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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 Sat 02-Mar-13 19:20:06

Ah - I am a control freak wanted to get through it as fast as possible, so made sure mine was just a nice snug fitting sports tank - with no shoulder adjustment. I already have 3 sports bras from my shredding days, but all three have metal adusters and two have hook and eye fastening, so had to buy yet another.

ArthurPewty Sat 02-Mar-13 19:33:59

so now i'm trying to get my house in order for monday. steeling myself for "go home, you're just a headcase wasting my time" - so anything that isnt that will be a positive thing.

What i really need is confirmation - vindication perhaps. I NEED to know what is happening to me, and i'm not buying the "anxious person" bollocks. Every person i tell my symptoms to, and the "overanxious person" line, says its bollocks - so i dont know what to think. I can live with it, without meds, even - IF I KNOW WHAT IT IS.

As is when it hits me, i kinda know what it is so i relax, and there is considerable benefit there. If i was still terrified of it, if i was still panicking, i'd be a mess. Meds help keep me calm in that respect, so i can almost sit back and enjoy it - except it is unpleasant.

If, like normal fear, it was aversive, i'd be a shut-in, never leaving my house, because of how often it has happened. But it ISNT aversive. I dont know how, but it isnt. I'm not afraid.

Oh, and the "anxiety" and "panic" and fear etc? I've analysed my feelings more, and i now realise exactly what is going through my head - i fear that "something is wrong" - that's all. I dont think i'm dying, i dont think DOOM! and whatever, but i do instantly know something is wrong.

MerryCouthyMows Sun 03-Mar-13 00:51:31

Ugh. That FEAR. I have that, and the world feels 'wobbly', like the floor is made out of quicksand...and that's my seizure warning, before I drop.

I have found that the more frequent the FEAR feeling happens, the closer to a 'big' seizure I am. It's a good indicator. As is the length of the FEAR, and the level of FEAR.

Longer = bad, big seizure soon.

Increased fear = bad, big seizure soon.

More frequent fear feelings = bad, big seizure soon.

What I have been told is that these are your brain 'almost' going into seizure, then stopping at the last minute, but you are getting the 'aura', the FEAR is your 'aura', or seizure warning.

MerryCouthyMows Sun 03-Mar-13 00:55:00

For me, I get the feeling in my tummy that you would get in a lift, when it's going down, you know, that 'flip' feeling, accompanied by a sense that something is about to happen. I often, randomly, also get a sharp pain in my upper left arm at the same time, and feel hot.

Freaky person that I am, with my badly-wired brain, creaky joints and broken hoo-ha!

ArthurPewty Sun 03-Mar-13 07:54:51

I think instead of focussing on the fear, I'll focus on the rising feeling. feels like I'm on a car and gone over a hill too fast, or in a lift that's just suddenly gone down. the rising feeling is fairly diagnostic anyway, and tbh, I can remember that rising feeling my entire life, even into my childhood...

I think the fear is misleading to the medical peeps, they think aha, panic attack.

ArthurPewty Sun 03-Mar-13 08:01:25

I've read that the fear is the beginnings of funny electrical activity in the amygdala. the rising 'flip' as you call it, is the amygdala or the hippocampus. - for me it hasn't spread further, since around 2000.

its not so much a warning that a seizure is coming, though people perceive it that way, its the beginning of seizure activity, a seizure in its own right, if indeed it never goes any further...

ArthurPewty Sun 03-Mar-13 09:20:45

blood spots inside my left cheek this morning. thought i slept a bit hard!

MerryCouthyMows Sun 03-Mar-13 09:22:09

I may have to NC, my so-called partner is looking through my App and reading my posts on here AGAIN.

He HATES that I use MN as a source of friendship, companionship and support.

He read my post from the night before my aborted colposcopy, and the following day was roaring at me (to the point of reducing me to tears, repeatedly) because I had posted calling his a bastard or something in that post on this thread where I was talking about him snoring in the chair.

