemists and wait for medications, and no more being able to stick to one manufacturer post Brexit, is very much on my mind so I sympathise. I really do agree switching to generics or different brands has caused an uptick in seizures. My GP said it's not so much the active ingredient as that will be the same of course, but it's the "fillers" like binders that have different effects on patients as to how they process the drug etc. You would probably know a lot about this with your degree? Interested to hear your thoughts? Apologies if we have already discussed this, my mind is so slow atm.

DH actually said today he feels perhaps I should speak to neurology as he feels I'm acting a little like I was on Cenobamate (medical term for that - totally fucked up ) It's very unusual for him to raise a concern as of course he knows I struggle but knows I discuss things with him and am usually competent to decide whether I can cope with side effects. For him to raise it must mean he thinks I'm not aware of the whole picture eg he said my speech is a bit slurred. And he's right, I didn't know that! I do know atm my mind is a (medical term alert!) little bit fucked up, as I'm sleeping 14 hrs a night and sleepy all day still. my thoughts feel slow. I started typing this at 11.45 - just realising that now has made think wtf. I must be probably 8/10 on the fucked up scale! We are meant to see adult DC who doesn't live at home this week and I've been so looking forward to it. I'm so frustrated I'll be like this.

I'm going to speak to neuro as this is my penultimate option but I'm going to start titrating down immediately. I'm angry on your behalf that your neuro isn't good enough! I'm under the care of a neuro hospital which isn't my local hospital but it's a specialist centre of excellence (or something) so worth the travel, although most is done by phone and F2F is only twice a year or so hopefully. If you want to PM me I can give you details. They have a team staffed by specialist epilepsy nurses etc which have a helpline so you can leave a message with any concerns and they usually contact you back within 24 hours, they will also ask consultant about your case if needed and arrange direct appt or just get their opinion/act as liaison. If that makes sense? I'll stop in a min as I can feel I am winding down like an old record player! They are amazing, I genuinely have no complaints (other than it's a bit far for visits if I'm an inpatient but I am not fussed about visitors, hate anyone to feel obliged etc so this is a good thing really. The care is wonderful. You always know there is someone at the end of the phone. Imagine if you were moving near enough to thr area, it would be like a MN happy story sort of thing!

Yep just realising DH is right, esp as I took painkillers at 1. I'm going to go sleep but first I'm going to see if I wanna be sedated is free as a MN user name Actually I may have already got it myself. Punk AND sedation - my favourite things! Although balance has tipped too far to the sedation side atm. I'm sleepier than my cats and that's saying something. God it's so just so fucking hard to get right isn't it?!

I’m in Scotland and last time we bought a house I left it to my husband, basically because I had never done anything like it before and I was training for a job that was totally new.
I too am a hideous control freak now. I think it may have something to do with needing to control parts of my life when my epilepsy can cause chaos.
My husband said he didn’t expect much of me because I get so tired, regarding the move. I get tired because I tend to sleep badly. This isn’t helped by my constant tinnitus and his snoring or the dog wanting out at 4am and my husband’s hearing loss meaning he never hears it.

I just received a letter from my neurologist. I really feel like going through it correcting the errors and omissions. It is clearly an outline warning any future neurologist ‘bloody difficult patient’.

I went to university as a mature student and had amazing medical care their as they are right next to a teaching hospital and renowned for producing doctors. The careers events trawl the biomedical degrees looking for potential degree entrants. I was approached. I declined. The very idea of a surgery rotation and myoclonic seizures. Or even simply surgery! I buy pre chopped veg and stuff because I have no desire to impale family members.

Currently frantically googling because my paranoid brain is convinced the flea bites I have from uprooting every grotty piece of carpet that has been under heavy furniture for ten years are the early lamotrigine rash. Rational brain says don’t be bloody stupid.

Regards your drugs, has your GP marked your prescription with the drug that suits you best? That way no other drug can be dispensed to you.
If a branded drug suits get them to name it not the generic, usually the active ingredient. If a generic made by a specific company suits get them to state the company. I had ‘Topamax UK brand only’ as I had myoclonic seizures with parallel imports.

