Here some suggested organisations that offer expert advice on SN.

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

(997 Posts)
moosemama Sun 25-Nov-12 22:37:59

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

moosemama Sat 16-Feb-13 20:26:16

It ain't pretty I'm afraid - prognosis is er, well, depressing to say the least. sad

I'm not going to get hung up on it though. Will make a few notes and put it to the back of my mind until I see the neuro. At least with it being genetic, I can get a definitive yes or no, providing I they agree to the test.

ArthurPewty Sat 16-Feb-13 20:28:19

no, i'm seeing that :/

I'll take the TLE and the slow loss of most of my memory, over that :/

moosemama Sat 16-Feb-13 21:26:38

I feel a bit odd now. I know how easy it is to google and come up with the scariest possible scenario, but there are just too many coincidences with this.

This article in particular could be describing my life's bloody medical history.

I have been dx with viral encephalitis twice and had plenty of other similar episodes where I wasn't seen by a doctor. When I had my first MRI they asked me when had I recently had encephalitis, because there was clear evidence on the scan. As far as I knew I hadn't had it, but then I recalled a migraine on our annual holiday that wiped out half of the holiday (8 days). It was a bad migraine, even for me, followed by about a week of not being able to talk properly and basically just drifting in and out of sleep. I couldn't even lift my head off the pillow and had to be helped to the toilet. That was a few weeks before my MRI scan.

My first episode of 'viral' encephalitis was when I was 3. It was misdx as meningitis until they did an LP which came back clear. Mum says I was basically comatose then as well and in hospital for a week.

Another episode after I had ds1, we were staying with my parents and I was literally off my head with the pain from the worst migraine I've ever had. Dh had to stop me banging my head off the wall in desperation. I was crawling around, completely out of it, wailing and sobbing. blush Emergency doc was called, obviously knackered (small hours of the morning) bizarrely, dx vertigo and prescribed a load of pills I couldn't take because I was bf ds. Mum and dx questioned the dx, but he was young, obviously newly qualified and didn't speak very good English, so they gave up and took turns to sits with me and nurse me whilst looking after ds1 instead. I was in bed non-compos-mentis for a week again after that one. sad

That paper also mentions seizures occurring within days of a tia or stroke. My seizures happened 10 days after the first odd neuro event in the garden centre with my Mum and the dcs and iirc 4/5 days after another one at home.

ArthurPewty Sun 17-Feb-13 07:07:57

goodness me. I'd definitely sit on the new neuro until you get answers, yes.

ArthurPewty Sun 17-Feb-13 10:47:12

hope you got some rest last night, moose.

moosemama Sun 17-Feb-13 12:59:02

Unfortunately not, it was dd last night. She had us up three times, twice with her cold and once with nightmares. hmm

Have just got up, but the dcs woke us before 8.00 am. I did fall back to sleep for a while, but ended up having nightmares myself. hmm

We were going to try and take the dcs out to burn off some energy today but I'm nowhere near up to it. sad Dh is going to take them to the local park instead.

NoHaudinMaWheest Sun 17-Feb-13 13:23:47

Oh Moose. Hope you are able to rest while the Dcs are at the park.

moosemama Sun 17-Feb-13 15:17:26

grin The blooming dog barked the whole time they were out! Not the poorly dog - the other, apparently naughty, one! hmm

Actually I think he could hear them in the park and was feeling slighted. grin

They are back now, ds1 was literally covered in mud from top to bottom - he fell off his scooter no fewer than 15 times!

They are now in pjs skateboarding on the Wii. Dd looks so cute scooting her little leg along the floor whilst balancing on the board. grin

ArthurPewty Sun 17-Feb-13 17:56:58

I got dd2's tablet sorted out today, now both kids can play flow free or whatever at the same time. got dd2's insured, for when she inevitably drops and breaks it lol.

feel wretched now though. monthly visitor is a week early, grumble.

TheLightPassenger Sun 17-Feb-13 18:24:30

((moose)). Cld you go back to GP and discuss your concerns. Hopefully gp can reassure you or at least try and expedite neuro appt for you

TheLightPassenger Sun 17-Feb-13 18:24:47

((moose)). Cld you go back to GP and discuss your concerns. Hopefully gp can reassure you or at least try and expedite neuro appt for you

moosemama Sun 17-Feb-13 19:12:21

Thanks TLP. I don't really feel like there's much point. Even if it is CADASIL, I'm not an emergency, as in there view I'm no immediate danger and there's no treatment anyway.

I will just wait for the referral to come through and try not to wind myself up about it.

NoHaudinMaWheest Sun 17-Feb-13 20:38:56

((hugs)) Moose sorry you got no sleep.

Whether you are right or wrong about the CADASIL (and from what you have posted it isn't as if you are getting worried about nothing,) it might be worth asking your good GP if you can get an appointment with the neuro sooner rather than later. I know I couldn't put a suspicion like that out of my mind easily.

ArthurPewty Sun 17-Feb-13 22:10:24

gosh, me neither. it takes so little to make me worry these days...

ArthurPewty Mon 18-Feb-13 09:41:48

saw this link tweeted by someone with an interest in special needs, but it could apply to anyone (including myself).

How to speak so your doctor will listen

I found the statistic at the top very interesting - doctors interrupt 18 seconds into a consultation. Basically, yup.

moosemama Mon 18-Feb-13 10:03:04

That's a really useful article Leonie - have you considered starting a MNSN thread to point people towards it? I'm sure some people, particularly those just starting out would find it really useful.

ArthurPewty Mon 18-Feb-13 10:03:52

tbh, i'm up to my neck in phone calls this morning, gas bill, MRI people, etc

you may feel free! x

ArthurPewty Mon 18-Feb-13 14:41:42

City hospital's MRI is 2.5 T.

they can't tell me which protocol though, i can ask the person scanning me when i get there.

ArthurPewty Tue 19-Feb-13 14:36:40

last night was the second time that i can think of, where i snapped awake around midnight with my right arm shaking.

What is that?

ArthurPewty Wed 20-Feb-13 08:56:20

i hope everyone's half term is going okayish.

We're gearing up to go to Bockleton tomorrow.

I dont feel well today. I really, really dont feel well. I've got all the packing to do sad

ArthurPewty Fri 22-Feb-13 16:34:38

What a time to get laid out by a migraine! Husband had to step up. He did well, and no complaining. He could see how pale I was... Not cool. Stupid head.

MerryCouthyMows Fri 22-Feb-13 18:38:22

Haven't updated on this thread, but I had a phone call to tell me that as well as CIN3 changes, they have looked again at my sample and have found a few cancerous cells.

So, I officially have early stage cervical cancer.

Just to add to the other heap of shite that is my life right now!

Hopefully, as it is only a few cancerous cells they have seen, it has been caught early enough that cervical loop diathermy can 'fix' it, but I will find out more next week.

Tbh, I'm shitting bricks about it. I don't have time to have cancer!

moosemama Fri 22-Feb-13 18:44:50

Oh Couthy, I'm so sorry to hear that - on top of everything else it's a wonder you are still standing.

Will keep everything crossed the Lletz is all that's needed.

Sending lots of love, light and ((hugs)) x

NoHaudinMaWheest Fri 22-Feb-13 21:53:30

Couthy so sorry to hear that. Hope they manage to fix it quickly.

MerryCouthyMows Fri 22-Feb-13 22:11:40

In keeping busy to take my mind off it. That's not hard to do in my house, especially during half term...

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