4.00am friday morning, i am woken by one of the worst sounds i have ever heared. it sounded like a growl or roar of a animal.
soon realised it was my wife, at first i thought she was having a bad dream or nightmare, but she didnt stop when i leant over and gently shake her. i put on the light on, and what i saw terrified me.
she was rigid with her back arched and shaking all over. her lips were blue, so i tried to open her mouth which was nearly impossible, i managed and prised her teeth open to try to get her to breathe, she bit my finger, so i tried again, and she started breathing.
she sleeps on her front, so was already in a kind of recovery position, for the next 10 minutes i tried to wake her, gently at fist, but i started to get a bit frantic and panicked at bit.
i then decided to phone 999. the lady who talked me through what to do was fantastic, calming me until the paramedics arrived. they too were fantastic. my wife came round about 5 minutes after they arrived.
on to st jameses emergency ward, she came round once on a drip and seemed fine for a couple of hours.
thenshe proceded to have another worse seizure whilst in the emergency ward, they could not get her to breathe so she was rushed into resus. they did what they are trained for and brought her round. she had bitten through the side of her tongue whilst fitting.
she was take for a cat and mri scan to make sure it was not something in her brain, or anything else serious.
the scans came back clear, as did chest xrays. they tested her for everything. no idea why it happened.
we see a neurologist this week for another type of brain scan and to see what he says.

i can honestly say that i have never been as terrified, and felt so utterly useless ever in my life. to see someone you love in a seizure is horrible, and i hope she doesnt have anymore.

sorry for rambling but just had to empty my head.

anyone live with epilepsy and seizures?

working in a special need school , we have a few students with seizures . some a lot more serious than others .

hope your wife , and you , feel better .

I worked for Epilepsy Society for years, they will be as great source of info and help.

Try not to get too far ahead of yourself, see the neurologist and take it from there. The is a big difference between having one seizure and a diagnosis of epilepsy.

You did well in what is a very scarey scenario. If it happens again don’t try and force the mouth open, you’ll lose a finger. Just put pillow under her head and nice away anything that might hurt her.

Sorry to hear that, hope she’s doing OK. I had a single, solitary Grand Mal seizure like that about 20 years ago, so don’t assume the worst. Even if it means taking some drugs to control it, it’s not the end of the world.

She’s could well be sore as hell for a while (I pulled just about every muscle in my upper back), but it will be reassuring to her that you’re around to do the right thing if it happens again.

If you’ve got any questions, jot them down before you see the neurologist with her. It helps.

Yes my son was diagnosed 2 weeks ago he had his first seizure just after easter and it’s horrible to witness as you feel so powerless. He’s had 6 more since but hopefully the Meds will kick in soon. I’ve done a fair bit of crying but have to stay strong and try to keep life as normal as possible. I stayed away from the Internet it’s not my job to diagnose. I hope both you and your wife get the help you need. The NHS have been great. I reacted by being scared, very upset and angry as my son is autistic and already has enough difficulties. Thankfully he is the one that bounces back the quickest. All the best and I hope all works out for you both. Cheers 1 shed.

My wife had a grand mal seizure around 11 years ago now, even managed to dislocate her shoulder during, she’s well medicated now and has never fitted since, my wife’s main worry is if ever happens again she will lose her driving licence again and she feels like her independence is taken.my wife neurologist was amazing so see what they have to say and take it from there

Yes, My partner had seizures for about 2 years, hers were brought on due to a brain tumour so getting the tests for that done and getting an all clear should be a small positive in what will otherwise be a very scary time.

The whole experience of seeing someone you love go through that for the first time is terrifying, I remember going into first aid mode until the paramedics arrived and then I just fell back and started sobbing. Once you learn what to expect and what to do when they happen you can learn to function in as helpful a way as possible without getting freaked out. You need to learn when to call for help and when to lets things take their course. After my partner’s first seizure I only called for help once when she appeared to have two in very quick succession but even then she came round in time to cancel the paramedic before they attended.

