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

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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

SallyBear Sun 25-Nov-12 22:44:57

Moose how absolutely terrifying. Next time it happens you MUST get an ambulance out. I had a weird Aura migraine last week, thought I was having a stroke, but was worrying about the DC. Sometimes I think I take the mummy but to the extreme. Ambulance if it happens again. PROMISE!

moosemama Sun 25-Nov-12 22:49:59

I know Sally, but I just wanted to crawl into bed and sleep. I just felt like it was over, I was in my undies, it was throwing it down with rain outside and I didn't want to end up being shipped to hospital in Telford when I needed to get back to my poorly dcs asap.

Not to mention an ambulance had literally only just left the hotel with another resident in the back! (My friends thought it had been called for me and that was before the fit/thing. blush)

werewolvesdidit Sun 25-Nov-12 22:52:59

The weird thing about epilepsy is that everyone's epilepsy is different and personal to them. I am really sorry about what has happened to you but I just want to tell you that it's not the end of the world. They will probably wait until/if you have another one to diagnose you with epilepsy so it is still early days. It does sound like they were seizures to me but lots of people can have one off seizures that are not epileptic.

You still do need to get all your tests done but about 60% of people with epilepsy will have normal results. If you do end up on meds, the most important thing to do is give them a couple of months to work and if you are not tolerating them, make sure you change them. What is one person's wonder drug is another person's nightmare. My son is on keppra (after a shitty experience with epilim) and is doing really well. Over 2 years seizure free and no side effects with the keppra - no one would ever know he has epilepsy.

Join the Epilepsy Action forum too. Good luck.

Turningupsidedown Sun 25-Nov-12 23:07:31

Hello, that sounds very scary. I can't say it was for anything like the same reason, but I fitted as a child, so did both my sisters, two of us seemed to grow out of it, the other still does it, particularly in response to pain. It has happened once to me as an adult though when I was sat on the toilet and managed to hit my elbow on the edge of the sink right on the nerve. I came to in exactly the way you described, hearing a strange whining noise then realising I was making it, and the banging which was also my head against the wall, and found myself over by the door. So in answer to your question, yes I think you can be aware of coming out of a fit. We would all be very sleepy afterwards as well and just want to go to bed, but you really must get an ambulance. There may be all sorts of reasons for this to happen and the nearer they can check you out to the actual event the more likely they are to be able to find an answer to what it is. I do remember it was a really odd and scary sensation so I am not surprised you feel really upset about it. Hope you can get some answers soon.

moosemama Sun 25-Nov-12 23:07:54

Thank you werewolves.

I am not really scared of having epilepsy, I've known for a long time that there was something neurological going on and until recently was led to believe it was probably MS, which I was more scared of really, due to the possibility of it being degenerative.

I am however, terrified of having yet another MRI. I still have flashbacks to the last one and swore I'd never have another no-matter what.

The other thing that scares me is having a seizure when I'm on my own with the dcs. The other neurological events I've had were less obvious and I've always been able to explain away even the major events to the dcs before, but I think it would really scare them - particularly ds1, who has AS, if they were to witness something like what happened last night.

I have just googled a little and do see what you said about everyone having a different experience of epilepsy. I just read some forum posts where some people had some awareness during a seizure and yet others had none at all. My MIL was dxd with epilepsy a couple of years ago. She was having long freezing/absence type episodes then suddenly started having GMs and she doesn't remember a thing about hers, which is what made me question what happened to me, because I definitely became aware of a sort of throaty growling noise that I realised was me and was also aware of the last few head bashes on the toilet.

The toilet fgs, of all the places it could have happened, it had to be in a room full of cold hard porcelain objects, just perfect for smashing my head against. blush Not to mention the embarrassment factor of it happening when I'm sitting on the loo in my underwear. blush I'm actually quite glad no-one else was around to see it. blush

moosemama Sun 25-Nov-12 23:11:11

Thank you Turningupsidedown.

The AMU doctor made me promise I will go straight to the nearest hospital if it happens again and made a huge deal about saying she was only discharging me because dh and I seemed like very sensible people who would go straight back at the first hint of anything happening "Wouldn't you Mr & Mrs Moose". blush

moosemama Sun 25-Nov-12 23:12:41

Am off to bed now.

Thank you all for taking the time to offer your support and advice to me so late of a Sunday evening. thanks

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 01:38:40

What you describe is exactly how I come round from a seizure, even down to the growly noise that I realise is me. It is possible to have some awareness when you are coming round.

