Husband had a big seizure

[GeorgieAnne]

My husband had a grand mal seizure while coming home from work last week.

He’s early 60s and has never had a fit in his life. Luckily he was in a busy place and people helped him but the description of what happened horrifies me - he fell backwards on a hard floor and could have been badly hurt. He fitted for at least 5 mins and it took around 20 mins before he was fully conscious.

He was taken to A&E and had all the necessary tests including a head scan. Everything came back clear, thank goodness… but now we need to get to the bottom of this. He’s been referred to a seizure clinic.

Im just getting over the initial shock but now I have so many questions.

• Is it possible to develop grand mal epilepsy later in life?
• Is it possible to have a one-off seizure - what could cause it if vital signs all ok?
• He remembers a weird visual disturbance leading up to the fit. Does an aura like this allow people to sit down and make themselves safe before a seizure?
• How do people cope with the uncertainty of another seizure? To be honest, I’m terrified of witnessing one but I know I should be prepared - and our teen kids too.

I’m aware of the nasty causes like brain tumour etc but I’m hoping the CT scan means it’s not that - although I suppose he may need more detailed scans.

My husband can’t drive for at least 6 months, possibly a year, depending on what happens next. He’s devastated by this as he loves driving. I’m anxious, as I’m not a confident driver but I’m going to have to take over all the longer trips he usually did.
So many things to get our heads round.

if anyone has any insights, I’d love to hear them - thank you.

this has happened to my husband he is in his late 70s but fit and healthy. Had a couple of strange moments when he just went blank but around 4 months apart. Saw neorologist who said it’s late onset epilepsy and gave mediacation. Two days later had two massive seizures around 30 minutes apart. Taken by ambulance to hospital where it was discovered he’d dislocated his shoulder and fractured it. That was six months ago and he is recovering but slowly. This late onset epilepsy comes from nowhere apparently. My husband had brain scans and they show nothing. His has not had another seizure since late October so hopefully the medication is working. Interestingly he did say when he had the freezing situation that lasted around 10 minutes a few weeks before the big seizures he also felt a flash,light in his head. I do know one other person who had a one off seizure in her 60s and she has never had any more so hopefully your husband will be the same. Good luck

Sorry this happened to you too, @terrichild Did you witness your husband’s seizures?
Glad he’s recovering and hope there will be no more episodes.

Sorry this has happened to you.

My husband had a grand mal seizure for the first time in his 30s, I felt very similar to you. It happened in his sleep and woke me up and I felt like I didn't sleep for months.

I called an ambulance and he went to hospital and they observed him etc but didn't do any scans until we pushed, which was really frustrating.

They said it was just one of those things until it happened again and then put him on medication. He has been on that ever since and not had any seizures at all, and has lived a normal life since. He also had to wait to drive but he did get a free bus pass.

Sorry this happened, it is really scary but the meds have worked really well for my husband - I think it can take some time to find the right meds though.

Thanks @Witsend2023
That must have been terrifying when it happened in his sleep! I can’t believe he didn’t have a scan - ‘just one of those things’ seems ridiculous! Was his second seizure in his sleep too? How long has he been seizure-free?

I had a grand mal seizure in my late 20's and have never had another one since. Had an MRI etc and they never got to the bottom of it. It happened to someone else I know too who also never had another seizure. It was a massive pain not being able to drive - remember to apply to the DVLA before the 6 months is up as it took them a few weeks to process it.

My DH had a seizure in his 20's also in his sleep. He had CT & EEG but they didn't see anything. DH still lost his license for 1 year which was difficult as that is needed for work.
Anyway, he declined medication and has never had a seizure since.
Very scary and takes time for the fear and worry to go.

Fingers crossed it is a similar story for your dh.

I’m seeing a neurologist this week after having a possible temporal lobe seizure a few months ago. It’s the second time in 4 years, but this one was scary as I lost consciousness- I had a big build up to the black out though.
He should def see a neurologist for further tests. I had a CT in a&e and other tests (blood etc) but the ‘baby’ doctor was clueless and GP further referred me on.

I had my first tonic clonic (grand mal) seizure aged 21. Much younger but epilepsy can develop in adulthood (which I didn’t know at the time). Unfortunately I had tonic clonics every 3-6 months for the next 10 years or so, until I finally got diagnosed with temporal lobe epilepsy. I was misdiagnosed twice.

