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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 Thu 14-Mar-13 16:46:33
moosemama Thu 14-Mar-13 16:43:53

Leonie, change GP surgery - you are not going to win with someone with that attitude.

Glad the Consultant put her in her place.

Going to start a new thread now, will pop back and link.

LeonieDelt Thu 14-Mar-13 16:07:12

Consultant's sec will ring in the morning and tell me what to do wrt pills.

all my head pain is coming back.

but, no burning pain in my legs.

DECISIONS

LeonieDelt Thu 14-Mar-13 11:16:07

got my letter.

it confirms that GP thinks i have "panic disorder" by the way it is written.

it also confirms diagnosis of "complex partial seizures"

Consultant writes "I have to admit the history I got today was entirely consistent with complex partial seizures rather than a panic disorder."

he also notes eeg showed nothing specific and the MRi wasnt reported yet but looked normal at a glance.

LeonieDelt Thu 14-Mar-13 11:03:57

and when i told her the pharmacist filled in a yellow card, she LAUGHED and ROLLED HER EYES.

sigh. she doesnt believe a word i say, does she?

LeonieDelt Thu 14-Mar-13 10:45:09

okay, so wtf? GP hasnt had anything back from the neuro. she doesnt even believe me until i produce a photo of the prescription. Has no info on the appointment, wanted to know what the test results were (i didnt have them yet either), etc.

i have no rash to show her, i can only show her my still-slightly swollen legs, which she takes as fat.

She said "well, we have lots of patients on lamotrigine and that's never happened to them, its very rare."

And then proceeds to suggest i re-try them in 7-10 days, cos "now i know what to look out for."

... ?

And the clencher: when sh's taking notes on what i'm saying, to put it in the computer, she types "say neuro 4/3/13, suggested lamotrigine 25mg od"

UMM NO. He didnt "suggest" anything, he FUCKING PRESCRIBED. There's a whole world of difference between the two phrases, and i dont think that's just me being pedantic. She's minimising/disbelieving what i say. It fucking pisses me off.

So, now i do not know what to do.

LeonieDelt Thu 14-Mar-13 08:06:24

oh charming - the only Gp available is the one who wrote the shitty referral letter - and blew me off back in September, and generally doesn't believe me...

so with the gps having no info about this anyway, how well is this going to go down?

fgs. fucking hell.

LeonieDelt Thu 14-Mar-13 07:18:53

oh, and well done wrt the forms! they are so draining :/

LeonieDelt Thu 14-Mar-13 07:06:21

hell no t epilim, I won't take it on vanity grounds. I'm planning a sterilisation whenever the bum doc gives me a next appointment and we schedule this ventral rectopexy - so I'm not worried about the possibility of more kids cos I know how they're made wink but I will not take epilim cos its nasty. nasty to hormones, nasty to the liver, nasty weight gain.

I hated tegretol last time but am happy to try it, assuming I don't cross react to it...

LeonieDelt Thu 14-Mar-13 07:03:19

yep. knees look even better this morning. fucking hell.

gotta ring up at 8 to get an apptmt.

MareeyaDolores Thu 14-Mar-13 04:53:55

well done couthy re form. Leonie, I'm so sorry re lamotrigine

MerryCouthyMows Thu 14-Mar-13 00:19:22

I've just finished DS3's DLA form fucking finally. I just need to photocopy it for my records in a sec, and then I can send it signed for tomorrow morning.

Bleurgh.

MerryCouthyMows Thu 14-Mar-13 00:18:08

Rest?! What's that?!

MerryCouthyMows Thu 14-Mar-13 00:17:31

'Fraid so, Leonie. It's poo.

My bet is they'll try either Epilim or Tegretol next.

Only one thing though - if there's ANY chance that you are planning any more DC's, or even the slimmest chance that your contraception will fail, blah blah blah, then ask NOT to be put on Epilim due to sodium valproate syndrome in unborn babies.

<<Lecture over, because Neuro's DON'T give a shite about this, all too often, because it is the 'second line' drug after Lamotrigine...>>

ArthurPewty Wed 13-Mar-13 21:58:26

legs not burning any more. I credit the piriton.

the swelling in my legs is going down, my kneecaps look like kneecaps, and I can touch my legs again without the fire.

I still can't believe it. that is a drug allergy reaction, piriton wouldn't be fixing it otherwise...

ArthurPewty Wed 13-Mar-13 17:39:31

hope you get some rest couthy x

ArthurPewty Wed 13-Mar-13 16:06:28

oh, i wont take any more, but the one i took this morning has to wash out - and my thighs are rubbing together, they're so swollen, my knees are round with swelling... its spreading up my left hip sad

i read the T1/2 is 13 hrs, or 30 - 45 hours... so i have NO IDEA when this will stop or start to get better! meanwhile all i have is piriton, i probably need steroids!

