AIBU to think epilepsy is a knob and can just fuck off?

[Epilepsy]

After a few years of being relatively stable, my epilepsy has gone haywire recently. I can’t identify any especial triggers other than being late 40s and my cycles have become more irregular this year so I think that’s probably the culprit. Anyone else in a similar boat or would just like to vent?

I am relatively fortunate in that I only have nocturnal epilepsy so am allowed a driving licence and don’t have the of risk of drop injuries etc but the last few months (and especially the last few weeks) have been really hard. I have had so many plans I have had to reschedule or cancel completely in recent weeks - including having to cancel seeing an adult DD living away from home which was really disappointing for both of us, letting other DC down (again) on commitments we made, missing medical appointments, missing a weekend away, missing a tattoo appointment etc etc. My DC still at home and my DH are worried about me and I’m worried about them worrying about me! I absolutely hate feeling like a burden and I hate hate hate being reliant on others.

I am also sick of injuries, on top of other stuff, this week I have pulled my hamstring and fuck me, it hurts and I’m so frustrated to be laid up again. I’ve also bitten my mouth badly and it really hurt to eat the whole 125gm bag of peanut M and Ms I have just finished despite it hurting I currently take Lamotrigine, Keppra (which is why M and Ms are like crack to me) and Clobazam has just been added, I think this dose can be upped and my care team are really really good, but I am so fucking fed up with the uncertainty and worry and physical pain and constant constant disappointment and unreliability and the effect on my family not just me. (I’m also really hot right now and desperate for a shower but I can’t which isn’t helping)

So AIBU to think epilepsy is an twat and can fuck off, and would anyone else in similar circumstances like to have a vent?

I did keto for diet, not for seizures, and did really well on it. I was seizure free with no meds but I may have been anyway, who can tell. I don’t know if anyone has tried but it is meant to be good for epilepsy. It’s great for sugar cravings as it cuts it completely.

Completely agree, DS has epilepsy - he's 11 and went nearly 2 years without seizures when younger but now has them every couple of months including yesterday morning. ALWAYS first thing in the morning and every time we think we've increased the meds enough he has another one and hasn't grown enough to have a higher dose. He's on Keppra.

I’ve learnt something tonight. Two of my adult children are on Keppra. One is adopted - they aren’t birth siblings.

One, on the maximum dose, has really strong cravings for sweet stuff, and huge anger issues.

The other, on a lower dose, gets really anxious.

It hadn’t occurred to me that their medication might affect mood/appetite etc. 🤦‍♀️

My mum had night epilepsy and yes it went haywire before BUT it also fucked off completely after menopause (fingers crossed for you).

I have epilepsy and I hate it.
I hate the way it ruins my life and dictates.

Up until four years ago I had been seizure free for almost 14 years and then BAM - I had a tonic clonic seizure and everything has gone downhill since.

Im at a very low point in my life and I cry most days.

I also take Lamotrigine and Keppra.

I had my first fit in 7 years in October (two actually) - I was livid.

It can, entirely, FUCK OFF.

Keppra made me hallucinate and go entirely batshit, so m&ms would have been a welcome side effect! 😂 topamax and tegratol keep me in check (mostly) but topamax supply issues has had me raging, am on sprinkle capsules now and they're a prick to swallow.

All in all, it's a prize wanker.

@Epilepsy I'll have to mention that to the neurologist when I next see him.
I'm actually eating a mini roll in the bath at the moment. It would have been more than one but I had the rest of the box earlier 😁

I'm actually eating a mini roll in the bath at the moment.

Ha! And this comment perfectly highlights why people with epilepsy are the best people!

I have a shitty medication induced neurological involuntary movement disorder called tardive dyskinesia, that I absolutely despise. It has totally ruined my life over the last 8 years and I hate the doctor who gave me the off label antipsychotic for severe anxiety and insomnia that caused it.

You have my total sympathy, OP. Neurological conditions are the crappiest things and the fact they chronic adds to the pain of them.

I had a head injury and post concussion syndrome before the antipsychotic drug was prescribed during a breakdown, so it wasn't easy.

