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.

Im sorry to hear you are experiencing this.

my DH has had epilepsy since a serious motorbike accident many years ago so there is a reason for his but i do know others who have just experienced it out of the blue for no obvious reason.

the national society for epilepsy have a lot of information online and will also have help lines you can speak to.

it may go away or hopefully you will find a medication that works for you - but dont give up. My DH has tried every medication going over the last 40 years but nothing stops his completely - but many people do find a medication which stops the seizures.

Not epileptic but maybe look up some common postictal symptoms, they sound like what you’re experiencing and can last days unfortunately

Im sorry you’re going through this, it must be so hard

It can take my children hours to days to recover from a seizure depending on the severity. Your body has been through a lot, make sure you rest and take it easy x

Yes this can be normal after a seizure. They have symptoms coming and going. The meds usually help. Don't panic - it is normal to feel sort of dull and on edge but it is all quite treatable. Grab any help and support you can get and best of luck.

Im in a very similar boat. Had my second seizure yesterday. All tests were clear after the first seizure last March, but a second seizure seems to mean a diagnosis. I’ve been prescribed lamotragine. I’m in denial tbh. Might think about contacting a support organisation later in the week. Have reported in sick to my job for the next three days as I know I went back too quickly after the first seizure.

it does feel v weird to have a diagnosis so late in life - I wonder whether it may be linked to the menopause (I’m in mid 40s) but I guess that might not be the case for you.

Just wanted to give you a bit of a shoulder squeeze - you’re not alone.

Sorry to hear that. My daughter had a seizure out of the blue aged 14 and had them regularly til she transferred to adult services and they added in sodium valproate on top of her lamotrigine. Now she has the odd break through absence but no seizures but tbf it can take a while til they get the meds right. They don't like putting women of child bearing age onto sodium valproate btw but bear it in mind to ask about adding other drugs in if the lamotrigine doesn't work on its own.

My daughter would be confused for hours after a seizure and then sleep for most of the day.

I suggest you order an epilepsy pillow. Get a medical alert bracelet. Try not to be on your own. Don't use hot liquids. Make sure someone is outside while you bathe or shower. If you are photocsensitive close your eyes as trees flash past in a car etc with the sun behind them. Good luck x

My son was diagnosed with epilepsy out of the blue when he was 14. From what I’ve read (a lot!), yes your brain has been through a trauma and needs to recover. I’ve read about it feeling like it’s been in a washing machine. Take your time to let it recover.
All meds have side effects and it will take time to get used to them - we’ve been told 6-8 weeks to get used to them and that’s always been correct. Careful about alcohol- not usually contra indications to meds but if you have too much, you may be sick after meds, forget to take meds etc

Things to think about - an epilepsy breathable pillow in case you have a seizure when you’re asleep. Some sort of device to alert others if you have a seizure - my son has an embrace 2 but others use an an on an Apple Watch.
Bathing alone isn’t recommended, make sure your DH is in earshot.
Bike ride/swimming/climbing alone isn’t recommended.

Sorry you’re going through this, it’s rubbish BUT since my son has been diagnosed, 3 adults I know have told me they have epilepsy. All three have professional jobs and entirely normal lives albeit on medication.

My DD has epilepsy and whilst I can't add anything to what's already been said here, I just wanted to add support. First seizure at 17 - completely out of the blue. So sorry you're going through this

Thanks for the replies so far.

The way I've been feeling since the seizure is worse than the seizure itself. I literally feel like I'm in a simulation and nothing feels real

From what's been described to me is that is was a full blown tonic clonic seizure.

It's completely out the blue and my family has no history.

The neurologist diagnosed me but didn't offer anything further in regards to life now, not even a leaflet.

I have 2 babies that need looking after and are completely dependant. Am I safe to look after them without supervision? My husband is working from home until we can sort something so I'm not on my own incase I seizure.

Realistically I can't be with another adult 24/7. I'm a working mum of 2.

I've accepted ive lost my driving license for now which is a ball ache and completely impractical to my life but it is what it is.

What do other parents with epilepsy do? At the moment I'm either with my husband or my mum but we need to find a new normal and I can't find any solid resources online with clear answers.

Even if I were to take them out on the bus there's the risk of seizing in public but at least the general public would hopefully help if I had a full on fit with a double buggy on the bus/street.

I asked the neurologist what to do and she said 'just don't ever be alone with the kids'. Ermm? That's not possible! They are in my custody. I can't opt out of everything solo parenting them for the next decade until their old enough to call for help.

