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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

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CouthyMowEatingBraiiiiinz · 10/12/2012 23:48

I bloody wish, Leonie. DS3 has only just nodded off, I've got to wash the bottles and do the bins before I go to bed.

They claim Gabapentin doesn't do that, make you gain weight. Bollocks if you ask me.

Was on them from 2005-2009, put on 2 stone in two months after starting them, list it without changing anything else within 2 months of coming off them.

Kept the weight off without doing any extra exercise, changing my diet, or anything really.

I was back to that weight within 9 months of DS3's birth.

Went back on them in Feb this year, was 2 stone heavier by April. Hmm

Seems conclusive to me - I actually weighed less at 9 months pregnant with DS3 whilst NOT taking them than I do now, 22 months later, after just 10 months on them. Hmm again.

But they don't cause you to gain weight...

ArthurPewty · 11/12/2012 10:56

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CouthyMowEatingBraiiiiinz · 11/12/2012 13:19

I would push for Keppra, Topamax has soooo many side effects. Nasty stuff IMO.

Keppra is what they are looking at for me as an adjunct.

ArthurPewty · 11/12/2012 16:08

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desertgirl · 11/12/2012 16:49

oh, interesting re all the side effects, I have been really lucky with lamotrigine, doesn't seem to have any adverse effects (or I just haven't noticed them) - was originally on valproates, felt slightly nauseous a lot of the time, put on weight, hair was falling out, revolting things.

the lamotrigine is quite a low dose which presumably helps, but it does show you don't have to stress about side effects unless you actually get them, not everyone does.

anyway good luck everyone with getting the medication sorted

moosemama · 11/12/2012 16:53

Leonie, it wasn't just the weightloss with me though - and even that was caused by taste impairment and loss of appetite, which wasn't pleasant either.

I was severely cognitively impaired on Topomax, just couldn't function, was unable to speak/recall words, couldn't write or concentrate on anything - basically just zombied - even on the lowest dose.

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ArthurPewty · 11/12/2012 16:58

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ArthurPewty · 11/12/2012 17:02

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moosemama · 11/12/2012 17:02

I thought I wouldn't mind either, but it was honestly awful - and I don't drink fizzy pop. Grin

That said, I will admit to being quietly pleased about the weightloss, even though it wasn't fun while it was happening. Wink

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ArthurPewty · 11/12/2012 18:52

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CouthyMowEatingBraiiiiinz · 11/12/2012 18:54

It was the MH issues Topamax caused for me that made it bad, and permanently losing your peripheral vision isn't so great either!

moosemama · 11/12/2012 19:03

Shock Purple nipples! Confused

Leonie?

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ArthurPewty · 11/12/2012 19:39

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moosemama · 11/12/2012 19:54

Ah, now I understand.

We have Reynauds in the family, my mum, sister and niece all suffer from it. My niece has it so badly that her hands and feet go black when it's really cold. I've never asked about her nipples though!

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ArthurPewty · 11/12/2012 20:17

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moosemama · 11/12/2012 20:28

Then you may be right, Topomax might be the answer for you. It certainly worked on mine.

I went from several migraines a week, some lasting several days at a time and with no pattern or clear triggers to only having had a handful since my Topiramate treatment back in 2006.

I would definitely go through it again if I knew it was only going to be short term and would get rid of my migraines.

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ArthurPewty · 11/12/2012 21:05

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moosemama · 11/12/2012 21:21

I didn't realise you had migraines as well, that's why I was thinking you might want to avoid the Topomax. It all makes sense now - sorry, my brain is on a go slow today. Blush

I am visiting the indie school tomorrow morning - so will report back ... and then we have the mega meeting to end all meetings at the school in the afternoon.

I realised on Monday that I don't have a thing to wear to either, having gained so much weight. So I ordered some new trousers and shoes from Next, knowing they would be here today on standard next day delivery. Only they're not ... the courier has screwed up and only delivered two out of the three parcels and guess which one the trousers were in? Been given the run around and kept waiting on the phone to them twice and they still haven't managed to sort it out, so now I am left stressed - and trouserless.

I honestly don't have anything suitable and I really need wanted to be smart to help me feel in control.

Looks like I will have to wear my black jeans, but I will spend the day feeling scruffy and that's not how I wanted to go into things tomorrow.

Mum is bringing me a beautiful pair of East wide leg trousers when she comes to have dd in the morning. They were mine before I lost the weight and I'd never had the chance to wear them, they are gorgeous, but sods law would have it that I reckon they're still going to be too big and they don't have belt loops.

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ArthurPewty · 11/12/2012 21:22

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ArthurPewty · 11/12/2012 21:24

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moosemama · 11/12/2012 21:31

The thing is though - if you're posh you can get away with being a bit scruffy, but if you're not you can't fake it, so have to make do with being smart - iyswim.

I wonder if that's similar to my dx of complex migraine then?

Did anyone suggest to you that your brain lesion could be down to migraine damage? That's what they always seem to use as their fallback position with me.

Forgot to say. I had a call from a lovely nurse at Heartlands about an hour and a half ago to book my MRI. It's the first week in January and she thinks it will be the open scanner - so no claustrophobia worries! Thank *!"/ for that! Grin

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ArthurPewty · 11/12/2012 21:35

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ArthurPewty · 11/12/2012 21:41

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moosemama · 11/12/2012 21:45
Grin

Just googled migraine a bit and came across two types of migraine that would explain my neuro symptoms. Hemiplegic and Basilar. Why on earth hasn't the neuro mentioned them? They both fit the types of attack I was having at the start of last year.

She does keep telling me to get straight in touch if I develop weakness down one side of my body - so it seems that she is waiting for me to have a full on hemi attack like the worst one I had last year.

I wonder if she was just waiting for that to confirm her suspicions and dx? This latest development of seizures is going to throw the cat among the pigeons if she was.

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mariammama · 11/12/2012 21:49

Ludicrously technical article and easier UK one.

Interesting eye stuff which looks plausible but doesn't seem widely accepted.