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.

And if you have got ANY odd neurological symptoms, one of the first lifestyle changes you should make is to ensure that you get enough sleep.

Disclaimer here though - I'm NOT a Neurologist, so I can only tell you what I have learnt in the 9 years since my own epilepsy diagnosis, and what I have learnt from other people that I know with epilepsy.

That's ok, Leonie - I know exactly what you mean. Pain from RA, extra tiredness from fibromyalgia, hyperactive/ADHD toddler, probably with Autism too, two older DC's on the spectrum and having to do nighttime nebs and inhalers for DS2, sleep is hard won in this house too.

That's why I said I should take my own advice!!

It took us 4 bloody years to get a diagnosis of epilepsy for DS1. That was 4 years of GPs, consultants etc. I knew they were seizures but they were short and only nocturnal. Finally he had a full blown tonic clonic in the middle of a snowy road on Christmas Eve where I had to flag down strangers to call 999 and THEN they started to take us seriously :( :( :( It still makes me cry when I think about it. Anyway, on a more positive note. He is on keppra with no side effects (that we know of) and has been seizure free for over 2 years. He is a happy wee boy.

That's the weird thing about epilepsy. It seems to come and go or returns with new seizures. They are putting a lot of pressure on us to take DS off his meds and we are really pissed off about it. He is doing really well on keppra and I have no desire to put any of us through the shit that we went through for years watching him have hundreds of seizures. They just cxare about the NICE guidelines and have no understanding of the stress we wnt through as a family. :(

Sounds just like I was for a couple of days after mine Leonie.

Emergency appointment tomorrow morning for you I think?

Then this time, set your alarm instead of your resolve.

Is there anyone who could make the call for you at 8.00 Leonie? It doesn't have to be you that makes it, as long as they know your availability for appointments.

Don't think that Leonie. The cosmic hints arethe episodes you've been having and if you are looking at it from a universal perspective, you could see it as a life lesson that you need to fight for yourself as hard as you would for your dcs - no matter how hard the challenge or what the barriers.

If you need to, remind yourself that fighting for your own health is actually fighting for your dcs indirectly, they need you to be fit and healthy if you are going to be able to keep up your fight for them, as much as you need it for yourself.

Right - make a plan. Set your mobile phone alarm for 7.55 tomorrow morning and start dialling (and if necessary re-dialling) at a minute to 8.00 so you are first to get through (I did this with IPSEA and it worked a treat). It might mean hanging on a few minutes and then running to school, but it will be worth it.

If you really can't make it happen that way, then next time you have an episode like you had the other day, do what I did and present yourself to A&E and tell them you've had a seizure and are currently dxd but unmedicated and not under medical supervision. Sometimes it's the only way to be heard.

I think the A&E option is the only way many people get to be heard for a wide range of reasons these days, but even that relies on you getting a decent doctor on duty when you get there.

We are quite lucky with our GPs, as the triage appointment system works quite well. You ring and they have one GP on triage duty all day. They call you back within the hour, discuss the problem with you and usually invite you in for an appointment again within the hour - so max 2 hours from calling to being seen. Before they set up the service our surgery was like yours, you literally had to book your illness in weeks in advance. My Mum's surgery is the same and she's considering switching to mine as a result.

I wish I could drive - I'd come and give you a lift to A&E myself.

Lordy you shouldn't have to do all that, get a taxi it'll be the best few quid you've ever invested.