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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

moosemama Mon 26-Nov-12 14:22:25

Thank you - thought I was just being a wimp. blush

I currently have all 3 dcs snuggled up in duvets and pillows on the living room floor with me under mine on the sofa. We are watching the second Alvin and the Chipmunks film and ds1 is finally smiling after the mother of all meltdowns because I wouldn't let him have lunch. He always does this, throws up for hours on end, then begs me to feed him and if I give in, duly throws up again.

ArthurPewty Mon 26-Nov-12 16:56:19

sorry Moose for a hijack, but can i ask Couthy a question?

Couthy: is physical exhaustion a trigger? I mean "tiredness" or "sleepiness" or "sleep deprivation" are all published triggers, but what about being physically exhausted?

I've been keeping a log of weirdnesses since 11 Aug, daily, and i'm coming up with a modicum of pattern-ness - and being physically tired is as big a trigger for me as being sleep deprived... my period is a mild trigger - first half of my cycle there's 2x as many incidents as the second half...

Thanks.

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 19:39:27

Physical exhaustion definitely does it for me. Which is a bit of a bugger as I have Fibromyalgia too, and obviously get physically exhausted doing normal, everyday tasks! Even going food shopping can be a trigger.

Going to town always triggers a seizure for me, I've only been seven times this whole year. I'm dreading it because I have to schedule in a day to go Christmas shopping AND the next day to recover from the inevitable seizure. I am struggling to find two days together.

Which isn't going to help, as I will end up sleeping off a seizure the following day whether I schedule it in or not...

I also have issues to do with my cycle, with me it usually coincides with the start of AF, that my seizures get worse.

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 19:40:41

I have to be careful not to overdo exercising too. Stopped going to the gym 8 years ago. And have subsequently got an additional 2 stone that I can't shift through diet alone.

ArthurPewty Mon 26-Nov-12 19:54:19

I have FM, underactive thyroid, myofascial pain syndrome in my neck, and this "mental" problem, whatever it is. It's undiagnosed on the NHS, anyway. 15 years ago in the US it was epilepsy... the "see how you get on for the next month" and "do you really want to go down the road of the meds merry go round again?" and "can you live with it?"

I find i'll have trouble the day after i over-do it.

ArthurPewty Mon 26-Nov-12 19:55:26

(the quotes are from my GP back in September when i went to her, with the old EEG and MRI results in hand)

moosemama Mon 26-Nov-12 20:33:26

Leonie, ignore your GP, they are getting bonuses for not referring. Insist on a referral for yourself in the same way you would for your dds.

I know I'm a fine one to talk, but with definitive evidence in the form of previous EEG and MRIs you should have been put under a specialist as soon as you registered over here.

I do know how hard it is. You just get fed up of no-one listening and taking your seriously.

I was kept waiting in AMU for 6 and a half hours yesterday, for most of it there was no doctor on the ward because he was up on his 'favourite' ward instead (I was in the observation bay by the nurse's station, so was privy to the nurses' conversations).

In the end I only got seen when I accidentally lay on the nurse call button and mentioned to her that I was going to have to discharge myself as I have a child with ASD whose whole week was going to be messed up if I couldn't get home in time for him to sleep at our house instead of my parents. I was really polite, in fact I got a bit tearful and explained how worried I was about ds, that I had promised to be back from our weekend away hours ago and that, as the seizures were almost 24 hours before by this point, I knew they would only discharge me anyway, so in terms of the effect it would have on both his and my weeks it wasn't worth me hanging around to be rubber stamped. At that point the registrar who had been sitting at the computer opposite me the whole time suddenly decided she had time to see me. hmm To be fair, she was on her own, as the other one had buggered off with the supervising doc and she was very thorough when she did take a history and examine me - but every single other person, including people that came in after me had been seen and either discharged or moved and she had had time to eat sweets and chat with the nurses and ambulance drivers.

I wouldn't have minded so much if I'd decided to go to A&E and demanded to be seen, but I actually called my OOHGP, who told me to go straight to A&E, I refused and begged them to see me but they were adamant, went to A&E, they assessed me and insisted I was taken to the AMU. I didn't see one doctor between 1.00 pm and 8.10 pm. angry (The nurses were lovely though.)

