Here some suggested organisations that offer expert advice on SN.

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

ArthurPewty Sat 23-Feb-13 11:37:37

Couthy, I am sorry to hear it. But hopefully that will be the end of it. Xxx

MerryCouthyMows Sat 23-Feb-13 13:36:32

And I've had the idiot partner asking me "when are you going to realise you can't cope with 4 DC's?"

Mostly because he has looked at DLA rates and is seeing pound signs.

He wouldn't be able to stay awake for 72 hours on just 2-3 hrs sleep a night like I have to - even when he's here 'helping' he's asleep by 10pm - who would look after DS3 when he wakes up at 1am and is awake solidly till 10am?!

He's now saying that he shouldn't have to pay maintenance if I get DLA for DS3 twatbag, as I will have more money than him so he would need it more.

We are not living together, and are only 'tenuously' trying again after almost 2 years apart.

On top of the sleep deprivation, it's too much to have him threatening to take the DC's away.

I DID get so pissed off today that I pointed out that he wouldn't get custody by using my disabilities against me, as that is against the equality act.

He then backtracked...saying that's not what he meant etc.

Truth is, he's got autism, he has MASSIVE anxieties surrounding cancer since his auntie died 20 years ago of bowel cancer, and he's approaching a breakdown because of my diagnosis.

So much as he is being an arse, I can't hold it against him, as it's not his fault this time!

Which makes it worse for me, because I have to be strong for him, because if I fall to pieces then there is nobody else holding things together because if I fall apart, he will.

It's so flipping difficult having to be strong on the outside all the time, when really you are a ball of confusion, stress and worry, and maybe, just maybe, for once in your fucking life, you NEED someone else to carry YOU, instead of YOU carrying everyone else FFS!!

<<aaaand breeeeathe.>>

<<rant over!>>

ArthurPewty Sat 23-Feb-13 19:27:19

I had some similar shit from the husband, he's acting a lot more sensibly now.

SOmetimes i think in their childish autistic way, they dont know any better.

Doesnt make it right though. I'm sorry, couthy.

ArthurPewty Sun 24-Feb-13 11:40:28

hope you guys are feeling okay today.

6 days to MRI, 8 days til big consultant appointment. I am not as nervous as i should be - i had a stinking migraine friday and i have a shitty headache this morning.

One way or the other, i should come away from it with SOMETHING for the headaches, right?

ArthurPewty Sun 24-Feb-13 16:07:10

i'm trying to get my paperwork together but i dont know if it is worth writing anything down any more.

I had a funny episode yesterday - i was in the middle of a sentence, at 10am, talking to a friend about a meeting she's got coming up with the LA and reports we've obtained etc. I had something important i'd wanted to tell her on friday but i just could not carry on a conversation on friday, i was in too much pain.

So i launch into this conversation as we're sat waiting for the first activity to start, and suddenly, out of the blue, i get the rising feeling, the fear, the lightheadedness, and its all very mild. BUt then i notice i can't talk, its like my train of thought was hijacked, all i could say was "umm" and "well, you know" and i could not finish my sentence. I was stuck, for a good 5 - 10 seconds.

And then it was gone, vanished, like it never happened.

Whether my friend noticed anything, i dont know. She seemed to scaffold the conversation and we carried on (she has autistic kids, she knows perfectly well how to rescue a conversation, lol), and then i was able to get going and tell her what i wanted to tell her.

It was so brief, like a flash. Like i'd been interrupted, like my brain was interrupted.

Sometimes i think i ought to just print this description out for him. Other times i think i need to go in there all meek and helpless and let him do the diagnosing. I am so frustrated about all this that i'm having nightmares about normal EEGs. Seriously.

ArthurPewty Sun 24-Feb-13 18:26:35

went through some old paperwork, found some prescription repeat forms for Lamictal, and a letter i wrote once i moved to the UK requesting copies of my medical records - including my epilepsy, my migraines, etc.

Interesting stuff. DOesnt prove anything really, but its interesting. All on 8.5 x 11" paper, too wide to fit into a plastic sleeve, natch.

MerryCouthyMows Sun 24-Feb-13 18:35:24

Looking round the SEN school r.e. Nursery placement for DS3 tomorrow afternoon, then colposcopy and Loop diathermy on Tuesday morning...

