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Please help me stop panicking - seizures

(18 Posts)
Gizmo Mon 25-Apr-05 11:05:40

So, DH, DS and I were out in town walking around in the sunshine when DH twitched. If I’d blinked I would have missed it. 10 seconds later he started to tremble and couldn’t walk. Over the next two minutes, the seizures became stronger and closer together until he collapsed and had a full on grand mal fit. Convulsions, vomiting, bit tongue, going blue – the whole works.



About three minutes later he started to come round and we had a nice ride in the ambulance to hospital (much to DS’s delight) where they did some blood tests, x-rayed DH (I couldn’t catch him as he went down so he caught his head a nice crack on the pavement) and then let us go home. Today he has an appointment with a neurologist.

I expect they will do a load of tests and no doubt we will feel better when we have some idea what this might be, but I’m very jittery. So many things going round my head – just the sheer shock of seeing DH (only 34 and really, really fit) in this state, the fear of losing him (and I love him so much) until I worked out what was happening, the fear still of losing him (although my conscious mind knows that is irrational). And the practical stuff too, like having to drive him everywhere and him having to miss work for hospital appointments and whether it’s safe to leave him and ds alone together.

I know it’s entirely possible that this may be a one off but we won’t know ever be confident it is until he has another fit (IYSWIM).

Talk to me people! Does anyone live with an epileptic? How do you manage it with childcare/working/the rest of your life? Does the condition have any impact on how you relate to each other (DH and I have the opposite of a carer/patient relationship: it would be hugely stressful if that’s how we had to start viewing each other)?

This has really got me rattled, I think – my conscious mind is busy trying to deal with the practicalities of the situation and ignoring the subconscious voice of panic. I want it just to go away...not to have happened...even if DS does enjoy the ambulances...

pindy Mon 25-Apr-05 11:37:25

So sorry to hear what happened. I have no advice or experience to offer but wanted to bump it up for you, hopefully some one can help.

Hope all goes well at the hospital

Gizmo Mon 25-Apr-05 11:41:15

Thanks Pindy

I know I shouldn't make a big deal out of it: it may not be full blown epilepsy, but even if it is, plenty of people live with it just fine.

It's just such a shock, and it's hard to get a sense of perspective about how much it might affect our lives. Eeeek!!!

edam Mon 25-Apr-05 11:53:52

Gizmo, I have epilepsy. I know (from dh) that it's very scary watching someone have a seizure. But you are quite right, one seizure does not make a diagnosis - epilepsy is defined as the tendency to have recurrent seizures. You'd be surprised how many people have one or two but never go on to develop formal epilepsy.
It's unusual (but not unknown) to develop epilepsy in adulthood with no obvious cause like a head injury. Happened to me - I was 29 when I had my first seizure. The good news is it is (often) controllable and is perfectly possible to live a normal life - I have a full-time demanding (and fairly senior) job as well as ds and a social life (whenever ds allows). Driving is a problem, of course – I don't know whether you lose your licence after one seizure but DVLA should be able to advise.
Have you checked out the Epilepsy Action website? here

ggglimpopo Mon 25-Apr-05 12:13:22

Message withdrawn

lou33 Mon 25-Apr-05 13:23:34

I'm epileptic too, have been since i was a baby. The main impact it has on me is with driving, and I admit I hate having to rely on dh to take me places, but apart from that I don't think it impacts too much into my life. I certainly worked, had kids like everyne else, and definitely don't see our relationship as patient/carer.

I have to wait until the end of nov then I am going to try for driving lessons. You have to be fit free for a year, and I had 2 tonic clonic fits within 3 weeks of each other, just as my year was coming up, which is v unusual for me.

You are more than welcome to cat me if you want, but please bear in mind that 1 seizure doesn't mean epilepsy.

NomDePlume Mon 25-Apr-05 13:28:46

Lou, that is fantastic about the driving lessons . It's funny you said about the one year fit-free though, as my best childhood friend was diagnosed as epileptic at 16 (almost 25 now), and she's been told it's 2 years fit-free by her specialist fella ? She's never managed to get 2 years free, closest she got was 21 months. Really, really frustrates her too.

NomDePlume Mon 25-Apr-05 13:36:14

I wonder if it varies from diagnosis to diagnosis..?

Gizmo Mon 25-Apr-05 14:06:15

Thanks so much for your responses, guys: it's really helpful to hear confirmation that life as we know it is not about to grind to a halt!

Some updates: DH saw a neurologist this morning and had a scan which didn't show anything dramatic. Working theory for now is that it is a one off, possibly triggered by a bit of a red wine binge the night before (DH certainly harbouring a sheepish hangover on Saturday morning). There are some more tests to be done later in the week to investigate a few other possibilities.

Lou, Edam - sorry, I didn't want to give the impression that I was going to turn into saintly Florence Nightingale-type-person tending to wan and sickly hubby (you know, darkened room, lowered voices, 'how long has he got, Doctor?) but it's nice to know that even if it does turn out to be epilepsy, he has no excuse not to take turns with the childcare!