Doing all the inconsequential phoning stuff today that isn’t important grunt work 🙄 because I’m delicate….not like a flower …like a bomb.
I saw that on a T-shirt and I so want it

Take care

Oh thankfully Scotland has a better legal process for house sales than England, although of course it's stressful moving house wherever you are!

Can you "train" your dog to wake your husband by jumping specifically on him to physically wake him? I'm sorry I'm a cat person and don't really know how dogs work Tinnitus is an absolute fucker so I sympathise there. It's also one of those things every single person has a "cure suggestion" for, so I won't even try

Did you sort your rash? I did mean to reply earlier, sorry, but I'm sure you can understand how things go spectacularly tits up... A rash wasn't one of the lamot symptoms I had, the worst was the total greed for absolutely anything to eat 24/7. My neuro/GP have tried to name branded meds on scripts (in fact I think my Lamotrigine was called Lamictal?) but some brands were just simply never available at any chemists, even Boots couldn't locate a specific brand once in any of their stores to have it delivered! When Brexit happened my GP even started issuing two month scripts to give plenty of time to locate subsequent branded meds, but it still didn't work. So it was just a choice similar to "zero availability of Hellmans brand mayo - so take whatever brand mayo is available, or none?". With mayo, I'd pick none at all but medication is different! Although seeing as the medications aren't working anyway, I'm still feeling tempted by the throwing out of the window option...

Like the flower quote, it reminded me of the Flowerbomb perfume! I used to love that but like everything else, it smells different to me these days So annoying, although one DD is thrilled she has been gifted an extensive perfume collection...

Good luck with your move, please do sleep/rest as much as you can whenever you can! The concept of a "bedtime" and continuous hours of sleep overnight feels so alien to me these days. My neuro team don't ask about sleep anymore, they ask about "rest" which seems a better way of thinking about it. Having a "rest" in the day also feels different in my mind than having a "nap" - as though I'm less lazy or something? Yep, brains are odd and I don't even think that bit is epilepsy related, just odd thinking!

Sorry for the late reply. I had to laughed about your comment regarding ‘rest’. I am regularly staring at the alarm clock at 4am thinking of all the things I should be doing for this bloody house purchase/sale. I feel like I have painted every room in our current house (except the absolute top of the walls and the ceilings, because I point blank refuse to work on a stepladder when I’m fecking about with meds).
Last night my husband let our dog out. I have told him countless times to be careful with the doors. Our mutt is a rescue and going into his dog problems would make this a very long thread, suffice to say I think he wonders when he will be dumped in a moving box and labelled.
I was outside stopping traffic when our dog spotted a cyclist and started lunging at the bike wheels. I’m desperately waving a ball, calling our dog and cursing my husband.
This week of the drug change is not going well. I told my husband I was trying for a quiet week but all I’m getting is well, excessive amounts of crap.
After the titration went pear shaped and I put together my own version the agreement that we would go with mine was that when I reached 100mg Topamax bd, I would slow things down. I haven’t. I have kept up weekly changes because I don’t want to explain the whole damn situation, including my intolerance to generic topirimate to whatever new doctors I have at the GPs.
Explaining that I am on Epilim and Lamictal is far easier and they are easier drugs to get.
Cant even hire a dog walker as my collie boy doesn’t get on well with a lot of other dogs.
We have just had the photographer and surveyor in and after all the cleaning (hiding shit) and painting (covering up colours I thought were really cool, ten years ago)and ‘please can you get your dog out of the way for forty minutes’ (two extra walks), yeah, a rest was what I really wanted.
But after staring at the bloody wall from 4am onwards, I just want sleep, bugger rest. My husband is doing his ‘never get a collie’ (he isn’t, he is collie crossed with bloody stupid, but I Love him), well he had a bunch of walks yesterday and an escape. When he got out a neighbour tried to grab him and shouted (knowing I walk him) ‘has he had a walk today?’
Honestly. Yeah! In between calling the solicitor, painting the house, hiding shit, looking half human for the surveyor and photographer, cooking a ‘bland’ tea and stuffing 12 anti convulsants down my throat, I didn’t neglect my dog.
Poor little shit is just going to get his dog toys and training today because I feel absolutely knackered and I’m going to get ‘we should never have got a collie’ about my doggles.
I truly hope things are going much better for you.
Hey ho next week is Topamax down to 50mg bd

