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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

OP posts:
ArthurPewty · 10/12/2012 18:14

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ArthurPewty · 10/12/2012 18:16

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CouthyMowEatingBraiiiiinz · 10/12/2012 18:42

Include it. It can be a sign of nocturnal seizures.

ArthurPewty · 10/12/2012 18:47

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CouthyMowEatingBraiiiiinz · 10/12/2012 18:51

There is a high chance that even if you are on a lower dose of clona-whatsit (useless with medicine names, but I know it is used for epilepsy) than they would usually give for seizures, that it might be helping to keep your bigger seizures 'in check'.

I hate this time of year, I always have far more seizures in November/December time because of sheer busyness due to school things and consultants trying to fit in 1001 appointments before Christmas etc, but when I have to stop, I have to stop.

I will stop anyway either way, because if I don't stop and rest, I'll have a bigger seizure and be out of action for longer than if I had just rested in the first place!

It's a massive life adjustment, and it takes a lot of getting used to, but it is the one thing I have found that helps.

I sometimes send their Dad's to school plays at this time of year, if I am getting seizure warnings.

This year, for the first time, both my DS's are doing the same Carol concert, which means I only have one to attend. I used to have 2/3!

I feel like I haven't stopped for 6 weeks already, because DS2's birthday was right at the end of November.

I'm having to build rest days into my week now, on Thursday DS3 is going to my friend's house during the day while the others are at school, so that I can sleep.

Then next week, my ex is off on Tuesday & Thursday. Tuesday I will wrap presents and Thursday I will sleep!

I have HAD to start doing this to try to rest at some point each week.

CouthyMowEatingBraiiiiinz · 10/12/2012 18:53

And who gives a stuff if they think you are neurotic by having a list of symptoms? It's to help YOU to remember everything!

madwomanintheattic · 10/12/2012 18:58

Has anyone seen moose about over the weekend?? Am a wee bitty fretty about her dd....

ArthurPewty · 10/12/2012 19:06

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ArthurPewty · 10/12/2012 19:06

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ArthurPewty · 10/12/2012 19:06

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CouthyMowEatingBraiiiiinz · 10/12/2012 19:12

I have hardly been on MN this week tbh.

I know what you mean about the pills. I unfortunately HAVE gained two stone since going back on them in February. In fact, I gained the two stone within 8 weeks of going back on them. Angry

I was off them for about 6 months before I fell pregnant, while I was pregnant and while I was bf, but as soon as my periods restarted, the seizures came back.

I'd still rather be two stone too heavy than have the raging stupid though, I know exactly what you mean! Epilim was awful for that, I think I lost 50 IQ points overnight when I started taking them, and regained them within a week of finally swapping to Gabapentin!

CouthyMowEatingBraiiiiinz · 10/12/2012 19:16

The back teeth too! I hadn't had a filling until they put me on Tegretol. 3 months later my back teeth were shot to bits!

And then there's the Topamax that left me with no peripheral vision, permenantly, AND sent me insane - gave me symptoms of bipolar that went as soon as it was out of my system...

Epilepsy pills are horrible, the only one that I cope with is Gabapentin, in mahoosive doses, but I have to put up with getting fat!

ArthurPewty · 10/12/2012 19:22

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moosemama · 10/12/2012 19:48

Madwoman so sorry to worry you. All is OK in the house of Moose, just manic with pre-Christmas ridiculousness and decorating.

Dd continued spiking a 40 degree temp every night until last night, but was bizarrely fine during the daytime and her breathing has also been fine in between temperatures, so I think it was her heart racing that was making it sound odd on the first night. She seems to be coming down with yet another cold today and I have no clue if that's related or something new. Hmm

Dh, myself and my parents threw everything we could at decorating dd's bedroom over the weekend (she's 4 in January and still in a cotbed in our room. Blush It meant dh and I sleeping in the living room, while dd had a campbed in the boys' room so that we could shift all the stuff from her room into ours temporarily. Bought the last few bits from Dunelm this afternoon (over your way actually Leonie Smile) and just need to paint her bed and put it all together now.

I am completely knackered now though and can't stand on my bad foot at all, so tomorrow is going to be a rest day - calm before the storm before we visit the indie school in the morning and have the mega LEA/Inclusion/EP/SENCO/HT/Legal Advocate meeting at the school in the afternoon on Wednesday.