If it is epilepsy, remember that 70% of people with epilepsy have their seizures fully controlled by medication, another 20% will gain partial control, and just 10% have intractable seizures. I lucked out and fell into the last 10%.

The worst ones ARE when you are on the loo.

If you take the time to explain it to your DC's, they will soon learn to cope. Mine have. My older 3 know how to put me into the recovery position and press speed dial 2 to get to my emergency contact, and this is despite their own SN's.

There are things you can do to help if you have younger DC's too - a wrist strap that attaches the buggy to you (long enough not to tip the buggy if you fall, but not so long the buggy goes in the road), changing babies nappies on the floor at all times, never on a bed, sofa or changing table. Playpen up in the room to stuff baby or toddler in if you feel in any way funny.

NEVER ignore it when you feel that odd 'neurological issue' feeling, and make sure you call someone to sit with you. That is your early warning system. Listen to your body, and take heed of your seizure warning.

I think it is telling that it happened when you were on holiday - I often find my seizures are at their worst not when I'm actually stressed or busy, but when I stop to rest, or after I am calm.

What did you find so hard about the MRI? I have to say, I was so tired at the time I had my last one that I fell asleep in there!

They play birdsong in my one. They don't scan your whole body for seizures, just your head.

A tip for the EEG - get lots of cheap shampoo to wash the glue or gum out. Hopefully they use the gum at your hospital, it washes out easier than the glue.

I'll come back if I think of anything else.

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 01:40:42

What other neurological events? I'm wondering if they might be connected?

madwomanintheattic Mon 26-Nov-12 04:55:26

Oh moose.

I really really don't want to nag. I know how worried and scared you must be, but it's only a week or so after the TIA-type episode. sad

You know you can't ignore this, right? You know you can't keep hiding? You have to go to the hospital, any hospital, with these new symptoms? Whilst they are happening/ at the time, so they can run tests and get some more clues?

and you know they need to run more tests and check for any progression, right? Can you ask for GA for MRI? They will do GA for dd2, but I don't know whether you would need to be awake or yours...

Lordy, lady, I'm worried about you. <very gentle hug>

TheLightPassenger Mon 26-Nov-12 08:13:33

I'm so sorry you had such a rotten time, what a terrifying experience for you sad. Like Madwoman, i hate to pester, but you really, really must call the neuro today, rather than wait for the paperwork to catch up with you. There are other options for the MRI, as madwoman says, GA or sedation. You may need to go to a further away hospital to have it done though.

moosemama Mon 26-Nov-12 10:06:24

Hi Couthy thank you for replying and for all your advice. I have been working on making sure the dcs know contact details and address etc. Ds1 knows our phone number and address etc, but struggles with the phone (which is odd for a child as technological as he is). Ds2 seems completely unable to retain the information and dd (3) knows our name and address, but not how to use the phone. I think we need to have a sort of training programme for them asap. I am embarrassed to admit I can't work out the speed dial thing on our phone. We had it all set up on the old one, but it seems to be more complicated than just dialling on this phone for some bizarre reason. Might actually get a new phone that has a simpler system, as we need it to be as easy as possible for them I think.

In answer to your question re other neuro episodes.

They initially happened across the winter of 2010/11. I kept having the feeling as if either I shot down a long tunnel or the world suddenly shot away from me (sorry very hard to explain) then if I tried to speak either my words wouldn't come or were very slurred and basically I just sort of slumped. I can't remember a lot of the details, but the one dh videod showed me just as I started coming out of it (he fumbled his phone) slumped and slurring and doing an odd repeated swallowing thing - I did say at one point I felt like it was a big effot to swallow - oh and both hands had curled up inwards, but not really badly.

Since they started I had some regular, some continuous low-grade neuro symptoms such as buzzing and tingling first only on one side, but now after a year or so on both, vision problems (blank patch in right vision) tremor and word finding and memory problems.

Took video to GP, who sent me to neuro, who thought MS and sent me for a raft of tests this time last year, although I hadn't had any significant events since May by that time and in fact felt better than I had in years.

MRI showed several new lesions from the scan done in 2005 and neuro thought this seemed to confirm MS, although I was told they still weren't 'typical' MS type lesions. Lumbar puncture and evoked potentials were negative, so after being told I was down as 'probably MS' and would stay like that until there was more 'clinical' evidence so that I met the criteria better or it became obvious that I had something else that they were able to clinically diagnose. Then suddenly, at my 6 month review in September said they'd decided that it wasn't MS and frankly they just didn't know what it was, so as I wasn't having any 'significant' episodes and hadn't for a while they put me onto 12 month review instead of 6 and that was that.

