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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

ArthurPewty Sun 30-Dec-12 10:45:56

wow, rough night. Fell asleep reasonably e, but snapped wide awake at 5am, the most vivid dream i've ever had in my life. It was about a school presentation, sort of, and a note i'd made about a teacher, and I was sobbing in the dream cos the teacher was right proper dressing me down for what i'd done.

I woke up sobbing (without tears), but you know, that tightness in your chest when you've been gut-wrenching sobbing about something? I was mechanically sobbing, without tears.

Took me a long time to shake it off, and then i started worrying about other things, the cats, my kids, whether the front door was locked, etc, and i didnt get back to sleep until about 7, snapped awake at 7.30 when a cat meowed, neck vibrating, as usual.

And at 10.30 when i brushed my teeth, i discover my cheek is bitten, again, on the other side this time. I've woken with bitten cheek or lips 7 times since I started keeping records.

ArthurPewty Sun 30-Dec-12 10:46:48

and today i'm feeling particularly hypergraphic! I've been readind about Geschwind, and i swear to god i can relate to his "personality" - i've changed so much in the past year since all this started happening more often...

moosemama Mon 31-Dec-12 15:47:17

Leonie, that sounds like a horrible stress dream - do you think it came before or after the seizure?

Well, EEG done. Letter sent me to neurophysiology in the new building, got there early, had a drink, went up with ten minutes to spare, only to be told they were doing the EEGs in the other building today and had to troops across half the hospital to get there - me first time out without my crutches and Mum who can't walk far anyway. hmm

But hey, the first department was heaving and in the second there was only me and one other lady and they took me in bang on time, so can't complain. I have been there twice now (other time was evoked potentials this time last year) and been impressed with how efficient they are both times.

Thought it was ok-ish, but kept being told to stop blinking when I didn't know I was. Mum was watching and said my eyelids kept fluttering and I had quite a few twitches and lots of 'buzzing' but it didn't induce an actual seizure. The strobes were horrible and left me feeling very odd, spacey and buzzy - so much so that I had to go and have a sit in the cafe and a drink before I could face the drive home.

Got stuck in heavy traffic, so it took almost an hour and half to get home. I now I have a stonking headache, feel completely wiped out and a bit wobbly - which isn't great as we have guests tonight for NYE, consisting of a family of four - so nine of us and two dogs in total, all squished into our tiny house.

Still, we have pizza for the kids and ordered take-away curries last night for the adults to have tonight, so no cooking to be done and they are very good friends who are fully clued up and understanding. Their youngest dc has HF ASD and no-one bats an eyelid at either him or ds1, so it's nice to be able to socialise without stressing about the kids behaviour.

Just the MRI to go in a couple of weeks now before I hopefully get a neurologist appointment through to be told nothing showed up and they are going to 'monitor things'. hmm grin

ArthurPewty Mon 31-Dec-12 17:29:41

Bless. I'm glad you made it ok.

I'm expecting the same thing to happen to me hmm if i ever hear from anyone...

ArthurPewty Mon 31-Dec-12 20:47:26

Happy New Year everyone - hope 2013 is a year of answers and improvement for everyone xx

ArthurPewty Wed 02-Jan-13 10:47:32

chased appointment - finally have a date.

28 Jan.

At least its not march :/

ArthurPewty Wed 02-Jan-13 10:49:08

Special interests: parkinsons and movement disorders.

FUCK.

MerryCouthyMows Wed 02-Jan-13 11:41:10

FFS, why can't they find an Epilepsy specialist Neuro for people with suspected epilepsy to see? I'm sure if need be, we would travel to get the right answers - I know I will.

I'm going to go through choose and book, and research who I want to see BEFORE asking the GP for a referral.

I'm pissed off with being sent to Neuro's who specialise in Parkindon's or MS when what I NEED is an epilepsy specialist Neuro.

I have to travel 60 miles to see an epilepsy specialist Neuro, and I haven't seen them for 4 years - first because my bigger seizures stopped, and I mistakenly thought my epilepsy had gone when I was still having smaller seizures, and then because despite my seizures starting up again, my GP hasn't referred me for anything, no Neuro visit, no MRI, no EEG.

I'm going to be pushing for all that once the DC's are back at school.

Go see the Neuro, see what he/she says, and if you aren't happy, then do some research, find the best, most recommended Epilepsy specialist Neuro within travelling distance, and request to 'choose and book' am appointment with them as a 'second opinion'.

And I've just had a phone call from my Charity Lady saying that she has done all she can do for me, so will be starting the 4 week 'sign off' procedure. If I need to appeal my DLA application (I won't know until at least 15th Jan), then I will have to self-refer back to them.