If anyone has any advice or links to any resources then please let me know.

I can only suggest you apply for PIP and use the money to help fund someone to help you in the house.

I understand, it’s life changing at the minute but it will get easier. Once you’ve started meds and are tolerating them, the risk of seizures should reduce. If hot, there are plenty of others to try. Most people achieve seizure free - my son is one if the unlucky few who won’t but his current cocktail has kept him seizure free for over a year now. The adults I know with epilepsy are seizure free, look after their children, work, drive etc. But this stage is awful for you.

Young Epilepsy has been an incredible support for my son - lots of generic advise on there but mainly geared to under 25s.
Epilepsy Action https://www.epilepsy.org.uk/living/safety has lots of information.

Thank you for the link @MyNameIsErinQuin x

@Arran2024 from what I've heard over the years about PIP it's almost impossible to get. I've seen severely disabled people in a wheelchair with a carer get turned down and have to go to tribunal. So I'm guessing I wouldn't stand a chance as a working mum of 2. Although the money would actually help I'm regards to paying for assistance, a seizure alarm, safety adaptions etc.

It's a nightmare. My life has changed. I just pray this medication works and I never have another.

Please apply for PIP. I was told DD would get it for Epilepsy immediately and it was awarded.

I had my first seizure age 2 hours, my 2nd - 5th aged 10 to 12 and am 43 with none since - it's weird (no medication). I'm sorry you are going through this. Could you be in early menopause or peri-menopause? It's a little early, but not impossible? I'm sure my 2nd and 3rd seizures were linked to puberty. I think I would risk being on my own, but there is no way I'd have been alone with my kid if I still had them. Not until he was old enough to be ok if a had a seizure anyway. Epilepsy Action is really good. Good luck.

Re: the postictal stage, it is very odd. I get deju vu and can't string a sentence together for a week or so.
Re: looking after the kids - we had a buggy with a deadman's handle - so the buggy won't move if I wasn't holding on to it. We always changed the kids on the ground floor to reduce the amount of times I had to walk up and down the stairs holding them. And I expressed milk so my partner could feed them at nighttime.
It sounds like a scary time to get a diagnosis but when you know the pattern of your seizures it gets easier - feel free to PM me.

Apply for pip! You can truthfully say you need supervision in most categories. In addition you automatically qualify for a free disability bus pass on the grounds you aren't allowed to drive, you should get some sort of letter to send to the dvla to surrender your driving licence too, you need ti report it legally.

I have a friend who brought up his dc as a single dad (their mum died when youngest was tiny) who is epileptic, can be done. Be optimistic on this front.

My dd has a bracelet with contact details and the fact she has seizures on it, thankfully she's been seizure free for a few years now

Hey OP,
im 29 and epileptic. Have tonic clonics and just came on from the age of 20.

The feelings you are having after a seizure is also very normal for lots of people. It takes around 10 days to feel back in my head.
I take medication now and have a tonic clonic once a year or so.

Have seen you have two children. Make sure you get as much sleep as you possibly can as sleep deprivation is a huge trigger. I first had my tonic clonic when my daughter was 4 months old and all the night feeds were exhausting me.

Do you notice any sensations before your about to have a seizure? In a sad way the more I have the more I know I’m going to have one, so get a good few hours warning now which includes tasting metal and have electric shock feelings go up my neck.

im not entitled to PIP either and ive appealed it several times, but luckily my eldest is 10 now and I wear an Apple Watch that will call emergency contacts if I have a hard fall or heart rate goes crazy. Maybe worth looking into?

It depends on how you fill in the pip form.

For epilepsy it should be relatively easy to get the points you need.

For example, under the category "help with bathing" you explain that you need someone to be there with you while you shower or have a bath.

For mobility you explain you can't go out unsupervised. You can't drive and you can't use public transport unsupported.

For preparing a meal you explain how you can't handle hot dishes, hot liquids, can't be near knives. Imo you should get 4 points here.

For engaging with people face to face you explain that you need to be accompanied when you go anywhere, like the supermarket.

You don't get PIP for having epilepsy- you get it for the effect epilepsy has on your life.

Here are the descriptors https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

If you get PIP, someone could possibly claim carers allowance if they support you eg your mum (if she is below state pension age and has earnings below a certain level). My brother gets it for looking after his wife.

Thank you for your replies!

