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!

Hi! I don't have epilepsy myself but used to work with people who do. Bruises following a seizure are totally normal. Between your thighs is a less common area but still totally possible. Extreme tiredness for a long time after is also normal. Hope you feel better soon.

Agree with the above poster. Bruises, aching and fatigue are normal after a seizure, especially if it's tonic clonic. Hope you recover soon

In my experience, sleepiness and vomiting is normal too but bear in mind everyone is different. It sounds like you’re being looked after x

How scary for you. Being bruised and sore for a few days is totally normal.

Take it easy x

I’m not epileptic but my df and he always feels physically exhausted and battered afterwards. I think it’s normal but if you’re concerned seek medical reassurance.

That must’ve been a huge shock, you’ve so much to mentally process as well as physically. I hope you’re been well looked after

Thank you so much to everyone who replied - it's so reassuring to hear the experience of others, though I'm sad for anyone who has experienced it of course.

I think part of the shock is the out of control element - knowing I couldn't control my body and not remembering it is a challenge to my inner control freak and inner (well, very much outer) worrier.

Back to hospital today as doctor was concerned about the bruise like markings that appeared but they have cleared up now and so returning to their plan re neurologist and physio this week.

Thanks again - so nice to come back to friendly and supportive messages on what has otherwise been a frankly shite couple of days!

@VickyMcCluresAccentThough I hope you're feeling ok? It's completely normal to feel awful in general and still in shock. I had a seizure out of the blue 14 years ago and after quite a short time it was fully controlled and I live a relatively normal life.

My neurologist always says that the average person has a small risk of having a seizure, so it might be that it's a one off.

Make sure you rest and take it very easy. Don't be afraid to tell the neurologist that you're anxious. I wish I had, but I was still young and living at home and didn't want to worry my family.

Feel free to send me a direct message if you want to ask anything or just vent

Take care

Hi, temporal lobe epilepsy here. Yes I feel completely and utterly drained after a tonic-clonic. Muscles ache everywhere for several days & sometimes a lingering headache. Never had bruises on my thighs (as far as I can recall) but I do burst blood vessels in my eyelids which look like spidery red veins. If you’re not sure about the bruises on your thighs you could take a look at the Epilepsy Action website which has loads of info on. Take it very easy & rest as much as you can, your body has been through a lot & will take time to recover 💐

Sorry, just seen your last post. Glad the doctor was pro-active in sending you back to hospital but also good news that the bruising has reduced.
I completely understand what you mean about the lack of control. I was 32 when I had my first and initially it turned my world upside-down. I did find however that knowledge gave me a bit of power so I read up as much as I could about everything related to my situation. It’s now just a part of me & I know how to reduce the chances of having a seizure.

Feeling a little bit teary at the kindness of posters on here - thank you so much for taking the time to come back to me I appreciate it so much.

I'm very much a tough cookie, just keep going type especially following a car crash in December in which I nearly died and resulted in me now being part bionic woman with metal replacing shattered bones.

Think perhaps my body is telling me it's ok to need some recovery time and that it needs a little more nurturing and a little less bravado... I plan on using this body for years to come so I need to take this seriously in the right ways and be kind to myself I think.

I might try talking to myself as I would a friend - as in FFS just rest for a few days you eejit! Rather than feel I'm letting anyone down if I'm not 100% all the time.

Thanks so much again it's so appreciated for everyone!

Hi, I have tonic clonics too, they suck! I ache for days after, I suppose it's the most intense exercise my body ever has! If you have people around you please take up offers of help. Your body needs rest, particularly sleep. That said I find gentle stretching soothes the pain. 4head sticks really work for the headache. I hope this is a one-off for you (even if you have to go on meds there is a good chance of full control) but if like me you have to get used to these popping up every now and again please know this is not the end of the world. I live a good, full life, not much different from my friends. You are still you, you'll just be a little more of a warrior than you were before.

Both DH and I have epilepsy, mine under control due to meds, his almost but still occasional seizures. We have both had long periods of T/C seizures especially when undergoing medication changes in the past. Between the two of us after effects include feeling as if I've gone ten rounds in the ring, sleeping for 48 hours afterwards, fractures, vomiting, bitten tongues and after my worst seizure not being able to speak or understand what was being said to me for almost 12 hours after DH found me collapsed on the bathroom floor. However our condition brought us together and we never let it get us down I've passed by driving test and the feeling of liberation after a life of public transport is amazing.

