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

[moosemama]

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. )

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.

I also ache all over today and seem to have wrenched my shoulder - although I can't imagine how.

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.

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. 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.

[moosemama]

I am having a bad morning, please don't feel anyone has to read or comment, but I need to get this down somewhere, as it all a bit convoluted for the diary I am keeping log in.

Been pretty much holding it together with dh's two epic work days, plus early morning and evenings - so long days on my own with the dcs. Managed to get through them ok, but knew I was gradually running out of steam. Mother's day was a marathon of shopping and parental visits, so no time to rest then either. Back to the daily 3 times a day school run yesterday and Mum is away so, I'm on my own, with no back-up.

I was really exhausted by bed-time last night. In fact I should have gone to bed earlier, but was stoopid and stayed up to spend some time with dh, who to be honest was no company anyway.

The last half an hour before bed I started to feel odd. Got the stomach pain and feeling as if I might be sick, whilst at the same time feeling as if I was going to have a bad stomach. Then got the horrible feeling you get in your stomach when you go over a bridge too fast, which continued sort of building in my stomach - then the indescribable feeling I get that sort of starts at my feet and works it's way up. Told dh I was feeling rough and went to bed.

Bad night. Can't remember it clearly, but I know it was really restless and I don't feel like I slept at all. Woke this morning completely exhausted and with my eyelid not playing ball - which is interesting, as so far that has only happened on days/nights where I have had an episode. Felt awful, so lay there feeling sorry for myself, then it started again, same stuff as last night, but progressing to the incessant yawning, eyes streaming and painful tingling down left side, but it was short lived - not even as long as it usually is. Got up, went to the toilet and got back into bed to drink my coffee - then it happened again. Each time it happened the feelings kind of built and I was feeling really 'dready'. Wasn't sure if this was logical fear that something might happen when dh left for work and I was on my own with the dcs - or worse, crawling walking them to school - or if it was something more fundamental - to be honest it felt beyond my control or thought processes and more 'automatic', if that makes any sense.

Dh and I had words, because although he said he'd take the dcs to school, he was p'd off with me, plainly wasn't up for it and I felt pretty abandoned, as I was in no fit state and felt scared and unsupported.

Evenutally I just started to get ready, pulled on some jeans and a sweatshirt, gave face and teeth a quick going over and told him to go.

Managed to get the kids to school, but it wasn't easy. Beyond knackeredm feel like my legs are made of lead, head is woozy and keep having the feeling that I am sort of outside my body .

Just went to make myself some porridge, wondering if any of it might be to do with low blood sugar and found myself stood at the worktop stirring the porridge but it was as if I was watching someone else's hands doing it, as if I was disconnected from my own hands and watching from 'outside'. Snapped out of it, thought 'well that was odd', then a couple of minutes later felt the same thing again while I was putting coffee in my cup.

Haven't a clue what it all means, but wanted to type it up while I can remember it.

[moosemama]

Thanks Leonie.

Rising feeling is a good description. There's two separate things going on, first the rising stomach feeling, complete with 'going over a bridge' like flip and also the horrible indescribable sensory-ish feeling that seems to start and my feet and work upwards in waves through my whole body.

Looking at my notes so far, I definitely get the rising and fear but I don't exactly feel dizzy - more the world keeps feeling like it's slipping sideways and taking my consciousness with it.

Oh it's so frustrating. I can't even seem to put it into words properly. I have no hope of explaining it to the neuro - if I ever get to see one.

I am just curled up on sofa with dd - surrounded by mess and chaos. Can't contemplate doing anything else today.

[moosemama]

Aw, it sounds like you should be tucked up in bed at home, you poor thing.

The wind is positively Siberian isn't it. Froze my backside off taking dd to nursery earlier. Thank god I only live across the road from the school.

No more odd episodes, just feel knackered and kind of hung over now. Dh has rung and we've chatted and cleared the air a little. I have his permission to do nothing all day and he will try to get home early to cook tea, so am going to take advantage of it while I can.

[moosemama]

He does resent it Leonie, doesn't say so, but it's there in his body language and general grumpiness. Makes me feel like shit tbh, but I still consider myself very lucky that he's there to do it.

Of course you are allowed to use the word seizures, your consultant told you you are having complex partials. I on the other hand have to stick with 'episodes' for the forseeable future.

Dh tried calling my consultant's secretary this morning - answerphone as usual. Says he'll try again this afternoon if he gets chance. I just can't face making any more phonecalls and being given the runaround all over again, feeling far too fragile at the moment.

[moosemama]

Dh just called to say he's spoken to the secretary and she's explained what's happened.

Apparently I was scheduled for a September follow-up appointment, but according to her, when I had my apparent first seizure back in November, my original neuro was notified just prior to taking her career break and brought my appointment forward to the first available appointment - which was March 19th.

I'm not sure I believe that, because when I spoke to the secretary a couple of weeks back she said I hadn't been allocated an appointment yet because they'd only just received my test results, but that it was likely to be mid to end of March.

Turns out my own GP didn't even do the referral letter, but delegated it to the newest GP at the practice - who is frankly crap and I always refuse to see. Boss neuro he wanted me to see has also been on extended leave, which left the pct with no neuro's other than the acting locum - so they are in a mess, backed up with appointments.

Secretary said that if I can't make the mid March appointment there simply are no other appointments until the end of April and she daren't cancel that appointment for even a second or it will be snapped up by the appointments system.

What idiot let one neuro take extended leave and the other take a career break at the same bloody time. Un-bloody-believable!

So, current situation is that boss neuro guy is back, but snowed under and I have to see the locum or no-one.

