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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

NoHaudinMaWheest Thu 07-Mar-13 21:49:04

Well done to Ds2 Moose.

moosemama Thu 07-Mar-13 22:14:49

I've looked it up - apparently he was a she - a young female smooth newt, they are nocturnal, live more on land than in water and come out of hibernation late Feb to early March, so I guess she was ok. Glad we stopped her getting squished though.

Thanks NoHaudin, I am a very proud mummy tonight and it's so nice for ds2 to be in the spotlight for a while, as he is very much overshadowed by ds1 much of the time. I actually think he could have a future in acting. He was one of the few that actually 'acted' rather than just saying his lines and he has had such fun doing it. He is adamant he wants to be an infant school teacher though, so I'm guessing drama school is out! grin

ArthurPewty Thu 07-Mar-13 22:32:57

yay moose's ds2. :-)

I'm feeling very unsure of myself tonight. I'm waiting for the letter. I'm beginning to doubt myself. the consultant did ask a few questions that pointed at pnes/nead (were my episodes the same every time, and did I bite the tip of my tongue) and I'm wondering if that's why he gave me such a low dose of lamotrigine, cos he doubts me?

he didn't tell me not to drive, he just asked if I was driving. he didn't give me a diagnosis either, except to comment that my chewed up cheeks sound like 'complex partial seizures' - does that count as a diagnosis? I felt so good that day, so relieved. its wearing off now though, waiting for the letter, and I'm scared what it might say / not say.

what a silly thing to worry about. sigh.

ArthurPewty Thu 07-Mar-13 22:39:15

trouble is, I can't rely on my memory of the event, nor can I remember exactly everything that was said.

he said it would all be in his letter - but that's not helpful while I wait for it, is it?

moosemama Thu 07-Mar-13 23:04:48

From what you said on the day Leonie, it sounded like he was giving you a dx of complex partials and your gut feeling on the day about what he meant by what he said is most likely correct.

You are just having a wibble. He's started you low so that he can see where your threshold is, if you need more he can up it, but if he goes to high too soon he'll have nowhere to go, iyswim. Standard practise I would think.

Trust your feelings on the day - you don't give yourself enough credit.

ArthurPewty Fri 08-Mar-13 07:28:49

I'm prone to wibbles. I don't feel much better about it this morning, though I slept like a log... boy I'm gonna look stupid if that letter doesn't say anything or leaves out the crucial words, that's all.

MerryCouthyMows Fri 08-Mar-13 09:49:42

I WILL give a full update later. Sorry, just been excessively busy and having TONS of seizures. DD's birthday today. Saw SW yesterday, will explain later. Going to London today for Justin Bieber concert for DD's present if he's out of hospital am worried her present is going to he messed up!

How very DARE he be ill?! wink

An waiting for my pre OP assessment for cervical shite.

MN keeps eating my posts.

ArthurPewty Fri 08-Mar-13 11:14:57

no letter today. bugger.

ArthurPewty Fri 08-Mar-13 13:06:35

the two greatest charities in the world (ep society and ep action) have reassured me. consultant wouldn't have prescribed lamotrigine (and discussed carbamazepine) nor name dropped 'complex partial seizures' if he wasn't certain it was epilepsy.

I can't help be nervous. I don't want to assimilate this, and then be wrong, or use the wrong words, or get a letter with 'nead' written all over it, kwim? its awkward.

in other news, I sleep like a log, apart from the one night. seriously, I feel so much less gut churning worry, andi feel calmer, just on 25mg. I'm not 'waiting for the next seizure' - I'm just getting on with it. this stuff is good for me. I am hungrier though - I hope I don't put on a bunch of weight, argh.

moosemama Fri 08-Mar-13 14:01:16

Glad they have been able to reassure you.