I hope you can get some rest and respite, OP. A good, understanding neurologist makes such a difference, too. Sending hugs 💫

@Epilepsy Message me hun if you ever want to talk, I'm epileptic too and I'm supposed to be clobazam amongst 2 other medications but don't take any and haven't for well over a year as they don't control my seizures at all and doctors just up the dosage till its maxed out then add another one. I'm currently out of options for medication 🙄

After just spending the evening in A&E with my DB who goes into status after every seizure I totally concur with you epilepsy is a grade A knob.

I am very lucky in that I had absence seizures as a child and simply grew out of them. My god, was I bullied though. This was in the early 80s when names like spz and mng were often thrown about the playground. So yes epilepsy, you can fuck off, eat shit and go suck a bag of dicks. Oh, and I hope your next shit is a pineapple.

Yes it can fuck right off. My eldest has it, it is a pain in the arse and the side effects from his medication caused memory issues so now he doesn’t have great GCSE grades. He has worked hard since and it hoping to go to university but the amount of worry I have for him living away from our support is huge.

up yours epilepsy you bastard!

to all those struggling, it is really shit. So many of us, apologies I am not replying individually. It must be hugely hugely stressful looking after DC with epilepsy too.

There seems to so many medication options and it feels a bit like a pick and mix sometimes (always back to the sweets! Bath sounds an ideal place for mini rolls as the chocolate would melt into fingers here in bed!) Oh the fucking side effects too It's also hard to tell what side effects are meds and what is just the epilepsy. My short term memory is extremely bad at the moment, previously it's been put down to inter ictal activity but I think the Clobazam isn't helping. I definitely think the Keppra is the culprit for sweet cravings, but as meds are added on top of others, and none taken away (if that makes sense) it's hard to narrow down.

I hope your DB is ok @Bluemat, that's terrifying. How is he? "Vigilance" is the word I was chasing around my brain yesterday ( I have "tip of the tongue" feeling 24/7, I bet posters here can identify!) as I can see my adult DC and DH are worried about me and check on me a lot (this bit is really identifying so I may get it taken down in a while) ironically one of my DC is a student nurse so it's strange to come round to someone who sounds exactly like a nurse "can you open your eyes for me?" style but looks who like DD! I can be aggressive afterwards (anyone else?) and told her to fuck off the other day

I really feel bad for DC and DH. DH looks very stressed but trying to hide it. I was half asleep when he came home from work before and I could sense him watching me for a while (and could feel him holding my hand ) It must be really hard for him with the constant worry (plus I can't walk unaided so really dependent atm). I wish I could go away for a few days and give him a break but obviously can't go away independently atm. So fucking frustrating.

If it's any comfort, another of my DD has SN and I was so worried about college/university but was surprised how well they did and how much they "grew up" in such a short time, plus how much support there was for them.

Ironically, I'm meant to be starting a degree this year myself, i applied ages ago before things got worse, and I'm really worried I won't be able to do it. The disability support team are involved but I think my memory and unreliability may mean I have to defer.

My husband is struggling to cope as my seizures were long controlled before I met him, and then 7 years on he was thrown into this shit show. Dealing with seizures, medication, hospital admissions, the impact it’s all having on our life, my moods, my behaviour and personality….it’s a lot for him to take in.

Hes never actually seen me have a seizure so doesn’t really understand what actually happens before, during and immediately after so I don’t think he can fully understand or take it all in. All the shit that my epilepsy is causing has certainly taken its toll on our marriage at times.

Over the last 4 years I’ve had to take just under 18 months off work with sick leave because of my epilepsy and I’m now having to consider leaving my career behind because of the impact it’s having on my epilepsy.

I have two young children and thankfully they’ve never seen me have a seizure and I dread the day they will. I can’t imagine how terrified they are going to be and what may be the consequences if they are alone with me if I have one. Epilepsy is a really, horrible, horrible condition to live with and knowing that it will never go away just makes it even more unbearable and upsetting.

@Epilepsy he's ok thank heavens. Every seizure he has now results in Status Epilepticus. There can be many months in between the seizures but they've changed from Tonic Clonic to just never ending ones.

Have they been able to find a cause @Daug? I remember being really surprised when my neurologist told me that apart from ruling out the most obvious causes (eg brain tumour etc) they then just concentrate on treating.