After all that unpleasantness though we have dd's first nativity on Thursday, so at least I have something to look forward to.

Found out today that my boys have voted me in for baking and decorating christmas cakes for their school parties next week. Apparently all their friends asked them to put me down for cakes because they love my baking, which is lovely, but I really could do without it. I think I have shot myself in the foot by setting the bar too high on previous years - I just don't have the strength (or hand stability) for cake decorating these days.

On a more cheerful note, I had two lovely MN Secret Santa deliveries over the weekend and was really lovely and gave me a real lift. Smile

All this talk of horrible drug side-effects is giving me the wobbles. I have been on Topomax in the past and like Couthy, I was on another planet while I was on them - in fact very similar symptoms to one of my bad neuro episodes, even on the lowest dose. The only plus-side was the weightloss. I seriously don't need anything that's going to make me gain weight. I have put almost two stone back on this year, after losing four last year and I'm really low about the way I look at the moment. My plan is to start logging my intake on My Fitness Pal and starting to build up my exercise in January.

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madwomanintheattic · 10/12/2012 20:03

Oh, bless you. Glad it was just busy! (I know we've both been through 'chest is fine' stuff before, lol, followed by disaster)

How exciting for dd!

Will see you on the nt thread in Jan - the New One. (You can start it ;-) )

moosemama · 10/12/2012 20:10

Oh no! That means I have to think of a new title! I will try and make it something easily identifiable.

Have a good Christmas if I don't see you around before. Xmas Smile

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ArthurPewty · 10/12/2012 20:24

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CouthyMowEatingBraiiiiinz · 10/12/2012 20:35

I'm at

I was two stone lighter and had clothes that fitted me in February...

CouthyMowEatingBraiiiiinz · 10/12/2012 20:36

GP wants to raise my dose of Gaba again from 900mg/day to 1200mg per day, but I'm stalking as I don't want to gain any more weight!

CouthyMowEatingBraiiiiinz · 10/12/2012 20:37

Stalking?! I'm not a stalky weirdo, honest! Just and average weirdo...Grin

That was meant to say stalling.

I give up. Autocorrect hates me.

CouthyMowEatingBraiiiiinz · 10/12/2012 20:40

An. Not and. See, Autocorrect does have it in for me.

I'm getting early seizure warnings tonight - I keep mispronouncing words and sounding like a video on rewind. Or a twat. Either is possible! Grin

I think a hot water bottle and an early night will be in order for me tonight! Busy day tomorrow. Will just have to hope DS3 is compliant enough to go to sleep at a reasonable time tonight.

moosemama · 10/12/2012 20:44

I thought it might be Leonie, I thought of you while I was there - we could have met up for a coffee! Grin

This time last year I was 10 stone 12 ish and heading downward from a size 12 towards a 10 after dieting and shredding my backside off - literally. I started out at just under 15 stone in June. It was blooming hard work, but I enjoyed it and was so proud of the results.

I had a lumbar puncture the day before New Years eve which laid me out for the next 10 days with back pain and the lovely LP headaches and precipitated a horrible relapse. Fought my way back into exercise until the end of March, when I got to my lowest weight since my early twenties (10 9ish) but really couldn't hack it and pretty much gave in at that point and it's been downhill (and up-scales) ever since. Sad

I am now over 12 stone and don't have any muscles left. My knee boots won't zip up and I look like the Michelin man in my warm coat. My lovely size 12 skinny jeans that I was so proud of at the end of last year are now horribly tight and today I tried on my size 14 smart trousers ready for my meeting on Wednesday and they look awful - far too tight around the hips and thighs. Blush Sad

Couthy, I didn't know Gabapentin could cause weightgain. It's what was mooted to me for my CRPS and was also mentioned when they were going the MS route with my neuro symptoms.

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cheekkatb · 10/12/2012 20:48

Interesting to read about side effects to the various effects of anticonvulsant drugs. Tegretol made me away with the fairies. I gained a lot of weight on sodium valproate and it didn't control the seizures. I came off meds to have children. A decade later, seizure frequency increased so was put on lamotrigine. Seizures stopped, more weight gain and trouble with sores in the mouth and gum problems. Also find words jumbled up a lot when I speak.

ArthurPewty · 10/12/2012 21:02

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ArthurPewty · 10/12/2012 21:02

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