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.

brainstories thankyou for correcting me on the remembering the seizures - I was extrapolating from my sample of 1

Fascinating to hear your description of how you can tell the seizure is coming. Must be scary for you though. Hope your tumour continues to behave.

@pomacentrus

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.

I have to disagree with part of your post. I had 5 tonic clonic/grand mal seizures within two weeks so I wouldn't say he'll be fine until his appointment.

Everyone with epilepsy is different

This feels so scary for you.
My DB has a fit about 3 years ago. Getting all the tests and waiting for results took a long time and was very worrying, BUT in the end there was no underlying cause. He was very stressed, over worked and it just seemed his body decided to tell him to pack it in for a while.

He did take quite a while to recover from initial fit- talking weeks not days so be prepared for that.

He was signed off work for a long time through all the tests, and then on a phased return to work. He really changed his work patterns and his work got a big kick in the backside for how much stress they put him under.

He also had to stop driving immediately. He volunteered up his licence and as a result of that he did get it back in about 9 months, so worth checking if they’ll be more flexible if he volunteers it up- the clinic should advise.

Becuase he couldn’t drive he had to walk for time he was off work. He got fitter. Felt better.

In the end it was a bit of a dramatic wake up call for him to change his work life balance.

He’s fine now. No fits since. My understanding is this is most common in adults. A 1 off with no real explanation

Hope it all works out 💐

@pomacentrus I am so sorry, and sincerely, thank you for sharing what it was like in the early stages. My worry list was heart attack, then stroke, and now as you say tumour - my dad also died of a brain tumour after a lengthy illness, it must be an incredibly tough time for you.

It's just so bizarre that seizures can either be so life altering, or a one off and completely disappear!

Dh has been under work stress, but lately had eased up - good to know that the recovery should be in the weeks rather than days.

Just as an aside - take the lock off the bathroom door if you have one (lock that is, I assume theres a door!!) Hopefully it was an isolated seizure but you dont want him trapped in there.

My fits came out of the blue. I went to hospital on several occasions and no-one seemed to want to do anything about them! It was really frustrating, possible made worse because I was bloody awake during them.

They eventually did a CT scan to check it wasn't a stroke and then an MRI - which 'showed up' something but I would have to wait to see a neurologist (6 months plus) while still having bloody fits.

I got the MRI and went private a day or two later. Turns out I had Multiple Sclerosis which, due to a lesion placement gave me epilepsy. He gave me medication that day for epilepsy and I haven't had a fit since (still taking the medication) and was back driving one year later (on a 3 year licence).

Honestly the fits were the most scary thing I've ever encountered. I still don't lock the bathroom door to this day.

So following up with an update.

DH had his first appointment with the specialist clinic (he was NOT amused that this was based in geriatrics). The clinician was fantastic and asked for all hid questions up front and it was all covered.

It appears dh may have been having smaller seizures for some time, as he mentioned he was smelling smoke which no one else could (but we put down to our draughty house!). That combined with atrocious sleep and high stress job , may have triggered them, but nothing is certain.

He has an MRI booked next week, so hopefully that can rule out anything else - but in the meantime it looks like medication for epilepsy.

Kids are weathering things, although youngest was a bit teary when we talked about today's appointment. I think she was hoping it would all just go away.

@Timeforabiscuit thanks for the update! It sounds like you've had a packed few days and I am so glad that the doctor you saw was helpful as they're not all like that!

Looking back, I think I likely had mini seizures prior to my big seizure but as they're split seconds and you just feel a bit odd, I didn't really think much of it.

Make sure he asks for a claim form so that he can claim back the cost of his prescription once he gets the exemption certificate sorted. It only takes a few days usually.

If it is "only" epilepsy which can easily be controlled then that's not unusual or something that should impact the kids in the long term. Ok they might have to make some adjustments like having the bathroom door unlocked, and it is really scary seeing someone have a seizure but assuming they're old enough to learn what to do if/when that happens then there's nothing to be scared of really.

Thanks @brainstories568 - I certainly won't take a good clinician for granted!

Do you know where I go to get a claim form? Is it just on the government.uk website or requested via gp?

Dh will be having epilepsy medication too (not sure which ones, but he's been warned that side effects include being "more quick to anger" which sounds fun!

And there's also a sleep study, and brain activity scan - so it's going to be a packed few weeks and months!

@Timeforabiscuit pretty sure I just asked at the GPs when I collected the prescription. They fill it out and you have to sign it, I think. It definitely wasn't hard, but you can only claim back prescription costs already paid out if you get a certain form at the time of payment. Or at least that's how it used to be back in 2015. When I was pregnant with my toddler I heard that the free prescription card might be being replaced by an electronic system that logs it automatically, but unsure where they've got to with that!

