Moose here, Not SEN children but could someone please advise me - epilepsy

[moosemama]

Well my weekend away was disastrous in many ways, but the most significant one was spending the whole of today in the Acute Medical Ward of the hospital after having what is believed to be two fits last night. (Meanwhile my poor old Mum was coping dd recovering from a vomiting bug and ds2 coming down with dd's bug really badly and even throwing up in his sleep over and over - so she had to sit up all night with the poor mite. )

As for the weekend away, I didn't even make it to the meal. 6.30 pm, ordered my meal, felt a bit odd, realised it was neurological and dh took me back to our room - which was in the building next door. Went to bed and after a while felt well enough to think I was just going to sleep and would probably feel better later and perhaps join the guys for a drink before the end of the night. So sent dh back to join our friends.

Woke up an hour later felt odd and disorientated. Went to the bathroom, sat on the loo, felt odd and then woke up under the toilet, head and feet the wrong way to have just fallen off/fainted. When I came round I was aware of a sort of growling noise, and then a pain in my head. I realised when I came out of it that the pain was my head repeatedly bashing the underside of the wall hung toilet bowl.

Lay there for a few minutes until I felt I could move, got up wobbly and sat on the loo, then wham - woke up under the sink on the other side of the room - it was a really big bathroom, so again too far away to have just fallen.

There was no warning, although I did feel really strange. No dizziness and I didn't feel link I was fainting - which has happened to me a lot over the years and I would recognise that "uh-oh, here I go, slidey feeling". It was literally just, one minute I was sitting on the loo, the next I was under it with a head covered in lumps - the worst one being my left eye socket. Fortunately it didn't develop into a full on black-eye, just a shadowy bruise that can be mistaken for a shadow - can't imagine having to walk into school tomorrow with a black-eye.

I also ache all over today and seem to have wrenched my shoulder - although I can't imagine how.

So there I was, locked into our suite on my own feeling very scared and shaky, with dh at a gig in a separate building. Managed to crawl back to the bedroom and grab my phone and by a miracle got pretty much the only decent mobile signal I had all day to send a text that read He L p.

Dh is now back in my good books after coming thundering through the pouring shropshire rain and up three flights of stairs to rescue me. He had been drinking so couldn't drive (not that we knew where the hospital was) and all I wanted to do was sleep and wouldn't let him call an ambulance, so he insisted on checking my pupil reflexes for concussion, before sitting with me until I fell asleep.

Sooo, my question is can you be aware you are having or rather coming out of a fit, or would you be completely oblivious to it? I have always thought you have absolutely no idea what's going on and because I was on my own, no-one else saw what happened.

The doctor I eventually saw at the hospital felt it was suspicious enough for them to want to keep me in and run some tests tomorrow, but I refused as ds1 was already in a state, having expected us back at 4 pm and Mum wanted him to sleep over there, which would have screwed the whole week up for him due to the routine change.

Most of the standard neuro proddy pokey tests they did today were normal, but I had a positive Babinski's reflex in my left foot (the one with Complex Regional Pain) and I have felt like I have a really bad hangover all day - which is rather unfair considering I didn't get a chance to drink. In the end they agreed to discharge with an urgent referral for outpatient EEG and yet another MRI, plus a letter informing my neurologist.

I really want to believe I just fainted, but know it didn't feel like that and I to be honest I get upset and frightened just thinking about how it felt at the time. My friends want to rebook in January for a 40th birthday, but I can't bear the thought of going back there.

Leonie - were other parents taking photos? I know some schools still allow it. Flash photography with lots of flashes is NOT a good thing for lots of people with epilepsy.

My school hasn't banned photos, but they make adjustments for me by sitting me at one end, so its only in one side, always putting my DC's at that side, and I often wear sunglasses. Which doesn't look at all odd indoors in the middle of December...

If your husband is embarrassed by it them he's a fool. It shouldn't even be embarrassing to YOU, let alone to people around you.

The only time I feel embarrassed is when I lose control of my bladder.

Just have a chat to your DC's, explain that your brain isn't wired up properly, and that sometimes it can make you feel a bit funny. That it's nothing to worry about, just if they see mummy go like that to press 2 on her phone. (2 is a speed dial to my emergency contact...)

Treat it like it's just one of those things - explain to them that just like a person can be in a wheelchair because their legs don't work very well, sometimes you might not seem your usual self because your brain doesn't always work very well.

Once they are old enough to manhandle you, teach them to put you in the recovery position - most of mine, even with SN's, could manage it by 7.

Can you both please set up a speed dial number to your emergency contact number, and also store that number in your mobiles under 'ICE' (In Case of Emergency). Paramedics DO look for the ICE number, despite what people say. Personal experience.

Also chat to the people you wish to use as your emergency contact/s, and explain to them that they should check on you even if they get a silent phonecall.

Also teach your DC's your PROPER name (not just 'Mummy' - which is what paramedics got told by DS2 once when I was out with just him when he was 4yo and I'd had a seizure...)

Simple things, but could prove essential in an emergency.

Just clapping? Were there lots of parents (over 100?)

It IS possible to have seizures where the trigger is a particular sound...

This IS quite complex. And unusual!

Would you consider talking to your local volunteer from Epilepsy Action? They also have a forum, I haven't used it in years, because you have to send in a form because they get a lot of trolls, but it IS a supportive forum, albeit a little twee. Not as twee as the American one I found before I knew about the Epilepsy Action one though!

