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?

Iirc, sodium valproate can cause aggression. It didn’t affect DD1 like that, but I think the consultant neurologist warned me, it could affect behaviour and appetite - although he said, people only gain weight if they increase their calories.

As for changing AEDs, while Keppra rage was awful to live with, others affect mood too. We found lamotrigine made DD either depressed or hyper. Clobazam makes her aggressive, tearful and depressed. Zonisamide had a dreadful effect on language. Lacosamide does nothing for seizures, but does act as a mood stabiliser. You pay your money and make your choice as to which side effects are tolerable? Keppra was the worst though, ime! We couldn’t live with it!

DD2 is on methylphenidate for ADD. As it wears off around tea time onwards, she is more emotionally volatile - ie likely to get into an argument! She did ask for a top up dose to take at tea time, for when she worked late shifts (due to getting stressy), but the psychiatrist refused!

PS - we have found DD is aggressive before, during and after seizures! She can be really happy, she has a seizure and when she come round, she is in a very bad mood!

@FluentlyExasperatedMadam that sounds awful! I hope you don't iron now? I don't iron anyway as I hate it, but DH has a garment steamer that he dotes on.

I can't help with the valproate question, apart from my neuro saying they try not to prescribe to girls/women of child bearing age as it's risky in pregnancy so they prefer not to use it then have to swap if they want to conceive.

I'm so exhausted today, as well as my napping yesterday, I've slept 10pm to 8.30am then 9-11.30 today and could nod off right now. What is everyone else like with fatigue after seizures? On top of the additional seizures the extra fatigue is awful, and the Clobazam isn't helping. I feel like I'm either staring at shit TV shows or sleeping, I'm not even reading.

Interestingly the weather has broken here so my cat came in at night yesterday, I woke from my earlier nap and she was on the duvet curled into the side of my chest/crook of my elbow. She never sleeps there, she's either on my feet or if she senses a seizure, she will come sit on my chest. (DH actually uses that as a warning sign she is so reliable) I'm wondering if there is any significance to her new position, I realise how stupid that sounds typing it, I'm so tired that I feel like I am a zombie or hallucinating or something!

Does anyone here have a proper Seizure Alert dog (or just a woo/psychic cat?) my epilepsy nurse said it's likely my cat genuinely could sense as it's a recognised "thing" but only trained dogs are officially seizure alert/support animals. (I have no intention of her being a support animal, I spend enough time in A and E without trying to put a harness on her ) My other cat likes her harness but she's even weirder than seizure recognising cat.

Oh, it sounds like a bit of frying pan and fire with the meds. If we can't stabilise on Keppra maybe the consultant will want to change it anyway.

Does anyone here have a proper Seizure Alert dog (or just a woo/psychic cat?) my epilepsy nurse said it's likely my cat genuinely could sense as it's a recognised "thing" but only trained dogs are officially seizure alert/support animals.

DD asked her neurologist for one; but he told her she has people to look after her!

DH says when DD has a seizure, she gives off an organic chemical smell - like pear drops but not pear drops. The same sickly sweet smell.

@drspouse I hope the consultant can improve the situation for you. 

@Quisquam I think one of the criteria for an alert dog is that you actually have to have a carer available to supervise the dog initially!? I would much rather have a SA cat than a dog as I don't actually like dogs That's interesting about the pear drops, I've read that about diabetics too I think.

I wish I I actually had a proper "warning" signal as every time I jerk at night, if DH is awake I can hear him holding his breath and looking at me. He strokes my face at night when he thinks I'm asleep. I know he's stressing about the situation, and I'm sick of causing him stress, and I'm sick of being "laid up" and him having to do everything and work (and then worry about me at work!) So epilepsy is a knob and can fuck off - I have no idea why people voted IABU to think that?!

I 100% feel your pain... I'm now 44 and my night fits have gone mental. My mouth is a complete mess. I'm waiting to be referred to the epilepsy nurse. Haven't seen them for 15 years!!!

DH has diabetes and if you get the keto smell (pear drops) you are SERIOUSLY ill i.e. in a coma or imminently, get to ICU.