@alldaysleeper massive congrats on passing your test - what an achievement and I absolutely understand the sense of freedom it brings, I'm excited to hopefully get that back once I have the all clear from my bionic arm and the hospital team investigating my T/C seizure! Thanks so much for sharing and how lovely you and mrsleeper truly understand the experience so can offer one another support, you're a power couple in my eyes!

And ps my bitten tongue is SO painful but I'm finding that ice lollies are helping a little to soothe and numb the area I bit a chunk of - currently testing mini calippos but very happy to try others for scientific research purposes only of course...

Thanks @VickyMcCluresAccentThough
I honestly think that having someone that totally relates to your experience helps massively as it is a complex condition. I've hated saying to friends or employers about how tired I am and knowing they don't really get it. We've both lost or had to give up jobs because of our health but feel we are in a good place, not cured because I know we never will be but just content. Really hope everything goes well and you are back on the road and hopefully seizure free soon.

Sorry that so many people are in this position but selfishly I am so relieved to read this thread.

I had a TC completely out of the blue a few months ago, discharged after a brief visit to hospital, then had another bad one which landed me back in for a week while they ran tests. At the moment being treated with Lamictal which has been increased as I have had a few further TCs, not as bad as the first two though. Seriously dislike the side effects but it's better than the seizures.

YY to the muscle pain/headache/tiredness/upset about loss of control afterwards. The knowledge that you were foaming at the mouth and wetting yourself in front of your DH is a unique feeling. Plus I have terrified him and caused him and my DC so much worry - I could write a whole thread just on that! I also feel quite stupid that I was previously so ignorant of the impact of epilepsy - I never knew that the after effects of seizures were as awful as the seizures themselves, if that makes sense?

One of the hardest effects for me is losing my driving licence for 12 months. I have other health issues (which have already cost me my job) and mean I can't walk far so I feel very restricted and dependent. Also struggling with how much my life has changed completely out of the blue, unlike my disease which had a similar impact but gradually. It's like a before and after feeling.

That was a bit of a long self centred rant, apologies. Thank you for starting the thread vicky as it has given me the push to talk about it, I have been on the verge of starting a thread lots but not had the bravery! Useful tips too like the ice lollies and 4head thing.

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?

This thread is very comforting, thank you again.

Oh dear I fear I killed the thread with my pity party

Had one last night (epilepsy for 16 years) Feel achy, tired and a bit sore. Was able to go to work at it was a short one but have had others where I have been off for a week or more. Worst injuries include broken ribs, concussion where I had 5 stitches in my head and my tongue bitten so hard I couldn’t eat.

I hope that’s not all too depressing but my epilepsy is generally well controlled. Recently went 12 months seizure free but have had a few recently, possibly due to the heat. Drink loads and treat yourself to some carb loaded, sweet stuff. That always perks me up.

The epilepsy society is fab too. PM me if you want to chat more

useallyour my DS is the one who has epilepsy, when he has a bath one of us finds a reason to go upstairs until he's out (he's 18) he has a shower when he's home alone.

It's all new to us too. He's going to Malia on a boy's holiday soon and I'm worried sick about it. His triggers are alcohol and late nights. He's only ever had one TC, and is on lamictal.

I doubt I'll sleep all week but I know I have to let him be a teenager.

No idea why I'm posting really. Hope you're feeling better OP.

Socks those injuries sound awful, poor you. I am in awe that you managed to go to work! I feel "lucky" in some ways that my seizures seem to be nocturnal/waking so risk of injury is lower (although I did bite my cheek quite savagely!). Do you have to have any special (I can't think of the words sorry) "measures" in your house? I was advised about low beds and bedside lamp leads and generally "baby proofing" sharp corners etc. I thought all that was behind me!