That all sounds a bit of a nightmare (understatement!) @FortunateCatsGlugDaquirisAllEveningBlindly! I know nothing about dogs, but he actually sounds quite similar to one of my cats, who was a rescue (definitely with trauma issues) and is needy as fuck, causes some sort of problem every day, but gets away with it as she is so endearing Such hard work (although nowhere near as physically hard as dogs and walks obviously) and takes up so much brain space worrying about - and we don't have much brain space to spare! Can you get "specialist" dog walkers for dogs like your collie? Who just take one dog at a time and are experienced in dogs with similar behaviour? I'm dreading potential "pet sitting" scenarios when DC can no longer do it, but my vet mentioned there are specialist ones who work with cats like mine. (I've also had to stop traffic to rescue her, she is just so fucking dim sometimes!) Maybe your vet may have a recommendation? Do you have any friends or family to look after him while you actually move?

How is the house sale going? I really hope you've not been standing on step ladders!

And how is the titration - Have you noticed a difference yet?

I think my consultant here has also reached the let's throw the meds out of the window stage with me, as we are now "considering other options". Which involves 8 million assessments including another inpatient VT stay. I've been outing enough already so may as well say I am a mature student. This may be final nail in the coffin, last year was a bloody nightmare and I managed to pass, but with less than 15% attendance. I don't know whether to try and keep going - it's so stressful, but I am stubborn as fuck, and it may be best to keep going whilst I can. The operation will eventually mean I have to defer a year (they'll keep my place for me) and may actually mean the end of studying if it doesn't go well, so I'm thinking make hay while sun shines. Then again, I spent last academic year crying at least twice a week with frustration/pain/stress etc! I also need to get my DSA application in as my mobility is also worse than it was. Ugh.

Wouldn't it just be lovely to have ONE day, just one day without a worry? Bloody pets and houses and uni and bloody medication!

I think I am basically a professional student now. Interspaced with working from home or working and studying 😂
I wasn’t studying online when I did pharmacology and my first DSA application, almost put me off ever applying again.
My doctor wrote some daft letter which just said when I was diagnosed and what with, no reference to study, and SAAS dismissed it, I had to get an epilepsy nurse that I only ever saw once to write it.
Then my assessment 🙄The nurse said her husband had epilepsy and not to worry she understood the condition. My review came back completely unlike my epilepsy but I would bet it was a fair assessment of her husband’s condition. I had to have it done again. That uni suggested I take a year out. My second year was dire, I had two resits in summer and had to carry a module on. I don’t know if things are different in Scotland, but it was SAAS that told me I would have to reapply and my place wouldn’t be kept.
Im pretty determined. I think if you have epilepsy you are told the word ‘can’t’ so often it starts to piss you off.
Online is far easier I don’t know how you manage to turn up for classes, my attendance was pretty dreadful.
Last night I had a nice meal planned for my husband as we have been working our socks off over the house and it’s just one fecking stress after another. That day we found out we had the bridging loan but our estate agent listed our house as 1 bedroom because the stairs are slightly steeper than regulations. We are gutted.
I was preparing the meal and started to feel shit. Sat down and my poor husband had to make the meal I planned for him. Thankfully no seizure, but it was the first time I felt that close to one for a long time and especially during that titration.
Today is reduction day. I reduced the topamax by less than I was going to and here I am lying down because I feel shit again.
Bonus!! My tinnitus has improved hugely!!
Our current vet is a waste of space. They called about our mutts anxiety meds and basically implied that I misunderstood the medication instructions and this was why it didn’t help.
It was all I could do to stay polite and not tell them that I have been following medication instructions my entire life, of course I was going to pay attention to my DDog’s meds. Family are at the wrong end of the country and friends have met him😂
Sorry he isn’t that bad.
What are you studying?

