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.

Sounds positive Leonie, glad PALS got things moving for you. They were lovely when ds2 was in hospital with the demon consultant from hell presiding over him.

It must be a shock to suddenly be having everything dealt with in one go, but in some ways that's better, a period of intense appointments and medical scrutiny - followed by being able to get on with your life.

If the Chiro isn't much cop, give me a shout, as I know an outstanding osteopath who has helped ds2, dh, me and my mum over the years. He literally put me back together after ds2's birth as, as my mw put it, my pelvis basically collapsed.

They really need to investigate your neck properly as well, as neck injuries can cause no end of neuro-type symptoms. If you have such a clear family history of neck problems, you definitely need an ortho referral. Maybe you could discuss it with the neuro, in a kind of process of elimination way and see if he will write a letter to your GP asking them to refer you (I know consultants aren't allowed/won't refer across departments these days, it's always back via the GP).

I don't have neck problems anywhere near your league, but know from problems in the past just how badly neck stuff can affect your overall wellbeing. We're pretty sure my neck injury caused my complex migraines as there was no clear trigger or pattern even after extensive diary keeping and monitoring.

I dislocated a vertebrae whilst exercising as a teenager and spent a couple of months completely immobilised with my head twisted sideways, as no doctor would touch it in case they caused more damage. After than I had recurrent torticollis that would result in frozen muscles from the base of my skull to my waist all down one side of my body. My neck still clicks in and out now, but I haven't had torticollis since I stopped sitting at a desk, peering at a screen all day.

What does 'brisk reflexes' mean?

Coincidentally the Osteopath is in Knowle as well. I'll pm you.

It sounds like what i suspect in myself too - a Chiari malformation. Only way to dx is a STANDING CAT scan. Try getting one of those out of the NHS though. You have neck problems too, don't you...

As I understand it l'hermittes is a shockwave pain that goes right down your back and shoots down your arms and legs and is precipitated by bending your neck forwards.

It's not just caused by MS, it can be caused by disc compression, arthritis, spondylosis and even - would you believe it - B12 deficiency.

True hermittes, as in MS type, would be like an electric shock running down your neck, spine, arms and legs. From what I've been told by a couple of people who have MS and suffer from this, it's actually a cross between a vibration and an electric shock and if anything, it's pretty painful.

I really think you need an MRI properly targetted to look at the damage to your neck, where the nerves are lying, how the discs are seated etc. I can't see how they are going to untangle it all without doing that.

I wonder if you could/should mention it to the consultant on the phone next week, because he might need to order a slightly different MRI protocol to ensure everything is properly reviewed and you need to make sure they are doing brain and neck, not just brain, as I think the standard is just to do the brain.

You could approach it from the angle that the fuckwit Registrar didn't even listen to all the facts before he jumped to his conclusions and that you feel it's too complicated to assume epilepsy or anything else without all the proper assessments being done, taking into consideration the whole clinical picture.

I get it in exactly the way Leonie describes - if my chin drops to my neck, it goes down through my arms.

I'm also suffering from ?parasthesia? In the tops of my feet at times. Where the tops of my feet have a burning sort of pain if ANYTHING touches them or brushes over them. It's fucking agony if even a sheet touches them, has me in tears of agony. God knows what that's about, but my GP just dismissed me when I tried to tell him about it.

Couthy, the severe pain with a light touch is called 'allodynia' and is a sign of neuropathy. You get it with Complex Regional Pain Syndrome, Neuralgia, Fibromyalgia and with nerve or spinal damage.

I have it as part of my CRPS and it's the pits.

Leonie, I would ask the consultant whether taking the clonazepam is likely to affect the results.

Riiiight. So the foot pain is related to my Fibro. Funny enough, didn't have it when I was dxd with Fibro, but it has come on since. Nobody told me about it.