Epilepsy Support Thread

[Ostryga]

Hi all! Hopefully this will be a safe space to discuss the highs and horrible lows of living with epilepsy on a day to day basis. Somewhere we can support each other through a really difficult and misunderstood condition.

Great thread - thank you for setting this up.

Maybe we could introduce ourselves a little?

I had my first seizure (tonic clonic) when I was 16 years old and diagnosed shortly afterwards. I had seizures 3-4 times a month for about 5 years but they stopped in February 2006. I was on Lamotrigine 300mg a day at this point.

I then went 13 years seizure free until they suddenly started again in August 2019.

I had seizures for 18 months whilst my Lamotrigine doses were increased and Keppra was introduced and they stopped again in December 2020.

I then went another 2 years and 3 months without a seizure but I ended up in hospital last month with non-convulsive status epilepticus. It came out of nowhere.

So I’m back at square one again.

Prior to the last two seizures (which were complex partial) I have always had tonic clonic seizures.

It feels like the last 4 years (after my 13 years of being seizure free) have all been about my epilepsy and all the stress, anxieties and fears that come with it, and I can’t ever imagine being in a positive frame of mind again.

I have two children (aged 5 and 9) and my epilepsy remained controlled during my pregnancies, although I did require numerous dose increases as my blood volume increased.

I’m currently off work (signed off sick) and awaiting counselling to help me with my fears and anxieties and it feels like my life is a mess.

I currently take 500mg of Lamotrigine a day and 1500mg of Keppra a day.

I feel like a sitting duck……just waiting for the next seizure to hit. I can’t even remember who I used to be (during my 13 controlled years) and I can’t see a time where I will be able to live freely and enjoy my life again either.

Having epilepsy is so, so shit.

Glad you found the thread @MyTruthIsOut. Introductions are a great idea.

I had an ‘episode’ at the end of October last year with a sudden stabbing headache (I also had an aura but obviously at the time had no idea what it was) and very quickly felt very very unwell. I was admitted to hospital with a suspected brain bleed. When all my tests came back clear for this I continued having these ‘episodes’. Sometimes none for a week and then I’d have 10 in one day.

My gps treated them as panic attacks, and I was put on a different medication basically weekly to try and combat these. Obviously nothing worked. In January this year I got a tad snotty and demanded a neurology referral.

Within seconds of explaining my symptoms the neurologist said yep! That’s classic temporal lobe epilepsy. I started on 500mg Keppra and have worked my way up to 1000mg as unfortunately they are not controlled at the moment.

I’ve had what I suspect 2 tonic clonics - both came on exactly as my aware seizures do but I woke up very confused and disorientated afterwards. Once with a massive black eye.

I’m currently also signed off work as my seizures are so unpredictable and can happen any time and anywhere. The worst one I was shopping for DD’s packed lunch bits and had an awful one in the supermarket. I had loss of bladder control so it was just awful all round.

Epilepsy is absolutely shit. Like you @MyTruthIsOut i live constantly on edge worrying about the next seizure and will I make it through this time. Because I’m usually conscious during mine they cause a huge amount of fear and panic and I truly feel like I’m going to die each time.

I have a 6 year old Dd and she’s been incredible, and I’ve managed to not have too many seizures in front of her thank god. But it is draining and I’m stressed and anxious all day every day.

Can I ask what your episodes are like? How long they last for and how you feel afterwards? Do you remember them?

Sometimes I have times where I suddenly feel overcome with fear, I feel disorientated, scared, hot, I have feelings of dread that a seizure is going to happen and its just an overwhelming sense of fear. Sometimes I can prevent it from escalating, but on other occasions I have felt so scared that I’ve had to call a family member and ask them to come over.

I am always completely aware they are happening and when it passes, I have complete recollection. I generally feel fine once it’s passed and I’ve calmed down.

I take medication for anxiety and I always assumed these episodes were some kind of panic / anxiety attack, but sometimes I do wonder if they are some kind of seizure activity?

