Husband had a seizure

[Pyracantha1]

My husband had a clonic tonic seizure a few days ago. It was the first time he has ever had a seizure. It was the most scariest thing I've ever experienced. It happened whilst he was sleeping. I really thought that he was having a major stroke and dying in front of my eyes. My young children were woken up and witnessed a lot of it.

It would be fair to say that I am really struggling. I'm confused as his scans have come back clear and they are finding it difficult to find a cause. He is in his late 30s so it's all come as a shock. I keep reliving those moments, the sounds, the movements and my feelings during that time. He is absolutely shattered and feels guilty, which makes me feel even more crap.

The doctors don't know if it will happen again or not, which means that I spend all my time being fixated with where he is and what he's doing. Wondering if he is safe. I'm not sure how we will cope when he goes back to work.

Please help. How do people live with the unpredictability of when a seizure might happen. How do they maintain their independence and dignity? My husband travels a lot for work and now we don't know how he will be able to go alone. What if he has a seizure when he is in a hotel room alone? Please share your experiences.

[nancyjuice7]

Completely different, but remarkably similar, our dog has epilepsy. He had a large seizure in the middle of the night, and the second was also in the night. He "knows" when one is coming as he will behave oddly before going to bed. Your husband may be able to pick up on this In future. Heat is also a trigger.
We were told it might happen again or it might not. It did but we spent weeks on edge wondering when it would happen again and I was a nervous wreck, and this for a dog, never mind a husband.
I can't compare fully as my experience is with an animal but I do wish you all the best in getting treatment. Xx

[Pyracantha1]

Thank you for responding. I hope your dog is better now.

My husband said he had no idea that he was about to have a seizure as he was sleeping and obviously remembers nothing about what actually happened. I wonder if there are are good wearables that he can wear that send a location and alert to a caregiver

[Cantchooseaname]

Hi, not direct experience of seizures, but my husband went from fit and healthy to having potentially life threatening and life changing Illness over two days- healthy to paralysed from chest down. I can completely relate to the feelings of shock and how much it rocks your world.
We are lucky- 18 months on he has good mobility and independence. However, I notice every shuffle, stumble. When he has normal aches and pains and reaches for painkillers, I feel that sense of anxiety.

It’s such early days for both of you. You need time to process things. It’s not easy. Talk to friends, look for support groups. We have taken it as a massive reminder to love each other, enjoy family time, and live for what is important, as much as a cliche it is- it’s true.

I hope your husband stays seizure free, but if it does become a recurrent thing, there are good drug options which may help.
Take care of yourself.

[justilou1]

They are expensive, but Apple watches have a good falls alert system. (I have a heart condition) I use mine for this. The downside is the relatively short battery life. Suspect there is better out there.

[Cantchooseaname]

Actually, I think you are right- I think the Apple Watch can monitor changes in sleep and heart rate. Don’t know idly it can summons help/ notify you.

[INeedNewShoes]

A relative of mine has had phases of seizures. He began to recognise an unusual sensation he would get in his arm a minute or two before a seizure which would give him time to get into a safe place (lying on a carpeted floor with space around) and alert someone.

Fits are extremely distressing to witness especially out of the blue like that. You have my sympathy. It is traumatic. I suggest you make an appointment and talk this through with your GP.

[MerryInthechelseahotel]

My friend's husband had this happen a few times when he was a similar age. He was investigated and nothing showed up. He wasn't allowed to drive for I think about six months. They worked it out that it was dehydration that caused it and it only happened a few times. Each time was after he'd been drinking beer and weather was warm. He is approaching 60 now and is fine with no problems but it did cause a lot of stress at the time.

[Diangled]

Hi OP my Dad was diagnosed with epilepsy following a tonic clonic seizure during his sleep too. Again it came from nowhere & was such a shock. My Mum was traumatised for a long time. She could remember the noise just as it began especially.

Eventually they did find a small area of calcified brain on his scan which would account for the seizure. He wasn’t able to drive for a year & takes some fairly heavy duty medication but has been seizure free ever since.

I fully appreciate the shock of this, you probably feel utterly stunned. Look after yourself

[sparkle67]

I've had epilepsy since I was 11.. apparently I had seizures when I was a baby but they stopped & cake back when hormones kicked in, my epilepsy is hormone induced so every 'time of the month'.

They were controlled well for 4 years (I'm 34) until I became pregnant & I began having them again, I'm 5 months postpartum now and they're back under control.

