To ask about after effects from seizure?

[ItsABeatifulDayNow]

Had my first ever seizure (a tonic clonic one according to hospital) this week, so understandably feeling a little scared and confused.

Can't believe how much my body hurts - every single muscle in my body aches as if I've run a marathon and feel I could sleep forever.

Today (three days since seizure) in addition to the pain in all my muscles, I have noticed red bruising on the inside of both of my thighs - as if some small veins have broken as well as bruising occurring.

Could this be due to the movements my body made while having the seizure? Or should I get these looked at more urgently in case they are indicative of an underlying issue?

Unsure of how much I should worry about these - don't want to over react but tend to under react because of this.

Had brain scans in hospital which came back normal but have been booked to see a neurologist next week.

Any advice welcome - sorry for rambling post!

yes it was very scary as a mum! my other DC witnessed it tho, not me. sadly since then the DC who witnessed has suffered from anxiety and I'm sure it stems from witnessing the seizure.
I'm sure my DC has travel insurance with her bank but pays a bit extra for the epilepsy. I will ask

vicky DC says it's with the bank and she paid no extra just had to inform them of the condition.

Late to the thread, I know - sorry.

I'm another person with epilepsy (get so tetchy about being called 'an epileptic' for some reason) and I just wanted to give you a virtual hug.

My first fit happened when I was 22 - completely out of the blue. I had several over the next year or so while we got my meds sorted and then I was fine for a few years. When my son was about 3 I started having more seizures including one where I went into status epilepticus in A&E which was a worry. One while having lunch with my mother in All Bar One which was kind of embarrassing... I've never broken ribs but I have concussed myself and twenty years on the sides of my tongue are slightly uneven from having been bitten so badly..

My meds were changed again and now I take Lamictal (have to have the branded, not the generic Lamotrogine as the tiny differences seemed to cause seuzures) and slow release Tegretol.

I'm now fit-free for five years which is amazing. And even saying that feels horribly like tempting fate so I'm tapping my wooden desk and typing with one hand!

I sympathise so much with that awful post-dictal feeling. I tend to get a feeling of utter doom, convinced I'm going to die. Quite apart from the headache and the tiredness and aching. Having epilepsy is utterly crap and I send out my warmest hugs to all of you who also have this hanging over them.

If anyone wants to ask any questions do feel free to DM if you don't want to ask publicly. Always happy to help if I can although the Mumsnet hive mind is so good for things like this.

Sorry this dropped off TIO, I don't think the app is working properly for me

How is everyone doing? Vicky have you heard from neurology yet? I know here they have timescales, IIRC they said referral to neurologist within two weeks after what they called "a first fit". (Is seizure a more acceptable word, btw, fit seems a bit...old fashioned and kind of un PC to me!)

Toast would you mind me asking what dose Lamictal you are on, or anyone else who titrated (is that the word) up and got their seizures controlled?

I'm still in the "trying to find lowest level that works" stage and haven't got there yet as I had another seizure this week I dislocated my shoulder, and of course I was alone in the house with the DC, who luckily slept through it as it was nocturnal again. I don't really remember it but have vague recollections of coming round, I managed to call DH (albeit inarticulately) but I think I'm going to have to accept at some point my DC may have to deal with a seizure/aftermath. They are teens so I know I'm luckier than if they were little but I know it would be scary, I cried a lot after this one and was very disoriented, it was bad enough DH had to see it!

I feel bad moaning as I know a lot of people have it "worse" (bad wording, hopefully everyone understands what I mean) but I don't really know anyone in RL who actually understands what it's really like, unlike here. Also I'm walking like John Wayne as my leg muscles are so sore, which is never a good look

useall sorry you are struggling. hopefully you will find the right level of medication. One of DD seizure was at night and I work with someone who only ever has nocturnal seizures. She lives alone and says she only realises she's had a seizure the next morning as she aches like hell and might have some bruises

I take lamotrigine (I seem to be fine with the generics) 100mg bd and have been seizure free for over 4 years. The last TC seizure I had was when titraiting up to the maintenance dose - I think by that point I was only on 75mg bd. I had my first witnessed seizure about 6 years ago, which was attributed to possible stress as I'd lost my mum a couple of months prior. We're pretty sure I'd actually had one a couple of months prior to her death though - it wasn't witnessed, and we didn't clock it as a seizure at the time, but DH came home to find blood all over the floor, my face bashed in and me with no memory of what happened. So we're pretty certain my 1st was actually my second. However after one witnessed they didn't start me on AEDs - until 18 months later I had another, and at that point the neurologist thought sensible to start me on anti convulsants. I had one more seizure a few weeks after starting lamotrigine - but as I mentioned, still titrating up.

