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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

MerryCouthyMows Sun 03-Feb-13 19:37:41

Riiiight. So the foot pain is related to my Fibro. Funny enough, didn't have it when I was dxd with Fibro, but it has come on since. Nobody told me about it. hmm

ArthurPewty Sun 03-Feb-13 20:58:37

i have felt quite unwell this evening. Really "off" in the head.

This is my third ngiht in a row of sleep deprivation.

I think perhaps whenever i get the appointment rescheduled for, i must deprive myself somewhat for several days in a row preceeding the night i end up staying awake all night, in order to make it a successful test.

There's no way i can do that on my husband's 40th birthday/RND though, so i hope they'll let me reschedule it.

ArthurPewty Sun 03-Feb-13 20:59:48

i've taken the clonazepam every night for 7+ years, so it will be difficult to "quit" it for one night - i will get withdrawal sx :/

ArthurPewty Mon 04-Feb-13 09:47:26

it would help if i could READ!!!!!! jesus H christ.

sleep deprived EEG is 15 FEB, not 15 March.

So, its next friday. i CAN attend that, there's nothing stopping me.

Blimey. Between bladder cam thursday and this next friday...

And they said take my pills like normal (though if they make me sleepy, how can i???) and then stay up all night. JOY.

EEG and MRi are really soon - christ. wow. i'm stunned. If the reg thought i was a pill munching hypochondriac, why so soon? What's the rush??

NoHaudinMaWheest Mon 04-Feb-13 11:37:43

Possibly because the consultant doesn't agree with the reg?

ArthurPewty Mon 04-Feb-13 12:01:23

I hope so.

ArthurPewty Mon 04-Feb-13 16:29:01

well that was interesting. Chiro says neck is largely fascial / soft tissue pain, the fascia and scarring pulling on the spinal cord along with arthritis, and is "significantly more than just wear and tear" and he was quite facepalmy when i told him what was said. lol

He said the l'hermittes is only on neck flexion (chin on chest) and only if i do it with some force, so that's good (from his POV) - we couldnt create it by having me tip my head backwards, only forwards. We could make it better when he braced the facet joints on both sides, so its something mechanical.

Said the bilateral brisk reflexes were good from his POV because it was bilateral - if there was weakness on one side he'd be concerned. And my posture is crap.

He said we could make a dent in it, no need to keep living like this, start on 25th Feb. And he said we probably didnt need another neck MRI just yet, we still had my records from 7 yrs ago and basically he'd expect the MRI to be worse, but not in a dramatic way.

So ppppbbbttttttt to the reg. so much for "just" wear and tear...

ArthurPewty Tue 05-Feb-13 10:33:50

and today I feel maybe they were right and I'm wasting everyone's time. sad maybe some of what I've experienced IS anxiety and stress, and not my brain after all.

waiting for that consultant call. expecting it while I'm sewing viking purses w y4 later, ugh.

moosemama Tue 05-Feb-13 10:51:38

Don't start doubting yourself now Leonie. You are not wasting anyone's time. Even if your tests do come back clear, it's important that you are properly checked out and on their radar.

I remember saying to my neuro that I felt like I was wasting everyone's time and she said absolutely not, it's vital that people get these sorts of symptoms checked out.

If the tests come back clear, it's good news - in that either you aren't having seizures or the ones you are having aren't causing any physical damage - but - they can't possibly know unless they run the tests and investigate properly.

I hate how we are all so nervous around doctors, I am just the same. Thing is, they are just people and it's their job ffs, they are there to either dx or eliminate and without us they'd all be on Jobseekers!

ArthurPewty Tue 05-Feb-13 10:55:43

you're right of course. I just wonder what my husband and my friends a will say when all the testers come back clear and I'm pronounced 'anxious'...

ArthurPewty Tue 05-Feb-13 10:56:51

tests! damn auto correct

moosemama Tue 05-Feb-13 11:00:27

Somehow managed to miss your post from yesterday.

