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?

My son who has Down Syndrome also has epilepsy and his neurologist arranged for him to have a vagal nerve stimulator which has not stopped his seizures but has stopped the severity. Sadly he still needs medication which knocks him out! He is a nightmare in the mornings!

I'm in a good place right now, but the constant fear that at some point that's going to be taken away from me because a seizure hits is so depressing.

Medication side effects are awful, I've gained so much weight. Plus the constant anxiety of wording what every different symptom might be (currently constant involuntary movements - epilepsy or one of the other conditions I have).

I also have adult onset epilepsy, for a long time I thought I was very tired and was falling asleep. A big TC at work one day left me in no doubt.

It’s fucking sh*t isn’t it.
my 10 year old daughter has nocturnal epilepsy that has now progressed to having a seizure every morning if she’s suddenly woken by an alarm.
she has a condition which means she’s going into early menopause which I think has made the whole thing worse.

My DD(16) has the opposite problem. Diagnosed a year ago, her periods are on a 22 day cycle, we asked for her to be put on the pill to regulate her cycle. They have offered her meds for period pain, but the pain is manageable, what they are giving her means she can’t take ibuprofen, GP recommended paracetamol, but that is contraindicated with Lamictal.

Paracetamol can’t be taken with Lamictal?

I have been on Lamictal for over 24 years and I have always taken paracetamol for the duration of that time whenever I have needed it.

Who told you the two can’t be taken together?!

DD has had 10 weekly Depo-Provera injections for 10 years. Best thing to improve the quality of her life after sodium valproate!

I'm sure those with two young children can confirm this, but my DD has seen DS have seizures and she takes them in her stride/comes and tells us so I think yours will be OK @MyTruthIsOut

... disable is the word you're looking for

Mytruthisout her private neurologist said she wasn’t to take paracetamol at all. I think the information leaflet says the same, but I am away so can’t check it.

Well I’m off to investigate that then as I have never been told not to take it.

When I was in hospital for two days in March (due to being in non-convulsive status-epilepticus) I was on the Neurology ward and I was prescribed paracetamol every 6 hours for the duration of my stay as I was having such bad headaches.

No interactions between the two. Caffeine seems to reduce effective dose though.

https://www.drugs.com/drug-interactions/lamotrigine-with-paracetamol-1430-0-11-2744.html

OP not to derail your thread but my eldest DD 5 has nocturnal epilepsy- given her age and the fact her seizures are near fully controlled with her meds I can’t get any information from her. Do you “feel” your seizures ? How do you know you’ve had one?

Mytruthisout that’s interesting and I will raise it with her consultant in her next appointment. Thanks

I’m also a nurse and we give paracetamol to people with epilepsy all the time.

I will be very interested to learn where the neurologist got this information from.

Also, I’m a nurse and we give people with epilepsy, who are also on Lamictal, paracetamol all the time.

I will be very interested to learn where the neurology got his/her information from.

Yep, my dd, 14, is at the start of her journey, she was dx nearly two years ago with absence seizures. Then last year started having tonic clinic seizures. She is now on 200mg lamotrigine a day, she had an almost four month break of seizures, but recently had quite a few absence seizures again and one tonic clinic. the meds have totally changed her personality, she is what can only be described as monotone now, used to be sparky and life and soul.

My heart goes out to you all suffering from this fucking horrible condition. I lost my mum to epilepsy when I was 19. She was only 56. Hers was adult onset, in her late 40s, never found out what caused it. She had day and night seizures, often so bad that she couldn’t even recognise me or my brother for up to 24 hours. Horrendous.

Kepra rage is a thing. A friend of mines dc was on it and it drove him daft. Neuro said ah that's just kepra rage and changed the meds

Oh I went maddddd on keppra, I was pulled off straight away. A shame as it worked. It's very common for it to impact mood.

You can browse drugs, their interactions and how common they are here
https://bnf.nice.org.uk/
I found lacosamide (Vimpat) made me incredibly dizzy and gave me awful vertigo which is very common.
It's a balancing act with epilepsy though, isn't it. How useful something is vs the side effects.
And - not to be bossy nurse (esp as I am not a nurse!) - I saw some people say 'I'm not taking medication, it doesn't help.'
I don't think that is a great idea unless you've spoken to your neurologist.

Drop attacks are definitely worse and I have sympathy for people here, esp the multiple times a day, and especially for people who especially DC are the one effected as that's worse than it's happening to ourselves (IYSWIM) I know I'm relatively fortunate with my type of epilepsy and do feel a bit of an ingrate complaining, but it's good to speak to others and hopefully for others to vent too.