I felt bloody awful after my seizures - very dopey and sleepy the next day. The post ictal headache was horrible, and after my first witnessed one (DH said I was seizing for a few minutes) I had aphasia the next day - I knew what words I meant, but couldn't quite get them out.

Jools gosh that must be quite scary waking up alone. In some ways I think I probably have it "easier" having nocturnal seizures as it reduces the risk of injury

Banana yes they said the same to me, two witnessed seizures, in fact when I was inpatient after the second they asked my DH to come in to describe exactly what happened. I have no recollection of the immediate periods before and only vague flashes of afterwards. I was on 100mg prior to this last one so going up again

Has anyone had "causes" identified? I have to go for yet another scan (CTV?) as the previous MRIs and CTs showed an area they want to look at again. I'm avoiding google, tbh as I know I will only worry myself further.

Yep DH had to describe what happened to the neurologist, as obvs I had no clue

Although my last seizure was at work and I didn't know it had happened! I remember sitting at my desk with an absolutely stonking headache, thinking 'Christ I feel awful, maybe this is what a migraine feels like' (which given I'd just started AEDs a few weeks prior seemed reasonable), and told my colleagues I was feeling horrific and was going to go home. I was in the cab home and I had this weird sense I'd lost some time somewhere - then I thought 'hang on, I was drinking from a pint glass of water, I don't remember getting that'. I thought maybe I'd had an absence seizure, so I texted a colleague to ask if she'd noticed me spacing out at all. She said well yes you were quite spacey once you came round after you finished fitting.

So turned out I'd had an entire TC seizure and had lost about an hour or so! My colleagues looked after me and apparently I had insisted I was fine once I appeared to have come round properly. Except whilst I appeared to be lucid, I obvs wasn't 'back' at all. So I had absolutely no idea whatsoever that I'd had a seizure!

Even now nearly 4 years seizure free DH shits himself if he hears me drop anything upstairs, and comes racing up to check I haven't started having a fit. I'm very blasé about my epilepsy, but of course I don't see me seizures and how terrifying it looks.

Could I ask about bathing? I've been warned about swimming alone and bathing, no lock on the bathroom door etc, I have been having baths with the door open but I know DH worries about it. I don't think I could lose my long bubbly baths though...what do you all do about it?

I bathe with the door unlocked, and DH will just check through the door if I'm OK if I've been in there a while. DH panics but he's better now I've been seizure free for a good while now

No bathing alone in the house, and I was told no baths during the first few months after my seizure (or when I was pregnant)

Thanks for reply banana, it's strange how we don't "realise" immediately. Yes I think DH was very shocked and quite shaken by witnessing the first, especially as it was out of the blue and a big TC.

The other night, our cat (who is a complete tool but I love her) knocked a load of clattery stuff over in the middle of the night and woke us up in a very startling fashion - DH's first reaction was to put his arms round me and shout "are you ok?!" He couldn't get back to sleep afterwards and I kept catching him looking at me, I find it quite sweet/endearing really but I do feel guilty about how much worry he has had recently. Plus he has to do all the driving for everyone!

My son gets little pin prick marks all over him after tonic clonics. I think it’s from the force of the muscle contractions.

It took us a few tonic clonics to realise he needed regular painkillers for at least 72 hours after a seizure (he is non-verbal). Think he gets a huge headache. And lots of sleep.

Look after yourself - it’s a traumatic thing.

Been epileptic for about 15 years now. The reason your so tired- is because you have basically run a marathon. And your muscles and body have moved in ways and at a force they wouldn’t normally.

Hopefully this is a one off for you. One thing I didn’t see anyone mention is if you do get put on medication don’t be too concerned about the funky side effects some can cause. Everybody is different and the doctors will work with you to find the best. My current combination affects the taste of fizzy drinks amongst other things. I’ve not had it changed because it’s helped me kick my cola addiction.

DD never had a cause found for her seizures, but she was in the last year of uni and staying up all night studying. One of the neurologists suggested stress may be a factor.
She was told not to bathe or swim alone.
Her medication seems to give her extremely weird dreams