Sounds like the outcome of the chiro appointment was positive. Reassuring on the l'hermittes and reflexes and glad he feels he can improve it for you.

Best thing I've found for improving posture is floor abdominal exercises, but making sure you exercise the whole core, so abdo, flexors, sides and back. My posture was fab when I was shredding and for the first time ever I found standing comfortable and effortless. I really miss it since I did my foot in - I am more of a slumped marshmallow these days and growing bigger by the day with excess chocolate consumption from feeling p'd off with - well just about everything at the moment. sad

With your bladder stuff getting sorted, neuro tests and chiro sorting your neck out, you're on your way Leonie, you're going to be a new woman by the summer. grin

ArthurPewty Tue 05-Feb-13 11:07:17

yeah, the chiro was awesome. really brilliant guy. seemed very kind and helpful, and yeah, fixing my bowel, my bladder and my neck would make a huge, huge improvement in my life. he also thinks a lot of the heads aches are referred pain so if we can get a grip on that, it will help stop it going all the way to migraine, which is good too. axappp cash back plan pays for half of it, too.

in sept both kids will be in school full time and the midday school runs will stop, and I'd like to volunteer w the local PP and other Sen groups etc, but if I can't count on my body, its hard to promise my services, kwim?

moosemama Tue 05-Feb-13 11:08:37

Cross posted.

They can't pronounce you as anxious, they are not psychs. All they can do is tell you the tests came back clear and there is no sign of any damage at the current time.

My neuro told me that the lesions were there, but as there were none that were 'active', my symptoms had settled down and the LP, VEPs and SEPs were clear there was nothing more she could do, but that they wanted to keep monitoring me. At that point I was reduced from 6 monthly to annual reviews and within 6 weeks I had a seizure! grin To be fair, I had only been having very low grade symptoms for the best part of a year when she said all that.

She did piss me off by suggesting I handle things by just tell people it's something like ME or Fibro until such time as further evidence emerges - frankly I thought that was an appalling thing to say, especially as she went on to state that neuros don't believe in either illness. angry BUT having calmed down and discussed it with dh, who was there at the time, we think she was trying to say that she does feel there's something going on, doesn't want to just dismiss me, but equally doesn't have a clue what the problem is. At no point did she suggest it was probably anxiety based or psychological in any way and I don't think your consultant will either - it's generally just arrogant Registrars (and GPs) that spout that sort of crap.

moosemama Tue 05-Feb-13 11:20:31

I am the same. Dd starts full time Reception in September and much as I love having her home with me for half of every day and will miss her like crazy when she's gone all day, I can't wait to drop that midday school run.

It's going to be a big change for me in September what with her starting school and ds1 (hopefully) going of to the indie school. He will most likely be out from between 7.30/8.00 am until 5.00 pm and although it will be great to spend some quality time with the other two, it's going to feel really strange and I will miss him so much. In fact I've just teared up just thinking about it. I am so worried about how he's going to cope with the long hours and travelling, but we are between a rock and a hard place, because there is just nowhere else - not one bloody school that can properly meet his needs.

I have been trying to work out what I'm going to do. Thought about studying from home, but can't find anything I want to study - although I did consider dietetics - and if my brain is this foggy I can't see me being up to it. Realistically, I need to start bringing some money into the home, but it would have to be something home-based and be flexible enough to handle days when I am not up to working. We were considering starting to market dh's design work online as cards and prints, but he would need to have the time to set up the website and he's already pushed to the limit making up for my uselessness and working full time in a new job.

ArthurPewty Tue 05-Feb-13 12:58:26

kids are pretty resilient. I travelled 90 minutes each direction from 11y to 18y going to school. I got up at 6, to get the bus at 6.30, to get too school for 8. I got put at 2.20, got the bus and got home at 4. and that included a bus change in each direction, too. I slept, did homework, chatted and listened to a lot of music.