I also have nocturnal seizures and they're rubbish. No one realised what was happening for years but I'd be waking feeling as if I'd taken a good beating, tounge bitten and waves and waves of tiredness.. oh and quite often wet the bed. My brain gets fuddled, I ache all over and all I want to do is sleep. Some days I'd call in sock, take.DCs to school, come he get back into bed and sleep until it was time to pick them up.again

In 2016 I had such a major seizure I was hospitalised for a week.. and for some reason had a non fading rash so was query meningitis ( apparently a rare side effect of seizures)

Keppra was awful for me. My emotions were all over the place my family hated me and I was angry all the time.. and started having absence seizures as well. Then they moved me to lamatrogine which was much better but took a while.to get right dose. I've now gone about 9 months without a major seizure but still have minor absence seizures.

It's rubbish.. oh and while I'm at it I seem to get a different size and shape if tablet every damned time.and have ended up under / over dosing just because its confusing.. and the more I did it the more confused I got

YADNBU

My friend is on slow release Tegretol (carbamazepine) which does the trick for her but makes her stomach a bit oversensitive and dries her mouth out. Anyone else have experience of this one?

I can’t understand why more people with epilepsy are not fitted with a vagal nerve stimulator. If you know you are going to have a seizure you can swipe the stimulator with the magnet and it can reduce or prevent a seizure. My son has no aura so his stimulator is set and will kick in if his heart rate goes over 100bpm. It has been a game changer but he still needs several anticonvulsants. Good luck all.

If you know you are going to have a seizure you can swipe the stimulator with the magnet and it can reduce or prevent a seizure.
I'm assuming this wouldn't work for nocturnal seizures? I don't know if heart rate goes up during nocturnal seizures though.
I'd be interested to know if my DS heart rate goes up but as he has ADHD and is rather easily triggered to fight or flight, when he's anxious and fights back/runs and hides I assume it would trigger as well. Would that be bad?

@CountingMareep I haven't used that medication but I have Sjogrens Syndrome which causes a dry mouth and your friend could get artificial saliva from a pharmacy which could help - I don't like it though so just drink loads of water and chew sugar free gum/sweets/suck ice cubes (nice in this weather!) A good lip balm helps, I get Elizabeth Arden 8 hr if possible (it's expensive though).

@reenon how (I was going to say how frustrating for you but it's probably more fucking infuriating really. Do you think it could be hormonal changes? There must be something causing so many of us (I'm 47) to go haywire!

Actually on that note, @cottonwoolbrain (admire your name btw!) it's interesting what you say about tablets changing, when I first started lamotrigine/lamictal I was told I would have to stick to one brand, epilepsy meds shouldn't be changed from manufacturer to manufacturer as ingredients are different. But mine actually have been different brands for a few months now but I haven't noticed as the Keppra/Clobazam have been added and it's cotton wool brained me too! I wonder if that could be a factor, I remember my fabulous GP starting to prescribe me two months worth at a time when there was a shortage of something after Brexit. My recent lamotrigine tablets look like something you would have paid a fiver for in a club in the 90s 

I also find it really confusing how many different meds/doses there are (I also take meds for other condition), I have a dosset box (will try and remember to link but probably forget) and every Sunday I sit down with my bag of meds and get all weeks the doses ready, that way I can check the label to make sure I'm putting the right dosage in (if anyone claims PIP this is an "aid" that gives points). I order my meds online (does everyone else do this?) and check every Sunday at the same time if I need to order any. The routine helps. I also keep a couple of days worth in my handbag (14hr wait in A and E the other week so glad I had my evening doses with me!)

@cottonwoolbrain I can't believe your seizures went undiagnosed for so long! That's so bad.

I'm glad I started this thread if it has helped others feel less alone, I certainly feel better for it, getting it off my chest to people who understand. I'm just so fed up at the moment, and sympathies to everyone feeling the same way. Cotton wool brain is such a good expression, I feel like my mind is made up of a wispy cloud that drifts and has gaps, I have constant "tip of the tongue" feeling all the time. I spent the other day calling the air fryer the air conditioner FFS. It's just I'm so exhausted, all my limbs feel like they're dipped in concrete and feel like I'm such a burden on everyone else in the house. Moan moan moan.

Well this is interesting (very quick Google)

epilepsysociety.org.uk/about-epilepsy/anti-seizure-medication/generic-branded

Updated in MAY 2023

www.cqc.org.uk/guidance-providers/adult-social-care/medicines-seizures

I would imagine it’s people who think that despite your vivid and sweary descriptions, you are still being too polite with regards to epilepsy. It’s a bastard!

Fuck the epilepsy.

