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.

My dd has a different kind of seizures, the only precaution we have in place is that she doesn't swim unless we are in arms reach, but to be honest she knows that they are coming a good few mins ahead and they aren't frequent now so never had one in the pool. Interestingly the dog starts to incessantly lick her about 2-3 mins before she blacks out. She wears an identity bracelet just in case. Infections causing a raised temperature increase the frequency

OP for my DH he gets very tired leading up to a seizure and incredibly slow like there's a massive delay or he doesn't respond. Just before a seizure his eyes look sort of drunk. He finds it hard to describe the feeling but he says 'slow' covers it. We didn't notice it the first time because we didn't know what to look for until they happened a few times.

How was your DH immediately after the seizure? There's a phase immediately after which I think is called Post-Ictal (?) and that was always then it I hated more than the seizure. He would be disoriented for about 10 minutes and wandering around. But everyone is different. My friend just throws up and falls asleep.

My husband was told to use low-sodium salt and he also finds caffeine can trigger the slow feeling even now he's on the meds. Lack of sleep is a big one, especially when he travels for work so he's just really careful. I would also recommend mentioning that he's had a seizure to his dentist next time as my DH always has great teeth but started getting damage after seizures.

Has he actually been diagnosed as epileptic? Had an EEG/MRI to confirm? Seizures aren't always neurological - dd had one (that's a phone call you don't want to get...) but it was cardiac in origin.

Yes, above poster is so right - Drs thought DH could have had a seizure related to diabetes to begin with. It's very early days and it may never happen again, it may just have been one of those things.

Was he checked over in A&E?

There are wearable devices from US called Embrace/Embrace 2 from a company called Empatica, they're quite expensive but you might want to check them out. There are wearable devices here that monitor some physiological changes, temperature, heart rate and rhythms etc.
And I just want to say, its absolutely normal to be fixated on where he is, what hes doing and worrying if he'll have a seizure at any second. It does lessen but in the mean time a good place to get some info/support is epilepsy.org.uk , epilepsy society and epilepsy foundation. I wish you and you're husband well in this tough time

@redpickle

So after his seizure he was very disoriented, confused and looked very lethargic for about half an hour. The paramedics arrived pretty quickly so had him propped up in bed whilst they put needles into him. My DH had been travelling worldwide extensively for work for about 1.5 months and was very tired. He said the previous week whilst travelling he barely slept, started experiencing bad headaches and that he hadn't been eating properly. So I guess that could be his trigger.

@titchy

So they took him to hospital and carried out a CT scan which came out normal, they did a vascular scan of the brain which also came out normal, as did all of his bloods. They wanted to do a MRI and an EEG but as an outpatients appointment, but the worry is really breaking us so we have decided to see a private neurologist later this week who will carry out further diagnostics including the MRI and EEG. We are hoping that we will get some sort of answers quickly.

I was thinking about this, OP. I am a nurse, but live in Australia. Is there an Epilepsy Organisation or Foundation you can join? They would be a better source of up to date info.

I had a tonic clonic seizure 3 years ago, witnessed by my partner. I had a bad cold and was dehydrated. Was taken to hospital and had tests, I think an ECG. I was then referred to a first fit clinic as an out patient.

It was a very worrying time as I assumed it was epilepsy and it would happen again. The neurologist concluded it was not epilepsy based on my and my partner's account of what happened. He said that everyone has a threshold over which they can potentially fit.

I would seek a neurologist's assessment.