Husband not taking medical event (seizure/tia)?? seriously. What do i do?

[Fivegreenfrogs]

I'm so scared and I'm at a loss as to what to do.
He's massively down played this. Partially as he has no memory of what happened (he says oh I just fainted) and partially because that's his hyper independent personality.
I did call an ambulance and made sure he got in it. At the time that wasn't hard as he was not completely aware of what was happening.. asked me in the ambulance where we were etc.
But once at A&E he kept trying to leave in between sleeping on my lap. Any time he'd wake he'd ask why we were there, say he was fine and it was a waste of time.
I had to take his phone and car keys off him so he wouldn't drive straight home when they let us go. They told him not to drive for at least 24 hours but he was trying to drive home. I managed to prevent this for ten hours.. which tbf he did mostly sleep through only waking once and trying to leave, but easily being persuaded back to bed. Eventually he did get the keys off me and drive home which I guess we had to as we were at a friend's house in the middle of nowhere (i can't drive) and she couldn't have us staying any longer. We also needed to pick our kids up from my mum's who had already had them far longer than she had agreed to. (She's disabled so it just wouldn't have been ok to leave them there longer) I do regret giving him back his keys though. I was terrified the whole way home although he drove perfectly fine.
He then slept 12 hours over night and has been unusually tired since although won't admit this.
The bad thing is that this happened out of area so even though I got him to ring the GP the next morning they had no record of any of it. It's now been several days and they still don't have the discharge notes.
My DH is also still saying he just fainted so I'm worried they won't take it seriously.
He did not just faint.
We were at my friends house. Staying overnight as another friend was briefly visiting from the country where he lives. So we just had takeaway and were catching up and watching a documentary. We did have some drinks but no one was drunk. I had two beers for example.
I went up to bed about midnight. So did my friend who's house it was. My husband stayed downstairs with male friend watching another documentary.
Next thing I know the friend is shaking me awake, tearful, saying my husband has collapsed.
I run downstairs and my husband is laid on the floor. His eyes are wide open and his face is contorted into this kind of snarl, with one side of his mouth up.
I rush to him and obviously try speaking to him but he doesn't respond at all. His eyes don't even move when I wave my hand in front of him.
My friend says that they were just talking normally then my husband had stood up saying he was going to turn in. He had then walked towards the door but stumbled and waved his arms about. He then knelt down and leaned against the table. My friend went over and asked if he were OK. Apparently my husband did reply but was making no sense and not saying real words. He then suddenly flopped backwards into the position he was in when I came in and had been like that, eyes open but unresponsive, for 5 mins. He got my other friend up and then me up. My husband was breathing but quite heavily. My friend said he had previously made some strange sounds.
I said we need to ring an ambulance. Which I did and whilst on the phone to them my husband suddenly sat up. The woman on the phone asked to speak to him and I handed him the phone which he took.. but when he spoke it was just nonsense so I got the phone back.
The ambulance arrived and they did various tests on him including an ecg. At this point he was saying normal words but didn't seem to understand what was going on at all. He just did what they said. But when they advised he come to hospital he was suprised to see the ambulance abd asked who it was for. When we were sat in the ambulance he asked where we were. He then asked how we had got to my friends house.

After we had been sat in A&E a while he did remember how and why we were at my friends house but had no memory of what happened apart from feeling tired. So he said he must have fainted.
I do not think this was fainting.
He had another ecg at the hospital as well as some bloods and a CT scan. None of this showed anything untoward.
The doctor we saw said she would have referred him to neurology but he wasn't in area so he would have to follow up with his GP ASAP.
It's been a few days now and the notes haven't gone across yet. He told the GP he felt fine when he rang which is a lie. He also framed it as fainting.
It was really traumatic and I'm just at a loss as to how to make him take it seriously and actually get checked out.
He had this week booked off work anyway luckily. But he drives for work! Which i am very frightened about. What if it happens again??
Any advice from anyone about what could have happened here and what I should be expecting from the GP would be great.
And any advice on how to get through to my husband would also be great.