Unusually, it's definitely scared DH as well as me, and it's going to take a while before we feel 'at home' with it. We'll just have to be patient, wait for the results of more scans and lay off the red wine, I guess. It's hard though: I'd like to stop being worried about this, and know enough to tackle it head on. Edam, if you don't mind me asking, how long did it take you adjust to your diagnosis?

On a practical note, the consultant told DH that he won't be able to drive for 12 months, which is a major bummer, although thankfully we live in a small town and can walk/cycle most places.

ark Mon 25-Apr-05 14:20:42

Hi Gizmo - I had Rolandic Epilepsy (Night time) fromm 11 - 16, with regards to the driving issue, I understood from the DVLA that it is very case specific, dispite not having a fit for 5 years I still have a 3 year license to be reviewed - still on similar license even though I am now 25!!!! . Meanwhile my sister, developed Epilepsy again aged 24, and only had to be fit free for a year. There are so many different types of epilepsy some more severe than others - so whilsts it is difficult don't make assumptions about the future until you get a diagnosis. With regards to getting used to having epilepsy, I was young so its hard to say but certainly it is something that plays on my mind now - if I ever feel "odd" I had begun to recognise triggers and feelings, as I became accustomed to it.

HTH

Hope all the apointments go well

Love
a

lou33 Mon 25-Apr-05 14:32:41

saw a neurologist withs ds2 the other day and he was definite it is now 1 year fit free, and so was my gp. Used to be longer though.

NomDePlume Mon 25-Apr-05 14:34:48

I must dbl check that Kel has been updated on that one.

edam Mon 25-Apr-05 14:59:10

That's funny (peculiar), Ark, I have sleep epilepsy but have never heard it called 'Rolandic'.
Gizmo, I'm not sure this is what you want to hear, but for me, it was a very traumatic time. I thought dh was over-reacting at first – since I was asleep I didn't realise how serious it had been. So I got carted off in an ambulance three times before I was finally diagnosed. EEG didn't show anything unusual (it doesn't unless you are actually having a seizure at the time) but the MRI brain scan did.
Once I'd realised there was something wrong, I was very, very distressed. The only person I'd ever known with epilepsy was a great-uncle who had learning difficulties and was institutionalised. I was terrified that I'd die, turn into a vegetable, lose my job and social life, never have kids - real drama queen stuff! I tried very hard to hide it from the world, ended up breaking down at work - everyone thought my boss was evil bastard who had done something terrible to me because I'd broken down in tears in his office and had to be sent home in a taxi . The worst bit was taking anti-epileptic medicine - because it acts to calm your brain down, at first it does slow your thinking until you adjust, and I found that very upsetting. Probably didn't help that I had a tosser of a neurologist who said some very thoughtless things
I think it took about a month to six weeks once I'd started anti-epileptic medicine for everything to go back to normal. Luckily it really wasn't as awful as I'd imagined and hasn't affected my life too much - although dh was warned when we had ds that he'd have to do the getting up in the middle of the night, which suited me fine .
Your dh may well not have epilepsy. Or, if he does, he may well have a form that is easily controlled by medicine. I'm not sure my experience is reassuring but life since then has been fine - it really hasn't affected me day to day that much. I'm still not keen to mention it at work though but that's because I worry that there's still a lot of misunderstanding and prejudice. Haven't actually come across any of this, though.

lou33 Mon 25-Apr-05 15:02:15

bloody hell, wish dh had got up in the night for ours!

lou33 Mon 25-Apr-05 15:03:52

Oh I have had prejudice. I was rediagnosed with epilepsy when i as 22, after being allegedly free from it since i was 7. Friend of dh got freaked out by it and called dh saying i was mad, ranting on to him.

edam Mon 25-Apr-05 15:09:25

Allegedly the night-time thing was because I have seizures in my sleep - I think my specialist nurse is just a wonderful, warm, caring man who understands what mothers need!

Lou, WTF? That's awful.

Gizmo Mon 25-Apr-05 15:12:57

Edam

Thank you for being so frank...it's actually helpful to hear a story of a difficult adjustment, because it represents one end of the scale of potential outcomes for us. And you've survived, and thrived, and now I won't be unprepared if it does come to it.

It's particularly helpful to know about the effect of medication on your thinking. I know DH would loathe that reaction: a lot of his job is based on pure thinking ability, so we'd need to put together some sort of arrangements for the transistion period, until he's made the adjustment...

Oh, but I'm jumping the gun here - of course, we have a while to go before we know whether we'll be sharing your situation. In a way, it would be easier if it was me with the seizures. It's very hard watching DH being worried about this; even harder that I think he might be trying to avoid sharing his worries so as not to upset me. It would be lovely to have a nice conclusive 'this is a one off, don't worry it won't happen again' diagnosis, but the more I find out, the more I see that it's not really possible to have that sort of diagnosis in this situation...

edam Mon 25-Apr-05 15:26:56

Glad if any of that ramble helped, Gizmo.
If it did come to formal diagnosis and taking medicine, dh would just be signed off sick for a few weeks - I certainly wasn't capable of working (I'm a journalist) during that stage and was off for something like four, five or six weeks.
It was frightening, but the thing to remember, if it comes to that, is that it is temporary. Since starting on anti-epileptic medication I've been very successful in my career – it really hasn't affected my performance at work at all.

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