@MyTruthIsOut yours do sound like focal awares - mine start with a ‘warning aura’ - so 10-30 seconds beforehand I’ll have a massive feeling of deja vu and oh fuck it’s happening again. Then during them I get a massive rush, almost like I’m going down a vertical drop on a rollercoaster, then intense panic and fear. I usually pace, am slightly weak on one side and chew my lips/tongue. I am fully aware and can talk through them. Some of the bad ones I can’t, but I don’t remember those it’s only if someone is with me they notice.

I've just found this thread. It's a great idea to set one up! All the others are years out of date.

I'm due to have a c section tomorrow 😬 for my first. I have tonic clinic seizures that are triggered by lack of sleep/ stress etc. If anyone else is a mum, how did you cope with lack of sleep in the early days? I'm terrified of dropping the baby!

Hi Optimus.

How exciting about tomorrow!! I remember going into hospital on the morning of my c-section and I was unbelievably excited to think I was going to meet my baby that day! Both my babies were born via c-sections.

How has your pregnancy been? I was on Lamotrigine during my pregnancies and had to have blood tests every 8 weeks to check my drug levels and have my medication dosage increased as needed. I then had to have further blood tests 48 hours after delivery to make sure my drug levels were stable.

I was seen very regularly by my epilepsy nurse during my pregnancy and although my epilepsy was controlled she advised that after the birth I not be alone with the baby for the first 6 weeks as that’s when I would be most at risk of seizures. It means my parents and my in-laws had to take it in turns to sit with me between 8am and 5pm (when my husband was in work) every Monday to Friday for 6 weeks. It wasn’t ideal but we came through it.

During that time period I would get whoever was with me to carry the baby up or downstairs for me if needed. Generally though I had no reason for the baby to be upstairs unless it was bedtime and then my husband would carry him up to our room.

I was also advised never to use a baby sling.

I also made sure I always had my SOS necklace clearly visible when I went out and about so I know that if I were out alone with the baby (baby in it’s pram for example) then my husband or other family members could be contacted.

I was absolutely terrified that sleep deprivation would trigger seizures but I remained seizure free during both pregnancies and after both births.

That's really good to hear. Fortunately my partner is having a month off work and then managed to wfh for the majority of the week from then on so I don't need too many relatives staying over.

You're really lucky that you were given given so much advice! My epilepsy team seem to know nothing about pregnancy and my pregnancy team known nothing about epilepsy so we're trying to piece the two together! I'm on 200g zonegran and clonazapam atm. I had a seizure around 32 weeks so they put me up another 100mg. But no blood tests- they just get insisting on eegs, which I refused as I felt like it was more for them and would probably trigger a seizure ( I hate eegs!)

I'm really worried too and just trying to take it day by day. Thanks for your advice, its really helpful and made me feel less anxious. Youfe right-limiting the amount of time I carry her will definitely make things safer.

@OptimusPrime31 welcome! Glad you found us.

Hope everything has gone well with your csection and you’re recovering well with your new family! Let us know how you are when you’re feeling up to it.

I’ve finally convinced my consultant to get me in for an MRI. I’ve had a CT but it was a quick A&E job with no contrast and the sudden onset seizures in my 30s are obviously causing a tiny bit of stress! I have a lot of head pain and pressure in the area my seizure originate, and I just want to know for certain there’s not little tumour or weird veins causing havoc.

Im starting 100mg twice a day of carbamazepine on top of my 1000mg of keppra so here’s hoping!

@MyTruthIsOut how are you getting on? All ok atm?

my youngest child has a severe epilepsy disorder ( genetic ) and has v complex needs as a result. We see all sorts of seizures from absences right through to tonic clinics and he can have numerous ones on a bad day. He is 9 next week.
We take each day as it comes and relish the good days with few seizures as much as we can.
We have had good results with the ketogenic diet and medical CBD . He also takes clobazam and lacosamide and has been on pretty much every epilepsy med going .
So I concur that epilepsy sucks !
@OptimusPrime31 . Hope all went well.and congrats to you x

Hi I've got poorly controlled photosensitive epilepsy x

I’m so sorry to hear your son goes through this! It’s rough on me so I can’t imagine it as a child.

