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

(997 Posts)
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

moosemama Fri 25-Jan-13 16:43:28

Thanks for that link. Have just had a read and I do think the hormonal element may be relevant for me, so will make sure I bring it up - if I ever get a neuro appointment.

Currently feeling awful, because dd managed to headbutt me full force in the face when I was helping her change out of her uniform. Could well get a lovely black eye out of it and now have a corking headache to go with my period pain. hmm

TheLightPassenger Fri 25-Jan-13 16:57:52

sorry, I assumed she was a child psych, I don't know why, of course the systems are v different to navigate, sadly the child mh system seems even worse than the adult one.

agree rehome ed, but I know that until your ds can cope with not being at school that it's not a goer.

moosemama Fri 25-Jan-13 17:20:47

It's crazy isn't it. He can't cope with being there but equally, can't cope with not being there. Makes it almost impossible to help him.

Almost laughed actually when the EP suggested she teach us about relaxation and mindfulness, as not only is mum a clinical psyc, she is also a qualified transpersonal therapist and Reiki master. She's been teaching ds (and my other dcs) about mindfulness, peacefulness etc since before he could talk and it's something we tend to incorporate naturally into our lives, well we encourage the dcs to - I'm not very good at it myself. blush I doubt the EP could teach us anything we don't already know to be honest.

ArthurPewty Fri 25-Jan-13 17:37:45

thank you TLP - i hope diagnosis is a formality / "grandfathered in" too.

I am of course a nervous wreck.

ArthurPewty Fri 25-Jan-13 17:42:19

moose: its like teaching granny to suck eggs, isnt it? massively feel for you.

moosemama Fri 25-Jan-13 17:47:04

Yep, but y'know, you have to play the game, smile and accept their 'support' or you get accused of not complying and putting barriers in the way etc.

ArthurPewty Fri 25-Jan-13 18:31:39

oh yes, indeed :/

ArthurPewty Sat 26-Jan-13 11:16:02
ArthurPewty Sat 26-Jan-13 18:53:10

www.ncbi.nlm.nih.gov/pmc/articles/PMC531654/

"Sympathetic responses predominate during most seizures, causing tachycardia, tachypnea, increased blood pressure, pupillary dilatation, diaphoresis, and facial flushing."

Its very interesting that i get the flushing and evidently I get the pupil dilation, but i dont think my heart /breathing speeds up? Maybe they do. Definitely dont sweat though. Its too brief to start most of that, the episodes are so brief, 10 seconds or less (usually, sometimes not)...

I'd love Couthy's take on the eye thing.

moosemama Sat 26-Jan-13 19:36:33

Hmm, that is interesting.

When ME seemed the most likely dx for me we identified that I suffer from the symptoms of POTS (which is autonomic dysfuction) whenever I am going through an episode and I have Complex Regional Pain Syndrome, which worryingly seems to be spreading at the moment and is is a malfunction of the sympathetic nervous system. Now wondering if it's all connected somehow.

Dh and I were just talking last night about how I have been having random facial flushing around the times when I'm getting a lot of neuro stuff going on - but I'm aware that flushing can often be taken as a sign of stress/anxiety.

Immediately before the seizure in the hotel my whole system seemed 'off'. I couldn't work out what I was feeling and headed for the bathroom because I thought I was either going to have a bad stomach or be sick - or both. In the end neither happened. Iirc, my heart was pounding beforehand as well and again when I was stuck on the floor between the two seizures. My temp shot up straight after the seizures as well, to the extent that somehow in the midst of it all I managed to remove my pjs - fortunately I still had my undies on! blush

Dh wants to create some sort of diagram on which we can list and connect all the different things I have going on, so that we can show docs and hopefully someone will start to join the dots and see connections, because it certainly seems to us like there's some sort of link between all the health problems I have going on. Not sure how likely that is, as we know the NHS doesn't work holistically, but instead has each consultant looking at only their own narrow field of expertise and never looking beyond it. It would be amazing if we could get at least some of them to see/think past that though.

moosemama Sat 26-Jan-13 19:36:52

Wonder where Couthy is. I hope she's ok.

ArthurPewty Sat 26-Jan-13 19:38:47

After my first t/c, i can clearly remember waking up being carried halfway down the steps, to tell the paramedics i was going to vomit.

as we know the NHS doesn't work holistically

exactly. cue massive sigh, and yes, each doctor knows his bit about whatever particular bit you're there to see him about, an there seems to be little if any "joined up thinking" ...

ArthurPewty Sat 26-Jan-13 22:20:15

saw her on another thread so I know she's alive! prob bored of listening to me whine...

moosemama Mon 28-Jan-13 10:10:49

Good luck today Leonie. I'll be thinking of you. x

ArthurPewty Mon 28-Jan-13 10:11:41

That did not go well. it was a registrar. He said it was anxiety because or my kids, cos he has a family member who has a child w autism and 'face it, my life isn't exactly normal'. He said I'm just an extremely anxious person and I need to quit thinking of myself as having something wrong with me. he also said all my old test results were 'normal' too.

Then he went and discussed it w the consultant, who ordered sleep deprived eeg and MRI, and I'll see him in 6-8 weeks' time. He said something about reeferral to a neuropsychiaytrist, which is when they think its psychogenic.

I don't know what to say. I am really, really gutted. I don't think its anxiety, I don't think its my kids' fault either and I don't like the inplications.