I am studying history, it's really really hard but I have always loved history and have devoted my non working/DC life to it The level of academic skills required in "degree level studying" have been a massive eye opener though, luckily due to my previous employment I have some legal skills which have come in handy as I'm used to skimming very long boring contracts to find and locate/summarise the important bits and used to judging the reliability of sources. It's still incredibly hard, esp as my epilepsy has affected stuff like word finding/language/spag as well as the huge memory issues. Something that would take a "normal" student (that sounds terrible sorry) half an hour to complete genuinely would take me 2.5 hours. My attendance on campus last year was 10% but as they were so accommodating and supportive I actually managed to pass the year!

I'm really worried about this year though as I know I need to increase attendance and step up my work academically, I found last year incredibly hard work and stressful. Plus there is the small matter of brain surgery... in fact I need to decide by this weekend but I'm leaning towards keeping on. Like you say, we are told "can't" (may I add "shouldn't" and "not advisable to that ) so many times it makes you think "well, fuck it".) Aside from epilepsy, all my life I have always been stubborn as fuck, which is not necessarily a good thing...fixations and obsessions etc. so I don't know if being quite so determined is a good thing here My new med means I am sleeping 14 hours (literally) out of 24 and zonked the rest, I've been in the house basically all summer and can't imagine being able to function at uni.

Your experience of DSA sounds exactly the same as a family member (I know I've outed myself here, but I don't want to out them with their details here) but it was shockingly bad. They even made ATOS/PIP look efficient and reasonable which is quite a feat! This was a very straightforward physical disability which just needed really obvious adaptations/specialist equipment. Luckily family member is also stubborn as fuck and will never ever ever be told "you can't". Well she can and she did and is about to get a 1st! So fuck you DSA It did mean we had to fund a lot as DSA simply wouldn't cough up despite the long fight, so my rainy day money is gone which means I have to rely on DSA for myself, and no surprise they're still dicking around <sigh>

God I really feel for you re stairs and building regulations, how's it going now? An excellent agent and a really good floor plan/description can mitigate it on marketing but if you're at bridging loan stage that sounds positive anyway and like you're past that point? Is it causing problems with buyer/valuation etc?

I'm sorry you've felt dodgy on reduction but getting rid of tinnitus is a massive bonus and hopefully the "general shitness" feeling will pass, and it will well be worth it to get rid of that! I'll go out on a limb and guess the stress of moving house won't be helping...doesn't it always feel it's just one thing after another!

Well, one day at a time, and all that cliché malarkey (I draw the line at "this too shall pass" )

Have you met with the neurosurgeon? The neurosurgeon may have a much better view than the neurologist.

Apolos for crashing... firstly I'm male (and live in the UK). Second, I've got epilepsy (result of a brain infection mid thirties). I'm writing a book on my experiences. While my epilepsy hasn't been as apparently severe as some of you folks (you could walk past me down the street, and think I was just an average Joe) - behind the scenes the impacting has been utterly devastating. I'd like to quote this thread as an epilogue in my book (obviously removing all user names etc). Any objections?

Why would having epilepsy mean you didn't look like an 'average Joe?'

I may not speak for everyone but my feeling is that this isn't really the way to research a factual book that includes people's personal feelings and experiences about their illness without prior permission. People are speaking openly here. Their experiences may be unusual or identifying even without names and you wouldn't know. It doesn't feel particularly ethical just to post after reading saying 'any objections?'. I think you should either do your own research or only go with positive responses

Hello,

It's not intended to be a factual book. It's just a book about experiences (i.e. mine), how epilepsy is generally not understood - and how it can be a real kicker (esp. for those of us who have it refractory). And yes, I do know. Very much so. I just wanted to wrap up with some comments from others, just so any readers maybe can understand the significance of it. I don't want to know people's names, and I'm not asking for anything that hasn't already been posted on an open forum. It was just a means at the end of a read to help the reader understand how devestating/life changing it can be, and most importantly, that it's not the same for everyone. I was just asking to effectively copy over comments from a forum into my final chapter. It was just a polite request. Forget I asked.

I hear you.
Not epilepsy but I have Myasthenia. I was so thrilled when I got my diagnosis..but both treatments I have tried so far have made me far more unwell qnd given me a worse quality of life.

I''ve finally had agreement from my neurologist to wean off the meds but they took some convincing.

But at the end of the day it is our body and only we can know which is more bearable.