@MyTruthIsOut he also said that research and development into the brain is advancing so quickly that in a couple of hundred years we will look back at current treatments and think of them as barbaric, (I like my consultant) BUT we will eventually find an properly effective one that does suppress seizures, so have hope I guess all we can ask for at the moment is to have hope that we can control them. The treatment of my DCs' condition and the technology etc developments over the last twenty years has been truly eye opening so that does give me some comfort (that, and I am actually eating apple pie in bed! It's not even 11am )

Sorry to hear it's taken a toll on your marriage. I feel very bad for my DH atm who seems to spend his time picking up my pieces and supporting me whilst keeping the plates spinning. I feel a lot of guilt about it. I think situations like these expose any "vulnerabilities" (for want of a better word) in a relationship.

Sorry @FluentlyExasperatedMadam I just saw your kind offer to PM. I too have been thinking recently, what's the point of taking the meds if they don't work anyway, it's just a risk of seizures v risk of side effects. My consultant said there are up to a dozen different options and they never give up, so I suppose ill keep trying. (If you want to PM me I can tell you more as I'm under a neuro centre of excellence which have been amazing and you can be referred to them if you can get there) With my age, i also don't know whether certain symptoms are due to seizures/ictal activity, or the meds, or hormones! God it's really fucking me off today though. It's the injuries and the limitations, my leg is so fucking painful <pity party alert, pease someone join in so I don't sound so bad > so I've had to cancel todays plans, yet again and they were really important to me, I am so so so fucked off and frustrated.

@Underminer if you want to PM me re any university/FE concerns or just to chat about it, feel free. It was a real learning curve for me, but I have DC at different unis/college and have been surprised at the amount of support (some unis have been amazing, government depts not so much, but no surprise there...)

I remember being really surprised when my neurologist told me that apart from ruling out the most obvious causes (eg brain tumour etc) they then just concentrate on treating.

That might be true now, but imo in the next few years, they will moving towards analysing the genes more, in the hope of tailoring the drugs to the genes? DD was put forward for genome testing - I can’t remember how many genes, implicated in epilepsy they looked at the first time; but they looked at 1,400 the second time. While they didn’t find anything like say Dravet syndrome, which would give a clue about treatment, we do know now why the triggers we had identified by experience, do cause the seizures.

Have you applied for disabled students allowance? It's equipment, exam recommendations and things like a note taker.

I had nocturnal epilepsy as a child. I also used to vomit with it. I've grown out of it thankfully. My dad and a cousin both have it. Dad's is well controlled but they're struggling to get my cousin's under control. (there is drug resistant epilepsy which a friend's daughter has)

I too have been thinking recently, what's the point of taking the meds if they don't work anyway, it's just a risk of seizures v risk of side effects.

I have heard this a million times from DD! All I can say is that I assume the risk of SUDEP is greater for people, taking no AEDs or a less than optimum regime; compared to people on the drugs, giving them the best control humanly possible? (For instance DD was having 350 seizures a week before polypharmacy, whereas now she has about 50 a week - I assume her chance of SUDEP is less now, even though her epilepsy is poorly controlled at the best of times?)

I don't know about other people, but DD has a severe epileptic encephalopathy - she suffers cognitive deterioration from time to time. I would take the side effects of the drugs any day, over the cognitive deterioration!

She used to have 6 drop attacks a day, and she told me she couldn't sleep at night, because of the pain from all the bruises. She has had two drop attacks so far this year. Drop attacks imo are the worst seizures, because the effects of the injuries can last for weeks/months. Rufinamide (on top of sodium valproate, lacosamide and clobazam) has really helped stop the drop attacks.

I’m exactly the same as you but daytime seizures, so I’m not allowed to drive on the same medication and I’m 41.

Such a burden needing lifters all the time.

Tremors all time, people think I’ve got Parkinson’s disease! Epilepsy can go and FUCK OFF, mine came from a brain tumour! x

Has the GP put you on progesterone only mini pill to stabilise your hormones? I’m similar age and my bastard epilepsy went doolay at the start of peri. The mini pill has helped so much.

what Do you mean when you say Tremors?

Over the last month I’ve been having strong jerking movements in my feet….sometimes it’s most one foot but other times it’s both and sometimes it’s just my toes. Sometimes I feel like my legs twitch too but very rarely. I feel like my feet/toe twitching it becoming more frequent and I am of course convincing myself that I’ve got Parkinson’s 😬