I've always had some anxiety about having a seizure in public which has happened, growing up I had one long term relationship, he saw a lot and fair play to him dealt with it really well, think falling down stairs or seizures mid swallowing so choking! My husband now is wonderful, but to be honest I'm lucky for it not to affect me having a 'normal life' I don't drive but that's never bothered me!

I've lived alone, went to university at 30, gone out, been on holiday etc.

There are limits at times, my pregnancy & birth were difficult but totally worth it! Funnily enough my epilepsy didn't play up during labour

I have migraines due to hormones also and if I'm completely honest I'd rather have the epilepsy a million times over because kim able to get on with my day although I'm tired etc if I have a seizure, a migraine leaves me in bed for days!

[Si1ver]

My husband has epilepsy and clonic tonic seizures are fucking terrifying to see. That must have been appalling for you, I hope you're ok and you gave someone to talk to about how you feel - not your husband.

Epilepsy is regularly related to sleep, my husband's happen when he's just woken up usually. So what works for us? Medication, making sure he has enough sleep, keeping stress levels low, healthy diet, not drinking too much and safeguarding. For us safeguarding is wearing his medical alert tags, keeping his ICE info up to date and not driving.

You need a referral to a neurologist and to the epilepsy nurse. This isn't something the GP can deal with. He needs an ECC and a MRI.

People are usually very scared and completely wiped out after a seizure. It can take several days to get back on your feet. If there's anything else I can tell you please just ask.

[Flossie44]

I had what I thought was my first fit aged 31 and 29 weeks pregnant. It was also a tonic clonic, and as I went to sleep. My husband was led next to me and screamed waking our them 9year old. They thought I was dying. My poor ds stood and prayed apparently.
The ambulance came and took me to hospital. I only have memory of clips between the fit and waking up in hospital. I then had a second large fit on the ward.
I remember the day total utter exhaustion following it. Every muscle hurt so much from the activity during the fits. I had trouble walking for a day following.
I had an eeg which showed stupendous electrical activity. Then once I’d given birth 10 weeks later I had an mri which showed lesions on my brain.
Apparently I then found out that the so called febrile convulsions I had as a child had been misdiagnosed and were in fact epileptic fits.
This particular episode was brought on by tiredness and dehydration.

It’s scary adjusting to the what ifs. My dh followed me around like a lap dog in case I fitted. But we soon adjusted and I regained independence and he soon got used to leaving me.
I lost my driving license for a year which was a pain, but in the grand scheme of things, I was just happy to be alive.

Take time to adjust. And it will help. Make sure he sleeps well, and keeps hydrated. Pls eats regularly. That’s the key advice I’ve always been given by the Neuro team.

Sending hugs. It will get better

[Flossie44]

I forgot to say....all my scans as a child came back clear. Apparently the eeg scans need to be done within a timeframe following a fit, while the electrical activity is still firing.

[Egghead68]

That sounds utterly terrifying. Hopefully it was a one-off, or if it happens again, he can get treatment, but it must be really hard not to worry all the time at the moment.

Has he been advised not to take baths (for now at least) or drive? It's also safer to use lifts rather than stairs and escalators where possible.

The good thing if he has another seizure in a hotel (fingers crossed not) is that, once he comes round, there will always be someone he can contact for help.

Take care.

[Egghead68]

P.S. He should also stand well back from the edge of the road and the edge of platforms and avoid cooking alone on the stove if possible.

[ViaSacra]

I wonder if there are are good wearables that he can wear that send a location and alert to a caregiver

My friend's daughter has epilepsy, and wears an electronic wristband that instantly alerts both of her parents whenever she has a seizure - it can also give them an indication of the severity.

[OctoberLovers]

Seizures can be brought on by stress / anxiety...
How is his mental health ?

[Egghead68]

Not usually from sleep @OctoberLovers.

[Pyracantha1]

Thank you to everyone for kindly sharing their experiences and for the hand holding.

One poster mentioned a wearable device, do you have the brand name please?

I feel like I need to talk to a psychologist just to discuss my feelings, but unsure who to go to who will specialise in something like this.

Unless my husband experiences another seizure they won't put him on meds. I was asked if he has any mental health issues, the answer is no. He does however have a very demanding job and used to work every god given hour. That of course hasn't helped.

