When is a seizure not a seizure...?

[crazybutterflylady]

DH was walking back to the office about 10 days ago when he felt funny so went to sit down. Next thing he knew he was in an ambulance being taken to a&e. Had ECG, BP, tests etc. All came back clear. Paramedics reported he was unconscious for around 2 minutes, he seems to have lost about 40 minutes so must have been a period of confusion/not being totally with it.

By the time I got to the hospital he'd been discharged (he was in London and we live in Beds, we have 2 DC so it had taken me a while to get there - he was in for 4.5 hours before they let him go). Consequently I hadn't been able to speak to the Dr who treated him.

Apparently he had a similar thing about 10 years ago and all tests inconclusive. However he was banned from driving for a year.

He is being extremely 'male' about it all. Won't let me say he had a seizure or fit, refers to it as a blackout or says he fainted. His medical notes say clonic tonic seizure. He told the GP the morning after that he hadn't bit his tongue but there's a huge bite out of it. When I asked he said he couldn't have done it then as he can't replicate the position to bite where it was bitten (!) however it wasn't there before the 'blackout' and was there the morning after. We don't really know what happened as a very kind stranger phoned an ambulance. I'm sure they had nothing to gain from saying he was convulsing (what Dr Google terms as a clonic tonic seizure), but he is adamant he just fainted despite telling me his calves were extremely sore when he came round.

I'm guessing the reason behind this denial is that he is very into fitness. He does triathlons. Fitting usually means no swimming and the GP has suggested no cycling, no driving and to take things easy. He ignored her advice to take some time off work.

My reason for posting is just for some advice really. Does anyone have any experience of this sort of condition? He has an appointment with the seizure clinic (yup, the clue is in the name of the thing!) on Friday. I'm forcing my way into the appointment given his determination to bury his head in the sand...is there anything I should ask?! He is so bloody grumpy I'd quite happily let him get on with his version of events if we didn't have two very young kids whose world he is the centre of. He is being incredibly selfish in my opinion but I reckon quite a lot of this is probably based on fear of the unknown/loss of independence.

Any help/advice/experience much appreciated. Thanks.

I have no real advice I'm afraid, but can offer a bit of sympathy. A couple of weeks ago I randomly had a seizure. Was walking across the kitchen, DH & DS were there with me, then apparently all my muscles went tense, my eyes rolled back, I fell to the floor & lay there there convulsing for just over 10 minutes. I don't remember any of it, was just very, very confused when I finally came round.

Went to hospital by ambulance, had head & neck CT scan, was clear. I'd bitten my tongue lots too & bloody hell that hurt. I'd never had any type of seizure before. Docs had no explanations, so now I'm just waiting for an appt at the seizure clinic at the end of next month. I'm not allowed to drive for 6 months though.

I guess things to ask would be - why did it happen? What's the likelihood of it happening again? What should you do if it happens again? Are there any tests they could do? Is he now back into 12 months without driving?

Good luck

Hi I had a seizure 10 years ago when I was 34. It was completely out of the blue. I was at uni, felt odd & came around in the ambulance. I had another at the hospital & both were tonic clonic seizures. I bit my tongue quite badly & felt achy & really tired for a few days afterwards & with 3 young children was worried about it happening again. I lost my driving licence for a year. I had an MRI which was clear & was referred to a neurologist. I had an eeg & during this they did a flickering light test & they induced sleepiness. Although I didn't have a seizure, the wave forms emitted by my brain did change so I was offered medication. I think it's quite difficult to diagnose epilepsy & the neurologist said I might never have a seizure again but with the change during my eeg & if I didn't want to risk losing my licence again he advised medication. I've never had a seizure since.

Thanks both. DH had a light test as you describe rugbymum when it happened last time. Nothing came back from it as far as I know.

Part of me wants something to be wrong so it can be fixed if that makes sense. A 12m ban with 2 kids under 3 and him doing a daily commute into London is filling me with fear.

Good to know that medication does help - I'll definitely ask about it. Especially if it means he can continue with his fitness stuff.

zebra that sounds terrifying. It was so upsetting thinking of DH being in such a vulnerable state. We massively owe the stranger that called for help.

I hope you manage to get some answers at the seizure clinic.

To be honest it was my GP that told me that I had an epilepsy diagnosis because my neurologist didn't give me a definitive yes as he said I could have a 1 off seizure without it meaning epilepsy. I wonder if your DH's specialists will view things differently this time as he has had 2 now. For me I didn't want to labelled & have to declare it on job applications but my overriding concern was it happening again. I worried about people walking off with my children if it happened whilst we were out! We live in a village with poor public transport & the lack of independence I found more depressing than the diagnosis. It was my choice to go on medication to reduce my risk of it happening again.