Ugh. Just seen this is an old thread. No please don't quote me in any book. Do your own proper research

That is factual. As in not fiction.

People have written on here, on an open forum yes, but not with overt permission for it to be published in a book. Yes, it is a risk you take writing openly, that it may be shared. However it would be quite exploitative, and I think unethical (plus of quite limited value as you have no idea who is actually posting and the veracity of their experiences) mining a forum of people's experiences of their health condition, to use in your book.

These types of threads are very useful sources of support. Chronic health conditions can be isolating. Don't make them feel worrisome to use. I myself have rather unusual health and work circs (not all mentioned on this thread). I am quite careful not to be too identifiable but would hate to have a quote published somewhere more permanent than an obscure online thread that could identify me and include details of something very personal without permission.

I understand why you are asking but you have asked in completely the wrong way. As I say, others may disagree and be happy for their posts to appear, but please have the decency to only use those who have given explicit permission.

Sorry I have been off MN for a while so just seen this!

@DigestiveBiscuit1 I appreciate asking for permission on using people's quotes, on what is after all a public forum as you point out. However upthread I see I did mention putting it into 30 days, knowing it was about people's very private health struggles and circumstances can be outing. I decided not to ask MNHQ to move it in the end as it seemed to be a support for people. However I wouldn't want my own writing/posts about my health and personal struggles to be lifted to be the epilogue to someone's else's book. Re this thread, legally there is nothing to stop you copying and using peoples posts, but I'd consider the morality of doing so. If you start your own specific thread asking for people to contribute their experiences should they wish to, it would maybe be useful to you? I myself would contribute to that, albeit with less identifying information, and I'm sure some others would too.

In the hope that you will respect posters wishes, I'll keep posting here, just to answer recent posts, and as the thread has been bumped I've had a number of private thanks messages, so would like it to stay.

@CurlsnSunshinetime4tea my neurologist is actually the neurosurgeon as I'm under a specialist hospital. They do now want to proceed with surgery if possible as my epilepsy has remained drug resistant. So I'm undergoing the assessments but it has been derailed somewhat as I've just had a possible cancer diagnosis and need an operation for that which is already booked. I also need orthopaedic surgery (thanks to epilepsy!) but that's the bottom of the surgery priority pile! I've also just been floored with a very nasty bout of Covid (I had to test for anti virals plus hospital appointments) and atm I'm praying that won't delay my cancer op. I also feel really unwell with it. Anecdata says it seems to be doing the rounds.

@CassandraWebb I understand. I think we have to look at medication/treatments in light of our mental health as well as physical health as they are equally important, and poor mental health is detrimental to our physical health. I don't know much about myasthenia, are there multiple treatment possibilities eg surgery as well as medication route?

I'm definitely looking more into the mental health side of things at the moment. Obviously it can't "cure" things like cancer/epilepsy/other physical conditions, but I feel like my previous state of being angry (and very sweary!) was actually healthier for me, than the way I feel at the moment. I just feel totally overwhelmed and blindsided by recent events. I thought at the beginning of this thread "fuck it I can't cope", and now I think "yeah actually, I really cannot cope"! just four months later. The uncertainty, the worry for my DC/DH, the financial implications, the multiple surgeries and treatments...ugh.

On the positive side, I haven't eaten any of my cats I'm also trying to look forward to Christmas and seeing my DCs at various points which will be lovely.

I hope previous posters on the thread are doing OK, that your house sale worked out @FortunateCatsGlugDaquirisAllEveningBlindly and @Mistymountain I know we have been in contact but hopefully you are recovering and perhaps back on MN. I won't do a big long namecheck list but love to all others too!

Oh and I did actually try and start the new uni year but have finally had to admit defeat and throw in the towel. We are calling it a suspension rather than a withdrawal so I can have the hope of being able to restart within the next few years. This was a very very hard decision but I know deep down it was the correct one, as I didn't really have a choice in the end. I'm doing some free online ones at the moment which are good as some are really short, don't require much brain power but I can tell myself I'm still studying.

It's really hard but don't give up long term even if now is not the right time. I don't want to go into details following the above poster but have similar experience so know how hard it can be but would say keep in touch with the uni (do you have a named contact?) and see how things go. A good friend has just finished her degree following a serious neuro issue. She started about 10 years ago and finished with the OU in the end.