@stichguru funnily enough I have been on my period both times I've had a seizure so I do believe it could be hormone related. What blood tests would I request, do you know? Menopause isn't out of the realms of possibilities so worth checking.

@LoveCandles thank you for your reply. It's awful isn't it.
I've noticed both times just before the seizure I can't get my words out or I say words completely different to what I'm thinking. So if that happens again I'll lay on the floor on my side.
What did you do about looking after your son with your seizures?
I don't know how I'm going to manage both my babies on my own but my DP can't always work from home. It's just not practical or realistic.
I have an android so no apple watch unfortunately as I don't think it'd work with my phone.

I've tried to look up other smart watches but can't find a seizure detector one for android.

Luckily I would know hours before or if I was really tired in the morning and just felt extra out of sorts I would have a family member stay with me.
My partner has had to leave work on occasions if I feel something coming on.
are you having absense seizures too? They are usually a really good warning for me.

Every seizure I’ve ever had has been whilst on my period, or had an illness/cold/covid.

once you start meds, make sure you don’t forget any dose, as one missed dose has caused me to have a seizure twice.

my daughter has just been diagnosed with absense epilepsy and we’re currently going through DNA genetic testing.

Ive also let my neighbours know and nearby friends etc that if I ever message to say ‘fit’ or something very strange (as can’t always formulate a word before it happens) then they know to check on me.

on your phone set up your medical ID and emergency contacts if it happens out and about.

Hopefully the medication can get yours under control! They can cause some side effects of feeling like you’re floating through life and affect concentration but it’s the best thing. Maybe see if you can get panic buttons put in?

@LoveCandles thank you so much. Your the first person with epilepsy I've spoken too and this is greatly beneficial.

Where do you get panic buttons? I can't seem to find any online other than one that only works within the house to alert someone in the house with you.

I'm considering going on the pill to stop having periods.

I have both a cold and I'm on my period and this has been the case this time and last time.

I've been chasing the GP and consultant all day to get my medication sorted. Apparently the GP can't prescribe it without the letter from the consultant. The consultant isn't in work until the end of the work to sign the letter typed up by the secretary.
So I'm without medication and worrying I'll have another.

Does life feel limiting? Do you drink alcohol at all? I've heard that can cause seizures. I'm not a big drinker but do enjoy a glass of wine when out for a meal with friends or on my birthday etc.

I've been prescribed lamotragine. Have you ever taken that one?

Hi OP. My epilepsy started out of the blue in my early twenties much like yours. The post seizure symptoms you mention are normal. It can take some time for your mind and body to recover - it usually takes me a few days. I have a generalised tonic clonic seizure only once a year now but it has taken a long time to get the meds right.

My periods were also considered a trigger (it's called Catamenial epilepsy) and we tried hormonal contraception, and using stronger meds just in the days before my period, it helped a bit but wasn't enough. Worth considering though.

One recommendation I would make is dont be shy about questioning your neurologist, asking for more info/opinions and further tests if you are unsure about anything. After years with one neurologist and getting no where I found out he wasn't even an epilepsy specialist. After seeing another neurologist privately I was told I could ask my GP to refer me to a specialist, or even better a specialist epilepsy clinic (I had no idea this was an option!). See if there are any hospitals with epilepsy clinics near you and do plenty of research. I am lucky to live in London and have UCLH who have been amazing since going into their care.

I now have a young baby and despite being nervous about being on my own with her I have gotten used to it and put measures in place to make sure we are safe. You will learn to recognise the warning signs and feel more comfortable with time.

Sending all my love. Please do dm if you want to ask anything xxx

No experience of lamotrogine here but make sure you don’t pay for it! Epilepsy meds are free of charge as are other prescriptions when you have epilepsy. I guess there may be some paperwork for adults?
www.nhs.uk/medicines/lamotrigine/about-lamotrigine/

I had no problem with Lamotrigine when I took it, but do note that it can make hormonal contraceptives less effective (as can other epilepsy medicines). I was not warned of this by my neurologist and only found out a year later when going to have my implant changed! The nurse was fuming with him.

I have nothing of value to add but I'm sorry to hear this. I have complex partial seizure which presents as an aura followed by a loss of consciousness with no warning and this started in my mid 30s similar to you! I am fortunate in that the medication worked which means Ive been seizure free for almost 30 years. The weird deja vu dreamlike state is absolutely normal, unless you've experience it its hard to describe. Hope you get some medication soon and it leads to a positive outcome.