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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 · 11/03/2013 11:47

Definitely worth watching it first yourself if its the Ch4 one Couthy.

So sorry to hear you are still hitting a brick wall trying to access support. I've heard of people with no disabilities being given short term respite care for inpatient care, so surely someone must be able to help. It's just knowing who to ask - long shot, but have you ever tried Citizen's Advice at all?

I just called the hospital to try and rearrange my neuro appointment, as they've given me one at the main hospital (where we took ds1 last week) at precisely the time I have to drop dd at nursery. I was told that if I change it they will put me back onto the waiting list and I won't be seen before the end of April. Angry Explained about my GP wanting me to see boss-guy instead of locum and they advised keeping this appointment on system, as otherwise I could end up seeing no-one! Shock

I ended up putting the phone down and sobbing. I have to call the snotty secretary again, but can't face it. Surely it shouldn't be this bloody hard to get seen after a first seizure. Appointments operator said I'm down as a follow up - rather than a first appointment, so they've just tagged it onto my previous case-load, even though I wasn't being seen for seizures and that's why I can't get it prioritised for an earlier appointment.

I am going to have to ask dh to call the secretary as I am liable to either sob or shout and I really don't feel up to doing either. Sad

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ArthurPewty · 11/03/2013 11:49

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MerryCouthyMows · 11/03/2013 12:02

It might be an idea, Leonie. And it would be a good idea to keep an eye on it.

MerryCouthyMows · 11/03/2013 12:03

They did TWO ECG's in my pre-OP assessment, which did show some issues, that's the thing. It's just currently my fanjo treatment is a higher priority as it HAS to be done NOW!

ArthurPewty · 11/03/2013 13:03

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MerryCouthyMows · 11/03/2013 13:07

It wasn't just skipped beats - a regular but unusual beat pattern is what was said, not explained in any great detail as after 5 hours trying to sort out the fluff up of putting me in as a day case, I didn't ask the questions I should have!

ArthurPewty · 11/03/2013 13:17

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MerryCouthyMows · 11/03/2013 13:24

I hope not...

MerryCouthyMows · 11/03/2013 13:24

And we're going to need a new thread soon - just seen the post count!!

MerryCouthyMows · 11/03/2013 13:26

I'm now off to photocopy 1001 reports from medical people so that I can send off DS3's DLA application form...

Oh, and a council tax bill so I can drop my own bus pass form in the post.

ArthurPewty · 11/03/2013 13:59

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MerryCouthyMows · 11/03/2013 14:30

(They could be in one of about 6 places, one of which is a bag in the loft that I stuffed what I thought was all unimportant paperwork before the SS visit. I'm not able to get into the loft today, joints are bad. Rrrraaaarrrrgghhhhh!!)

MerryCouthyMows · 11/03/2013 14:31

Leonie, it's taken me over 9 years to get around to doing my bus pass, so a few days is nothing to worry about...Grin

MerryCouthyMows · 11/03/2013 14:32

Um, one of my posts vanished again. Fucksake why does MN keep randomly eating my posts?!

ArthurPewty · 11/03/2013 17:23

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moosemama · 11/03/2013 17:40

Leonie, I often get what I call 'stingy skin' with viruses, in fact sometimes it's the first sign I get to let me know something nasty is brewing. There's never anything to see, but it's sooo painful. I tend to get it down my back and on the backs of my arms and legs.

Just had a quick google and everywhere does seem to say that you should report any sign of a rash to your prescriber as soon as it appears though, so maybe you should call your GP or your consultant's secretary to be on the safe-side?

If you need to know what you are looking for, try a Google images search for Lamictal rash and you get loads of hits.

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ArthurPewty · 11/03/2013 17:42

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MerryCouthyMows · 11/03/2013 18:52

Does the patient information leaflet say anything about NEUROPATHY as a side effect? Because that's what it sounds a bit like to me (I get it as a side effect of my Gabapentin, but only in the tops of my feet).

If so, I would speak to your GP when you can, but I wouldn't over worry.

(I can't remember fully, Lamotrigine was the first med I took, 9 years ago!)

ArthurPewty · 11/03/2013 19:29

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MerryCouthyMows · 11/03/2013 20:32

It DOES sound like neuropathy to me, and my untrained ear.

Is the burning worse when your clothes or things touch your skin? Because that IS indicative of neuropathy.

The glaucoma thing that happened to me WASN'T listed as a side effect on the Topamax PIL, but it's still what caused it...the PIL now carries a warning that it is a very rare side effect!

MerryCouthyMows · 12/03/2013 07:45

I'm at the hospital. Very VERY hungry. And thirsty. And I'm not allowed to eat or drink. Which is pissing me off because I'm STARVICATING, and one side effect of my Gabapentin dose going up so rapidly is...a dry mouth!!

Am on the ward now, though.

Hope you all have a good day, I might not be with it enough to type until later, will update as soon as I am compos mentis!!

ArthurPewty · 12/03/2013 08:16

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MerryCouthyMows · 12/03/2013 08:30

They're getting very concerned about the heart thing - more so than my epilepsy!

Am feeling nervous that they might cancel the procedure I need to have based on something that could be nothing...(or something that could be 'something'...)

moosemama · 12/03/2013 09:49

Good luck today Couthy.

Probably too late, but hope they manage to get it together and get you checked, sorted and the procedure done soon.

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ArthurPewty · 12/03/2013 09:57

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