It could well be an aura he had, I have auras lasting about 1 minute where I can get myself to safety by lying down on the floor where possible. Thankfully after my diagnosis I got prescribed Lamotrigine and haven’t had a TC in about 4 years, although I have occasional breakthrough “focal aware” or “partial” seizures. I would say definitely don’t be afraid of medication if he is offered it - epilepsy meds get a bad rep but they’ve changed my life.

Sadly the fear of having another seizure is very real and very difficult to overcome. I wish you the best of luck - I know my story isn’t the most positive but I am in so much better place now. My only regret is it took me so long to get diagnosed and on medication. I would really push for a diagnosis and not let anyone fob you off. Hopefully it’s a one off but if it isn’t, it’s not a death sentence and you can live a happy and normal life with epilepsy (if that’s what it is).

I'm epileptic and was diagnosed in my early twenties in similar circumstances to your husband. To answer your questions.

1. Yes, you can be diagnosed with epilepsy later in life. I believe you have to have at least two seizures to be diagnosed.

1. Yes, it is possible to have a one-off seizure. This can happen for a variety of reasons.

1. What your husband has described is an aura, this is also a type of seizure called a focal seizure. Everyone is different however from my experience whilst I might have the physical ability to sit down or go somewhere safe, I can't. I make risky decisions and feel extreme anxiety however, everyone can react differently. There is no one size fits all.

1. You just get used to it it won't stop so you find coping mechanisms and practical tools to help make life safer and more bearable. You need to learn what to do in an emergency and in fact what an emergency actually is. The epilepsy society is brilliant at giving practical solutions to keep you safe at home or out and about. It also has videos of what a seizure may look or feel like from other epileptics.

However, your husband may not even have epilepsy so the most important thing now is to support him get a diagnosis if one is needed. Be prepared for him to have a huge range of emotions at this difficult time. Also, gentle comment, the type of seizure your husband had was a tonic clonic by the sounds the phrase grand mal is no longer used. Best of luck to you both x

Many thanks for all these replies, so helpful.
@User1706 That’s interesting you can’t make use of your aura to get safe. Is your epilepsy under control with meds? I hope so.
And yes, it may be a one-off or caused by something else. I’m so hoping we can get some answers.
I called it ‘grand mal’ because my grandmother had ‘petit maI’ epilepsy. I found her fits really scary to see as a child which has increased my anxiety now - though she had strange staring fits rather than full-on seizures. Is ‘ tonic clonic’ abbreviated to TC? Such a mouthful!
Thanks again for your help.

@GeorgieAnne I've always found it peaks and troughs at the minute. I'm having a really good year, but a few years ago, I couldn't control it with medication, unfortunately.

I don't want to worry you though as I'm sure you'll see from other people who comment as it's to do with your brain it affects everyone so differently. As awful as it is you will get used to the sight my husband struggled for a long time too but he's now confident at looking after me and most of the time he just let's it happen, puts me in bed to recover with lots of pain meds and I sleep it off.

I'm afraid I have no idea why they decided to change the name if I'm honest. Hopefully, someone more knowledgeable will be along to explain 🤔

I started having seizures at 18 so yes they can’t just start at any time in your life

I don’t have auras so I can’t comment.

my seizures are well controlled with medication and I can go a few years without any and then bam out of no where another comes.

I have learnt what increases my risk of having a seizure and i try to minimise this. - sleep deprivation, the period after intense stress, alcohol whilst with sleep deprived or stressed. I avoid drink minus the very odd occasion where I will have 1-2 drinks. I have set bedtime and ensure I get 8 hours and im
mindful in the aftermath of stress.

Thanks @User1706 That sounds really tough but glad you’re having a good year, and hope that continues.
@OurChristmasMiracle My husband has a stressful job and often misses out on a good night’s sleep. I have wondered if this could have triggered his episode. Thanks for your input.

I developed epilepsy at 30 when I suddenly had a grand mal seizure in my sleep.

Fortunately, I have only ever had awareness seizures since, or the ones where you become completely unaware but I don't fall to the ground or anything. My body would just stay in the same position until I came round.

Personally, I have 'aura's'. For me these are a sudden feeling of 'doom'. I also get a really strong smell and a sense of Deja vu. I get a 'woosh' feeling from my head that goes down my body and I know to lie down just in case. Perhaps your partners experience was an aura, which could be handy for future.

I am on lamotrigine now. It look a year or 2 to get the dose right, but I haven't had anything in 2 years now.

I have also heard of people who have just randomly had 1 seizure and nothing ever again.