Don’t quote my posts. They were never intended for use in any book.
You mentioned that this is a book about your experiences and that whilst you appear like ‘the average Joe’ the impact of your epilepsy has been devastating.
The aim of your book appears to be to enlighten and educate others as to the impact of epilepsy.
Good luck with that. 🙄
Forgive my cynicism but having been heavily involved with a forum and voluntary work relating to information regarding epilepsy, for people with the condition and others, for quite a number of years, you are chipping away at a granite lump of stigma with a tooth pick.

If you want a good epilogue, as others have said, do your own research, get over to the Epilepsy Society, Epilepsy Action, Epilepsy Scotland, Mathew’s Friends, forum4epilepsy, specialist sites and use the statistics or/and ask if they can find anyone who is willing to relate experiences to you that you can use. That’s what I did when I worked in radio 25 years ago and made a feature to promote greater understanding of the condition and it’s impact and issues.

Don’t simply roll up and ask to use a thread that was never intended for publication in a book. Many of us have mentioned certain things that might identify us (freak coincidences do happen..) and we would much prefer to go through life as ‘average Jills’ brushing off and finding coping strategies for drug side effects like fatigue etc. until our cover is blown and we are symptomatic. Minimising the impact and potential devastation that even announcing ‘I have epilepsy’ can have.
Society has stopped burning us in actuality but they still do it metaphorically.
No one here wrote anything with the thoughts that this would be useful in a book, we wrote to and for each other.

@Epilepsy keep going with your studies. Studying for me wasn’t exactly a straightforward path. 😂I started with OU modules, which were curtailed by Keppra hell and plodded on to psychology with Topamax monotherapy hell. Roughly it took me ten years if I count the studies that got me into the damn degree course.
You can do it.
Our old house hasn’t sold yet. My husband is going down to paint and spruce up further, before we ask for new photos and the upstairs bathroom to actually exist in their blurb even if they deny there can be bedrooms because of the stairs, it’s hard to miss a bunch of plumbing!
Worried sick about my new job where instead of relief hours, the relief staff (like me) seem to cover most of the hours and the transport to the place for a non driver is utterly pants.

My son is currently on your cocktail, well carbamazepine which I think is pretty similar. It took a good 6-8 weeks for him to get used to carbamazepine initially and again after each increase. He’s on the maximum dose now and functions entirely normally, running 5k most days after school. And he’s been seizure free for a year - he has nocturnal tonic clinics too. So I’d say stick with it, the crushing tiredness will wane.

@MyNameIsErinQuin I'm pleased it's worked for your DS, and running 5k after school sounds wonderful. I ended up reducing the eslicarbazepine to try and find a balance. It's tolerable but not effective.

@FortunateCatsGlugDaquirisAllEveningBlindly that was a much better and articulate response to "will you be a footnote in my book" - very impressed! I really wanted to just say fuck off Sorry you have work woes, a lot of employers generally seem to be exploiting staff as much as possible atm, and useless public transport doesn't help. It's very frustrating being reliant on something unreliable. Re the house, can the agent use clear terminology like "currently utilised as a bedroom" and just be upfront re building regs. IME, as long as there is a clear floor plan and good photos showing how it's being used, buyers will use their common sense and use it the way you do, the only issue is it being valued for mortgage purposes etc of course. Fingers crossed for you!

I won't bore the thread with yet more of my own moans (tempting though it is). It probably wouldn't even sound believable as it's almost laughable just how shit things have got. After a brief reprieve earlier this week where we actually got some good news and I spent two days feeling actual happiness, now it's turned into almost a comedy farce. I thought we had hit rock bottom and was heading back up but nope. Now I'm literally overwhelmed with medical stuff that's all going wrong and the fucking epilepsy and seizures are affecting every single issue. There is just so much to sort out, so many different departments and I've missed critical appointments which really were a priority. I know now I won't be back at uni next academic year as even the brain surgery has been pushed back behind other stuff. I'm worried about my family and I'm really worried about all the stress on DH. I would give anything to have just one day where it's wiped from our minds completely.