ArthurPewty Sun 24-Feb-13 18:45:48

hang in there couthy... praying all goes well for you xx

ArthurPewty Mon 25-Feb-13 09:34:27

had another funny turn in my sleep last night - i woke up around midnight, with the fear feeling, the wave, and the weird head... Not cool.

MerryCouthyMows Mon 25-Feb-13 12:25:38

On my way to the SN school / Nursery visit. Pooing bricks about tomorrow, never had a general anaesthetic!

ArthurPewty Mon 25-Feb-13 13:26:50

I have twice, in the early part of last decade. tonsils and laparoscopy.

hang in there sweetie x

ArthurPewty Mon 25-Feb-13 16:31:30

Registrar rang today to apologise.

Three times in the same conversation.

I reckon the consultant must've sat on him big style.

Well done PALS.

NoHaudinMaWheest Mon 25-Feb-13 18:34:42

How did the visit go Couthy and good luck for tomorrow.

Leonie great result smile

MerryCouthyMows Mon 25-Feb-13 19:18:27

School was AMAZING. And they were offering me advice on getting his statement so that I can 'name the school I want'.

All set up to deal with his allergies too - the HT's DS has a severe nut allergy! They have a swimming pool there, kept at hydrotherapy temp, and even Nursery go swimming at least once a week, all with 1-2-1 support. 2 different sensory rooms, a 'quiet nook' built in to the classroom...

It was PERFECT. You know when you get that 'gut feeling' that it's the right place for your DC? Well I had that today!

MerryCouthyMows Mon 25-Feb-13 19:18:56

Bloody right too, the registrar ringing you to apologise!!

ArthurPewty Mon 25-Feb-13 19:28:22

Yay couthy!!!!!!!!!! I know that feeling, and when it clicks, its a blessed wonderful thing.

yeah. i mean, he was saying he didnt mean to judge me and he didnt intend to think less of me or mean to talk down to me... but DH thinks it was an apology "under duress."

I think the consultant has incredible powers and basically told Registrar that he better call and grovel to keep PALS off their backs - though an apology (or three) wasnt what PALS promised me, so i wonder why he rang at all?

I wonder what this spells for Monday's appointment with the Consultant Himself? Clean slate? Them tiptoeing around this ferocious little woman patient? I sure hope it goes better for me, though i am steeling myself for disappointment.

I am also giving some thought to trying to secure some more notes from my GP from 15 yrs ago. I dont know if it would help, but when the reg said "that isnt epilepsy" in response to my EEG report, i realised i dont actually have any written proof of a dx. I have an eeg report, i have numerous repeat script slips for Lamictal, but nowhere is it actually written "i have diagnosed this person with epilepsy" - perhaps i need to find that somewhere, or ask the old GP if she'll write a letter about it? Doubt it will get here in time though. Should have thought of this sooner, SIGH.

ArthurPewty Mon 25-Feb-13 20:11:28

old GP left the practice long ago - i just put in a request for a search for my records in storage, will take several days and a flat fee of $25.

Old neurologist's office seems to have closed, no one answers his phone, and he appears to have gone from the area. Bleh.

i dont know what difference "proof" will make, anyway.

NoHaudinMaWheest Tue 26-Feb-13 00:39:57

Merry great news about the nursery. Hope all goes well tomorrow.

MerryCouthyMows Tue 26-Feb-13 06:01:14

I've not been able to sleep. Have been faffing around sorting out my iTunes! Just too much running around in my head.

ArthurPewty Tue 26-Feb-13 07:41:00

hugs xx

ArthurPewty Tue 26-Feb-13 10:39:14

thinking about couthy this morning. hope it all goes well for you and you'll be cancer-free by the afternoon. xx

ArthurPewty Tue 26-Feb-13 16:33:12

i sure hope Couthy's had as good a day as is possible.

Thinking of you, and Moose too, and everyone really.

MerryCouthyMows Tue 26-Feb-13 17:20:42

Lost a big post earlier will update in a bit.

moosemama Tue 26-Feb-13 20:10:17

Couthy, sorry haven't had chance to get online today until now. Hope everything went well today. I hope your dp is looking after the dcs tonight so you can rest.

ArthurPewty Tue 26-Feb-13 20:14:19

how bout you, Moose? how's things?

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