Had a focal seizure today and now feel utterly crap

[fortifiedwithtea]

I have left temporal lobe epilepsy. For anyone who doesn’t know what a focal seizure is, its a partial without loss of consciousness.

I’ve not been well for weeks with a chest infection. Huge family fallout on Boxing day at my mothers . Adult dd1 left in tears.

I have tried not to be drawn into it all , I was there dd1 did the best thing by leaving.

Today my mother phones insisting on a post mortum of the evening and I had to defend dd1 and tell my mum if she feels the day was ruined its on her. She said a very nasty thing. My mum has form for being nasty out of the blue but its the first
time dd1 has been on the receiving end.

Fast forward a few hours. Everyone else is out and I get a seizure. It started with an overwhelming feeling of dread. Felt nauseous. Rang DH , my speech is now slurred. DH asks me was I somewhere safe? . Nope I was in my workroom. Told him I would try to get to our bed in the next room. By now I have uncontrolled blinking. Make it to the bed. DH tells me to stay on the line and he would come home. Next follws finger twitching and I can no longer speak through it. Seizure comes to a head with shaking down my left side. Felt dazed wasn’t sure at first if I was finished or there was more to come.

I don’t know how long ago that was , a few hours ago I guess. Tried to resume work but couldn’t. So now lying on my bed . First seizure for a few months and considering it was only a partial feel really rubbish.

Gp appointment tomorrow about my chest infection will mention it then.

Thought I’d give readers an insight into epilepsy. Usually people have only heard of tonic clonic or absences. But there is whole variety out there

I'm so sorry to hear of the anxiety this no doubt caused you.

I am really really grateful for the insight though. One of my children randomly developed TCs at night and after a lot of pushing on my part we got past the slow paced tests with an edge of dismissiveness of the medical staff we encountered and secured epilepsy diagnosis and medication. She has focal epilepsy and we realised she was having seizures during the day but we'd dismissed them as tics

My younger child has been experiencing what I thought was tics but they've worsened and I now strongly suspect epilepsy so I'm going to push for an EEG

My eldest experienced horrendous anxiety out of the blue before showing signs of epilepsy and even though her seizures have stopped she still battles daily anxiety and associated nausea which I now see is linked to it all.

She had outbursts of aggression and rage which we now also know can be auras but it's complicated by suspected autism (bit of what is affecting her and causing the mood swings...sensory overload or epilepsy).

My youngest has suspected ADHD/ODD and potentially ASD and shows signs of anxiety so I now feel history is repeating itself.

I hope you get a break from seizures now and stay safe

The insight you've given has made me understand the mood swings more as I have noticed patterns with anxiety or aggression flaring and had heard they can be auras

@Seekingwellness route to diagnosis can be a long one. My gp sent me to a neurologist when I was 11. Unfortunately he was not convinced and discharged me saying it looks like epilepsy but I don’t think it is. No tests what so ever. I didn’t get diagnosed until I was 39 . I happened to be taking my youngest to a hospital apt and collapsed in the clinic. Got admitted and had the good fortune to have a seizure whilst having an EEG. I am now 55.

When I discovered I had epilepsy it took some adjusting. I lost my driving license and medication took awhile to get right. I joined Epilepsy Action which was a great support. They have an online forum called forum4e. You don’t need to be a member of EA to join. Its for carers as well as people living with the condition.

Good luck and feel free to pm any questions

Thank you for sharing this. A long-term ex-partner had epilepsy and it was one of the most scary things I've ever had to deal with. So sorry to hear you are feeling so pants

Thank you very much. I would like to gather some thoughts and ping you some questions actually as I found your post really good to see the progression broken down as I don't see that side for my children and my eldest struggles to explain things

Thank you

That's absolutely disgusting that you have been undiagnosed all this time but sadly is so common from what I've seen and experienced. Our epilepsy nurse (who I self referred to because it wasn't forthcoming) explained that although her seizures weren't developing into TCs in the day, they were likely affecting her memory and concentration. When she began on meds we did see some improvement (though not enormous). I wonder how much you were affected and will never know ☹️

@EatSleepRantRepeat I can imagine it’s horrible to see someone close have a seizure. My youngest was 3 when my epilepsy resurfaced. She used to hide and she has SN. .

@Seekingwellness my epilepsy was bad during puberty , particularly around 11-12 when I had a huge growth spurt. With hindsight it was always there simmering. People have always said to me what are you looking at? What are you thinking? When really I had just zoned out. Eyes rolling , so only the whites are visible often grossed people out but I had no control and certainly wasn’t doing it deliberately. Interestingly the midwife looking after me during my first labour noticed the eye roll. She told me I did it with every contraction.

My sixth form class tutor put on my school report Fortified is vague in the most pleasant way possible. Never understood that and wish I had asked him what he meant by that. Perhaps I was momentarily away with the fairies more than I realised?

Yes concentration and memory really hard. I am a visual learner. But had I been diagnosed I doubt I would ever have learned to drive. I might not have moved out to where I did and not met my husband. I don’t regret not being diagnosed earlier. Bit bloody scary I was driving all those years though.