Fucksake. Every time I find someone remotely helpful, I get signed off when I still feel I need their support.

Pisses me right off.

ArthurPewty Wed 02-Jan-13 12:29:19

well the GP chose him. I'm not sure why.

But then i read this

and yes he specialises in Parkinsons. But it seems he knows his way around headaches AND epilepsy... and he's famous on the Guardian, The Beeb (papilloedema article) and Twitter.....

ArthurPewty Wed 02-Jan-13 12:29:43

(click the personal tab on that link)

ArthurPewty Wed 02-Jan-13 12:30:32

Couthy, i have appealed a DLA decision before, I can help with that if you need help x

MerryCouthyMows Wed 02-Jan-13 14:50:28

I may well need it, Leonie.

ArthurPewty Wed 02-Jan-13 15:03:38

Just pm /email me x

ArthurPewty Wed 02-Jan-13 16:54:59

right, officially gathering information up / printing off / whatever.

Do you know what it is he'll want to see? Will being too organised put him off?

ArthurPewty Thu 03-Jan-13 20:52:33

spent a while on the phone to the two main epilepsy charities today, just getting advice.

I dont know why i am so worried, but i am fretting like a fretting thing. Seems stupid. :/

I do have 3 appointments within 8 days (22nd, 28th and 30th) which is annoying of which this one is the middle one. I am finding that a bit worrying but i have no choice, i need to attend all 3.

I've put off my health problems so long, and now its time to deal with them, now that i have the kids lined out.

I've looked back over my diary for the last 5 months - its pretty depressing reading. Sheesh. I turned the narrative into data on the Epilepsy Society's diary and actually, there's a lot going on in my head on a daily basis - not cool.

Random hand spasms tonight - kinda like alien hand syndrome :/

MerryCouthyMows Mon 07-Jan-13 12:43:16

I've been having more myoclonic seizures lately. And more nocturnals too. Reckon I'm building up to a really big seizure. hmm

It is definitely on my to-do list to chase up MRI /EEG / Neuro, it's getting ridiculous that my seizures returned almost a year ago yet I've not been sent for any of these appointments.

I need to think about my own health problems as well as those of the DC's for once!

ArthurPewty Mon 07-Jan-13 13:03:42

indeed. new year's resolution for us both.

The week i have the neuro, i also have the gyn to discuss my multiple prolapses, AND an annual statement review! FFS.

ArthurPewty Mon 07-Jan-13 13:06:58

i found an interesting link, couthy:

api.ning.com/files/f3bXq41KN657LAllZM7ISEWqzZlQ6kK*BloiTJnsyhWiMjpREYrk-lWO9vx6d-6ixi169b8W5y-GTOT8naGqk1CfH0zhIM2Z/EpilepticconsciousnessConceptandmeaningofaura.pdf

very interesting cos basically it explains why my "funny turns" are epileptic and not "anxiety attacks" or whatever.

have printed and attacked it with a highlighter... am really very nervous with 21 days to go.

MerryCouthyMows Tue 08-Jan-13 13:46:49

That is interesting! I may also print it out.

ArthurPewty Tue 08-Jan-13 13:52:05

highly salient, tbh.

and it confirms my fears that yes, when I'm all absorbed by the fear and tummy thing, or the blinking and sleepy thing, it is actually affecting my level of consciousness - and I absolutely should not be driving!

ArthurPewty Tue 08-Jan-13 20:03:48

Stupid question. Should i have surrendered my provisional licence already?

GP asked me back in September if i was driving, i said no, cos i wasnt, but that means she hasnt notified them of anything.

mariammama Tue 08-Jan-13 21:16:28

turns and driving and detailed advice. GP will usually only call DVLA if youre a manifest danger who is ignoring advice not to drive.

Would suggest you tell DVLA that you're having funny turns and will let them know what the neurologist says. Then when hassling neurologist to hurry up with MRI /EEG etc you can blame the need to get a proper diagnosis quick for license (or lack of).

If you're not allowed to drive, then you're eligible for a free bus pass via the county council.

mariammama Tue 08-Jan-13 21:17:35

Try again turns and driving

ArthurPewty Tue 08-Jan-13 21:18:35

oooooh, clever tactic! grin

MerryCouthyMows Tue 08-Jan-13 23:14:07

Legally, if you read the small print on the back of your license (even a provisional), you are meant to surrender your license if you have blackouts or seizures, yes, even if epilepsy hasn't been dxd.

You have to be a year seizure or blackout free before you can reapply for it.

Hence why I don't drive, and haven't for 9 years now.

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