I'll have to PM you.

I'm just fed up with it all. Every time he starts being nice again, I fall for it hook, line and sinker, really believing him (wanting to?), and then he reduces me to tears.

Thursday, just two days after my aborted colposcopy and multiple seizures, still feeling the effects of all that, he kept picking fights with me, and he said that I was "a moody cow most of the time, and Satan for a week each month".

So I asked him that if he didn't like who I was, then why is he with me again? After me being in tears, and asking him about 6 times, he finally told me that he's with me because he cares about me, and worries about the DC's.

And d'y know what? I'm about at my limits with it.

He keeps turning round and shouting at ME because my Mother is too selfish to help me (like that's MY fucking fault?!), that I miss out on help from Adult Social care because my disabilities are variable - they admit that if I was bad ALL the time, I would qualify for their maximum amount of support.

But because it's variable, and they can only provide constant support or none, as you can't get emergency Carers at short notice when you are having a bad day, I don't get anything at all.

And he keeps shouting at ME for that too.

And then he starts going on about how I'm ungrateful, and I shouldn't complain when he puts things in the wrong places, EVER, because "he's the only one that ever helps you, and if I don't, it's not like anyone else will", said in a really harsh, cruel voice, just to hammer home to me that if I don't accept the way he is, I'll have NO support.

He tells me that I alienate people because I'm so abrupt - yeah, like me not sugar coating things and just calling a spade a spade is so wrong, rather than him being terminally unable to get to the point about things...as I keep telling him, different DOESN'T mean wrong, it just means different.

He expects me to be 100% consistent with the DC's, even on days where I struggle to get to the fucking toilet, yeah, I can do the impossible and do everything that I do on my best days when I'm at my worst and in so much pain I'm constantly trying not to cry, despite fairly heavy duty painkillers.

I'll just stick a broom up my arse while I'm at it, shall I?!

When he upsets me to the point if tears, he doesn't even think to comfort me.

He can't disagree about something without getting 'personal' and nasty (and I DO mean nasty). He blames ME for the fact that Carers allowance is means tested, so he can't claim it for looking after me because his income from work is too high (again, how the fuck is that MY fault?!).

He doesn't say anything about anything that bothers him for 3 weeks a month, then when I'm due on and at my worst, disability wise (the arthritis AND my epilepsy are both made worse by my hormones), he brings up EVERYTHING that bothers him, in one go, when I can least cope with it because I'm in so much pain, and it doesn't matter how many times I explain to him that doing this isn't fair on me, spread it out over the month FGS, he'll say he won't do it next month and then does. Every time.

And I end up in tears, feeling shit that I HAVE to put up with this every month, in order to have the physical help I need when I'm bad, when if I wasn't disabled, I wouldn't put up with it, especially not in my own home, and would tell whoever was making me feel like that to fuck the fuck off.

But I can't do that. He can be the nicest person when I don't need do much help. But the minute I do, if it lasts for more than one day, he gets sullen, uncommunicative, huffy, then starts taking it out on ME that there's nobody to help me.

I was wondering if there are any support groups for Carers? Maybe he needs more support? But he keeps expecting me to think that it's do hard on him, he suffers the most blah blah blah, and I have to try to be sympathetic when actually, I am the one in constant pain, I am the one who is trying to adjust to having the mobility of an 80yo, I am the one having the seizures and coping with the after effects.

I'm at the point where I just want to scream in his face that yes, I DO get that it's hard for him having to care for me with no help, but FFS, I'm the one with the fucking pain and disabilities, it IS A FUCK SITE HARDER FOR ME TO COPE WITH, you insensitive arsehole!!!!

<<Rant over>>

And if he's reading this, then whatever. I don't snoop on your fb, I don't hear your conversations with YOUR friends, I don't open letters that come through your door, I don't stalk you online to see if you moan about me at all - EVERYBODY needs to let off steam occasionally, to their friends, and mine are on MN. STOP reading my posts, and let me have ONE place where I can let off steam.

