Dh first seizure - what do I need to do next?

[Timeforabiscuit]

Dh collapsed at home on Thursday and was fitting for about 20- 30 mins, during which he banged his head and had bitten his tongue quite badly.

When on the phone to 999 I was told to do chest compressions too, but he came round eventually and the paramedics took him to a&e.

Blood pressure, blood sugars, chest xray and head scan - all came back clear, and he has discharged home that night. He's been referred to a first fit clinic, but that is a phone assessment in two weeks time.

So now I'm home, with a very tired husband, who is having trouble eating, sleeping alot, and complaining about his chest and breathing. I don't know what I need to watch for, the seizure was completely without warning, and he was throwing up alot when coming around, so don't know if he breathed vomit which could cause problems.

The kids saw it all, so I'm doing my best holding it together - but today I feel the facade shaking loose, and I need a plan.

Can anyone give tops on how to manage a sore tongue, what I should keep an eye on? When should I get him in front of a gp/a and e. DH has a complete blank about the whole incident, and while he's concerned, he's also a large whinging man child cracking jokes and making light.

You poor thing. Can't imagine how traumatic that must have been. Maybe try some bonjela teething gel for the sore tongue?

I suffer with mouth ulcers and after having tried numerous mouth gels the one that works best for me and completely numbs the area is orajel. It stops the ulcers discomfort completely which is usually around d/ on the tongue. Good luck

If the chest issues are new you need to speak to an OOH GP.
It may well be related but you cannot just wait for a phone call about a seizure and ignore the other problems.

Good luck

I have epilepsy, which is secondary to a brain tumour. I take epilepsy medication and have done since my first seizure almost 6 years ago. I have only actually had a small number of seizures, but for me, they often come without much warning. It's not like I'd be able to tell you that one was going to happen, for example, and like your husband my first one came completely out of the blue when I was walking home from the train after work. All you can do when he is having a seizure is make sure that he can't hurt himself and wait for it to pass. It may be that it was a one off and he won't have any more, it happens, or it could be that it will become more regular.

If he drives then you will also need to notify the DVLA and it's likely that they will say he can not drive until he's been seizure free for a year. If he just continues driving then he runs the risk of getting a large fine if they find out and/or it happening again when he's driving, where the consequences are obviously immense.

As others have said, treat the chest pains etc as a separate thing and he should get help for that now, not in two weeks.

Have you informed the dvla if he drives?

Is his chest hurting from the compressions?

This must have been so scary for you. My partner has epilepsy and I know exactly what to do when he's fitting, and I also know he will be fine, but it still doesn't make it any less scary to see. Luckily his meds were tweaked this time last year and he's actually achieved his 'clear for a year' for the first time since he was 14, which is immense.

Are the hospital investigating? 20-30 minutes is a very, very long time to be fitting. Anything longer than 5 minutes is a medical emergency. My DP is usually only in the active fitting stage for less than a minute (although it feels a hell of a lot longer at the time). The GP said that I should only call an ambulance if it's more than 5 minutes, otherwise his condition can be managed at home.

But 20 minutes is a long time, so get him an appointment with the GP as soon as possible.

For the sore tongue, DP likes to suck on ice cubes, and puts bonjela on it before he goes to bed.

The tiredness is normal. DP's fits are always in the morning in the stage between sleeping and waking (as a result he has always been able to drive because his type of epilepsy will never occur other than when he's in bed, which I know is a huge blessing), and he will sleep for perhaps 3-4 hours in bed, then come downstairs for the rest of the day but he usually won't eat much, and will fall in and out of sleep in front of the TV.

The most important thing is to get it investigated. There is brilliant medication out there if it turns out to be epilepsy or something like that, but nobody should fit for such a long time for no reason, so medical investigation really is urgent.

Thank you so much everyone, I've got some bongela in and that's helped - he's really done a number on it and ice chips are too painful.

I thought two weeks was a long wait for a phone consultation, so I'll see if there are further referrals coming on Monday and follow up with gp on Monday pm. @LindaEllen thanks for saying about the length of fit, I'll double check with the gp how long they have the fit lasting for - he was still out of it when the paramedics came - but the fitting had calmed down.

@TodaysFishIsTroutALaCreme - I'm not sure if it's the chest compressions, or him falling heavily that's caused the issue, he just looks a bit grey and tired - I was thinking he should perk up after 24 hours, it was 4:30 on Thursday he went down, but he's generally feeling more achey, pained and tired rather than less.

He's overweight and unfit, so not sure if the bounce back will just naturally take a bit longer.

@Fruityfriday - he has absolutely no intention of driving until hes absolutely given the all clear (we don't need to as wfh and I can take over local trips), I think the hospital were informing the dvla- but I thought we needed a formal diagnosis before Contacting dvla/insurance?

I've actually read through people's advice again, and i won't hang about and I'll just pop a call in to OOH, we have a large GP surgery, and at least I can check what happens locally.

Bugger me it's scary, I've got an inkling now why posters ignore what's written in posts, it's like your brain really doesn't want to register what written infront of you.

I'm afraid you do need to tell the DVLA and he won't be able to drive for a year. It sucks, it really does.

20 - 30 minutes is a heck of a long time for fitting. The general rule of thumb is to call an ambulance if it carries on for over 5 minutes. Generally they usually only last a minute or two.