ArthurPewty Mon 26-Nov-12 20:38:40

Well, i dont understand why i wasnt sent to a consultant when i got here tbh! That was 12 1/2 years ago...

Yeah - the GP was very reluctant despite my showing her the old EEG, old MRI and a very detailed description of what i've been experiencing...

I do need to go in guns blazing, i guess. By god i'll move heaven and earth for my kids, so why is it so hard to make my guns blaze for myself??

ArthurPewty Mon 26-Nov-12 20:40:56

Yeah, i do get fed up of being told its "just" anxiety or all in my head. I get fed up of the fob-offery, and i guess i feel like I can just wait cos i've been so busy sorting the girls' educations out - though that free bus pass is tempting me ...

Yeah, its in my head, irregular electrical activity that doesn't even cause any muscles to move, just makes me feel weird as hell.

moosemama Mon 26-Nov-12 20:50:38

That's what I thought Leonie. It definitely should have happened when you first registered. You should have had a health check at your GP's, they should have taken a thorough history, discussed previous specialist care and treatment and come up with a care plan, including referrals based on that.

You shouldn't have to go in all gun's blazing, but the truth is you will probably have to. They will be of the 'well you've survived this long without a referral' opinion and will be thinking they can palm you off.

Or could you change surgeries at all? Just thinking, a better surgery should do all the health-check and history stuff again and this time you should get the referral whilst they stand aghast at the other clinic's ineptitude.

I am exactly the same, I can do whatever it takes for my ds's - eg me calling the school to complain (again) on Friday when I had just been in floods of tears through fear of doing it, but if it's for me I just can't do it.

Take someone with you for moral support - preferably someone who will be able to prompt you and say things like 'didn't you say X' and 'weren't you going to say about Y' to make sure you actually do it.

I was going to call and ask for an appointment to discuss the whole reactive hypo angle with a GP this afternoon. Promised dh over the phone at lunchtime I'd do it, then talked myself out of it within half an hour of coming off the phone. blush

Thing is my MIL was in denial about her epilepsy for years and I was her worst critic - that blooming karma gets me on the backside every time!

ArthurPewty Mon 26-Nov-12 21:26:56

well this surgery did ask me if i wanted an epilepsy review, and I booked that appointment in Sept with the GP as an epilepsy review (20 min appt), which is again why i am floored nothing was done!

I keep talking myself out of calling - i dont know why sad

karma's a nasty bitch. for realsies. was MIL unconscio

ArthurPewty Mon 26-Nov-12 21:27:07

us or just like me, all in the head?

ArthurPewty Mon 26-Nov-12 21:28:14

(fingers hit post too soon argh sorry)

moosemama Mon 26-Nov-12 22:00:07

MIL was having freezing episodes that went on for a few minutes at a time. She was literally like a statue. FIL then told us that she'd had them for years, but they'd been getting longer and she'd refused to go to the GP. She was still driving as well. angry

Then she had one in the middle of a family party, froze for several minutes, just like a statue, mid-sentence and was completely unaware. Dh was with her, gave her a talking to, pointed out how she could kill someone if it happened while she was driving etc and insisted she went to the GP. So she finally agreed to go.

She was referred and put on meds, but refused to accept the dx, said she thought the consultant was an idiot and wouldn't take them. Then completely out of the blue she had a major tonic clonic, was out for a very long time, fitting in the ambulance all the way to hospital - really bad. Poor old FIL - very dependent, has AS and is not at all the adult in the relationship, was terrified.

They gave her different meds and again she refused to take them, but eventually gave in. Then she hated the meds because they made her feel slow and ill, so she stopped them again. Then she had another seizure and was referred, coincidentally to my neuro, who she decided she trusted. She was given new meds and has been seizure free on meds that agree with her for over a year now. In fact I think she is just about to be allowed to drive again.

So, I'm not quite that bad. blush grin

I am exactly the same for talking myself out of booking appointments. I don't have a clue why either. confused

ArthurPewty Mon 26-Nov-12 22:08:23

Ridiculous isnt it? We must buck up...

I was taking lessons but felt unsafe so I sold the car, cancelled the ins and quit lessons back in January...

Could still use that bus pass - mainly walk everywhere, which adds to the tiredness.

