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.

[moosemama]

I love walking as well, like you it's helps mitigate my sweet tooth (although not at the moment, thanks to these blooming crutches).

I was thinking you just need to get this done as quickly and hassle free as possible, especially with having the dd's looked after, because you know you are going to be hanging around at the hospital for hours on end, without the additional time waiting for trains and walking. Not to mention, you don't want to end up seizing in the middle of a crowded train carriage.

[moosemama]

Sounds like a plan.

I can go weeks with no sugar, then find I crave it really badly, particularly in the evenings after the dcs go to bed. The only think I can think is that I crave it when my energy stores are really low and my body is trying for a quick fix. I do find if I eat a really big bowl of porridge in the morning, go wholegrain or big salad with nuts etc for lunch I tend not to get the cravings though.

Unfortunately, my diet has been truly abysmal since I hurt my foot and I know it's been purely emotional eating, which of course not getting any better with all the school stress.

I scoffed half a trifle this afternoon. I was fine until I dropped dd at nursery, then when I got home and everywhere was quiet, by brain went into stress overdrive about ds1, school and secondary placement etc and I think I ate the trifle purely to distract myself. Sadly, eating a piece of fruit just doesn't have the same effect.

Still I have salad for tea so hopefully that will make up for my mid-afternoon sins.

[Badvocsanta]

A and e leonie.

[mariammama]

Fax a letter through marked FAO duty doctor: urgent. Explain you really need a pre-booked review appointment SOS, as you had a seizure. Call the practice manager the next day if no callback and keep calling the PM till they make you a dr appt. it will happen, if only to get you stop bugging the boss

[moosemama]

Great news, let us know how it goes - and being nervous isn't stupid, I am exactly the same with doctors ... well with anyone really, including SENCOs and LEA officers.

[moosemama]

At least you have a firm appointment now.

Hold on Leonie, you're almost there. Just imagine all of us standing behind you when you sock it to her.

[moosemama]

Can you take someone with you to the appointment?

Dh sometimes comes with me. He's no help in terms of what needs saying, but it helps just to have someone else there that's on my side.

[mariammama]

You can agree to disagree with the GP and still get the referral. If she was right and your funny turns were some sort of weird (but harmless) pseudo-seizure, you'd still need a neurologist to confirm it. Some hospitals seem to EEG/MRI/other fancy tests on anyone and everyone who crosses their threshold .

[mariammama]

Beauty of that route is that if she does think you're losing your mind / anxious you aren't forced into the impossible position of having to prove her wrong to acces a second opinion about the odd episodes.

[mariammama]

It's a 10min slot. She might talk for half of it. Theres just no way you can share all your knowledge about this problem. Nor prove sanity, that takes much longer . If you get a decent herring it'll be easy, and you might well do. Otherwise I would treat it like an important meeting about one of the dc. Define the preferred outcome, select a few key (killer) points to hammer home.

Make very brief notes which just jog your memory and practice like you would for a presentation, or perhaps a SEN tribunal

[mariammama]

Hearing . Though if you freeze, remembering MNSN herrings might just work

[moosemama]

Hi Leonie,

I am doing ok. In fact I think I have had far less general neuro symptoms since the seizures. A bit like there was a kind of building of electrical charge and then it all got dispersed in one big episode - if that makes any sense at all. Still ridiculously tired though and sleeping heavily, which is not like me at all, as I am usually the world's lightest sleeper.

I got an EEG appointment through for next Monday, but had to rearrange for the week after, as it was impossible to get to with three school runs a day, being over at City hospital. So now it's going to be on the 17th, squished between dropping dd off at nursery at 12.15 and racing back to get all three dcs at 3.15.

I still have a couple of bruises. The one on my eye socket has gone, but I discovered a nasty one a couple of days after the seizure - on the inside of my upper arm of all places. It took me a while to work out how the hell it got there, until I realised it was the exact imprint of my fist, so I must have fallen with my hand trapped between my body the opposite arm. That one is now a nice shade of brown and yellow, but was really nasty looking for a while. Oh, and I still have a lovely black one where they screwed up the cannula for blood letting in hospital.

All the problems with ds1 are serving as a huge distraction at the moment. Things seem to keep getting worse on a daily basis, so I haven't had much time to brood. Just had him in floods of tears for two hours saying he hates his autism and wishes he'd never been dxd. I tried so hard to explain that the problems he's having socially at school would still be happening without the dx, he just wouldn't know why and that would make it even harder - but he wasn't having any of it.

On the plus side, I managed to talk to him, in a round about sort of way about the indie school and he wants to visit it, although only as a fall-back position if he doesn't get a place at the local academy. (I told him no-one has a place set in stone at any secondary yet and he shouldn't get his heart set on it.)

[CouthyMowEatingBraiiiiinz]

Sorry I vanished for a few days, had no Internet. I'm glad you have an appointment now, Leonie.

The next day I'm absolutely useless. I drift off to sleep, can't remember what I'm in a shop for, utterly exhausted, it's like a tiredness that comes from the centre of your bones, it's not like 'normal' tiredness.