That much have been so bloody scary for you all.

I agree with the above - OOH needs to be seen due to pains.

I had my first fit back in feb this year, came out of nowhere like your DH. Was your DH actively seizing for 20 minutes or was he out of it? When I've had tonic clonic seizures I fit for a couple of minutes then I get up and wander the house.

The waiting time for first clinic i feel is really long, my first seizure was a Thursday morning and then I had a call on the Friday (wasn't expecting it) and again on the Monday, although I was admitted overnight on the Saturday. Then took 2 weeks for my prescription to reach me via Royal Mail (could've gone to pick it up myself but nevermind) I would chase that up.

But I've experienced long waits when contacting the epilepsy team at my hospital. I called and emailed on 30/3 and finally got a reply on 26/4. No idea if this is normal practice or Covid related.

If he has a seizure and you're worried call 999, my husband does and they've been great every time and taken me into a&e for a check up. It's recommended to only ring if the fit is longer than 5 minutes, but the paramedics have been really reassuring the 4 times I've had them sent out. That helps my husband and children a lot.

Echoing the length of the seizure - was it actually that long, or did it just feel that long? Mine are typically a few mins at the most and I sort of know what's happening in the sense that I am aware that it's happening but I can't control it. Mine are usually the tonic clonic ones too (where you have several over a couple of hours) and my husband has been told if an individual seizure goes on for longer than 5 mins then to call an ambulance but otherwise it's fine.

Also, it took a few weeks for me to get an appointment to talk to anyone about either the brain tumour or the epilepsy after I'd been "diagnosed" and sent on my way from the stroke unit. That was the hardest period of my life. Once you're in the system it's fairly ok as you just have routine appointments every few months, but getting that first appointment can take weeks depending on where you live.

Oh, and the "benefits" of having epilepsy meds (if that is what happens) is that you are entitled to a disabled persons Railcard which gets a third off train travel for you and a "carer" .... And when you tell the DVLA about his seizure, you'll get a letter which you can then use to get a free bus pass. Or in the case of Londoners, a free zone 1-6 travel card which is very handy!

If it is epilepsy and he does have seizures that last longer than 5 mins you may get given Midazolam in a syringe to give him between his lip and gum.

Seizures lasting over 5 mins area risk for developing into status epilepticus which is dangerous and it is diff past that time for them to stop on their own.

@brainstories568 don't forget the free prescriptions ha. Lucky us.

I've worked back through the timeline and it looks like the actual seizure was around the 6 minute mark, then a good 20 mins coming around, but his memory was complete blank for an hour.

He has, of course, perked up massively in the last couple of hours - and the appointment is next Monday, so just over a week, not 2.

Thank you everyone for the different experiences, we have a terrible local bus service unfortunately

Your story was exactly me a year ago.

Severe tiredness etc. after seizure v v normal. They don't remember the seizures or immediately after.

Now that he has had the seizure, the "electrical" pressure in his brain has been released so he is unlikely to have another grand mal seizure before your appointment. He may have absence seizures but they are less scary for you all.

Was the head scan a CT or MRI?

My husband was eventually diagnosed with a brain tumour. If there was something too worrying on the CT they would have seen that and booked MRI for a closer look.

Yes it was a CT (the quick one) - fingers crossed we have no more drama for a week or so, but at least I know to time them and that he's actually OK going through it.

@pomacentrus so sorry to hear that it was a brain tumour causing the problems, I hope it was something treatable and he's well?

Chest pain could be due to breathing due to cpr.

OK as i said a tumour big enough to cause immediate problems should have been visible on the CT so fingers crossed its not that.

Lots of people just have one seizure and thats it. Has he been under particular stress?

Various forms of epilepsy, which can be managed well with medication. Has he had any head trauma recently?

There are benign slow-growing tumours he could have been living with for years.

My husband died from his tumour 2 weeks ago sadly. But his was very much at the worse case scenario end so Do Not Panic!!!

I've posted on hear not to worry you but because the first seizure where I didn't know what was happening and thought he was dying in front of me of a heart attack or something was one of the worst points. So look after yourself and your kids.

@Timeforabiscuit well depending on where you are located the free bus pass might include train and/or tram too. And yes, don't pay for the epilepsy meds as he's entitled to free prescriptions. I think you might have to claim the first one back though as presumably you won't have the card by then, but it's definitely worth getting as the card is valid for 5 years and you can carry on using it for other prescriptions even if you get taken off the epilepsy meds.

I'm inclined to agree that had they picked up anything at all worrying on the CT then they'd have sent him for an MRI. I had my CT scan at the local hospital then was ferried to the major stroke unit for all sorts of tests, including MRI scans, until they realised that it was a brain tumour. Can you update us once he's had the appointment, please? Hope it all goes well!

@pomacentrus sorry to hear about your husband. Hope his tumour is/was a good one. Whether or not people remember seizures is completely down to the type of seziures they have... Time slows right down for me when I'm having them and I focus on particular sounds which end up out of context. I vividly remember thinking "here we go again" when I had my last tonic cluster ones as I'd had so many that day. We were watching Cold Feet and my brain made the normal chatter sound like the characters were having VERY loud sex and I knew it wasn't that kind of programme and was so confused but I definitely knew I was having a seizure