Assuming you can't get anywhere with GP and quickly, I would contact one of your local NHS consultants via their private practice (bit of googling). Then if treatment is needed he can be referred back into the NHS. So same doctors, just different route in.

Good idea, see if there is a neurologist at your local ngs trust who has private patients and get him booked in. I'd also email thd original doctor, their name should be on the discharge letter, copy in their units consultant, pals and his GP to say what happened, why was this not in his discharge letter, what follow up is advised, and when was he advised to return to work which involves driving.

Sorry to pile in on the doom and gloom side but my DH (62) had several very similar alarming episodes over the year beginning last September. The diagnosis was TIA and he was put on statins and blood thinners, though cholesterol normal, artery scan normal, etc. Each time he was told not to drive for a month, which he hated. And we were very concerned that even with the meds and pretty healthy lifestyle these things kept happening as repeated TIAs can indicate a larger stroke is on the way. Anyway, he had the worst yet episode (with longer lasting confusion and amnesia) while in France in August and I called paramedics. The French hospital neurologist took one look at him and diagnosed epilepsy, which can apparently often come on in later life. The symptoms, on reflection, were always much more those of a focal seizure than TIA (e.g not one-sided, not really physical apart from strange choking / gobbling noises and eye twitching; nothing physical lasted more than the duration of the episode). He has private medical insurance so had a neurology consultation once back in the UK and the neurologist basically joined all the dots convincingly (eg things like dizzy episodes that didn't imply TIA). He was advised he must hand in his driving licence to the DVLA and hopefully he can get it back after a year without episodes (he's now on seizure meds); this is a serious and non-negotiable legal requirement once seizure is diagnosed. He was like the proverbial bear with a sore head for 6 weeks. Now, 3 months in, we are just about coping but it makes everything (we live in the sticks) so bloody difficult. Luckily he can WFH all the time, though he didn't before. On the plus side, at least we no longer think he's going to die of a stroke at any moment. Neurologist said there's every chance the meds ('Keppra') will ensure he never has any further seizures. I'm not sure to be honest what I think of your DH's case - it seems very likely he's had a seizure and thus shouldn't be driving, but he's 'got away with it' and it will be very tempting to let it slide due to the massive ball ache him not driving would be. But as others have pointed out the consequences could be appalling if it happened again. I guess you're not going to get him to see this, and a one-off seizure IS, I believe, possible. But in all likelihood it'll happen again and then hopefully he will take it seriously. A side note - very scary for kids (my DD is 14 now) if it does happen again, seeing their father not recognising them, etc. Likewise repeated trips to A&E are traumatic for everyone. I really don't envy your situation. Driving is not the be all and end all but it seems a huge part of how many men construe masculinity; and it has numerous practical problems suddenly not being able to do it. However, killing or maiming yourself or others is much worse. If he does persist in driving (and tbh the medical advice gives him licence to do that), tell him to keep an eye out for unusual headaches, feeling 'off' and perhaps phantom tastes / smells. My DH had these in the day or so before each episode though never to the extent of really believing another episode was coming. If I'd known what I know now and thus believed the first episode to be a seizure, I'd have been very worried about letting him drive or being driven by him even after the one-month TIA advisory ban was over. But I didn't know. And nothing bad happened. Also, all the episodes were in a non-active context (though one in a teams meeting, which he was mortified by) so maybe the brain waits till it's not highly focused as it should be while driving...

When my DH had a TIA, he went by.ambulance straight into resus where he was met by the stroke team and dealt with straight away. The paramedics phoned ahead to get this organised. If I'm understanding your posts your DH ended up waiting in a and e. That would suggest that the paramedics didn't think that it was TIA at any point?

Edited to add that it sounds incredibly upsetting for you both.

@Motnight my DH went in twice via A&E despite paramedics suggesting TIA - the clue is in the 'transient' - they knew nothing was still happening so it was 'safe' to leave him waiting in A&E though he was incoherent, had no idea where he was etc. CT scan etc was through A&E with interminable waits back in the waiting room between each stage; about 16 hours in total both times. The first time he was then sent to stroke unit but the second they looked at past notes, decided they couldn't do more and sent him home with followup MRI a couple of weeks later (where nothing showed up).