Aside from medical help which i hope you’ll be arranging appointments for in the next couple of days you need to ask your wife what she wants you to do. My partner didn’t want me to restrict her movements during the seizures but just to do enough to make sure she didn’t hurt herself, so move any furniture out of the way and try and get her away from any heavy objects that she might hurt herself on, cushion and recovery position. We were lucky in respect of most seizures happened without a fall but often time that can be where the main injuries would be sustained.

If your wife drives, she should stop straight away until you get the all clear from the hospital, it’s for her safety and for that of everyone else. The loss of mobility can be a real shit but having a seizure behind the wheel of a car really isn’t something either of you want to experience.

Make a note of the seizures as soon after they happen as you can, the time, the duration, what happened, where it happened, what she was doing immediately beforehand any sounds made, was she aware of what was happening or completely out of it, any injuries sustained, as much detail as you can muster. All this information will help the specialist with medicating the condition. And this is the good news bit there are a lot of very effective anti seizure medications, it might take a while to get the right one and also to find the dosage that works for your wife but there is definitely good reason to retain an optimistic outlook.

Ton

You’ve both been through a lot. I hope your wife is OK

Just remembered we were asked to video it if possible which we managed to do, it helped the perdition when we saw him. Keep your phone charged and with you.

Tony
Feel for you mate. My other half has late onset epilepsy diagnosed March last year.
Been through everything you describe too almost to the letter but don’t really want to post too much on here.
You’ve got my email if you want to chat
Cheers
Steve

Scary stuff Ton, sending healing vibes to you and yours.

A prolonged seizure can have permanent consequences, so until you have more information on the cause I would suggest always ringing 999 if your wife has further seizures. We carry drugs to treat seizures, you may be prescribed similar once there is more information but until then don’t hesitate to call during a seizure rather than waiting for it to end. All the best, thoughts with you.

Tom,paramedic.

Sorry if the part about calling for help in my post was confusing. I was trying to make the point that the seizures won’t necessarily always feel like medical emergencies and may not be as life altering as they at first seem to be but reading my post back I think it’s a good thing that TomB posted.

Jesus Tony… That’s pretty ruff Pal.
I’ve no experience of anything like this, so I won’t even try and comprehend..
All the best to you both mate.. All the best.

bloody hell, ton… i went cold reading your post. terrifying by the sounds of it. not sure i could have held it together. well done.

hope you find the cause (hopefully it wasn’t you!) 😉

Sorry to hear that.

My son had 5 of these, the first whilst driving. Fortunately the passenger managed to take control of the car. In the second incident he was alone at night and ended up looking like he’d had the shit kicked out of him (thrashed his head off the bedside table) So yes, the seizure itself and the aftermath can be very scary. Per advice above it’s vital she stops driving immediately but I’m sure the medical staff will have told you this already.

So far, the one good piece of news in your wife’s case is that they do not appear to have found any underlying cause. In my sons case they discovered a serious congenital brain condition (which is inoperable) but the seizures themselves have now been successfully controlled by drugs and he is back driving and getting on with his life.

A work colleague also had two episodes a year apart and again his condition is now successfully controlled by drugs. In his case they can find absolutely no underlying cause.

Best of luck with both diagnosis and treatment.

thanks for all the replies everyone and advice. just spoke to the ward sister, she said my wife can come home today, as she has been monitored for 24hrs with no further incidents. she has been told that she cant drive.
i feel a bit daft about posting on here about it, but i came home feeling pretty wrecked and emotional yesterday and just had to vent.

cheers all.

Nobody here i am sure thinks it was daft to post here so you shouldnt either. A problem shared is a problem halved.
They are pretty good at Jimmys so she is in the best place, great news that she is coming home. Healing vibes from my end of leeds.

4.00am friday morning, i am woken by one of the worst sounds i have ever heared. it sounded like a growl or roar of a animal.