Hope he is ok and hopefully all the scans come back fine :).

My daughter developed Juvenile Myoclonic Epilepsy just before her 15th birthday. She had one tonic clonic seizure (Grand mal is the old name for this), she has had at least one myoclonic seizure and a number of atonic seizures (she falls to the ground but doesn’t lose consciousness). She was diagnosed 3 months after the first seizure and has only had one seizure since starting Lamictal (Lamotrigine).

she started to recognise a seizure was imminent but was unable to do anything about it.

Tiredness and dehydration were risk factors we were warned to avoid. My daughter was back at school 4 days after her first seizure, driving wasn’t an issue as she was too young.

My mum (then 95 years old) had two seizures last year while staying in a rehab unit recovering from a broken wrist. Both happened in her sleep, and both times she was unresponsive afterwards for about 20 mins. Apart from a badly bitten tongue, she says she felt relatively okay after coming round.

Brain scans were normal, as were blood tests. Since then my mum has been on anti-seizure meds and has had no further trouble, but will be monitored yearly at the seizure clinic.

My husband started having quite severe tonic clinic seizures in his sleep about 12 years ago. He was finally given medication after about four years - he had two seizures within a couple of hours and he was taken to A&E where he fell asleep and had another huge one which was witnessed by about ten members of staff. He has almost completely stopped drinking as I've no doubt that triggered some of the earlier seizures, but the medication controls things quite well. He's still having an occasional seizure but they are much less severe and he recovers in an hour or so now.

I found it very scary at first, but once I got to know the pattern of the seizure itself and how he recovers, it's much easier to cope with now and I just make him sit up for a couple of hours until his blood pressure is back to normal and his blood oxygen level has improved . He also has sleep apnea so his blood oxygen is often on the low side but it falls to below 80% after a seizure. By far the worst experience was when we were away for the weekend in Italy - we were staying on the fourth floor of a very old and small hotel with no lift, narrow rickety stairs, and no reception staff after 5pm. He drank far too much in the evening and had an enormous seizure in the middle of the night. Thankfully we were with friends, who were able to call an ambulance but no-one spoke any English on the phone or the ambulance crew, and the only person in the entire hospital who was reasonably fluent was one of the health care assistants who was working in another department. They kept him in for the rest of the weekend, so it wasn't one of our best city breaks 😆

That must be so hard for your daughter to deal with @AuditAngel At that age it must be tough.

@Growlybear83 Your Italian weekend sounds terrifying! A friend recently broke her leg in Italy and had a similar experience with no staff speaking English… was a nightmare!

Does your husband only have fits while sleeping?

I hope your appt goes well @Cattyisbatty That must have been scary losing consciousness for the first time.
My husband is seeing a neurologist tomorrow, following a cancellation. I’m hoping we’ll get some answers as it’s all so out of the blue and we feel a bit lost. He has a stressful job and commutes and I’m just worried about how it’s all going to be managed.

Sorry I've only just seen this. Yes, every seizure he's had has been while he's been asleep. A small number have been within a minute of two of him nodding off, but he's never had one when he's been properly awake.

I hope your husband gets on ok with his appointment .

Thanks, it was scary as I knew it wasn’t a simple faint (have fainted a few times and it didn’t feel like that).
Good luck to your husband for tomorrow @GeorgieAnne

@GeorgieAnne my daughter has been amazing. I certainly would not have coped with it in the way she has. Initially she had to be accompanied everywhere, we got her an Access card which shows she needs to be accompanied, she often gets a free ticket for concerts using it, she gets a companion for theme parks etc. she is determined to make the most of her life with the condition!

I hope things go well for your DH

Thanks @AuditAngel
My husband saw a neurologist and is awaiting results of his MRI – and will have EEG tests. Two weeks after his seizure he seems absolutely fine so it's hard to believe it even happened now! But it was a major seizure and it's scary to think about how he could have been hurt. I'm anxious about him returning to his normal commute and lifestyle – for now he is working from home.

Amazing that your daughter has dealt with this so well, and fantastic that she is making the most of life. It must be hard for you as a parent but I'm sure you want her to be enjoying her teenage years too.

What I find so scary about the condition is the unpredictability of it and the potential for injury – hard to find peace with that.

What was the build up like?

Hi @GeorgieAnne... I have a close family member with epilepsy and the epilepsy society and epilepsy action can be of huge help in answering questions and finding out regarding different seizures and supporting both the individual and their family

www.epilepsy.org.uk/