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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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mariammama · 27/12/2012 13:55

Waiting till Feb-Mar clearly bad. Locum perhaps good.

In my experience, locum consultants can be really good; they're usually relatively young and up-to-date. They're also keen to make their mark so they get offered a permanent post. Hopefully yours will have just finished his/her many years of specialist training at the big teaching hospitals, and maybe done some research too.

mariammama · 27/12/2012 14:02

Your mission at the first appointment is either a spot-on, instant diagnosis.... Or to make them think your illness is an interesting puzzle Xmas Wink. Dr Locum-Career-Advancement needs to figure out for themself be spoonfed realise that pursuing this could change your life, be intellectually satisfying and make their colleagues gasp with admiration.

ArthurPewty · 27/12/2012 14:21

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ArthurPewty · 27/12/2012 17:21

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ArthurPewty · 28/12/2012 08:13

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mariammama · 28/12/2012 09:41

Leonie, I didn't mean diagnose something instead of epilepsy, I meant figure out which fancy subtype... Yy to finding the right set of meds ASAP. Once the initial referral is received, it can be upgraded to urgent if the consultant thinks necessary.

Secretary's fax number in hand, go to GP, get him to send a begging note asking "for rapid appointment / immediate advice please" with a list of the scary symptoms that are getting worse.

ArthurPewty · 28/12/2012 10:08

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ArthurPewty · 28/12/2012 10:08

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moosemama · 28/12/2012 12:51

Hi,

Leonie, so sorry things seem to be deteriorating for you and that they are still keeping you waiting. I wonder if you could request a choose and book at Heartlands - they have two neuro consultants that I know of and I'm pretty sure there are more.

Sorry I've been awol. Been down with a bug across Christmas and then had several odd and scary episodes in the middle of the night last night.

EEG on Monday lunch time and just realised I have managed to book my MRI at school pick up time on dd's birthday - doh! I'm still going to go though. Dh is booking the afternoon off, so he can collect her from Nursery and start off the Birthday celebrations, while my Mum takes me and brings me back.

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TheLightPassenger · 28/12/2012 15:24

agree with Mariamma re:locums and re:going back to GP to explain you feel seizures being more frequent/worsening.

Moose - sorry you have been poorly, glad to hear you are getting tests done soon.

ArthurPewty · 28/12/2012 17:32

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moosemama · 28/12/2012 19:15

Yes ok thanks Leonie, but very tired - much like I was after the first seizures a month ago and still have 'buzzy' hands and feet and an odd 'electric' feeing pretty much all over though.

Can't really explain what happened, it's all a bit of a blur really. Thought I was having a panic attack at first, as I used to have nocturnal panic attacks years ago, but quickly realised it wasn't that. This was more like several episodes, each one happening as I woke with a start. I vaguely remember something odd going on with my eyes, but can't articulate it properly. Dh was there obviously, but assumed it was a panic attack and didn't quite grasp what was happening whilst in his half-awake state.

Have had an annoying twitch in my left eyelid since Christmas day as well, which seems much worse today.

I was half expecting something to happen, as have sort of felt it building up again over the past week or so. Again, hard to explain, but I can definitely sense something going on, then get several odd neuro-type feelings and then the main event, as it were.

Hi TLP, hope you had a good Christmas.

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ArthurPewty · 28/12/2012 19:38

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moosemama · 28/12/2012 20:54

Yes, I was in a deep sleep, then suddenly woke up feeling disorientated and panicked, but no shortness of breath, tight chest, heart racing etc. No gradual build up, just wallop.

It was pretty dark and the best way I can describe the eye thing was that my eyelids were kind of fluttering and the oddest thing was that I think there was some sort of flashing light involved, but instead of being able to actually see it, like when I used to get migraines, it felt like the light was actually inside my head, kind of behind my eyes.

I think it happened roughly 4-6 times over about an hour. Then I was so exhausted I fell into a deep sleep until almost lunch time.

I look terrible today - big black circles under my eyes and white as a sheet.

Poor old dh was quite freaked out by it. He's been really over-protective of me today - even told the ds's they couldn't go on the Wii because of the flashing! Hmm I put him straight on that and then regretted it as they had an hour long fight over what to play - doh!

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ArthurPewty · 28/12/2012 21:00

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ArthurPewty · 28/12/2012 21:22

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moosemama · 29/12/2012 00:04

Ah, thanks Leonie, but I think you should be resting yourself rather than offering to take care of my lot!

Dh is doing a grand job at the moment and is off until the middle of next week, so I'm ok. I have a family get together an hour away tomorrow that I can't get out of, but will just plonk myself in a chair and dh will wait on me.

Interesting you should mention what time of the month etc, as last time my period started two days after the seizure - which was 10 days earlier than my normal cycle and my period started early again this month - this week. So there could well be some hormonal connection, I'm guessing.

I noticed one of there's a Seizure diary app now - although no use to me, as my mobile is ancient and most definitely not a smartphone.

I know I should be diarying it all, but it just seems like one more job to do every day. I'm think I', going to have to look back on here at various threads and cut and paste it all together somehow, then go from there.

I'm still up because I'm dreading going to bed tonight. I know the tiredness will make things worse though so will go in a minute.

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ArthurPewty · 29/12/2012 08:15

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ArthurPewty · 29/12/2012 08:16

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moosemama · 29/12/2012 10:56

Hormones could be a red herring though Leonie, because both weeks I have been beyond exhausted and had several nights with little or no sleep preceeding it. The first was before my period started and then my period started early, this weeks were on day 5 of my period, so circumstances weren't identical.

We use Evernote as well. We find it's useful for keeping each other informed and up to date with stuff - and it really helped when MIL couldn't remember which version of the Christmas present she'd bought should go to which ds the other day - dh just looked it up on Evernote on his phone and a Christmas crisis was averted. Grin

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ArthurPewty · 29/12/2012 11:06

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ArthurPewty · 29/12/2012 11:09

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MerryCouthyMows · 29/12/2012 14:56

Sorry I vanished - My App isn't working, so I've had to get the laptop sorted out.

Definitely sounds like nocturnal partials to me. I tried to post on here a while back, asking Leonie what the name of the fb group is, and I wouldn't mind knowing where that seizure diary thing is, and if there's an App for that!

I am going to be pushing for a Neuro visit / MRI scan / EEG in the New Year too, as my seizures are increasing.

I definitely have a hormonal element to my seizures - the day before my period starts I am useless, as I have seizures of all different types, all day long. And I'm useless the next day too, as I am so exhausted.

Christmas hasn't helped, and all the running around I have to do at this time of the year, what with DS2's birthday at the end of November, then Christmas and New Year, and then DS3's birthday at the end of January.

Add in all the stuff going on at school before Christmas, plus consultants appointments for all 4 DC's throughout December and January (got two separate visits to Addenbrookes coming up mid-Jan, one for DS2 and one for DD, plus DD's 'big' appointment with the cardiac specialist at the Royal Brompton too, AND chasing up SALT, Physio & OT appointments for DS2, AND chasing up DS2's appointment at the Evelina. Oh, and dietician appointment.

I dont want it to be January - I seem to have appointments practically every day!!

I just need to be on anti-convulsants that control ALL my seizures, not just the drop attacks / atonic seizures.

ArthurPewty · 29/12/2012 16:26

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ArthurPewty · 30/12/2012 10:45

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