You keep on about how you 'don't think I can cope', and you're 'worried about the DC's', with the implication (sometimes stated outright) that you will give up work and have full custody - any thoughts to how that makes me feel?

(You wouldn't get custody on the grounds of my disabilities anyway, because it is against the equality act)

Anyway, sorry for my epic rantiness, and how are you two today?

MerryCouthyMows Sun 03-Mar-13 09:36:03

It's interesting, I'd never thought of it being a seizure in it's own right. That might explain why I'm so tired when it happens, even if it doesn't develop into what I call a seizure.

<<Strokes chin, absorbing the information>>

Leonie, do you get an awful headache sometimes in the morning, like half of your head has been clamped in a vice overnight? I can always tell if I've had a seizure in the night by this headache. It lasts all effing day, too, and neither paracetamol nor nurofen shifts it.

I call it my 'seizure headache'. It clouds my brain, too, makes it so that I can't think straight. I'm always really snappy when I have that too, like I am when I'm post ictal.

What pisses me off is that there are still questions on my medical notes about NEAD. And it's bollocks. Like you, Leonie, I too have been told (by Epilepsy Action no less) that every symptom I have is indicative of epilepsy.

The only issue? I don't always jerk or twitch when I have a big seizure. I have 'drop attacks' where I just 'go'. I'm awake, and then (as far as I'm concerned, I'm STILL awake, I don't sense any loss of conciousness), I'm awake but feeling woozy on the floor.

Though partner DID say that one of the seizures I had at the hospital the other day I WAS a bit twitchy.

I just get fed up with it, tbh I wish I HAD been admitted then - they could have done an EEG that WOULD have shown conclusively that I was post seizure, and then there would be no question of it.

I'm umming and ahhing about pushing for a longer term, perambulatory EEG, for a week, so that it can pick up the seizure activity and put the NEAD thing firmly in the background.

Might yet do that, once I have the DC's sorted.

An halfway through DS3's DLA form, on the plus side. It needs to be back to them by the 18th March.

ArthurPewty Sun 03-Mar-13 09:43:00

yes, Couthy, i often wake up with a headache - and sometimes it coincides with the bitten cheeks. Husband who sleeps beside me often reports i'm "trying to take over the bed" but nothing else otherwise.

ArthurPewty Sun 03-Mar-13 09:43:20

and if i wake up with a headache, it wears off by noon, with no pain meds required.

ArthurPewty Sun 03-Mar-13 10:34:34

you've just given me one more idea of things to draw a parallel between - headaches that start in the morning / i wake up with, and bitten cheeks. I need to evaluate my notes for that.

No headache this morning, but i am stiff and in pain every single morning - its hard to tell a morning where it's "worse" as such. Sometimes i'll wake up with a pulled muscle i dont remember pulling, though, like a calf muscle or something.

Am i making too much out of all this? I dont know. the NEAD thing terrifies me - i need to know this is real, its really happening TO me, its not something i'm doing to myself, even unconsciously... my credibility will go out the door if the consultant rubber stamps me NEAD tomorrow, and that terrifies me.

ArthurPewty Sun 03-Mar-13 10:42:30

Well that was enlightening.

Of the 14 mornings i've woken with a bitten lip/cheek, 8 of them had headaches listed for that date too, and 7 of those 8 were migraine and required tablets (!!!).

One morning, i was quite definitely post-ictal, my entry reads like a post-ictal description.

"Feel drugged and drunk today. Weepy and emotional today too. Discover the bitten cheek at about 6pm - its higher up than my teeth meet... 18:45 buzzing head, 3 episodes of it one after the next, and suddenly unexpectedly very, very tired, for about ten minutes after the dizzy."

ArthurPewty Sun 03-Mar-13 11:51:27

Very interesting discussion on MRI scans, the usefulness of contrast, and the thickness of the slices, with respect to diagnosing MS, irrelevant in my case but still very, very interesting.