I was told I should go back if I had any 'significant' events such as weakness down one side or loss of bowel or bladder control, but the fine motor and or visual issues, parasthesia, word and memory problems I would just have to live with. hmm

I haven't been well for most of this year, with lots of my usual neuro (apparently insignificant) symptoms regularly, plus the exhaustion that comes with it and the development of intentional tremor - which the neuro didn't think was relevant hmm and some other problems with fine motor skills, which dh felt showed up on the neuro exam yesterday, but the doc didn't mention. Didn't have anything significant though until Thursday after last when I had one of my old episodes when shopping with Mum and the dcs, then I had another lesser one when out with my Mum in the week and now this. I didn't contact the neuro though, because they already know I have those symptoms and they said anything new and significant.

I am claustrophobic, so that's why I can't stand the MRI. I coped ok with the first one, but the last one was awful - and longer, as it was head and neck. They don't let you listen to music or anything, the assistant was stroppy and rude and they left me there for ages after the machine stopped before coming and wheeling me out. I had a really strong urge to panic, kick and thrash about and I had nightmares about it for weeks. Very odd really, as I although the first one was horrible, I coped ok with it.

I had 'head gluey stuff' for my evoked potentials, so not looking forward to that with EEG. I have really long hair (not quite waist length, but below shoulder blades) and it's really thick as well. Urgh.

The other thing was the babinski reflex. My left foot definitely tested positive yesterday (positive indicates central nervous system damage) but the AMU doc didn't say anything and said my examination results were ok. The only thing is I have Complex Regional Pain Syndrome in that lower limb, so it could actually be peripheral NS damage rather than CNS damage, which might be why she felt it wasn't significant. confused I think it does need checking out more though.

moosemama Mon 26-Nov-12 10:14:52

Madwoman and TLP. Thank you. I know I can't hide anymore and have promised dh that if I have any more episodes we will drop everything and go there and then (although if I have to wait 6 and a half hours to see a doctor like I did yesterday I will be out of it by the time I'm seen. hmm)

I will grin and bear the MRI, but am seriously dreading it. I nearly cried when they told me I had to have another one, but it sounds like I need to get used to it. To be honest I'm such a control freak that I think I hate the idea of GA or sedation even more. blush

I am feeling okish today, but really sore. I keep finding new bruises I didn't realise I had yesterday and my blooming shoulder is really painful.

Fortunately/unfortunately ds1 started throwing up at 1am, but had stopped by 5am, so I have all 3 dcs off sick, which whilst not ideal has meant no school runs and all of us curled up under duvets. Dd has lost her voice and she and I are on the sofa sharing a duvet and the boys are watching dvds in their own beds. I can tell ds1 is really poorly because he's insisting on Bagpuss and Trumpton. grin

We are going to snuggle up together and watch the second Alvin and Chipmunks and the original Nativity film together this afternoon.

Honestly, we are the house of sickness at the moment!

NoHaudinMaWheest Mon 26-Nov-12 10:51:53

Moose just wanted to say how sorry I am that things are going wrong again.

My only advice is re DS1 and the phone. My Ds although also a technophile has found using the phone difficult and is only really getting to grips with it now at 16. He does find it easier to use a mobile for some reason so might be worth exploring with your ds?

Hope the sickness but clears up soon.

moosemama Mon 26-Nov-12 11:28:58

Thanks NoHaudin.

Unfortunately we have almost no mobile signal in our house, so a mobile isn't really an option. I can receive texts etc if I leave my phone in one or two specific locations and can send texts by waving the phone around in certain spots, but an actual phonecall is impossible.

I am starting to wonder about idiopathic/reactive hypoglycemia. The first episode Thursday before last was when I didn't get chance to eat all morning, then went out and had a coffee and chocolate brownie dessert and icecream with the dcs, then went to the garden centre and collapsed. The Ikea one was when again I didn't get chance to eat, then grabbed some biscuits on the way out and at the weekend I didn't manage breakfast, had a cone of chips at 10.00, then nothing except non-diet tonic water - which of course is major carbs. My blood sugar levels were normal yesterday, despite only having two coffees and until we got home last night.

Reading the info reactive hypoglycemia seems to fit. I used to have an eating disorder as a teenager/young adult (I know it sounds like I do now, but I don't, honest) and would regularly go very strange after eating a big meal. Every sunday lunch I used to start to feel strange at the dinner table and have to go and lie down in the next room to recover. If I lay down and slept for a while I would be ok, but if I tried to carry on I would 'faint'. I have had similar things happen all my adult life, but not often enough to connect the dots and I've generally been a lot better about managing my diet.