Happy to answer your questions.

@fortifiedwithtea I couldn’t read this and not reply… I also have temporal lobe epilepsy and I know how terrifying it is, and how rubbish you feel after a seizure, so sending you all the well wishes. I think there’s a misconception that you can seizure and be right as rain a couple of hours later but it takes me ages to recover!

I hope you feel fully recovered soon.

On a similar note, I had my first seizure age 20 and it took me 11 years to get diagnosed….

My situation is somewhat different as I have recently been diagnosed with a brain tumour which causes seizures, most of them absence seizures but a couple where I've lost consciousness and fallen. I have no warning and tend to be confused for a short time afterwards and then ok.
I do tend to get them when I'm tired and stressed, so towards the end of the day and end of the week.
I've been getting them on average every couple of weeks but have now gone three and a half weeks so I hope the anti epilepsy meds are kicking in.
It took a while to get my head around it, so to speak. Stopping driving has been especially hard for me, as has been the negative response of my employer - a GP surgery which tried to terminate my contract before hastily backtracking when they realised they'd be in breach of disability discrimination laws. However I'm on a temporary contract and doubt I'll be kept on, due to this, so I'm already starting to think about my next step. Do you work, Op, or other posters on here?

Just wanted to say I know how awful it is to feel after a seizure. Take care of yourself & be kind to yourself. Plenty of rest and hydrate. I have tonic clonic seizures and once a seizure is over I feel like I've been hit by a bus. It's horrible, so sending you lots of kind thoughts 💐

I agree - focal seizures are hard to describe and all very different.

One thing I find frustrating is that people at work, managers especially, always assume they are triggered by stress, so sort of handwave them kindly as not coping with pressure. They can be, I suppose, but mine are triggered by shadows, probably hormones, and who knows what else...

You are talking about the post-ictal phase (after the seizure) when you are still undergoing physiological effects, so aren't yet really recovering. It can be worse than the seizure - often is for me. Thanks for raising awareness and hope GP can help a bit.

Sorry to hear you are experiencing this.

@Seekingwellness I'd be interested to hear more about your dds experience. My dd had 2 focal seizures when she was 9 and suffering from a mild viral infection. Her left side completely seized up, her hand and foot on that side clawed up and shook in the air for about 30 seconds. She was conscious and screaming throughout. We went to hospital where she was referred to the neurologist. They put her on new medication for abdominal migraines which has been previously diagnosed and helps and she had an EEG, a sleep deprived EEG and a long EEG. All snow epileptic tendencies and anomalies but no formal diagnosis. She is now 11 and has not had another obvious seizure but has been experiencing severe anxiety for about a year now. This causes what she calls a tight chest and they can occur several times a day. This came out of nowhere. She also tends to be a bit dizzy as in she misses part of the story or fails to follow a tv programme or conversation. This is usually put down to a lack of focus or just a dizzy personality. Wondering if it's more to do with epilepsy??

@Papergirl1968 that is very shitty of your employer.

Going back to when I was 39 my children were 3 and 7. I was working weekends in a call centre for a national catering supplier. They paid me for six months and then terminated my contract. Seizures were very regular at that time. It impacted my life a lot at that time, I couldn’t even get my daughter then daughters to school. My husband took them to a child minder to get them to school in the morning and school transport brought them home in the afternoon.

Last few years I have been trying to establish my own business. I am a costume maker for a specific sport. Hence spare bedroom is my workroom. I don’t earn enough to support myself . Its purpose is to give me a sense of self worth and nothing beats seeing my costumes in action and I like to follow the progress of the athletes who wear them.

@BigHeartyTruffle thank you. You will understand why I said I was lucky to have a seizure during EEG . You’ve had a long journey to diagnosis too.

@Papergirl1968

My situation is somewhat different as I have recently been diagnosed with a brain tumour which causes seizures, most of them absence seizures but a couple where I've lost consciousness and fallen. I have no warning and tend to be confused for a short time afterwards and then ok. I do tend to get them when I'm tired and stressed, so towards the end of the day and end of the week. I've been getting them on average every couple of weeks but have now gone three and a half weeks so I hope the anti epilepsy meds are kicking in. It took a while to get my head around it, so to speak. Stopping driving has been especially hard for me, as has been the negative response of my employer - a GP surgery which tried to terminate my contract before hastily backtracking when they realised they'd be in breach of disability discrimination laws. However I'm on a temporary contract and doubt I'll be kept on, due to this, so I'm already starting to think about my next step. Do you work, Op, or other posters on here?

Sorry to hear your employer is being so unhelpful. I work but there is some flexibility in when I can carry out tasks, and my seizures are reasonably controlled.

If you've had a good gap in seizures that's a great sign. Are you in / can you join a union? Many people with epilepsy hold down jobs. Allowing different work patterns is a standard recommendation for reasonable adjustments for epilepsy, because lots of people have morning/ night / evening seizures. So a good employer should accommodate your pattern- maybe a large public services organisation might be one to consider - would NHS be a possible move if you have GP surgery experience?