Shit day – that must have been terrifying for you both

the scans came back clear, as did chest xrays. they tested her for everything

Great day – as said above, there can be some scary causes of seizures

we see a neurologist this week for another type of brain scan and to see what he says.

Fingers crossed for you both that they quickly find a way to control this.
Try to be calm in the meantime, for the beneifit of you both

Ton, sorry to have read this happening. It is a terrifying thing to witness when there is nothing you can do to help. Your wife is going to be drained and probably scared right now. Hard as it may be don’t be searching the internet or dwelling on it too much. Wait until you have seen the specialist and go from there. Even in the worse case that this is not a one off then medication can control 99% of preventing further seizures but getting the dose right can take a while to achieve.

That’s really scary, I feel for you both. I’ve a lot of experience working over many years with lots of different types of epilepsy, recently worked for young epilepsy. There are more than 40 different types of seizures, and the vast majority can be well controlled, so try not to panic too much (I know that’s easy to say…). She may not even have another one – many people don’t.

With regard to managing seizures, as others have said, although they are frightening to see, especially with someone you love, there isn’t actually much you can do, apart from supporting any fall (if you’re lucky enough to) support the head to prevent injury and keep away from the mouth! Nothing, especially not fingers goes in there, as you found out.
It’s really important to time any further seizures, and note what is actually happening, as it can vary depending on what part of the brain is affected. Videoing can be helpful too, as long as you have permission!
There are a vast amount of medications to help if that’s the road she ends up down, and they are a lot better than they used to be regarding side affects. If you want to talk more I’m happy to anytime, email in profile…

Sounds terrifying Ton, I hope your wife recovers quickly and the doctors identify what happened.

A mate had a couple of such seizures (over a few yrs) and after each one had his driving licence suspended for 12 months so prepare for similar for your wife.

Really sorry to hear about your wife. Some good advice from others on here. My wife was diagnosed with epilepsy but thankfully is now seizure free and is no longer on medication. It can be frightening. Really hope that this is just a one off. However, I found that having a good support network of friends / family was invaluable. Make sure you look after yourself – it can be tiring to be a carer. My employer was very good and did let me work at home if my wife had suffered a seizure. We also had to make adjustments, i.e. I would always make sure that if she was in the bath that I would be in the same room as sometimes she would have seizures. Depending on the type of seizure, it can affect memories, i.e. after one seizure my wife didn’t know who I was for about 1/2 hour, but try to stay calm whatever happens.

Feel for you Ton. Offspring #2 had one at age 5 at school. School ran 999 and I got there as fast as 200 metres distance would allow. No Cause found and never had another.

Shitting it for days afterwards though. Stay strong.

A friend of mine has severe epilepsy, he controls it through doctor prescribed medication and vapourising skunk.

For he majority of the time he is ok, other than when the doctors play with his medication. He then will have petite malls, which are in convenient for him as they make him very tired and on edge, and can be entertaining for us as his mates.

Depending in the severity of the petite mall he can be having one mid conversation with you and you wouldn’t know it, or in my all time favourite if his awkward moments , come too im marks and Spencer’s old ladies knickers and bra section.holding on tightly to a rail if extra large bras shaking away staring into space, being asked by an old dear if he was ok, and as he continued to shake she called security on him.

But it in all seriousness it has made his life somewhat challenging myself work became an issue as he was a scaffolder, can’t work on any building sites now, can’t drive, he is on whatever the benefits are for being medically out of work, and with recent changes they have tried to send him back to work, but who wants to have hire someone who might have a small seizure and drop something on someone’s head or toe.

Woman at work had a couple 25 years ago, is well medicated and completely back to normal. So, fingers crossed…

When i worked in the NHS we had a few patients who suffered epileptic fits, at first it was shocking to see, but eventually you get used to seeing it happen and get to predict the start, try and keep your wifes head from banging against anything as said above, and when shes over with the fit, lots of reassurance and a hug will help her, patients usually get a warning something is wrong and will try and sit down to save falling.

