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Moose here, Not SEN children but could someone please advise me - epilepsy

996 replies

moosemama · 25/11/2012 22:37

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

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ArthurPewty · 04/03/2013 19:25

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ArthurPewty · 04/03/2013 21:52

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MareeyaDolores · 05/03/2013 01:22

Leonie Grin Sensible consultant. YAY!
Now, about that free bus pass...

MerryCouthyMows · 05/03/2013 07:04

Grin I'm picking up my form from the GP's today (thanks for the reminder, Mareeya!).

Less than 2 weeks and I'll have mine!

Will save me around £10-£15 a WEEK.

ArthurPewty · 05/03/2013 07:37

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moosemama · 05/03/2013 08:28

Morning folks

Inspired by Leonie's organiation I got dh to buy me a diary at the supermarket on Sunday for the sole purpose of finally recording my symptoms.

Managed to write in it this morning for the first after a less than restful night. I was determined to try and keep track of what was going on last night, so made a conscious effort to remember, not sure if I've remembered everything, but it's a start.

What I do already know from the past week or so is that whatever's happening, is happening between 4.45 and 5.30 every night and always starts with me suddenly waking feeling nauseated and frightened.

Last night and the night before followed the same pattern:

Woke up with a stomach ache, feeling nauseated and a little like I might have an upset stomack, as well as growing fearfulness and being extremely restless to the point of not being able to lie still - a bit like having restless legs, but all over Confused
Next came deep yawning, accompanied by massively watering eyes

Then I realised that my eyes were blinking, not quickly as I would have expected for seizure activity, but regularly slow, kind of rhythmic blinking. I tried to stop it, attempting to keep my eyes closed, but couldn't no matter how hard I tried.
While the blinking was happening my hand and foot were developing hot, painful pins and needles, that crept up my calf and forearm and I had the sensation of the big muscles feeling 'tight' but physically I don't think they were Confused
Eventually the muscles in my arm and leg started to ache, as if they'd been clenched or I'd done lots of exercise and the pins and needles pain started to diminish.

Throughout the whole thing I tried to keep my breathing calm and steady, to be sure it wasn't a panic attack. My heart did feel faster than normal, but not racing.

This happened three times in a half hour period and left me really exhausted.

One final thing I noticed was that when the blinking stopped, I couldn't make my left eyelid open. I have had that problem with my left eyelid, ever since I first went to the neuro in 2011 following the suspected TIAs, it happens regularly, but not every night - now wondering if it's only after an episode and hopefully, keeping a log may shed some light on that.

I fell into a deep sleep after it was over and dh couldn't wake me at get-up time this morning - when I did wake up, my left lid still wasn't playing ball.

I feel happier that I have actually written it down this time. Now wondering if it's seizure activity or could perhaps be autonomic dysfunction of some sort, bearing in mind that CRPS is autonomic in origin and affects the whole limbic system.

Not usually on MN this early, but dh had to go into work early today, so had to get up with the dcs.

Am trying really hard to take better care of myself. Made myself have three meals and take my supplements yesterday and have forced myself to eat some porridge and take my supplements again this morning. I know I was so much better when I was dieting and exercising and I need to get back there if I can.

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ArthurPewty · 05/03/2013 10:29

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moosemama · 05/03/2013 10:35

Thanks Leonie.

Just remembered, everything was limited to my left side last night - whereas the one I mentioned last week, when dh and got me to grip his hand, was bilateral, both hands/arms and feet/calves.

I felt much worse in the morning after last week's than I did this morning.

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MerryCouthyMows · 05/03/2013 10:43

Will think about your posts and post later - off to the GP about MY seizures now!!

ArthurPewty · 05/03/2013 10:45

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moosemama · 05/03/2013 10:59

Good luck Couthy. x

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MerryCouthyMows · 05/03/2013 11:34

Ugh. GP is going to talk to a Neuro I've never seen, to ask about the possibility of prescribing Frisium for the week before my period and whenever I'm going to have invasive medical treatments.

I also have to get a letter from the consultant that witnessed my seizures after my aborted colposcopy.

He wants written witness statements from my Ex and my DD too.

Yet more bloody paperwork. He's upped my dose of Gabapentin back to what it was 3 years ago too, 1200mg/day. Apparently I can go up to 3600mg/day.

The tablets are 300mg each. That's currently 4 a day now. 3600mg/day would be 12 pills a fecking day, unless they come in a higher dose pill. I hope they bloody do!

I already rattle with the painkillers for my arthritis, without taking that many pills for my epilepsy.

moosemama · 05/03/2013 11:46

What does he want witness statements for Couthy? I can understand it being a good idea to contact another medical professional who saw you having seizures, but you shouldn't have to get witness statements from your family to confirm you are having them ffs.

Surely he should contact the neuro that actually has your notes and history to discuss prescribing a drug for you. [confusing]

How do you feel after that? No re-referall then?

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ArthurPewty · 05/03/2013 13:38

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ArthurPewty · 05/03/2013 13:41

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moosemama · 05/03/2013 13:58

Just re-read my post. Should have waited and posted when I had more time, sorry if it came across a bit blunt. Blush

Didn't manage to say am Angry for you. I'm so sick of 'general' practitioners acting like they know enough specialist info about anything to not need to refer patients to individual specialists.

Surely GPs should be for front line contact and minor health complaints - for anything else, there are specialists for a reason. Angry

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MerryCouthyMows · 05/03/2013 17:10

No epilepsy specialist Neuro in my whole PCT and PCT won't pay for me to go to London (next closest place with an epilepsy specialist Neuro) any more. Local Neuro's are crap, know shit all about epilepsy to be frank, and have the bedside manner of Attila the Hun.

Last time I saw one here, he reduced me to a sobbing mess and made my ex, the least likely person to notice shit like that, go to punch him... (He didn't, but only cos I held him back!)

I won't see the local ones.

GP is helping me fight the PCT's decision not to let me see an epilepsy specialist Neuro out of PCT, but in the meantime, he phones a Neuro mate in London to discuss my case, off the record.

So it's not the GP being shit, he wants these witness statements to shove up the PCT's noses to try to get them to let me see someone who actually knows their arse from their elbow!

He IS trying his best!

MerryCouthyMows · 05/03/2013 17:12

Leonie - I currently take a Pfizer version, Neurontin, and my capsules are 300mg each?!

MerryCouthyMows · 05/03/2013 17:14

He just doesn't want to prescribe me something he shouldn't, IYSWIM.

ArthurPewty · 05/03/2013 17:17

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moosemama · 05/03/2013 18:00

Ah - well, in that case he is forgiven and my anger is redirected at your PCT.

Leonie, sounds promising. Sorry I've forgotten, are you likely to stay on that dose or will it be increased gradually?

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ArthurPewty · 05/03/2013 18:01

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ArthurPewty · 05/03/2013 18:05

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ArthurPewty · 05/03/2013 18:05

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MerryCouthyMows · 06/03/2013 00:01

I'm on the yellow 300mg ones. I'm glad that there are higher dose ones though - I had visions of eating pills instead of meals! Grin