I just don't know how to stop worrying. I feel guilty for even leaving our children with him alone, in case he has another seizure. What strategies have people used to ensure safety whilst being independent?

[Pyracantha1]

@cantchoosesname

Thank you for sharing. I can only imagine what you are going through living through this feeling for 18 months. It's not even been a week for me and I feel like a nervous agitated wreck. Sending you lots of hugs.

[Pyracantha1]

@Diangled

I'm sorry to hear about your parents. For me like your mum the noises have been extremely distressful. I have such a vivid memory of them and I keep getting flashbacks. They are like nothing I have heard before.

To look at my husband now you would think nothing ever happened and of course he doesn't remember. But for me it feels like my husband has come back from death. I feel silly for saying this as it was just a seizure but the way everything happens in that kind of seizure really makes you think that the person experiencing it is dying a very painful death. Because you don't know in the first instance ad to what it is. Sorry I know I'm mumbling now!

[Pyracantha1]

@Si1ver

Thank you for sharing your experience. I would love to have a chat especially regarding safeguarding but not sure how to private message via this app.

[redpickle]

The exact thing happened to my DH, except he was 28. Same thing, just falling asleep. He did go on to have more and was diagnosed with epilepsy. It was a long road but he's 40 now and has been seizure-free for many years thanks to medication.

In the early days I used to have a baby monitor if he went to bed before me! I would lay awake until he'd been asleep for a while (seizures would always be within first hour of sleep). He was also vulnerable if woken suddenly so I would barely move. It has been difficult but we've learnt to recognise auras and triggers. He's had many long spells of not driving over the years while we got the meds right and I was reluctant to leave him alone with kids until we found the triggers and got to know his condition.

Hopefully this will be a one-off as it often is but I wanted to reassure you that if it's not, It's not the end of the world and the medications are amazing once you find the right one(s).

[Pyracantha1]

@redpickle

Thank you. I'm so glad you've come through the other side. Can I please ask what your husband found his triggers to be or what auras he was experiencing before a seizure? Because my husband got his seizure whilst asleep would there even be a tell tell sign that a seizure is about to take place?

[Si1ver]

You're not mumbling, you're getting your thoughts in order.

Someone once explained epilepsy to me as a spectrum. Everyone is somewhere on the spectrum for epilepsy; if you subject anyone to enough stress they will eventually tip over and have a seizure - apparently this happens frequently in torture sessions documented by the army. People who we deem to have epilepsy have a lower threshold for what will make them fit than people we don't. It could well be that your husband never has another one and that a number of stressors combined inthe lead up to his fit (lack of sleep, work stress, drink, whatever) and this tipped him over the edge and that particular combination will never happen again.

But he might. And what would a wearable give you if that happened?

We talked about my husband getting one, but it felt like a step too far for him and I respect his decision in that. He's had to sacrifice loads of things already - he can't take our child swimming on his own - honestly he can't go swimming on his own anymore, he can't drive, he can't take a bath without me sat outside waiting which I'm sure is really relaxing , we don't lock any doors in our house because I can't break them down if he has a fit.

If he has a seizure with me I keep him safe and look after him. If he has one away from me he calls me and I either go to him or I get a friend to go to him and we look after him afterwards. A wearable won't stop him hurting himself during a seizure, which is my biggest concern. If anything it may make you more anxious, if you're in a situation where you don't have your phone or can't use it for example.

I remember how terrifying the first seizure was. The noises he made and the way his hands drew back into claws. I don't think you need a therapist, I think you need support and empathy. To know that other people have gone through the horribleness too. Why not have a look for an epilepsy support group locally? I'm trying to remember what I did after his first seizure. I think I drank wine with my best friend and cried while he slept it off.

[Vintagegoth]

I witnessed my DH having a tonic clonic seizure not long after we were first married. He had had seizures before, but not tonic clonic and not for over 10 years prior. It was horrific to witness and I genuinely thought he was dying. I know what you mean about the noise. It is hard to forget. He bit his tongue and dislocated his shoulder.

My husband's epilepsy is triggered by lack of sleep and lack of food, which he had had that day. They changed his medication and he has been seizure-free since then. It doesn't mean I don't worry about him when he travels.

You have had an awful shock and witnessed something pretty awful. It is still pretty fresh in your mind and obviously you have the worry that it could happen again.
I can only talk about my experience, but the memory will fade and the shock will get less. It will always be at the back of your mind, but it will get better.

I wish you and your family all the best.