For mothers of girls read up on catamenial epilepsy. Its epilepsy triggered by fluctuations in hormone levels.

@fortifiedwithtea yup I totally understand! I was misdiagnosed twice (partly because I never had a seizure during tests), eventually I got a diagnosis of “suspected epilepsy” and out on medication and lo and behold I haven’t had a seizure since. I feel extremely lucky that the medication has been so effective but I could have done without the 11 years of being really poorly and not knowing what the hell was going on!

@Papergirl1968 sorry to hear you are poorly and I hope the meds prove effective. Also sorry to hear your employer is behaving so badly. In addition to the excellent advice from PPs I would definitely seek advice from a relevant charity / organisation who should know about this sort of thing - epilepsy society have been a massive help to me in practical matters.

Seizures are awful. I had my first one when I was about 5. Trapped my finger in a fire door which made me faint, I fell back through glass, smashing my head on the concrete the glass was set in and then had a seizure. Don't do things by halves!

I had several after that and for me I got an aura which would be a feeling that started at my feet and if it stopped before it got to my chest I would be ok. Otherwise it would carry on up and my eyes went so my vision was just seeing like an untuned TV screen

Had loads of CT scans, MRI, EEG (pulling the glue out your hair!) and spent around 6 weeks in hospital. They classed it as seizures following a head trauma, I've been clear a long time now. If I ever feel faint though I get so upset and panicky because I HATE the feeling

The biggest thing for me was how tired I felt. It's like you wake up disoriented, feeling like you've been run over, everything hurts and you're exhausted

Thanks everyone for the advice and support. I don't think anyone is in a union at work - it's a very small surgery. But I was about to contact ACAS when they backtracked with terminating my contract, and a couple of friends in HR gave great advice.
I guess a job within with NHS would be the obvious next step, and I'll start to look in the new year.
Here's to a healthier 2022 for us all.

I don't think I've ever had a focal seizure but that sounds scary so sending hugs! I've had epilepsy nearly 10 years and about 2 years ago had a really bad run with it with lots of Tonic clonic seizures. After new medication I'm nearly a year seizure free but have found myself becoming really anxious and stressed about it rather than happy. I'm so scared I'll have more. It didn't help when my 3 year old told me I was dancing in bed the other night now I'm completely paranoid I've had one without knowing! I've never had them at night before and felt completely normal the next morning with none of the usual signs I'd had one but I can't get it our my mind! Sending hugs xx

It may be a bit early on in your treatment, but if you're no longer able to drive could you look into Access to Work payments? In some cases for disability they can assist with things like taxi fees, especially if you can't drive or would be unable to take public transport unassisted. They also offer grants for any specialist equipment you need to help keep you in the workplace. There are a fair few forms to fill in but once you get past those and speak to a human being they're generally quite helpful.

Sorry that was for @Papergirl1968

I have partials. They are the scariest thing that ever happened to me. Like a poster up thread described about her daughter - I go completely ridged down my right side, hand goes claw like and I just scream through them. So bloody scary the first time it happened, and not much better the subsequent times.

I've been on medication for 3 years now and haven't had a fit since the first day I started taking them (Lamotrgine).

Sorry ! Forgot.. rest up OP takes me a while to recover when I have one

On your focal seizure, it does sound like a major one so I'm not suprised you felt awful for so long. Wouldnt be suprised if rhe stress was the trigger
Rest yourself

My son has epilepsy. I still haven't got over the terror of witnessing his first major seizure. Over six minute tonic clonic seizure. Years ago now and I still feel panicked just thinking of it.

Thankfully his break through seizure are focal and are "just" rising sense of dread with auras. I say thankfully because he worries about it being obvious in school because (he feels) so many people seem to think seizures are funny.

Yes, applied under the Access to Work scheme in mid October as my surgery is rural. I have a tab with a taxi firm.
I rang just before Christmas to chase them and they were processing applications from mid Sept so hopefully should get round to mine soon.
I also applied for a disabled person's bus pass but have heard nothing about that either, and it's £3 for a return just to my DM's which is less than two miles away which is a lot to find several times a week when you're broke. I've applied for DLA too but guess what...haven't heard back from them yet either. I'll be surprised if I qualify for DLA as the questions seemed to be mainly along the lines of walking, dressing, eating, drinking without assistance etc.

I first had a tonic clonic in 2017 and then one in 2018. I've been seizure free for 3.5 years until a few weeks ago when out of the blue I had another. I think there's a link with my Moderna booster, which I had 7 days previously. I personally know of two 'real life' people it has also happened to. I reported it on the yellow card scheme and was told there is a Professor of neurology who is investigating cases like mine! The NHS website has been updated recently and now lists seizures as a rare side effect of the covid vaccines, typically between 4 days and 4 weeks.
It may just be a coincidence but it worries me that there are studies into it. I am seeing a neurologist this week so hopefully that may help with my emotions about it all.
No driving for a year......sob......