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.

Unfortunately they can speak in any way they like if it isn't technically abusive and some doctors do seem still to think they are god and can issue directions about all kinds of things. I have had some pretty awful things said to me but I must say that comment is right at the top for awfulness.
Patronising doesn't cover it.
But just because a doctor who isn't listening, has already made his mind up and hasn't done any tests said it doesn't make it any more valid than if it was said by a random nosey neighbour for example.

In my experience Leonie, Registrars are often the worst for this. They don't have the experience or knowledge, but feel like they are some sort of medical God. I think the power goes to their head until such time as they get it seriously wrong for some poor unfortunate sod and they are pulled up short at the consequence of their own arrogance.

The thing is, just being in a consulting room, facing a so called professional is disempowering in itself and you end up not saying all the things you want/need to.

In truth, they can't speak to people that way and if you want to you can contact PALS for their advice on how best to deal with it. Dh did this when ds2 was seriously ill in hospital and the consultant was vile to me/us. We didn't pursue it, as we wanted to focus our energies on ds, but they made it clear that we could and that even if nothing came of it, it would be kept on record.

To be honest, it was probably for the best that you didn't have chance to get the research out - as with his attitude it would just have added fuel to his fire.

I know it's easy to say, but try to put him out of your mind. It sounds like you aren't going to have to see him again. Wait for the test results - you never know what they may bring and then you might get the opportunity to roll them up very tightly and offer to insert them where the sun don't shine for him.

Also, keep in mind that convergence disorders such as Psychogenic Seizures only occur as a result of post traumatic stress disorder NOT as a result of daily/regular/life stress. It isn't something that happens because you have a stressful daily life, it's basically a brain meltdown from trying to contain long-term extreme trauma - and therfore, in order to dx, they'd need to unearth a mighty big a skeleton in the closet to use against us. Don't know about you, but my closet is pretty much an open book - nothing remotely interesting in there - no big trauma, just the usual crap life has a tendency to throw at most people really.

NoHaudin, same here. I worry quite a bit about what they are saying behind my back, but conversely have been told many times that we are good parents, doing everything possible to support our dcs and I know in my heart that that's the truth of the matter.

Cross posted with NoHaudin about the medical God complex!

... and she's spot on about the validity of his opinion being no better than a nosey neighbour or some old busy body you happen to bump into in the street.

Conversely though, if you are on meds that should prevent panic attacks, you could say that would indicate they're not panic attacks and he shouldn't assume they are, until you have had a complete and thorough examination and assessment to rule out other causes.

I have a feeling that's what the consultant told him when he left the room, hence him being slightly more humble after speaking with the consultant?

Dh and I have been thinking about and trying to join the dots re my symptoms.

We don't think I have had any more seizures since that night in November, but, we are suspicious that there's a combination of things going on that are causing the other symptoms.

First of all, I think I may be becoming perimenopausal, based on having lots of hot flushes, red faces, but also conversely really bad chills in the week to ten days prior to my period staring.

Secondly, we are wondering about nutritional deficiency. When I was at my best and fittest in 2011/12 I was taking high strength magnesium, zinc, calcium (osteocare) and vitamin D3, plus a high dose vegetarian omega 3 supplement. I gave them all up because it was costing too much and I needed to ensure we could continue to afford the dcs' supplements.

Thirdly, I am simply not sleeping well at all, I have severely restless legs and still have the neuro symptoms the neuro was looking into intially when they suspected MS and which are now more obviously contained to one side of my body (coincidentally or not, it's the side where I have Complex Regional Pain Syndrome below my knee).

Finally the Complex Regional Pain Syndrome itself could be implicated in many of the symptoms, because it's a malfunction of the sympathetic nervous system, which runs through the limbic system, affecting mood, nerves, sleep etc.

I feel better that I have untangled the picture a little. Still have no clue what it all means, but at least we can see what we're dealing with a little better.

I am always borderline for iron, but take floradix regularly so shouldn't be desperately low. I'm thinking it's more likely to be magnesium.

I had restless legs for the first time ever when I was pregnant with dd 4 years ago, but actually, it was nothing like what this feels like, this is almost painful - but really hard to explain, unfortunately. I looked into it at the time and came up with having a glass of milk, a banana and a dose of floradix an hour before bed, which certainly seemed to help. Iirc it was down to the combination of iron, magnesium and calcium. Other mums on my pn threads tried it as well and they also said it helped. Might give it another try and see if it makes any difference.

Call the consultant's secretary, explain briefly what happened, and ask if it's possible for your review appt to be brought forward. The boss would also have wanted some tests and see you with the results. So (apart from the psychological effects it's had on you) this shouldn't have done any harm.

Certainly his opinion won't have impacted on the diagnosis process much... an obviously arrogant registrar seldom cuts much ice with their superiors. By your next appt that registrar will have moved on and been replaced with a nicer one.

I reckon that means your eeg and mri will be very soon then Leonie, as they will want the results back before they see you and that means they aren't hanging about.

I would say that's a sign the consultant isn't in agreement with the Registrar and wants you properly assessed asap. (Bearing in mind my sz was in November and I didn't get an EEG or MRI until January, despite them telling me I was down as 'urgent' for both.)

Good on you for contacting PALS.

I'm not doing well at all this week. So exhausted, every move is an enormous effort, mood ridiculously low, short of breath and as my Mum put it, I'm so pale I'm transparent. Cue a light-bulb moment, remembering that I was also on high dose Vit B complex when I was at my best and being veggie, with a frankly appalling diet recently, a quick Google later and I think I may have found the culprit for a lot of my more recent neuro-like symptoms. This useless swiss-cheese memory of mine meant I had completely forgotten I've been through this loop before and the solution was simply a decent course of vitamins.

I was seen at big hospitals though Leonie, as all part of the same PCT (if that's what we're calling them these days ). A&E at our local hospital, then transferred to Acute Medical Unit - also at our local hospital, but EEG at City and MRI at Heartlands.

Dh had to fess up to his new boss today that things aren't going so well at home due to my health, as he's been late into work - as in really late several times over the past couple of weeks. Boss was lovely and gave him the name of a great health insurance broker, who can get decent deals/rates for people with pre-existing conditions. Apparently he's used them himself, as he's not from the UK and has a medical history that meant a lot of private healthcare policies wouldn't take him. Dh is now seriously thinking about going that route and just handing the end result/dx over to the GP.

I on the other hand, am clinging onto the hope that the lions' share of all these crap symptom is nutritional - although if I'm being honest, I don't believe that's what was behind the sz and there's no pretending the brain lesions aren't there.

I have started my old vitamin/mineral and omega supplement routine again this evening, so I guess we'll find out soon enough.