Anyone on here with epilepsy?! PLEASE HELP!!

[Epilepsystruggle]

I am absolutely desperate to speak to someone/anyone with epilepsy!!

I've just been diagnosed this week after my second seizure.

I'm in my early thirties with a husband and children.

A week before Christmas I had my first seizure. Completely out the blue with otherwise okay health. Got taken into hospital, had a CT scan and MRI which was clear and I discharged as one of those things but referred to neurologist for an EEG.

On Monday however I was out shopping with my mother and has another seizure even more severe than the first. Bit my tongue, urinated, the whole she'bang. Got taken into hospital and discharged with an appointment with the neurologist the next day. The neurologist has diagnosed me with epilepsy but I won't get my medication until Wednesday.

Anyways since my seizure I feel like I'm in a simulation. Nothing feels real. Like im living in a dream. I sometimes struggle to catch my breath and I feel my brain twinging.

I also feel a sense of impending doom, like in going to die any minute or have another seizure which will finish me off.

I'm having vivid memories coming back from childhood. It's like I'm trapped in a nightmare.

I honestly feel like I have a learning disability or brain damage. I'm slow and forgetful. Nothing feels 'right' and things are distorted. I was laying in bed next to my baby and felt like my baby looked 10x bigger. It was the weirdest thing.

Physically I feel like my brain has swollen, constant headaches and my balance is off. Now and again my heart starts racing. I thought I was having a psychotic episode.

I don't know if this is normal after a seizure or what. I also never heard of anyone being diagnosed with epilepsy completely out the blue in their thirties.

Will I ever go back to normal? Is this weird dream-like state I'm living in normal after a seizure? Will my brain return to normality?

All I know of epilepsy is what I've seen in movies, someone has a seizure, gets up, has some water and then carries on living life as normal. My brain however feels like it's been hammered and frazzled and that I've dropped IQ points .

Id be so grateful for any advice given or words of support/encouragement. I feel an actual mess right now. I'm so scared and lost.

My daughter takes lamotrigine. She had to reduce her dose recently because itxwas causing her hands to shake. She is also having her eyesight checked at the eye hospital - the opticians were concerned at her last eye test about how quickly something had deteriorated and sent her for tests and it turns out that eye problems are a very unusual side effect.

Anyway, the thing about being on epilepsy meds is that you need regular monitoring. My daughter sees the epilepsy nurse every three months and has regular blood tests via the GP. You have to keep a note of any unusual symptoms - we had no idea the shaky hands were to do with lamotrigine. And see the optician every 2 years.

You must never miss a tablet. And as these are controlled drugs, they won't give you a huge prescription all at once - you do need to keep on top of reordering them, especially around holidays, and sometimes they are out of stock so have a system.

And you need a medical exemption certificate to get them for free if you currently pay for your meds https://www.nhsbsa.nhs.uk/check-if-you-have-nhs-exemption/medical-exemption-certificates

I have epilepsy, specifically juvenile onset myoclonic epilepsy which as others have said just came out of nowhere when I was 18. It takes me about a week to get my brain or concentration back. Not having your license is a real pain in the arse tbh. Apparently I'm photosensitive as well and my husband can tell when my eyes go funny to remove me from the situation. I get no warning unfortunately but have managed two children and even (during a very long period seizure free) managed to be a childminder. With the right protections in place (generally a medication that works for you) it is totally liveable with.

After I have a seizure it makes me paranoid whenever something in my body feels odd. Mine have gone a bit haywire recently but they are sorting out a meds regime. Also to remember is sometimes the side effects of meds are horrible but a change of them can make you feel no side effects.

Hi @Epilepsystruggle I was diagnosed late twenties out of the blue - no history, nothing in the family. Your post brought back memories of coming to terms with the diagnosis and getting used to my new normal. I’m still on medication over 20 years later. Once they get your dose sorted you’ll hopefully feel better. A seizure can really knock your confidence. Take it easy. Thankfully I’ve been fine for years - as long as I take the pills! X

My sister was diagnosed in her thirties. She had actually initially been referred for a funny movement in her arm, seen in a stroke clinic and told not a stroke before having a grand mal seizure 6 weeks or so later.
She has found it quite difficult to control her seizures (and has lost her driving licence) because ultimately she decided that it was worth having a seizure every few months rather than feeling very knocked off in a complicated multi drug regime. This has been done with the full support of her consultant (and she does take medication).

where you are is a scary place but it will get better. Many people are terrified about having a public seizure - it may not happen and can be dealt with. It’s all new and unknown.