Dh called the GP to ask him to follow it up and try and get me in with boss guy, but can't get through there either.

I have seriously had enough of this now - at this rate, it could be 5 months after my first 'seizure' before I actually get to see a bloody neurologist - it's f'ing farcical.

[MerryCouthyMows]

I'm done and been frazzled. Will get my biopsy results in 2-3 weeks. Tbh joints causing me more pain because of the position I assume I was in for the procedure. The nurses tell me it's really painful - but even with no painkillers, it just feels 'uncomfortable' compared to the pain I have from my joints every day.

The nurses said that I should tel my GP this when I see him about my joints again on Friday - because apparently it shows the level of pain I live with every day?!

They did a very detailed heart scan that took forever before I went in - and I have a leaky heart valve like DD, and need to see a cardiac consultant about it to make sure it doesn't cause me problems in future.

The general anaesthetic wasn't a problem - I felt and still feel fine from that. I didn't even have ONE seizure. The nurses think that local anaesthetics set off my seizures when the drug in a general anaesthetic doesn't. They have advised me to avoid local anaesthetics as much as possible and ask for a general where I can so as not to bring on seizures.

Because I haven't had any seizures, I have been allowed to go home on the proviso that I REST. I don't do rest easily! But, I am in bed, and will have a sleep in a bit.

[MerryCouthyMows]

Leonie - yes, of course you can call them seizures - they ARE seizures! Just because the piece of paper isn't in your hand, doesn't mean that what you have been told isn't true!

It does sound like you briefly had some Neuropathy as a side effect of the tablets, but I'm glad it's passing now. You may get a day of that each time your dose is increased. I find that I get the same SE's each time my Gabapentin dose is raised (not the neuropathy but the extra tiredness and extra insatiable hunger).

Moose - that is meant to be an emergency appointment?! I think you should complain to your local PALS, or do choose & book to a better different hospital. Some areas treat Neurology (especially epilepsy / seizure / fit specialist neurology) as the 'Cinderella' illness, and provide the barest minimum, and often not even that.

Going on previous experience of seeing a UROLOGIST with a 'special interest' in Neirology before (who didn't know WTF he was talking about BTW) as a 'locum' Neuro - I would check exactly WHAT he does.

You don't want a proctologist trying to look for problems with your brain...

I would kick up a stink tbh. But that's me. And I'm gobby!

[MerryCouthyMows]

Will be back to the thread later once I've had a sleep. If this thread gets full up, can you link to the 'new' thread. Thank you!

[moosemama]

So glad you're ok Couthy, have been thinking of you all day today. Relieved for you that you didn't have any seizures. Wondering if perhaps the deep sleep you get from a general relieves the initial stress build up before the op, whereas a local just numbs the pain (well for some people it does ) but leaves you to cope with the emotional/stress side of it all.

Good to hear they're on top of the heart valve thing and it did'nt cause them any problems today. Fingers - and everything else - crossed for your biopsy results.

Sleep well x

Good idea about checking out the Locum's specialty if I can - then if I find out he's as good as useless I can use that to leverage a complaint.

Dh told me when I came home that he called the GP again this afternoon and they said they can't/won't do anything other than re-issue the referral letter - BUT - if I wanted to speed things up I could consider paying! Wt actual f! So they are making the system crap so that people give up fighting the NHS and pay privately for the same consultants to do the job they should be doing for free on the NHS. Out-bloody-rageous!

I can only do 19th if dh has the day off work. To be honest it's not that, so much as seeing a crappy locum that's bothering me though.

Will try and think of a new thread title and get one started soon. x

[MerryCouthyMows]

They told me that if I stayed in as an inpatient like I was meant to, the only way to get anything more substantial than a steamed 'jacket potato' (on it's own FFS) was to get someone to bring in some hot food for me.

After I hadn't eaten for hours on end.

Apparently most patients do this now, either order a takeaway or get family to bring food in for them, because they only provide a dinner (reheated microwave crap) every other night, and only a jacket potato on the other nights. Tuesday is a jacket potato night.

It's coming to something when the only way to get a dinner as an INPATIENT in hospital is to order a takeaway!!

So you saying you have been advised to go private doesn't surprise me.

[MerryCouthyMows]

Oh, how poo for you, Leonie!

I could tell you how many AED's I tried before we stopped on Gabapentin but that might be scary especially as me & GP are now considering adding yet another as an adjunct, so I'll bite my tongue. It's probably upthread though...

[moosemama]

Hope you've managed to get in at your GPs by now Leonie - and more importantly that they've been able to help.

Well, I rested all day yesterday, went to bed at 11.30 and didn't wake till 6.00 am. No episodes and feeling much more with it both physically and cognitively today. There is definitely a clear and marked difference between how well I am on the days when I haven't had any nocturnal episodes.

Ds2 is home today though. Kids were messing around just before we left for school this morning the other two fell on him and and he twisted his leg. He made a huge fuss and I told him not to be so melodramatic. By the time we got to school he was sobbing and in pain with his hip, knee and ankle on that side. Didn't want to stand with his friends, which is unheard of. Spoke to his teacher, explained and asked her to give him some ibuprofen (he's registered for it with the school and I have supplied a bottle) but she persuaded me to take him home. Of course he perked right up as soon as we got in the front door. He's had some ibuprofen and been lying on the sofa watching tv - enjoying having the remote to himself without ds1 being home.

I am cheesed off though, because I am having a good day and was supposed to be going out to lunch with my Mum and Sister. I'm so tempted to go anyway and take him along, but a) don't want to reward him for being off school, as he has a tendency towards 'feeling ill' on school days, iykwim and b) I'm a wuss and am a bit worried we could get into trouble if someone reports us.