Then there's the fact that I was episode free for my entire diet/exercise regime last year. I was having porridge for breakfast, mixed salad with nuts and seeds for lunch and often for tea as well and other really well balanced healthy meals. So my blood sugar levels would have been kept steady by slow release energy foods.

I think I am definitely going to have to raise this. Surely it would be simple to test, just get me not to eat for most of the day and take blood, then give me a couple of sugary drinks or a white carb loaded meal and take more bloods.

In the meantime I am going to try and get back on top of my eating habits, start having porridge every morning again and see if I'm any better. Can't hurt, even if it doesn't turn out to be the answer.

ThoughtBen10WasBadPokemonOMG Mon 26-Nov-12 11:36:38

Oh gosh Moose. I don't post much on here atm but I'm so sorry to hear about all this that is going on with you. The CRPS is enough for anyone to deal with let alone neuro issues and SN to be getting on with.

Apologise if this is out of turn but would one of those alarms that you have round your neck that calls a call centre or programmed number be suitable for you and your children if you were to need help?

cheekkatb Mon 26-Nov-12 11:37:02

I've had both types, usually I get a warning but on occasion out like a light without warning. In fact I've done exactly the same as you in the bathroom. Black and blue next morning. I keeled over last time without warning so eventually went to the docs to go back on meds. Been fine since.

ArthurPewty Mon 26-Nov-12 11:44:28

Message withdrawn at poster's request.

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 11:49:46

It sounds a LOT like my seizures, tbh. I'm going to investigate the hypoglycaemia thing you were on about. I also had an eating disorder as a young teenager (9-14), and even the GP is thinking it might be something to do with my blood sugars - I have a form to go and get fasting blood sugars taken on Wednesday! It's easiest to fast overnight and get the bloods taken in the morning I think.

Hope you are feeling OK right now.

TheLightPassenger Mon 26-Nov-12 11:54:36

Moose - when they diagnose diabetes, they do a glucose tolerance test - which is as you describe, filling someone with a v sugary drink, then seeing how their body responds to it - so it should be straightforward to check that side of things out.

moosemama Mon 26-Nov-12 12:01:18

Hi Ben10 lol at the Pokemon aspect to your new name - I feel your pain!

I don't think I need an alarm or anything. It's only happened once and at the moment there is no reason to believe it will happen again. If it does I guess we will have to think a bit more seriously about getting things organised.

I feel a bit of a fraud actually. I spent the whole day in hospital yesterday begging dh to to and tell them I was going home because I was just taking up a bed space and there must be people who were far more sick than me that needed it. To be fair, I felt much better yesterday than I did even before the seizure. I feel worse today to be honest. I think I'm just physically and emotionally exhausted and a bit battered though really.

Cheekkatb, thank you for sharing your experiences. I just don't know what to think really. The reactive hypoglycemia really seems to fit the pattern, but I'm aware I could be grasping at straws given my other neuro symptoms and MRI results.

Leonie I have been guilty of having the same thoughts in the past, but am kind of regretting it a little now. I was sick of being looked at like it was all in my head, even though they'd told me I have multiple lesions that had increased from one scan to another. Until the distinct episodes started I'd always assumed I had ME. I was dxd with PVFS in my early twenties and was bedridden for a few months, but never followed it up and just managed the symptoms myself.

At my last appointment the neuro actually told me she doesn't believe in ME but that either that or another of the current "fashionable disorders such as Fibro" (her words not mine angry) might be a useful 'label' for me to use to explain my symptoms to other people until a better answer comes along. I was beyond livid both at her dismissing people's very real struggle with those two very real illnesses and by her suggesting I should just make something up until to tell people until such time as I actually do keel over. angry angry angry

moosemama Mon 26-Nov-12 12:04:39

Couthy - another name for it is idiopathic hypoglycemia if you want to do some reading up.

TLP I wondered if a GTT would work. Hopefully they'll think it's at least worth a try.

Unfortunately I think the MRI is going to come first, which is a pita, as I'd really like to see a neuro to talk it all through properly and perhaps try the GTT first. AMU doc said the MRI was necessary because it's been over 12 months since the last one was done.

moosemama Mon 26-Nov-12 12:10:34

Couthy, can I ask? Do you tend to still feel really bruised and achy this long after a seizure. I am sooo sore today, worse than yesterday and I thought I'd be starting to feel better today.

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 13:19:03

Takes me about 3 days to feel 'normal' after a big seizure tbh. And longer for the bruising to fade...

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