As for being hungrier - eat more lettuce? wink

I didn't get any bloody sleep last night, dd was awake all night with nightmares. I didn't get to bed until midnight, she woke at 1.30, then again ... and again ... and again, until we gave up and brought her into bed until 4.00 am. Then she lay across the middle of the bed and spent the remaining hours repeatedly flinging her arm across my head. hmm

I feel horrible today, but on the bright side, no deep sleep meant no night-time episode, so that's 3 episode free nights on the trot. Yay! hmm

ArthurPewty Fri 08-Mar-13 17:37:54

hee hee yes, more rabbit food.

ugh to no sleep. i was up half the night the other night and it leaves you absolutely messed up the next day, yuck.

ArthurPewty Fri 08-Mar-13 17:51:41

This story is awful, and yet, so hauntingly familiar... i've not had the dreaded Cancer to cope with, but its the "its all psychological" part i'm getting at...

moosemama Fri 08-Mar-13 17:53:11

Urgh, am brewing a migraine and dh just text to say he's not going to be leaving work before 7.00 and it will probably be later.

Apparently he's had it both barrels off his boss this afternoon as well - and he's working tomorrow and possibly Sunday as well. Think I might hide when he comes in tonight - he's gonna be in a foul mood. hmm

Haven't got a scrap in to feed the dcs either, so haven't a clue what to do about that.

I will be glad to see the back of this week.

moosemama Fri 08-Mar-13 17:55:00

Oh - and we had our gas safety check today ..... they condemned the cooker. hmm It's ok to use for now, but we've had to promise to get a new one asap, despite being broke - hence having no food in. <sigh>

Cross posted - will go and check out your link now.

ArthurPewty Fri 08-Mar-13 18:31:44

ack, condemned cooker is not good!!

moosemama Fri 08-Mar-13 18:39:05

Wouldn't mind, but it's pristine, it's just old. My Dad put it in here just before we moved in 10 years ago though and it was second hand then, so it doesn't owe us anything.

Read that link. It's scary isn't it. She was so right about them assuming depression or anxiety first when it's a woman - especially women from a certain age bracket. They're not so quick to do it with men, but it does happen. It's no wonder we either choose not to go to the doctors or if we do, get stressed about them not taking us seriously. sad

ArthurPewty Fri 08-Mar-13 19:02:08

i am so sick of being accused of being a hysterical woman.

Worse, the GP who fobbed me off in September, barely referred me in December, and clearly wrote such a shitty referral letter that she doesnt want me getting ahold of it, is FEMALE, and a mom with kids in my kids' school...

moosemama Fri 08-Mar-13 20:37:53

Take satisfaction that she is going to have to swallow a big helping of humble pie when she gets the letter from your consultant confirming it is epilepsy and she is both dismissive and incompetent.

ArthurPewty Fri 08-Mar-13 20:41:57

and head of the practice too. OUCH. grin

moosemama Fri 08-Mar-13 20:47:50

grin

ArthurPewty Fri 08-Mar-13 20:48:32

i will take great smuggery in knowing that when I get my letter, they will get theirs. And someone will read it / log it.

And there will be great joy.

MerryCouthyMows Sun 10-Mar-13 04:02:12

God I hate GP's like that!

I've gone from 600mg/day Gabapentin to 1500mg/Gabapentin in a few days on the advice of the GP as he can't get hold of our PCT's ONLY Neuro. Who is on ducking annual leave.

I had to go for my pre-op assessment yesterday. Aaaaaaaaggggghhhhhhh!!

I found out that I had MISTAKENLY been put in as a day case. And that the anaesthetist would probably refuse to do me as a day case, because of an epilepsy / Hypermobility / TMJ combo.and I wouldn't get told that till Tuesday.

Exis having to book unpaid time off work to have DS3. His work have told him that as they are short staffed, it's the last unpaid day off he can take in the next 12 weeks. If he needs to swap Tuesday for another day, he HAD to let them know THAT DAY, or they would refuse.

The pre-op assessment nurse couldn't get hold of the anaesthetist. Inpatient booking line couldn't give me a definite answer there and then as to whether they could give me an inpatient appointment, for the 12th OR any other day, UNTIL they had spoken to the anaesthetist. Who wasn't available.

She told me to go complain to PALS. Who are only available between 2pm & 4pm. hmm. That's a perfect time when you have school age DC's to pick up...