Oh and he might find it takes some time to find the "right" epilepsy meds. They put me on the generic brand levitceram initially and I had a few more seizures then I swapped to the brand name Keppra and haven't had a seizure since. When I asked the consultant about it he said that they tend to try people out on the generic ones as they don't cost as much but if they end up in a&e due to a seizure then they try them with the branded ones as it's cheaper than a trip to a&e. Not sure how true that is, but it made me laugh.

@brainstories568 - the brand name vs. generic sounds worryingly plausible

Well we navigated the online surrender of the driving license with dh behaving like a truculent teen the whole time. I think its masking the fact that he really loves driving, and it's something he can't do now (and he hates buses with a passion).

He's also been having more small seizures (burning smell) which restarts the clock, so all round a few crap days.

Just an update, been levelling up his meds (Levetiracetam) which has been pretty wearing with the irritability and sleepiness.

He's at his full prescribed level now, and seems better - but it's now coming to terms with what the future holds, as he tried going back to work and folded after a couple of meetings, literally couldn't process what to do. He wasn't stable on his medication, so im hoping he might be better able to handle office work- but not sure he's going to be able the pace and complexity of multitasking.

He's signed off now (which is helping), but his anxiety of what to do next is hitting hard, as his profession is the only thing he's done since leaving school. He doesn't want to be OK or poor at something he was great at.

I feel like an absolute train wreck, pulled my back,

@Timeforabiscuit - glad to hear your DH is doing ok. Which clinic was he referred to ? I'm asking as I had a seizure last week - first one and completely out of the blue. They did a ct scan/ ecg/ chest x ray/ and blood and urine tests and all came back fine. I've been discharged with a number to call if it happens again - but reading your thread makes me think I should have asked for a referral for more tests ?

Hi @Liverpoolarefab, it was around a two week wait for a neurologist to contact us from the first fit clinic based in geriatrics - and then once that assessment happened a load more tests and medication were ordered.

I just phoned up the a and e department and said that I was really sorry to bother them but dh can't really remember what happened and what was happening next, and if there were any notes on the system - they were massively helpful saying who we would be hearing from and the appointment letters came through a few days later.

One thing I have come to understand is that everyone's epilepsy is different, and one off seizures are actually incredibly common - so depending on what the assessment comes out with, it may be a watch and wait for 6 months is the best thing.

I hope you are feeling OK in yourself- there is also epilepsy uk, who have a helpline which was really helpful for dh to talk to someone impartial but knowledgeable.

I take epilepsy meds for a different condition and some of them can cause cognitive issues (brain fog and poor memory) so it would be worth talking to the team about swapping to a different drug.

It must be terrifying the first time it happens, I wondered if it might help your children if they could go on a first aid course and learn what to do / not do and how to help Dad if it happened again.

We've definitely had side effects from the medication, but these have eased up considerably now - I think he's of the mind that now he isn't getting any little seizures at all, he'd rather be seizure free and get the all clear on the further MRI tests and get his sleep sorted before tweaking anything. If I suggested changing meds now after all the effort of levelling it up on the current batch I think he'd cry!

I'm really wary of how best to approach it with the kids, particularly the youngest, as we don't want them to be in a position of feeling responsible - and we have been barely present/adequate over the last few weeks as parents so I don't want to compound it.

We have looked at the epilepsy first aid course, but would rather they weren't in a situation where they'd need to use it iyswim.

Thanks @Timeforabiscuit for your reply. I don't have a referral to the first fit clinic - but I'm going to ask for it from my go, as I feel I should have an mri. Thanks also for the heads up on epilepsy uk - hope you're holding up ok !

No problem at all! Navigating all this for the first time is so hard, so I'm glad the information can help!

I'm really wary of how best to approach it with the kids, particularly the youngest, as we don't want them to be in a position of feeling responsible - and we have been barely present/adequate over the last few weeks as parents so I don't want to compound it.

I completely understand where you are coming from and it’s hard to know what to do for the best.

I though it was worth mentioning as it was very beneficial to kids at an activity I attend where we had a teen with uncontrolled epilepsy.

The other kids were quite panicky and scared the first few times he had siezures, but the course helped them feel more in control, even though there was always an adult there to deal with it.

You know your kids best and you’ll know when / if it’s beneficial.

Thanks @RestingPandaFace, I'm definitely keeping it on the burner, but mainly basing it on if dh has another seizure or if the next MRI highlights something problematic.

We've had a very rough few days, where ironically he's been feeling well in himself and I've thrown various toys out of the pram as he's suddenly thinking he's fine going back to work when he was barely a zombie for two weeks and couldnt hold a conversation for ten minutes at the weekend. The euros has perked him up considerably, but I'm still feeling like the pessimist and having trouble with the idea of him being well when he was really struggling so much.

His personality is so very different, he's being really light hearted and affectionate and then behaving like a toddler when I've tuned out or not paying him the right attention, seems to be affected mainly by tiredness, but between that and hormonal teens, I need to vent somewhere (here helps!)