I take paracetamol (and other different meds) with Keppra/AEDs and have never been advised against it I wouldn't stop taking meds without medical advice but when you've had a seizure despite taking them, it does sometimes feel tempting just to stop in a what's the fucking point kind of way. I sometimes have steroids as well as Keppra so that doesn't help with the rage! I shall see what the neuro say about HRT/pill - I'm just so fucking fed up adding even more stuff into all this.

I get the jerks too, my neuro said they're a side effect of meds. The worry is when I do it at night (usually left sided!) DH immediately wakes and worries it's the start of a seizure. I'm clumsy as duck anyway even without so have hot water dispenser not kettle etc etc!

@MyTruthIsOut obviously my DCs are older now but please try not to worry too much about your DC (I know you will worry anyway of course!) for mine it's just been their "normal" and they're actually calm unflappable people in general and I wonder if this contributed (I have a vague memory some DC had an advantage in their D of E - first aid?) And you're a nurse! I have a DC student nurse (and they get lots of practice on me so maybe your DC will follow you?) We have a local group from Epilepsy Support forum, do know anyone in a similar situation with DC the same age? Our local council have a team to advice on house adaptations etcSorry if teaching you to suck eggs etc. we have much better technology these days at least for emergency situations!

@SouthCountryGirl uni will put extra support in and I could apply for DSA but I was so much more stable when I applied, and am having serious doubts I can do it even with support. It's depressing g

@OnlyFoolsnMothers DHI don't know what they look or feel like at the time, but I usually cry out and whole body freezes for a few seconds then have convulsions Apparently I am "awake" afterwards and have even spoken etc (I don't remember these bit either) but then go back to sleep (very heavily). If I am alone @OnlyFoolsnMothers I usually don't think "seizure" when I wake as I'm confused and can't make the connection until I come to a bit more (I don't even know what day it is or where I am and have past threads about time travel etc!) I have usually bitten tongue/mouth or facial injuries where I've punched myself) or other injuriesI have a disease that affects my connective tissue/joints so also very easily dislocate. Interestingly I don't feel the pain immediately afterwards. If DH or adult DC find me, they realise from how I'm lying/injuries. One is actually a student nurse which freaks me out as I hear a "hospital sounding" voice IYSWIM but am in my own bed! I'm not cooperative after a seizure (understatement) until I come round a bit but they tell me what's happened and make sure there's no urgent injuries I usually sleep most of the day and am usually groggy for a day or so afterwards, and muscles hurt for a few days just for miinjury seizures.

In fact I didn't post yesterday as I had another seizure and am only a bit more with it now (excuse any spag!j I'm just beyond fed up with it now. I have a lot of guilt about how shit things are for DH who has all this AND the financial responsibility. I don't know what's worse atm, that, the uncertainty and increase of future seizures, the physical effects or lack of independence(this is a big one for me atm

It's just all shit. Flowers to all (I think the emojis are beyond me today!)

I'm also finding I have zero attention span atm, it's normally crap anyway, but even worse atm. I literally lose concentration after 5 minutes. I wanted to do a lot of pre uni reading/research but find myself just watching TLC/Really channels and can't even keep up with that. I need a cosy box set I have seen before I think (I am being regularly checked by my student nurse who is at home today. She's strict!)

Pity party is fine, your fine one moment then your whole body feels like it's been hit with a lorry!
I had a seizure whilst ironing a few years back, woke up on the floor with the iron on my thigh 😶 I had 3rd degree burns and now have a pretty decent war wound 💪🏽

Can I ask, if you have switched from Keppra to another drug having tried valpropate, what did you switch to? I'd be especially interested in hearing from anyone with a DS in the preteen age group.
DS has always been an angry child (he was a very happy baby) and started on valpropate aged 5 then methylphenidate aged just 7 for ADHD. Lisdexamphetamine clashed with valproate so they switched him back to methylphenidate AND to Keppra at the same time.

When he started on methylphenidate and was on valpropate he was still angry (but the ADHD meds were quite low dose) and we see his difficulties increase as the ADHD meds wear off but it would be helpful to see if the consultant might think about a different epilepsy medication given this is a HUGE problem in our lives and his.

(Incidentally though he likes sweet stuff I don't think it's any more than another preteen boy - he has a bit of appetite reduction from the stimulant meds but not too much that we have difficulty getting him to put on weight).