So, I got told then to go see the ward manager of the day case ward, to try to speak to the anaesthetist to see if he WOULD do me as a day case.

Anaesthetist STILL not available. Wait around. Wait some more.

Then get taken to the INPATIENTS ward. Here to go through pre-op assessment AGAIN. Finally get told that they admit that somebody messed up by putting me in as a day case, that they have finally got hold of the anaesthetist (who was working in the private hospital...), agreed I'm not suitable as a day case, and got me put in for the 12th as an inpatient case.

FFS. And nobody seemingly understood that either they had to put me in as an inpatient case on the 12th OR change the date THAT DAY, or me & my ex would be faced with a choice of DS3 going to work with my Ex while I had the op (in a catering kitchen. With multiple severe allergies...), OR come into the operating theatre with me!

'Your childcare issues are not our problem"

Yeah, but if I can't get childcare from my ex, there's NOWHERE else to put DS3. NOWHERE.

So if Ex can't have him, then I can't have the op. No matter HOW urgent it is marked on their bloody file. It's not so urgent that I'm able to leave a 2yo home alone!

<<bangs head on wall>>

I'm just glad it finally got sorted!

MerryCouthyMows Sun 10-Mar-13 04:18:05

And that was during the school day.

Then picked DD up from school and took her to London, as her dad had got her tickets to see Justin Bieber.

She managed the queue at the O2 ok. Froze when she realised that we weren't in seats flat on the floor, but the lure of Bieber coaxed her in. At first with the support acts she got a bit tearful because of the noise, but the she got into it and started enjoying herself.

She did actually LOVE it. I may have melted my ears though...

When we left, DD took one look at the queue for the tube and started going into meltdown. Made a split second decision to catch the bus! Which worked, it was almost empty.

Got to Stratford station at 11.45pm, last train back to deepest Essex was at 11.57!

Finally got in at 1.30am, then had to wait for a takeaway as we hasn't had dinner. I think I went to sleep at around 3am.

Having +++ seizures right now, especially nocturnals - except they're not always at night, because I keep falling asleep in the chair at odd times because of the speedy rise in my meds.

I'm feeling like shit, frankly. I'm not ignoring you all, I'm just so busy and stressed with everything, I'm not getting much time to MN.

Bleurgh.

Just wish I could get it all done.

I have a family support worker coming round on Monday from the primary school. Maybe they can get some help in place.

Ex is being a knob right now, every time I get panicky and shouty after a seizure, he gets really angry with me when I can't even help it. I try not to but I can't stop it.

And then when I try to tell him that it's not fair and I can't help it, and how does he think I feel, he just turns it all round on him and how HE feels.

It's ALWAYS about how HE feels, he never listens to how I feel, and not does anyone else.

Mother's Day is a wash out for be because he is taking the youngest two to HIS mum's and doing fuck all for me. Except leaving me on my own with the two that fight all the time without any help when I feel like crap.

When I complained, he started going into meltdown about how he can't please everybody, and I shouldn't be upset because he can't please everyone, and my upset was wrong because he can only please one person. So he chose to please HIS mum, and screw me! AND I'm not meant to be remotely upset by that. angry

I'm just fucked off and frustrated with life in general right now.

I'm not coping well emotionally AT ALL.

ArthurPewty Sun 10-Mar-13 07:39:19

i am so sorry to read this couthy. the more stress you have on, the worse it gets :/ i wish there was something i could do to help but you're too far away to get to :/

ArthurPewty Sun 10-Mar-13 16:06:25

just got lambasted by a "friend" who accused me of being a hypochondriac and said some really awful things. I've got nowhere else to talk about it, so i'm putting it here. My frantic worrying probably does seem senseless to those who don't live inside my head.

Telling me to enjoy my family and stop wishing for worrying test results is a bit mean. Telling me how disgusting my thyroid replacement of choice is, is unfair at best.

Bollocking me for the lot on Mother's Day, and then unfriending me and blocking me on social networking is just childish.

Sheesh. sad

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