Thanks for posting,lots of people will find it so helpfull, and it also helps both of you, and best wishes to your wife and yourself

Tony,

Sorry to hear your news, firstly I hope your wife is starting to feel a bit better both physically and mentally.

As a few people have said one seizure doesn’t mean epilepsy. I was diagnosed with epilepsy when I was 12 and I’m now 46, I’ve only a few grand mal seizures as its controlled by medication.

As a grown up having a seizure can be very distressing, as well as the obvious potential for injury depending on circumstances (sorry don’t mean to scare you) you come round and feel like you’ve done 12 rounds with Mike Tyson and normally a nasty cut to the tongue. I used to feel very embarrassed and self concious of course emptying your bladder as part of the muscle spasms doesn’t help much either. Luckily I found a lot of TLC from my wife helped.

Touch wood I’ve been seizure free for several years, I take my meds as prescribed (I see that as a small sacrifice) and try to cut out as many things that can trigger seizures such as stress, lack of sleep (not great for bikepacking!) and sadly alcohol. Without a doubt the biggest pain is the loss of driving licence but it might not come to that. I’m now driving again but with a licence that gets renewed every couple of years.

Luckily for me my consultant actually encourages me to get out and ride as he says riding is a great way of de-stressing my body. Sometimes my wife gets anxious if I’m on my own but I’ve just got a Spot Tracker so that puts her mind at rest a bit.

Like I said fingers crossed it’s a one off and she wont be diagnosed with epilepsy but if she is it’s not the end of the world although I appreciate that’s easy for me to say.

Are you going to Bearstock? If you are and you want a quick chat just yell otherwise feel free to drop me a line (email in profile).

Thinking of you both,
Mark

at first it was shocking to see, but eventually you get used to seeing it happen and get to predict the start,

If you’re not emotionally attached it may get easier, but not if it’s your nearest and dearest. The missus had grand mals for 15years+, 4 or 5 a year, and seeing her convulsing remained the scariest thing I’ve seen. For her it became a minor inconvenience. The drugs, though, made her very sleepy, especially Phenetoin.

I hpe they find out what caused your wife’s, Ton. There are so many possibilities.
My missus picked up a tapeworm in Central America, which layed a few dozen eggs in her brain. They took about 15 years to stop causing mischief, after which she was fit free for ten years.
Think about it too much and you’ll worry yourself sick.
Good luck! I bet she’s aching…

just like to add. thanks to everyones input. my wife got diagnosed with epilepsy. she is now on a daily tablet, which as so far stopped the seizures. cheers all.

Edit:

oops should read timescales more carefully.

Still stands that I didn’t realise how much stuff you have had to deal with in your life over the past few years.

I’m guessing having a diagnosis makes it easier to deal with.

I had it as a kid ton and probably the strongest memory I have from it is the look of horror on other people’s faces as you looked out from inside the seizure
Once you’ve had a few you just sort of merrily wait inside for it to pass really
I couldn’t talk for a bit afterwards which used to stress folks out abit as I recall

Still stands that I didn’t realise how much stuff you have had to deal with in your life over the past few years.

good job I have big wide shoulders to carry the load FunkyDunk….. 😀

Not read all the posts but the Meds will help. My son has/had epilepsy. Had a few seizures when he was about 4/5 years old. Put on epilum and once the dose was sorted things got better. He only had a couple more after that. Then once he was 2 years seizure free he came off the Meds (he was on them for about 4 years all in) and thankfully he has been seizure free since so fingers crossed it was something he has ‘grown out off’. If he has another it is back on the Meds and start the cycle over again.

So fingers crossed for your wife.

I remember it scared the sh!t out of me the first time, became quite relaxed about the whole thing as time went on though. Glad I no longer need to carry his emergency epistatus everywhere.

f…..’s sake Ton, have you got your own parking space at st jimmy’s , seriously I hope it all gets sorted, you’ve certainly had your share.

Mart