Have you been allocated a specialist nurse? The Epilepsy Society are a useful resource.

Best wishes.

So sorry you have experienced this. I had my first seizure 12 years ago (tonic clonic) in my early 30s. No more until about 3 years ago when I had a seizure in my sleep, then another one in the hospital. I recognise the feeling you are describing - I was in hospital for a week and can hardly remember anything from that time. I am on Keppra (anti convulsant) since the second seizure and so far, so good. Epilepsy is so little understood - Neuro told me in most cases they will never get to the bottom of what causes it. All the diagnosis of Epilepsy denotes is “more than one seizure”. I have a little girl who has known how to call 999/ Daddy/ Granny from a very young age. And I got my driving licence back after a year seizure free. It is a big adjustment and I really feel for you. PS - I get PIP and I work (not just for epilepsy though). Definitely consider applying.

In Terms of practical things with your children
Epilepsy Info
Don’t bathe young children / babies if you are alone in the house. If you are nervous think about taking small babies upstairs in a carry seat.
Think about getting a medic alert bracelet and having a summary including your medication under a magnet on the fridge door.
Thinking about telling a colleague /first aider at work so that it is not such a shock if it happens.

Nut being able to assess size sounds like “Alice in Wonderland Syndrome” - it has a name!

Your situation is similar to mine. I had my first seizure in my 30s and have had two more since. However the last one was in 2016. I have been on lamotrigine since then and it has worked well for me. Yes I have the symptoms where you say different words - look up 'absence seizure'

I also had very small babies at the time.
It threw a hand grenade into my life but now ten years on things are calmer.

I'm sorry you're going through this, it must be such a shock.

I don't have any experience. I wanted to suggest an android compatible watch. I have a Garmin vivoactive 4S (I'm sure there are newer versions) and Android phone. If I fall over then my watch will email/text my emergency contact (my DH) with my location too. I have this set up as I go running alone. Luckily I've never needed to use it so I'm not 100% how it works in practice but my watch did think I'd fallen once and wanted to phone my DH. He was with me and I was actually trying bash through thick ice on a pond with a stick, I was still on my feet 😂

Oh yes also to teaching young children their address and how to call 999. My son had to do it once and I'd come round enough to cancel the ambulance but that then meant that the police turned up as I'd cancelled them much to my children's amusement!

I've had epilepsy since I was 21, full seizure out of the blue then and a few more but mostly under control when on the right medication since. It did take months (years?) to find that and I was on lamotrigine for a while but didn't get on with it, I can't remember why but some medications made me very sleepy, some/some combinations didn't control the seizures. But I have been fully controlled for years now on topiramate, and have had babies with no problems. I had to be alone with them, just avoided bathing them when on my own and always changed their nappies on the floor. You will be fine, good luck!

Hi there , I'm a late onset epilepsy sufferer. I had my first seizure almost 3 years ago at age 57 and have never gone longer than 6 months between them. Not driven since then . Have tried lots of drugs, currently on Tomiperate , but had 2 fits in December so my consultant will probably want to tweak again when I see him .
I feel very odd for the whole day after a fit , sleep for hours , headaches and feel out of body .
No idea why it started with me but my suspicions lie with the covid vaccine !

My son’s epilepsy was provoked by his first Covid infection - strongly positive when he had his first seizure. The new virus irritated what we now know to be a problem area of his brain and now he’s waiting for brain surgery.

It's scary isn't it ? I realy hope your son is ok xx

Thank you for your further replies. It is much appreciated. So I have not yet started medication? I'm having an issue with neurology because the neurologist hasn't signed the form to be sent to the GP to prescribe the lamotrigine. Can I please ask those who have epilepsy? What do you do when you are in the house on your own? In regards to your safety? I'm so scared of having another seizure with no one with me.

In on day 7 since the seizure and I still don't feel right. I have a constant headache and feel spaced out and still like I'm in a simulation.
Will the medication take that away?

Because I don't feel right I'm on edge in going to have another seizure any minute. It's awful. I feel so down emotionally and scared.

I went out today with a friend and visually it was like I was watching the whole interaction through a screen.

It's awful. What if this never goes away? I can't live the rest of my life like this cognitively. If this is what my future is then I'm fucked as I can't do 50+ years of this as my reality. 😢

I promise you won't feel like this forever. It does make you hyper aware of when something feels strange in your body but when that fear doesn't end up in a seizure you begin to realise it's just nervousness. I'm not diminishing the fear but just showing it doesn't always mean a seizure is coming.