Yes I was nervous. Yes I was sweaty and anxiety riddled. I don't think that's a reason to prejudge me though.

I bet the tests come back clean. I could cry.

moosemama Mon 28-Jan-13 10:38:13

Oh, I posted too late.

Bugger Leonie. I'm so sorry. I don't know what to say.

At least he ordered the tests, rather than just discharging you. You never know, something might show up, especially on the sleep deprived EEG.

Fwiw, I don't think they look at psychogenic seizures as being deliberate or anyone's fault, just an overload on the brain that results in a reaction/discharge - although the discharge is not electrical - iyswim. The article I read about them said they are taken very seriously these days.

Neuropsychs don't just look for pyschogenic illness either, they assess for possible neuro-degenerative illness and other neurological reasons for symptoms as well.

I'm not expecting different from my neuro either. The minute they find out you have a child with SNs they just assume stress/anxiety and if the first-line tests don't show anything obvious then that's that. I feel like not following it up if an appointment doesn't show up to be honest.

ArthurPewty Mon 28-Jan-13 11:46:13

Thats exactly what he did - as soon as i told him my kids were autistic (he asked what i "do") he decided right there and then that it was the stress at home and i'm clearly an anxious person (i was anxious, my blood pressure was 170/105, to be fair, they didnt do it right, i wasnt sitting for 15 minutes first, i was a nervous wreck, etc) and that was it, foboff.

He went and talked to the actual consultant who said that next time i can see him ?? and he wants tests done. I think the tests will show nothing and it'll be decided that its psychogenic - and then what impact will that have on my kids' diagnoses? what will be the wider impact?

i'm terrified to go any further tbh. Very terrified. I'm scared of the ramifications to my kids, to my husband, to me, if they decide this is all in my mind.

He actually said for me to go home and stop thinking i have something wrong with me because its not good for my kids.

ArthurPewty Mon 28-Jan-13 12:03:46

interestingly he was going to order the tests before he spoke to the consultant, but he said he is 99% sure nothing will come of it.

i probably will not follow up if nothing shows up - because i dont need "mental health" on my records any more than it already is. And i dont need them then questioning my kids' diagnoses, or thinking i'm making things up, or anything else. OMG. terrifying, truly.

ArthurPewty Mon 28-Jan-13 13:34:42

>And when he was signing the referral form for the tests, he said 'this'll make you happy.' And then he said it again when he said that next time I wouldn't be seeing him, I'd see the actual consultant. He said it would 'make me happy' cos I'd get to see two neurologists.

what the actual fuck? what was he trying to imply?? munchausens?

NoHaudinMaWheest Mon 28-Jan-13 14:30:47

Leonie I haven't posted on this thread because I don't have seizures but I have followed it because I do have unexplained neurological symptoms.

I have been exactly where you are being told that it is a functional disorder and blaming it on my Ds's condition. I found that the registrar was more willing to leap to this conclusion than the consultant so it may be better next time round. But even from what I have experienced and it has been a lot over many years, the registrar you saw today sounds like an arrogant, unsympathetic know-it-all.

ArthurPewty Mon 28-Jan-13 14:38:24

he did seem... more humble after he spoke to the consultant. and his plans changed, the consultant clearly wanted to see me, and the plans changed after the reg went and spoke to him about it.

I don't know what any of that means, whether its good or bad, but I've never ever had my kids used against me in such a way.

and I still cannot find, in any literature, a '10 second panic attack' - panic attacks last 5+ minutes, says one resource, so anything like this (esp with only a few of the sx, like no sweating or no trembling and no urge to run, etc) lasting only seconds should be defined as a simple partial seizure with psychic content.

I didn't get a word in edgewise today though. not even just a bit, there was no chance of getting my point across, he wanted me out the door.

ArthurPewty Mon 28-Jan-13 14:39:03

and btw thank you all. don't know how I'd do this without a place to vent.

NoHaudinMaWheest Mon 28-Jan-13 14:50:19

I know its hard but if he didn't even give you a chance to speak, he had obviously made up his mind already and so his opinion doesn't count for much and should not upset you.

For what its worth my experience of how professionals rate parental and childrens health issues is based more on their prior assumptions than anything factual. I was wary of anyone knowing about my intertwined neurological, ME, psychological issues in case it impacted on Ds's treatment and diagnosis. When it became necessary to tell his psychiatrist though she was quite clear than his AS and OCD had nothing to do with me or my parenting.

Must admit that it doesn't stop me being paranoid about what they are saying about me behind my back.

ArthurPewty Mon 28-Jan-13 16:17:30

he def had his mind made up. I got out my papers when I walked in and he said 'so tell me about all this, and I said 'well, fifteen years ago they diagnosed me with epilepsy -' and he cut me off, interjecting 'well I'm not gonna do that.'

it was downhill from there.

I have done my level best not to let my issues affect the kids, and to keep neuro / health separate from 'mental' health because of this very reason.

he had already decided I was one he could send home. I didn't even whip out the research I'd done, I was too slackjawed from being told it was all in my mind... wish I had, wonder what he would've said?

ArthurPewty Mon 28-Jan-13 16:42:42

another thing i thought was very odd, he told me to "wait for the tests, and try not to take any more tablets in the meantime, just relax, and stop thinking in terms of there being something "wrong" with you because there isn't, and it isnt good for your children."

wtf? umm, really, wtf?

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