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

996 replies

moosemama · 25/11/2012 22:37

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. Sad)

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. Shock

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

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. Blush

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. Hmm 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. Sad

OP posts:
moosemama · 20/12/2012 14:28

Leonie, I'm sure I saw something on an American Epilepys association website about seizures that sound just like that. I'm pretty sure they even had a video.

I'll see if I can find it.

OP posts:
ArthurPewty · 20/12/2012 14:52

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moosemama · 20/12/2012 15:10

Just been searching. Can't find it - sorry. I'll keep looking though.

Don't worry about what a few nasty people have to say, there will always be people like that on any online forum - unfortunately.

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ArthurPewty · 20/12/2012 16:12

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TheLightPassenger · 20/12/2012 18:13

re:wanting to e-mail etc referrals - choose and book is sometimes done via computer, isn't it, that might speed things up.

Leonie - if you don't use the alarm on your phone, would you still have these episodes on waking? just wondering if being awoken abruptly is triggering you, maybe some sort of natural lighting increase lamp might be a viable alternative, or even the radio coming on rather than an alarm?

ArthurPewty · 20/12/2012 19:06

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ArthurPewty · 20/12/2012 19:06

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ArthurPewty · 20/12/2012 22:02

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CouthyMowEatingBraiiiiinz · 21/12/2012 12:54

I wish I could help, Leonie.

Can't do Sheffield, I'm in the SE, it's too far away, hence pushing for a referral to Prof G in London.

Today GP said he suspects DS2 DOES have scoliosis (Another EDS symptom...), am seeing the other GP on the 28th, as he 'knows more about spines', and will hopefully get a referral about DS2's scoliosis.

But it's not EDS... [Eyeroll emoticon]

ArthurPewty · 21/12/2012 13:03

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ArthurPewty · 21/12/2012 16:00

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ArthurPewty · 21/12/2012 16:02

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CouthyMowEatingBraiiiiinz · 22/12/2012 08:51

I hear a huge 'TWANG' - like a huge rubber band in my head. It's usually just as I'm about to fall asleep, but it is a warning that I'm going to have a Nocturnal seizure.

It's weird for me to be able to describe these things and not have people think I'm completely utterly butterly!

ArthurPewty · 22/12/2012 12:17

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ArthurPewty · 22/12/2012 19:55

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MerryCouthyMows · 22/12/2012 20:53

It doesn't sound to me like you are imagining it, I get exactly the same thing - its a myo seizure in your eyelid!

ArthurPewty · 22/12/2012 20:57

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MerryCouthyMows · 22/12/2012 23:21

Um, no!

Tonight I have to finish wrapping, tidy my baking cupboard because I can't find anything in there, wash up, do the bins, throw some tinsel at the kitchen and write my neighbour's cards. (Only the nice neighbours, not the butch next door)

Tomorrow I need to scrub my kitchen, clean my oven, put away the rest of the clean clothes, sort out the DS's room, scrub the upstairs bathroom, get my ex to chuck loads of stuff up in the loft, and mop and Hoover everywhere.

I'm doing my baking on Monday.

And on that note, I must stop procrastinating on MN and actually get on with stuff!!

ArthurPewty · 23/12/2012 07:54

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mariammama · 23/12/2012 10:10

Couthy, ds2's scoliosis is the perfect excuse to get him seen at Great Ormond street or here Random article.

ArthurPewty · 26/12/2012 20:59

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MerryCouthyMows · 26/12/2012 23:38

What's up, Leonie?

ArthurPewty · 27/12/2012 08:24

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MerryCouthyMows · 27/12/2012 10:21

It's horrible, the waiting. You must allow yourself time to rest, even over Christmas. I just hope you get answers soon, they shouldn't be leaving you this long.

ArthurPewty · 27/12/2012 10:27

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