Are you ok? I find that when you have a sick child it’s hard to find support for yourself. I will say we’re here and we all get it and please vent or anything else. Epilepsy is such a shit thing to go through, but I’ve found support helps. And welcome to our little safe space!

Welcome! Glad you found us. How is everything with you at the moment? Poorly controlled epilepsy is the absolute worst, if you ever need to talk I’m here x

@Ostryga
Thankyou for the warm welcome.
Seizures are v much our daily life now and we just crack.on with it day to day. But it is nice to connect with others with the condition to share experiences and support so thanks for starting this thread x

Good morning, thanks for this thread.
I agree epilepsy is awful: my daughter was diagnosed in 2020 ( not Covid related ) at the age of 23. She had her first tonic clonic in front of us at home- terrifying.
Until EEG diagnosis of left temporal lobe epilepsy I was scared to death it was a brain tumour so, I suppose, it could be worse.
She is on Lamotrigine which is being gradually increased each review she has… as she still seizes quite regularly.
But, it scares me to death. I am constantly thinking the worse- what if she falls down stairs / what if she fell into the road / what if she was abducted and couldn’t get her meds-! What if, what if … and although some of my fears are irrational, some of them aren’t and I wonder how other mums cope with this.
I can’t tell her or DH how I really feel as I don’t want my fears in their heads too. ( may already be in there but I don’t want to add it if not).
It’s not all about me ( this sounds like it is) we support her as much as we possibly can and she is a trooper but it really is getting her down although she puts a brave face on.
I just feel on the edge of panic and tears a lot of the time.
Thank you sorry such a long post.

I’ve been having a really bad few days lately. I hate, hate, hate having this really shitty condition. I hate the way it controls everything.

I just want a normal life 😢

Hi everyone,

I’m due to have my first baby by planned c section tomorrow and have had a bit of a rollercoaster pregnancy with worries now about feeding and caring for the baby while trying to avoid a seizure and recover from a major op.

My seizures started nearly 10 years ago now and as they were mainly focal aware seizures, it took a long time for them to be correctly diagnosed so after hundreds of focal aware seizures and about 4 tonic clonic seizures, I was diagnosed and started on 150mg lamotragine and have been seizure free since. Most of the seizures took place at night when falling asleep or during sleep with a few focal during the day as they were increasing with time and no treatment.

I’ve considered myself really lucky in having controlled seizures (for about 5 years now) and it was only when I became pregnant that my epilepsy has become a worry again and brought up all sorts of emotions. My medication has increased in the pregnancy and I have been given conflicting advice over how to manage breastfeeding and getting enough sleep (I.e. epilepsy team recommended formula at night from partner but lactation consultant told me it’s important to keep supply going in night to avoid infection). I’ve been told to follow all the safety advice about not feeding alone, not using sling, etc. which I’ve found hard because my seizures have mostly all been at night and only a few focal aware during the day. I’ll be on a ward in the hospital and am particularly worried about having a seizure without the support of partner at night, again being given conflicting reassurance about the availability of midwives at night due to short staffing. So I feel like I’ve been advocating for myself as much as possible but have a very unclear feeling about my actual level of risk and how I’m going to manage everything. I was only told about the c section 2 days ago so it’s a big adjustment in terms of mental preparation as well.

For context my mum also has epilepsy (tonic clonic) and had to stop her meds in pregnancy. She had a seizure while feeding me on the ward (which no one noticed) and after breastfeeding for 3 days bottle fed and went back on meds. So I know her epilepsy and situation were very different but part of my fears are probably related to knowing what her experience was, even though a lot has changed since then and I’ve had much more support from an epilepsy team throughout the pregnancy, which was not on offer for her when she was pregnant.