Those on Keppra and struggling with the side effects (shit in my experience, especially the suicide ideation. I knew to expect this but it still got a bit close for comfort)- if you haven't heard of brivaracetam then it might be worth asking about. It's a very similar drug to levetiracetam (keppra) but from what I understand has been developed with a bit more specificity so you don't get quite as many of the unwanted effects. I found I had side effects whilst transitioning but they have settled down substantially which on keppra they never did.

@UpToMyElbowsInDiapers this is me actually moderating my language on this thread

I can’t understand why more people with epilepsy are not fitted with a vagal nerve stimulator. If you know you are going to have a seizure you can swipe the stimulator with the magnet and it can reduce or prevent a seizure.

If it works, that’s great. It doesn’t work for everyone though.

DD1 has got a VNS - it never stopped or reduced seizures. The second one had the auto stimulator and it was going off 116 times a day, so a battery only lasted 3 years. It hasn’t made any difference to the number of seizures though. We’ve let the battery run out, and are not putting her through battery replacement again.

Iirc, the first time in 2011, DD1’s cost £10,000 - that’s probably why ICBs won’t fund it for everyone?

Do I think epilepsy is shit? Absolutely - it’s destroyed DD1, as we knew her!

It's a swine! It's ruined my DSis life to the extent she won't come to family events anymore because she's worried about a) a having a seizure and b) wetting herself while having a seizure!

In our family it's genetic and, unfortunately, one of my DGC has inherited this gene 🙁 This poor DGC has inherited several ND conditions as well. I'm not a sweaty person but I'll often have a rant about this!

@Karatema how old is your DD, I feel so sad for her reading that. Would she consider wearing something like Tena pants, the adverts make them look just like black "ordinary" knickers. Or even period pants (which actually could be better as they're something you'd buy anyway for another purpose, if that makes sense?)

I feel like being very extremely sweary today as I have had another seizure overnight. I think I have a lovely black eye coming, a massive headache starting and have broken my little finger and can feel other aches and pains in the post! I don't usually feel much pain for a good few hours/the next day so sometimes stuff isn't clear unless something is visibly broken or out of place. Apparently after my seizure I switched on the TV before going back asleep so DH found me with Sky Sports blaring out, which is almost funny as I normallly moan about it being on so much. The only positive is that the broken finger isn't on the hand that's booked in for a tattoo - now that would tip me over the edge!

I was scheduled to chauffeur various DC and DH around today so all that has all gone to shit too, I feel guilty even though I know it's "not my fault". It's the knock on effects on everyone else. AGAIN.

Fucking HELL.

Sorry @Karatema I mean your DSis not DD

My DSis is now 60ish and has lived with epilepsy since she was mid-teens.

Yes, she uses every modcon available but these are, sometimes, not enough!

I hope your day gets better

@Karatema so period pants isn't probably the most enlightened idea for your DSis, sorry

The Epilepsy Society actually held a local meet up event recently and I was so looking forward to going to one social event where everyone was in the same boat (so to speak). Naturally I missed it because I had a seizure

I take Lamictal and my GP once issued a prescription with “Lamotrigine” on it instead and then refused to change it. He told me that it doesn’t matter what brand of Lamotrigine is given to me, despite me saying that people taking epilepsy drugs should stick to the same brand.

My neurologist then consulted my GP and said my prescription must specify Lamictal and I’m not to be given generic Lamotrigine so thankfully that crisis was easily averted.

I take Keppra (alongside my Lamotrigine) and although I don’t have any noticeable changes in my mood on a day to day basis, I have noticed my fuse is definitely a lot shorter! I’m still my usual self, personality wise, but I have much less patience for people these days.

Im seeing my Neurologist in two weeks to discuss slowly weaning me down from my Lamotrigine dose so they can increase my Keppra.

I currently take 500mg a day of Lamictal, which is apparently a very high dose, and they want to wean me down to 200mg so that’s obviously a big reduction. I’ve been told that due to the likelihood of withdrawal symptoms and breakthrough seizures they want to do the reduction really slowly and it will take 12 months in total.

I feel nervous about reducing my Lamotrigine dosage but at the same time, it’s not keeping my seizures under control so there seems little point in taking it.

I take 1500mg of Keppra currently (500mg in the morning and 1000mg before bed) but they want to increase me up to 2000mg alongside me reducing the Lamotrigine.