You've had lots of advice but just to say that if this does happen again, try your best to video it. It will give really useful information to the medical team and nobody will be able to debate if he fainted, how long for, etc.

I have a blood clotting disorder that has taken 30 years to diagnose.

Typically if they suspect a clot has moved and is in the general body a blood test should be able to show clotting factors, if it does, then a CT scan would be ordered.

I'm not sure about for strokes but I know you can pick up if someone has had a stroke historically on a CT scan as that has happened with a relative who went in for eye pain and was told they have already had a stroke and it looks like it was a while ago, and I would have liked to hope that they'd not faff about waiting for bloods to come back to order one, but clearly they don't seem keen in ruling stroke out.

Maybe someone more medical will come along and explain the procedure better.

Very similar train of events for my husband in his 60s. Ended up with a diagnosis of epilepsy well controlled by a top class drug together with statins blood pressure tablets and blood thinners and has been well since but they think it was triggered by a tia although nothing showed up on scans etc. we were told that we still don’t know a lot about what is going on with the brain. He did change afterwards was more anxious and it wasn’t until years later that I joined up all the dots. He got his license back after a year but only ever drove locally and now not at all. I feel his spatial awareness has been affected.

Well done for speaking to his GP, it sounds very scary indeed.

There has been the odd eye roll at this suggestion🤷‍♀️, but it is very realistic: - he must make a will.

Men can be utter idiots when it comes to their own health. I once came home to find my partner googling 'what should I do about this chest pain.' One ambulance, a week in hospital, a stent and a lifetime on tablets later he still has no sense of responsibility towards his own self preservation.

And driving for a living? - he must do absolutely everything to ensure this is investigated and treated. Because he could kill himself. Or someone else - including you and your children.

This is where you have to do the hard thing and get very very resilient. This includes never getting into a car he's driving, and not allowing your children into the car.

Telling him no - and sticking to it. He will hate hearing the word. I'd recommend some assertiveness training.

And learning to drive yourself so you are not dependent on him.

Managing difficult men is - difficult.

My husband had an episode....he called me saying he didn't know where he was ....a place he had known since childhood....he didn't recognise the man with him....again someone he knew....when I arrived he recognised me but kept asking what was happening.....at the time he was taken to an out of area hospital on discharge told not to drive until cleared and he would get a follow up at hospital....no appointment arrived after calling the hospital it turned out our GP should have referred him to our hospital but notes had gone missing.....when he finally got an appointment 10 days later they said it was a TGA transient global amnesia and he was cleared to drive. .

Oh OP. I feel you and I'm sorry you're having to do this shit. I know you will be wanting to look after him, but make sure you are looking after yourself too. It's a huge burden you're carrying right now, so take time just for you.

I had a similar experience with DPs epilepsy. He just couldn't accept it at all and kept discharging himself while postictal (it was covid so I wasn't allowed with him...) and shutting down the very limited options of help I fought to get. No one medical was interested at all for 2 years until I met an extraordinary, caring and supportive paramedic who forced A and E to listen to me not him, having seen the state of him on her arrival when he was purple and not breathing. He had a seizure over an hour long before his neurology appointment came through and was put in a coma; he's never fully recovered. It was awful and horrifically hard to fight both him and professionals to get care.

I finally got through to him by forcefully explaining that he was putting my kids at risk by not seeking proper help and I considered that a huge issue and our relationship over if he didn't get help, to protect them from this shit show. His love for his family overrode his refusal to accept his illness. Then he had the huge seizure soon after, which was harder to ignore... I also showed him a recording of an episode. He got why I was so distressed then and only then.

My very best wishes to you on this difficult journey. I hope you both recover fully and this is just a strange one off, but if it's not then that's my best advice on forcing him to take it seriously. I say you too, because it's an awful thing to have to witness and process with no real explanation; look after yourself love.