I’d really appreciate any advice or hearing experiences of others to get some idea of what to expect or what has helped for other people in similar situations. Thanks so much in advance!xx

Hi everyone. Great thread.

I suffer from epilepsy as a result of a brain tumour ( fortunately benign). The first seizure I had , the doctors thought it was a tia but the brain tumour hadn’t been discovered at that point .

I last had an episode at the end of November and I was hospitalised because of a suspected brain bleed . I do feel the seizure coming on . I have an overwhelming sense of panic , my head turns to the side and my eye starts to twitch and my face goes numb . I can’t speak.

After the seizure, I talk gibberish or stare into space . That can last up to about half an hour or so.

I take 1000mg of Keppra and 1000mg of Epilim a day .

The anxiety is dreadful. The thought of a seizure in public is always at the back of mind . Every day is a potential seizure day .

Sorry that this is so long . It’s good to to be able to talk to people that actually understand how epilepsy can impact on your life .

Hi everyone, wondering if anyone can offer any advice. I've had temporal lobe epilepsy for over thirty years, still have seizures despite brain surgery and take regular anti convulsants. I downloaded the NHS app last night and it had all my letter and test results etc on, one of the recent letters from the specialist nurses to my GP stated that I had had recent seizures and that amongst other advice, she had given me advice around SUDEP.... well she didn't! What's the advice around this does anyone know? I'm worried now I should be doing something lifestyle wise or medication wise to reduce this? I've got young children and this has really worried me

Just wondering if this thread is still going? Would love to connect with others going through the same thing :(

Hi, I haven't been on this thread before but saw this thread pop up in Active and thought it was a great idea, so hi 👋🏻

I started off with absence seizures (now controlled by (keppra), but I also have a brain tumor affecting my temporal lobe and causing seizures there, which isn't controlled (yet 🤞🏻).

@iwentjasonwaterfalls so sorry to hear you are going through something so tough. I had a tonic clonic seizure at 35 whilst at work completely out of the blue, then another afew months later. I have been put on Lamotrigine and fingers crossed no more seizures so far but I am petrified of having more. I have been feeling increasingly low and isolated because of this and wanted to reach out

Hi yes I’m still around! Still suffering with epilepsy, completely dispise it.

Happy to chat through anything. It’s always good to have other people going through the same thing, epilepsy is such a misunderstood disability I find. How are you doing today?

@Ostryga thank you so much for replying. I agree it's very misunderstood and sometimes the impact it has is very underestimated. I had an out of the blue tonic clonic seizure one random Thursday afternoon at work and my life has never been the same. They found a cavernoma on the mri which is being monitored but I live in constant fear now. I have been put on lamotrigine and just hoping this keeps them under control. I had to surrender my drivers license which is a big blow and I'm feeling so sad and isolated. I was reaching out to see if anyone else has really bad days like me :(

Oh love, I get you 100%. My anxiety since developing epilepsy has ruined my whole life. I have uncontrolled aware and complex seizures and the fear I have - every single unusual thing my body does sends me into a spiral of panic. I get it.

If lamotrigine doesn’t get them 100% under control ask about clobazam - I take briviact, carbamazepine, keppra and clobazam and the clobazam was a game changer even though it doesn’t control mine 100%

I have bad days so often now. Developing epilepsy has ruined my life and I can see you feel similar. Honestly I’m here if you ever want to vent.

I’m 50 and have had epilepsy all my life. It’s known as drug resistant. I didn’t always find it so impossible but it has got more bloody irritating over time. I can’t really explain all of my feelings connected to it. A lot of it has to do with other people’s attitudes or reactions to the condition.
It’s really not just about the seizures, though, is it?
it is all the other crap that comes along with it. Trying to explain that even to the closest people to you becomes or feels like an impossible task. And feeling like a burden or an inconvenience to friends, family or just anyone you might come into contact with at whatever level.
I don’t let it hold me back but it always manages to slide its way into my life, tapping on my shoulder when I least expect it. Fucker.