You NEED to go through it again and again with them, because then they know what might happen and what they have to do if it does, and it focuses them so that they don't melt down - if mum does X, Y or Z, I have to do A, B and C...

It makes it seem like just something that happens, and they have to do something. I have found that my DC's have coped far better than I thought they would - in fact, better than me, quite often.

The feeling of embarrassment you are describing - it's actually a paranoia that happens only during and immediately after the seizure, yes? It's part of the seizure.

Nobody is REALLY looking at you - often they won't have even NOTICED what's going on with you, unless you fall on the floor. Other people are not as observant as you think!

It's the 'dread' and 'foreboding' thing that can be part of Complex Partials.

Technically, you don't ACTUALLY need a 'second' diagnosis - you have ALWAYS had epilepsy, you have just been lucky enough to have a number of years seizure free.

The epilepsy was still there though.

What you really need is a referral to a Neuro to discuss what meds to use now your long-standing epilepsy is active again...

Look on it as epilepsy that's always been there, but with periods of inactivity when you have been seizure and med free.

It's how I looked at it when mine restarted in February after two years without any major seizures, only little ones very rarely that were months apart. Now they aren't, they are days apart if I'm lucky.

But it's still a recurrence of the epilepsy that has been there since I was dxd originally 9 years ago IYSWIM.

You have ALWAYS had epilepsy ever since your original diagnosis. It's a life-long chronic health condition that can be inactive for years but start up again.

Physical exhsustion yes, but the fact that the clapping seemed to be the immediate precedent is concerning as I KNOW somebody personally who has that as a seizure trigger.

Ugh. THEY might have to, the NHS is terrible for that, but maybe it's how YOU need to look at it to help you to get your head around it?

Jump through the NHS's daft 'hoops', all the while coping with this recurrence of your pre-existing epilepsy by getting your head around the fact that it's always been there, but like a volcano, it's just been dormant for years. Now it's erupting again!

Leonie - me too, me too. I 'say' I was seizure free for 2-3 years, but really I was free of 'big' seizures, if I'm honest with myself, not free of ALL seizure activity!

Long term benzo's are a seizure risk in themselves. Did the GP prescribing them know of your history of epilepsy?

How to make it clear to your husband - ask him what would happen if you were driving your DC's to town and you had a seizure while you were driving. Then sit back and watch the cogs turn...

I think they just don't equate seizure = Loss of consciousness = crash without actually REALLY thinking about it.

My Ex was more put out by me surrendering my licence originally than I was - he can't pass his test because of his dyspraxia, and I could no longer drive him to work so he had to find a new job, that he didn't like so much. He managed to conveniently ignore the clear facts that it meant 4 hours a day on the buses to do my school run (different school back then, only 30 mins each way now...), and it actually made MY life very inconvenient too, but the fact that it was for SAFETY REASONS had totally eluded him...

It wasn't until I sat him down and asked him what would happen if I had a seizure while the DC's were in the car that he twigged!

Point out that LEGALLY ANY seizure or blackout means that you should surrender your licence immediately - tell him to look on the back of his licence or online!

It's NOT just if you get a diagnosis of epilepsy, it's from the very first seizure or blackout that you are meant to surrender your licence.

You're not being lazy - you're following the law!

Ah. My Ex also has ASD. Very wearing! Extra stress, isn't it.

What's so frustrating is that we both still love each other, but we can't cope with being in a relationship and living together, because it is too much work for me, when I've got my own issues, plus the DC's issues to deal with already.

Always takes so much explaining.

I wound up feeling like he was another DC for me to look after!

Leonie, sounds like you are having a really bad week.

I had an episode of severe tremor in my leg, coupled with a rather odd neuro episode when I was watching ds2's play last Easter and I was mortified because I was convinced the man squished up next to me would think I was doing it on purpose. I often start to feel odd when watching productions/performances in the school hall, but then we're packed in like sardines, the lights are bright and it's always ridiculously hot.

Had dd's first nativity yesterday, but this time the hall was only half full and I was able to sit on the end of an aisle near the door, so not too hot or cramped in - and the play was only 30 minutes. It's the first time in almost 8 years I haven't had a 'funny turn' at one of my dc's performances.

My dh was really bad with passive anger at me for having poor health until very recently. BUT he has done a complete 180 in his attitude towards since my seizure - I think it really frightened him. He was being such an arse before that I seriously thought our 20 years of marriage (25 years together in all) was over. Since then though he has been far more proactive in getting things sorted himself instead of expecting me to do it all and having had a day off while I rested, been totally overwhelmed by how much I have to do and how little time I have to do it - on an average day, let alone one where I have masses of medical or SEN related paperwork, meetings or phonecalls to deal with on top. I think he's finally had his eyes opened a little to what my life is actually like.

I got a letter this morning and had to call to confirm my MRI attendance. Called and thought I'd just check it was the open scanner and they said no. At which point, I got all upset and in a panic explained that I'm claustrophobic and had recurrent nightmares and flashbacks for weeks after the last one, so was pretty sure I wouldn't last 30 minutes in a scanner again, which made the appointment pointless. Fortunately, I was speaking to an angel in a nurse's uniform who spoke to someone for me, then put me through to yet another angel who was able to book me an open scanner appointment instead - prompting rather embarrassing tears of gratitude.

EEG on Monday next week, then ds1's Christingle Service in the evening, ds2's mini Christmas Play/Assembly on Wednesday then no more bloody school until 3rd January! Of course that's after I've baked and decorated close to 100 cupcakes for their school party days next Tuesday.