@jannier how terrifying. Is he ok now?

Ok I’m going to be on the positive side. You’ve now had emergency medicine assessment and GP review. He’s been given the OK to drive so he’s legally covered and insured. There’s no evidence that he had a stroke or a TIA. They don’t think it was a seizure. That’s all good news.

I would take a breath at this point. Think about yourself; you had a horrible experience too. Give yourself some time to recover.

I personally wouldn’t lay out the cash for a private neurologist at this point. If he were sitting without a driving licence on a waiting list with his mood going through the floor, then I might well do it at that point.

Yes it took about 2 weeks to get over tiredness but chances of another are something like1in 50000.

That's good

The chance of a person having a seizure in their lifetime is 1 in 26. One seizure does not an epileptic make. There are many causes such as dehydration, drugs, epilepsy, cardio issues, insulin-related issues, shock. Sometimes seizures are psychological. He might never have one again. He might have one next week. He should have been honest as he's potentially risking his health, breaking the law and - having had one and not declared it - your insurance is now invalid. Irrespective of the cause, you cannot drive for a year after having a seizure. It doesn't matter if he relies on driving for work. It's his ethical responsibility to admit to it. The Glasgow crash which killed a number of people was caused by someone lying about not having seizures.

Doesn't surprise me, but they don't really have a lot to go on. The hospital did tests and didn't find anything wrong. A one off event does not wave any flags...

It really might be just a faint. People always assume fainters just close their eyes and go limp, but a faint can look a lot like a seizure.

I used to faint a lot. Laypeople would always think it was a seizure, because I'm semi conscious and "fighting" because everything is black and I don't know which way up I am. But if I fainted in front of medical staff, they would say it's just a faint and were not concerned.

Initially I was diagnosed with epilepsy and medicated because people panicked and called ambulances and told medical staff that it was absolutely definitely a seizure - I was stiff and pulling faces.

I lost my driving licence, was prescribed medication and had horrible side effects for years, had regular blood tests, and cables glued to my head for EEGs, and prodded and poked and scrutinized and....eventually, after several years, neurologists decided it was just fainting after all.

I lost about 5 years of my life to a condition I didn't even have. I was too scared to drive for 10 years after they gave me back my licence, and I still worry about it.

You are right to be concerned, especially as he drives for a living, and he should definitely go to his GP and get blood tests e.g. diabetes and ask for a referral for an EEG. Get things ruled out. If he has another event then yes, film it.

I'm not sure of my point. Just that consequences of being wrong go both ways, I guess 🤷

I’d try to get it I writing that he’s allowed to drive. You may well find the GP is reluctant to do that…I’d also be chasing up the hospital and asking why the discharge letter didn’t mention neurology when the doctor there did.

You question a seizure in your title. If it was a seizure he definitely shouldn’t be driving. We have epilepsy in the family but I also have two friends who both had one-off seizures (that is, just the one, nothing since and no epilepsy diagnosis). Those came out of the blue. One person did say they’d been tired beforehand, but there was no obvious trigger, no reason. Both recovered quickly and neither had any memory of their seizures. However, afterwards neither of them were allowed to drive for a period of months (12 months, I think).

It’s not just up to doctors to report unfit drivers. You/your friend saw what happened, and if you think it was more than fainting, which you clearly do, you should report it to the DVLA. That way you’ll know you’ve done everything you can.

^“Isolated seizures
An isolated seizure is an unprovoked seizure experienced by a person who has not had any other unprovoked seizures during the preceding 5 years. A person who has an isolated seizure will qualify for a driving licence if they are free from any further seizure for 6 months, unless there are clinical factors or results of investigations suggesting an underlying causative factor that may increase the risk of a further seizure, in which case 12 months is required before relicensing.”^

https://www.gov.uk/guidance/neurological-disorders-assessing-fitness-to-drive#:~:text=Isolated%20seizures,months%20is%20required%20before%20relicensing.

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@Donostiera that's shocking.