ArthurPewty Sun 03-Mar-13 11:58:15

My old scan was done with gadolinium contrast agent, IV. I have no idea how strong the machine was but the slices were 5mm thick.

One can assume it wasnt a 1.5T machine, it was probably only 0.5T or 1T.

The reason it was so brief was because they did not do contrast, and they obviously were not using small (3mm) slices.

I am a little annoyed about it - "having a clean MRI scan" does not rule anything in or our, especially if they are taking slices too thick, and dont use the contrast medium that makes things visible.

I am concerned about the value of yesterday's scan, tbh. Taking shortcuts and not ordering contrast cos it costs only leaves people suffering without the correct diagnoses :/

I've half a mind to ask my chirpractor to order me a new MRI at Knowle and pay for it myself. That is an option, and i may well do it if the NHS one turns out to be "clean" or is missing the "spot" which i know was there in 1998.

MerryCouthyMows Sun 03-Mar-13 12:04:15

Will read the link later. I know what you mean about it feeling 'different' having a dx of NEAD to 'true' epilepsy.

I think you will be fine - it's VERY unusual for a registrar to me made to call to apologise, even with PALS input.

I think the consultant has found something.

I'll have my fingers crossed for you!

DS3 has his Portage assessment on Monday.

I have an appointment with the GP on Tuesday about the fact that I had so many seizures in a row, and the hospital are worried about the possibility of it happening again when I'm in recovery. They want me to see if there's any extra meds that might prevent that...

Wednesday I have the HV coming round for DS3.

Thursday I will have to schedule the SS visit.

Friday is DD's birthday.

Another quiet week chez Couthy then...

ArthurPewty Sun 03-Mar-13 12:09:47

god i hope you're right. i really do.

btw re your rant earlier, i did read, but i didnt process much of it. Sorry. i will re-read tomorrow after the appointment's done one way or the other.

i'm steeling myself up to phoning home later (which will occupy several hours of my time), trying to keep busy by watching Stargate and doing laundry, and trying to keep my mind busy.

ArthurPewty Sun 03-Mar-13 12:16:02

Gadolinium not required for epilepsy protocol. IF that's what they did - i forgot to ask blush

ArthurPewty Sun 03-Mar-13 14:23:24

Family phone call done. Mother checked in with, all's good. Stargate uniform almost finished, just waiting for the patches to sew on the coat (for world book day). DD1 has decided she wants to be Daniel Jackson for thursday. lmao

ArthurPewty Sun 03-Mar-13 18:26:03

i was doing fine today, killing time. now i think i need my hand holding a bit.

logic tells me this is silly. worrying about something that hasnt happened yet is stupid. I will either walk out with a diagnosis of E or a diagnosis of not-E, or no diagnosis at all. Three possibilities. That's it.

I know that when i've gone into autism assessments with my kids, knowing that they had autism, my confidence helped me not to worry so much, because i knew i was right. And i knew i'd walk out with a diagnosis because there was no other conceivable outcome.

This time, i dont know i am right. I suspect i am right, sometimes, and then other times i think i'm just overreacting to nothing and worrying over nothing and embarrassing myself in the process.

Why is it ok for my friends to worry about lumps or symptoms, and that's a perfectly normal thing to do, but its not ok for me to do it? I mean, if i'm wrong, and he sends me home empty handed, i will be so humiliated and feel like my credibility will be irretrievable. But why? that's silly. I have different standards for other people than i have for myself. I always have. Its okay for other people to be human but i have to be super-human.

That bastard registrar did more than just upset me that day, he questioned me and worse still, made me question myself, totally undermined me, and now that the doubt is there, i can't shake it. I keep going from "i must have epilepsy, there's no other explanation for that rising feeling" to "i'm gonna be shown the door tomorrow and my smug GP will be right". Let alone the pressure here in my home, the pressure to drive, the pressure on me if i'm wrong, again, my credibility, etc... I can literally bounce from one second to the next with these thoughts - i must be right - but i bet i'm wrong.

