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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:
EllenJaneisstillnotmyname · 27/11/2012 21:00

Oh, love... Sad

moosemama · 27/11/2012 21:10

Sorry to be such a misery. I need to give myself a good shake.

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EllenJaneisstillnotmyname · 27/11/2012 21:35

No, you don't. It's been one shit thing after another for you, lately. Trouble is, you have to carry on, somehow. But you are allowed a bit of a cry, and where better to come than here? You are among friends, here, moose, and we do understand, we've all had some of the crap ourselves. You do seem to be getting rather more than your fair share, though. ((((hugs))))

moosemama · 27/11/2012 21:35

Thank you. Smile Thanks

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ArthurPewty · 27/11/2012 21:54

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madwomanintheattic · 27/11/2012 21:57

Moose, did you call headway?

magso · 27/11/2012 22:00

Oh Moose. (hugs)
I'm OK doing better recently but still 'only' a CFS dx.

madwomanintheattic · 27/11/2012 22:01

And did you check out the brain injury thread in health?

You have lots of support here, but sometimes you need a bit of specific soothing, even years after the event. You know I didn't have any counselling for six years after dd2 was born, which was 8 years after dh's head injury...

I tend to look at it a bit like PTSD - for those of us dealing with the aftermath, it can catch up years later, in totally unexpected ways, especially if we are at a low ebb about something else (for me it was my mum being dx with breast cancer).

It just catches you unawares, and is so mixed up with every aspect of your life it's hard to disentangle everything.

Good luck for tomorrow x

madwomanintheattic · 27/11/2012 22:02
ArthurPewty · 28/11/2012 13:53

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moosemama · 28/11/2012 14:22

Hi

Nope, thing are a whole helluva lot worse.

Dh woke me at 11.30 to tell me the school had called and wanted me to go in to discuss last week's complaints when dd went to nursery. Obviously they thought I would be on my own and no time to get a PP rep to come with me. Angry Fortunately dh was here, so we both went, even though I really wasn't up to it.

Just before we left for the meeting, the post arrived and the shit has well and truly hit the fan with ds's secondary placement. (Read the last couple of posts on this thread.

Thank God we have this advocate coming round tonight and it was beyond lucky that dh decided to buck up and book today off, because I'd be a complete mess if he hadn't.

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ArthurPewty · 28/11/2012 16:29

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ArthurPewty · 28/11/2012 16:40

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moosemama · 28/11/2012 17:03

Oh Leonie, so sorry about your cat. Sad

We're gathering advice from all over the shop at the moment deciding our next move.

I would really love to name the indie(although still not sure he'd cope with the travelling) and in theory the academies letter gives us the evidence we need to do it, but ds really can't cope with the thought of going anywhere other than the local school with all his friends and if we do name the indie it's going to take A LOT of very careful handling.

Watched the videos on their homepage today and sobbed and sobbed.

Why can't there be a school like that local to us - it's just not bloody fair. There is not one school in the whole county that is suited to HFASD or AS. Not one scrap of suitable provision - it's beyond a disgrace! Angry

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ArthurPewty · 28/11/2012 17:36

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ArthurPewty · 01/12/2012 19:39

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ArthurPewty · 01/12/2012 20:00

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moosemama · 01/12/2012 20:13

As you know, I know very little about all this, but from what I've read this week that definitely sounds seizurey to me Leonie. Sad

You are going to have to demand your GP to refers you, it's frankly outrageous that they haven't done it already with your history.

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ArthurPewty · 01/12/2012 20:15

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ArthurPewty · 01/12/2012 20:17

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CouthyMowEatingBraiiiiinz · 01/12/2012 22:17

Um. Right, Leonie.

You need to see a Neuro. don't wish to be the bearer of bad news but this sounds very like a partial seizure. You can be 'aware but not' if you know what I mean.

The blinking where you know you are doing it, but can't stop it is a big sign. Sad

I REALLY think you need to see a Neurologist.

Odd question alert - when you felt sleepy, like you couldn't keep your eyes open, did you get double or blurry vision? If so, then your first port of call on Monday morning should be the GP to INSIST on a referral to the Neurologist of your choice through choose and book.

I don't know where in the country you are, but if you are in the SE anywhere, I really rate the Neuro's at Queen's Hospital in Romford.

CouthyMowEatingBraiiiiinz · 01/12/2012 22:24

Sorry I've not been here till tonight, have had a busy week!

CouthyMowEatingBraiiiiinz · 01/12/2012 22:26

Did you hear a whooshing sound, or clicks? I often find that those sounds, plus an 'odd' feeling in the pit of my stomach (almost like a dread feeling, like I'm dreading what is to come) precede a partial seizure.

CouthyMowEatingBraiiiiinz · 01/12/2012 22:27

Apparently, according to other people that have seen me have partial seizures, I often bite my lips too. Never have any knowledge of that though.

CouthyMowEatingBraiiiiinz · 01/12/2012 22:28

Some people also smell a particular smell before they have a partial seizure too. A frequent one is the smell of burning, but it can be anything.