I love dd2, but I will be grateful to god when sept is here.

I had a funny eyes / dizzy spell today, so the changes I've made haven't changed anything, it's still there', and its still different to a panic attack. I am finding it very hard not to worry/doubt though.

no phone call yet.

moosemama Tue 05-Feb-13 13:36:01

I know a lot of children could cope with it, I'm just not sure ds1 can. Such a lot of his time after school is spent de-stressing and he finds travel stressful.

The LS manager person at 'the indie' said that some children do find it hard, but others strike up close friendships with other children on the same transport and therefore it's useful for social skills practise and developing friendships. I really hope this turns out to be the case for my ds.

Unfortunately the HT also said they have endless problems with the transport provided by our LEA, as they choose the cheapest - and therefore least reliable - taxi firm. That give me all sorts of worries about the quality of chaperones, chaotic pick-up times (hence stressing ds out) and generally just the safety/security of the whole process.

Of course all this is jumping the gun, because the deadline for naming isn't until the 15th and we could still be facing a crappy in-area placement that we will have to fight.

Re the phonecall, whenever I've been called by a consultant, it's tended to be later on towards the evening, when consultations have finished - usually around 5.00-5.30 ish.

ArthurPewty Tue 05-Feb-13 16:12:14

oh, i know what you mean - i didnt mean to be flippant. DD1 would struggle too. DD2 would be fine. Funny, they're so different, even with the same dx.

You could be right re the consultant. Not a sausage yet. Viking purses were very cool, though! great fun.

moosemama Tue 05-Feb-13 16:38:47

Very impressed at Viking purse making.

Ours went for making the conventional daft Viking hats - despite the fact they'd just taught them that Vikings didn't actually wear them. hmm

Fingers crossed you get that call soon.

ArthurPewty Tue 05-Feb-13 16:49:10

lmao - yeah, most of Y4 turned up on friday last week with horned viking hats, despite knowing the Vikings actually didnt wear them. haha

DD1 is actually quite adept at sewing. impressed, yes.

moosemama Tue 05-Feb-13 17:09:45

I'm very impressed. Both my boys struggle with anything fine motor related - I thank my stars we've only been faced with school related sewing once (ds1) and the teacher caught on very quickly that ds was never going to be able to do it himself.

ArthurPewty Tue 05-Feb-13 18:10:22

she can't ride a bike, swim, or jump rope, but she can sew like a nine year old...

bah, no call.

ArthurPewty Wed 06-Feb-13 18:31:58

cracking myself tonight. ga tomorrow for cystoscopy, urodynamics next weds, sleep deprived eeg next Friday and MRI 2 march.

really, really sure I'll be sent home w blood pressure too high for ga... my bp was v high at the registrar's, 170/100. I have a tendency to white coat htn anyway and I'm totally shitting myself over this. bet I get sent home...

moosemama Wed 06-Feb-13 18:37:51

Calm down, you will be sent home with high blood pressure if you keep on like this.

What do you like to do to relax? Can you get dh to have the girls while you have a long bubble bath or something? Watch a movie? Play a computer game? Anything to keep your mind off it all.

Good luck for tomorrow. I'll be thinking about you and sending positive vibes.

ArthurPewty Wed 06-Feb-13 19:27:51

Done the bubble bath, oh yes. Aaah. Too much going on at once to make sense of it all.

Really enjoyed Y4's coffee morning this morning. We adults got our asses kicked at the quiz about Vikings, lmao. The kids trashed us. The tea and cookies were fab. DD1 cried, but hey, she usually does.

ASD support mtg this afternoon was very good. got to let off some steam, and know that its not just me, other people are living with similar goings-on at home... theraputic.

I really can't wait til this stuff is over with. i've never seen the NHS move so quickly tbh. 1 week wait for cystoscopy, 2 week wait for urodynamics? And yet it took me 2 months to see a neurologist?

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