Lola that sounds very worrying for you, I bet you will be on tenterhooks until he comes home. It's so hard "letting" them do adult things as teenagers grow up anyway, but I can imagine how you have an extra layer of worry. Do you have to be careful with alcohol and Lamictal itself, I don't drink so forgot to ask. I suppose all you can do is ensure his friends know what to do in the unlikely event something happens and that he has good insurance. Would you be unreasonable to ask him to "check in" with you every so often I wonder? I found that when I got on board with Snapchat, I heard from mine more regularly I'm sure you know this anyway

I'm so pleased that this post has started helpful discussions for fellow MNetters :)

I'm having my EEG next week (date tbc) and writing down recent symptoms has helped as since my car crash 6 months ago I have felt generally much less "on it" than normal.

But my normal is pretty full on - running my own business, fairly recent (pre-crash) bipolar diagnosis and a pretty tough start in life.

Having said that, since crash I've noticed significant trouble with my speech (forgetting words mainly, well not forgetting as I know I know them but can't kind of get them out), memory, organisation, awareness of dates and times / diary - where usually id hear a meeting / appointment day and time and it was etched in my memory easily. Feel silly I haven't joined the dots and thought maybe this all means (along with fainting and now the TC seizure I may have had more of an injury to my brain than previously flagged).

Pissed off that the seizure has Defo already set back some of the progress I've been making in physio for my arm. The shatter was bad and pin and plates still settling I guess but pain since the seizure is much worse as is ability to carry stuff which is a pain in the arse.

Difficult to know who to speak to about some things - arm is being treated in various ways by GP, surgeon and physio and no central point of contact.

BUT I am reminding myself that while it's all a bit scary, the sooner we find out what's going on the sooner we can treat it.

I'm so sorry that was an epic length post.

Thanks so much again to everyone for sharing their experiences id love this to continue and I'm inspired by other people being brave in the face of rotten luck and bad news

My DH has epilepsy and it takes a full week to recover....it’s essentially a gruelling fully body work out. Be kind to yourself, take it easy and you’ll recover.

Vicky have you seen the neurologist yet? I'm under other departments too but my neurologist was very good about discussing any queries/worries I had and has written to my other consultant to address any "overlap" and copied me in which I found helpful.

YY to the memory issues (ironically I forgot to mention them in my post ) They told me there was a word for that "on the tip of my tongue" feeling of searching for words you know (again, I have forgotten the word already ) and that it was common, part due to the seizure but possibly from the meds too. I keep repeating myself and asking the same questions. It's like my mind is made of glass and everything is just sliding off! I also find it a bit upsetting as well as irritating as was also a bit of a control freak organised person.

It must be extra hard for you on top of your accident. Will they be able to tell if the seizure is connected to the accident do you think? It's a lot of major life changes for you to deal with in a short space of time. Have you been offered any counselling or support?

for you. One of my DC has epilepsy, had their first seizure out of the blue after finishing uni. They had one other seizure and was given scans eeg etc but no cause was found. They are on medication now.
I remember them being achy and out of it for a few days after.
The worst thing for them was not being allowed to drive for a year.
I wish you luck x

So sorry I missed the latest replies on this (or probably saw them and forgot!).

@MyGuideJools - thanks so much, I can't imagine how stressful it is from the outside too, my poor mum was brilliant when she found me having the seizure but it must have been so horrible for her to see me like that. I'm so pleased to hear your DC hasn't had lots of repeat events, I hope they are fighting fit otherwise now :)

@UseAllYourWellLearnedPolitesse - you are so lovely thank you for such a thoughtful reply. I'm still waiting for my neurologist appointment so fingers crossed it will be booked in ASAP! Would be amazing to have one central point of contact as everything is so disjointed at the moment, with me in the middle of all services lacking memory and word recall!

I had my funniest tip of tongue syndrome moment so far yesterday - I couldn't think of the real term for what I described as 'tube duvets' but thankfully someone rescued me and correctly guessed I meant sleeping bags. I prefer my term to be honest :)
Yes I'm having counselling and am in general accepting more help. In fact, my mum and one of my friends surprised me this week and have organised a HOLIDAY for me! I've had one holiday in seven years due to crazy work so I can't wait.

Which leads me to my next question - I'll need travel insurance that covers an as yet undiagnosed / still being explored condition (the seizures). So far the best cover I have found is £115 from The Post Office - happy to pay this but wondered if anyone who has experienced seizures has found any particularly good holiday insurance cover they would recommend? Two weeks in spain end of July to mid August...

Any help hugely appreciated!