I have an Apple Watch with emergency contacts on but tbh it's rubbish at alerting at the right times! If I'm at home on my own I've always called my husband after and given that I can't explain what the hell happened and making no sense he knows what has happened.

It's a really long adjustment period psychologically so go gentle on yourself

@Epilepsystruggle I can feel how frightened you are. I was diagnosed at 18, it came completely out of the blue. I felt very wobbly until I started medication.

I was referred to the Epilepsy Nurses at my hospital and they gave a lot of support and advice, especially with things like contraception. Does your hospital have an Epilepsy Nurse service?

Once you are settled on medication you will start to feel less frightened and more in control. I'm sorry for you that the Consultant has just left you hanging like this with no support or advice. Have you tried to call their secretary to push for this letter to be sent urgently? Or would he do a private prescription to tide you over?

Epilepsy Action have a good website and I'm pretty sure they have a helpline.

https://www.epilepsy.org.uk/?gad_source=1&gclid=Cj0KCQiAkoe9BhDYARIsAH85cDOMrILRriNxNElpbzUyVPu4TB7bhT3A8Aan0QoDqZ5xg8PqPsFEtQwaAn7uEALw_wcB

Epilepsy Action. Just checked and they do have a helpline.

Thanks for the further replies guys.

I have a banging headache and my brain feels permanently foggy. I've just taken some cocodomol and my brain feels like it's inflamed.

I'm constantly petrified I'm going to have another seizure. Every headache and every dizzy spell I think 'is this it?'

I'm finally on medication. It's lamotragine and it's slowly being increased week by week. So I'm not at 'working' dosage yet. So still very much at risk.

I feel emotionally a bit better. Some different friends have popped over this week and 'taken me out' for lunch as I can't drive and it's cheered me up massively.

Ive found a watch thats for seizures that's by the same company that do 'embrace' watches. They are very expensive but I'm hoping that maybe I could get a funding grant for 'access to work' as my job involves being out and about in the community and lone working.

Not sure if anyone else has ever applied for this?

Thanks for the support on this thread guys.

I don’t have a seizure watch, but my teenage DD has made me a shortcut button on my iPhone that writes a message to my husband to tell him when I’m having a seizure. I’m hoping that now I have an idea of what to look out for that I will have fair enough warning to press it.

My daughter suddenly started having seizures this year. She got the diagnosis the day before her 15th birthday . It’s being really difficult getting the balance with teenagers wanting freedom and being terrified of her having a seizure when I’m not there. So far they have been soon after waking. they last quite a long time ( first one was 15 minutes and utterly terrifying)

howdo people cope when their teens have it?
I haven’t been leaving her on her own at all but have now got seize app on an Apple Watch for her….

Sorry to hear that. My daughter had her first seizure at 14 too. She is 27 now. Her seizures more or less stopped when she transferred to adult services and was put on sodium valproate- up to then she was on lamotrigine and keppra, but the sv has really worked for her.

Our daughter had seizures mainly around 7pm and we had to tweak when she took the drugs, waking her at 6am so she had the drugs at 6am and 6pm so they were in her system for her danger hour.

We never left her alone in the bath or shower. One morning she took a bath and did have a seizure, even though she hardly ever had morning seizures - it was absolutely forbidden for her ever to be in water alone. We had to haul her up out of the water while she was fitting, it was awful.

She has epilepsy pillows to sleep with and she wears a medical alert bracelet.

Our daughter has a moderate learning disability and was at a sen school and got transport there and they were very switched on but in fact she never had seizures there.

Much harder if your daughter is more independent.

Have you considered applying for dla? Our daughter still has absences and can't do lots of things. She can't pour boiling water for example. She needs much more supervision than most. And the drugs make her sleepy and make her hands shake.

Hope you get good advice on here x

Hello I got diagnosed with epilepsy when I was in my early 20’s I’m now 31 the flashbacks are like Dejavu if that’s how you spell it I get that too I also get the feeling of not being in the room like I’m floating when that happens it’s like everything around me shuts off and I’m in my own world what your experiencing is what my epilepsy nurse calls mini seizures and yes after them you feel really shit like you need to sleep and sometimes like your coming down with the flu your not alone and it’s just the ugly side of epilepsy I’m curious as to what contraception I can use I’ve spoken with the dr that deals with that kind of thing and even she’s not sure I wanted maybe the implant but I’m on 175 of lamotrigine twice daily and 1000 of keppra twice daily I’m currently on the depo but makes me want to kill my partner if he comes near me at all I’m rejecting him constantly it’s completely killed my sex drive