ArthurPewty Sun 03-Mar-13 18:42:26

in fact i think its my past bad experiences when i thought i knew the answer, that is causing a lot of these feelings tonight.

I went to a GP in 2001 with my thyroid and got thrown out of the practice because i felt so strongly that i had an underactive thyroid and he said i was just fat and needed to stop eating so much. I did go privately, and a good doctor did diagnose my thyroid and it still doesnt work 12 years later, but still.

But on the appointments where i take my husband (the ones for the kids) we walk out with answers, diagnoses, we were vindicated and we were right.

Maybe i need to take my husband tomorrow? Its too late actually, he couldnt get the time off work, but its worth considering that when a man goes with me, i make progress. When i go alone, i am told i'm just a neurotic mom or an overanxious person.

And then i wonder why my self confidence is in the toilet when it comes to seeing doctors. Duh.

moosemama Sun 03-Mar-13 19:02:12

<holds Leonie's hand>

I don't have any useful advice really, because I am exactly the same. I have soldiered on for years without going to the GP, because I felt no-one would listen or believe me.

Dh does come to all my neurology appointments with me, but he's not much help. Last time, when we told her we had a video of my intentional tremor on his phone, she said she didn't want to see it and despite me looking to him to insist he didn't, he just put his phone away. hmm

The only time it's been really useful having him there was just after my second mri, when she started asking more questions about my full medical history and he had the answers. My memory is shot and the fact that the lifelong list of episodic/relapsing illness came from him gave it more credence - it shouldn't - but it did.

I went to the GP up in Lancashire after being stuck in the house for 6 weeks with extreme exhaustion and debilitation and he told me I was lazy and needed to get off my backside and take the dog for a walk. hmm angry That was the last time I ever bothered any medic with my episodes, until dh dragged me to the GP when my migraine was basically destroying both our and our children's lives with me constantly in bed for days on end in agony and then again 6 years afterwards when I was having the TIA symptoms.

It's the pits. At home I am able to rationalise that doctors are not Gods or Superbrains, they are not superior to me - the are just people who have studied a certain subject and are being paid to dx and treat me. The minute I get into their office I feel about two inches tall and suddenly feel I have got it all wrong and it must be in my imagination.

Sorry I can't be more helpful, but I hope it helps a little to know that you are not alone in this and someone who understands is listening and cares. ((hug))

moosemama Sun 03-Mar-13 19:03:13

Couthy,

I am so sorry things are so tough. Again, I have no useful advice, but wish I had - or that I could do something practical to help. ((hug))

ArthurPewty Sun 03-Mar-13 19:09:23

Thank you Moose. I instantly jettison my spine, because its important to me, to know why this is happening, to know i'm not insane or imagining things.

When i talk to the gynae about my bladder or the bowel man about my toilet troubles, i can be dispassionate, because its just my arse, its not my mind, my faculties, the very essence of me, you know? And there isnt so much at stake with my arse, iyswim. Its just a backside, no big deal.

UGH. I know that its important to me to get an answer. I also know that my nerves alone can throw this appointment. I wish i had a magic I-wont-be-nervous button. Maybe i'll try an extra piece of clonazepam again?

MerryCouthyMows Sun 03-Mar-13 22:49:58

It pisses me off that no consultant would ignore your diagnosis of cancer and say it's psychological - so why do they do that with lots of people who have seizures?

personally I don't believe in NEAD, I just think they are seizures that they haven't seen the evidence for on an EEG or MRI.

I don't know, I guess it's just a big bugbear of mine - why Neurologists in particular seem to think they are God, they don't like the patients being informed, etc etc.

Even other consultants say that about Neuro's - an obs consultant I know as a friend one said to me that "most Neuro's have their head so far up their behind that they can't tell where their arsehole ends and their own brain begins..."

grin

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