ArthurPewty Wed 13-Mar-13 16:03:23

i did ring neuro's secretary, he's out til friday.
i left a message on her machine as to what's happened.
I've had no reply.

MerryCouthyMows Wed 13-Mar-13 15:13:05

Went to DS2's Physio - he starts hydrotherapy on the NHS next Wednesday after school. Half past bloody four in the afternoon, so by the time I get back each week, DS1 is going up he in meltdown mode as he will have had to sit in a boring waiting room with me for hours, DS2 is going to be tired, grumpy, whiny and probably achy too, and DS3 is going to create merry hell.

Every week.

I'm off to bed again in a sec, as I HAD to go to town today too (yes, that's 'rest'?!)

DS1 knackered his school shoes last Thursday, and I didn't have the money to get any till yesterday, and obviously couldn't go to town yesterday to buy them. School have said that if he isn't in school shoes tomorrow, he will get an after school detention.

They can't give him the break or lunch detentions like usual in primary school because he is ALREADY internally excluded this week for an incident last week...

So, town it was. And bed it will be in around 10 mins...

MerryCouthyMows Wed 13-Mar-13 15:08:22

Oh shit Leonie. Erm, you need to call your Neuro's Secretary and ask them what to do for a replacement. And don't take any more!

I urge you to ring the Neuro's Secretary, as this counts as an emergency with the Neuro tbh.

Your GP is closed & has none of the info yet anyway.

I'm feeling like shite. So much pain, even through cocodamol and ibuprofen. It feels like my fanjo is on fire. Mostly because it was yesterday. hmm

ArthurPewty Wed 13-Mar-13 14:13:19

Gps full this morning, shut this afternoon. Went to walkinafter DD2's paed apptmt.

They freaked out a bit, said no more tablets, take piriton, get in to see GP asap.

Cant get in to GPs they are shut, so if i need anything else tonight, will have to attend local hospital.

My thighs are swollen as are my knees. And the muscles hurt on both sides of my thighs and now up the left hand side of my back/hip...

I get to Boots to get piriton, they made me fill in a Yellow Card cos this is HUGE. Said it was The Rash, but on the inside.

I'm scared shitless tbh. My glands are up and i'm really scared.

The piriton has helped with the burning but that's all. My legs still really hurt.

Wish to fuck i hadnt taken one this morning sad

moosemama Wed 13-Mar-13 10:28:22

Hope you've managed to get in at your GPs by now Leonie - and more importantly that they've been able to help.

Well, I rested all day yesterday, went to bed at 11.30 and didn't wake till 6.00 am. No episodes and feeling much more with it both physically and cognitively today. There is definitely a clear and marked difference between how well I am on the days when I haven't had any nocturnal episodes.

Ds2 is home today though. Kids were messing around just before we left for school this morning the other two fell on him and and he twisted his leg. He made a huge fuss and I told him not to be so melodramatic. blush By the time we got to school he was sobbing and in pain with his hip, knee and ankle on that side. Didn't want to stand with his friends, which is unheard of. Spoke to his teacher, explained and asked her to give him some ibuprofen (he's registered for it with the school and I have supplied a bottle) but she persuaded me to take him home. Of course he perked right up as soon as we got in the front door. hmm He's had some ibuprofen and been lying on the sofa watching tv - enjoying having the remote to himself without ds1 being home.

I am cheesed off though, because I am having a good day and was supposed to be going out to lunch with my Mum and Sister. I'm so tempted to go anyway and take him along, but a) don't want to reward him for being off school, as he has a tendency towards 'feeling ill' on school days, iykwim and b) I'm a wuss and am a bit worried we could get into trouble if someone reports us.

ArthurPewty Wed 13-Mar-13 09:30:18

secretary says go to my GP - consultant isnt in til friday.

my GPs dont even know i'm taking this stuff, cos they still havent had the letter. Neither have i.

christ on a bike. And what do i do for a replacement? I guess i let the consultant's secretary know, and she can tell him on friday when he's back in?

i cant take the burning any more, its all the way down my legs now, and it cant be right.

ArthurPewty Wed 13-Mar-13 09:20:31

but my clothes are still "rubbing" and it burns, now its all over my legs, and i dont know what to think.

and my thighs seem to have gotten very fat overnight...

putting in a call to the secretary. sadly i took one today, shit.

ArthurPewty Wed 13-Mar-13 07:22:18

its gone this morning! I put some steroids on, and its gone.

I also slept like i'd been coshed (!!!)

No idea what DH did, i know the kids were up as usual but he dealt with it.

i got an amazing 10 hours of sleep, only waking up twice, and the lack of pain is amazing. Really, i just cant believe how well i sleep (when i havent got a raging fever or whatever)

Putting in a call today to make sure i can keep taking this stuff. it really is the "missing link" for me, i think.

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