Enough about me, need to keep tabs on you, this is your thread. Xx

moosemama Mon 26-Nov-12 22:38:25

No, this thread is about advice re epilepsy, which you are just as much in need of as I am. You keep up the dialogue, I know how much it helps to talk these things out and get them straight in your head and I would really like for you to get seen and sorted as much as I want my own issues addressed. smile

I am ok. Still very unsure how I feel about it all at the moment, but hey ho - life goes on I suppose.

I was supposed to start driving lessons back in September, before my episodes returned, then I got the CRPS in my foot so moved the lessons to January and seems now I will have to cancel those. Not sure what that means for getting ds1 to and from secondary school come next September. <sigh>

On a more positive note, nobody has thrown up in my house since 2.00 am this morning - so that's something to celebrate! grin

Off to bed now x

mariammama Mon 26-Nov-12 23:41:20

I think I have epilepsy, these funny turns seem like fits. I asked the dvla can I still drive and they said not really, unless a consultant confirms it's not actually real epilepsy. Sorry dr, please can you send me back to the neurologist wink

mariammama Mon 26-Nov-12 23:42:38

Oh, no referral, great, will you write and tell dvla these definitely aren't. Fits so I can still have my license

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 00:32:25

You can still lose your license for non-specified blackouts though. Just to put a downer on that one. I lost my license 6 months BEFORE I was dxd with epilepsy.

<<Clears throat>>

Brushing aside that last statement, it IS a good idea of Mariamma's to ask your GP to confirm in writing to the DVLA that it is NOT epilepsy and that you are safe to drive.

If he won't write to the DVLA to say you are safe to drive, then you can say that if you are not in his opinion safe to drive, then you want a referral to find out WHY you aren't safe to drive...

I haven't driven since 6 months before my diagnosis, since my first tonic-clonic. I WAS seizure free for 52 weeks a few 6 years back, sent off for my license...and went into Status Epilepticus whilst waiting for my license to be posted out to me.

<<Harrumph>>

I had to surrender it the day it came through the post. angry

At that point, I gave up on the notion of ever driving again, as I would have my DC's in the car, and I'd never feel safe again, and would never forgive myself if anything happened to them through me having an unexpected seizure at the wheel.

I still don't have my bus pass - I'm finally getting round to applying for it next week with my Charity lady helping me.

<<Queen of procrastination>>

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 00:42:10

Oh - about driving your DS to Secondary - you CAN get transport paid for due to a parents disability, you just have to find out which way to go about it in your LA.

Some do it if you have a bus pass as the parent but your DC can't use the bus (for whatever reason - their own SN's, not on bus route, bus doesn't reach their school on time etc.).

Others do it as Direct Payments from the Adult Social Care Dept. of your local Social Services.

Yet others do it through the Children with Disabilities team of your local Social Services - especially if your DC has a disability that means that they cannot access the usual school bus or walk to their school, if their parent also has a disability that prevents them from driving.

Number of ways around it, it basically depends on a) Which LA you are under, b) Whether your DC ALSO has a disability that either means they are unable to attend the local school and therefore have further to travel and you would need to drive them there, OR that your DC has a disability that means that they cannot access the usual mode of transport to the local school, like AS meaning the school bus is not useable, and that means that you would have to drive them there.

Either of the option for 'b' are going to mean that he can't get to school at all if you can't drive him AND he needs to be driven, for whatever reason. And therefore the LA will have no CHOICE but to step up!

ArthurPewty Tue 27-Nov-12 10:46:45

Couthy: as both of my girls have autism, for secondary school transport will be an issue, and if I'm not allowed to drive...

Moose: thank you. I guess it may probably just be a matter of time until I'm sleep deprived, stressed, and exhausted enough to end up on the floor. I do wish it'd hurry up though!

moosemama Tue 27-Nov-12 10:49:39

I'm still vainly hoping it won't come to that but ...

School is a 20 minute walk away via the 'safe route' through a local housing estate.

Ds can't walk there on his own because he can't be trusted not to step out in front of a car and to get to the 'safe route' he needs to cross two main roads. hmm The only bus would need to be caught from a stop across the main road as well and it isn't a school bus, it's a standard public transport bus.

I really want to be able to take him and pick him up myself to make sure his anxiety levels are kept under control before he gets into school, but have the other two to get to school at the same time as well. Not sure if by then dh might be able to change his hours slightly to do the morning drop off (he's only been in his new job for around 7 weeks) so that would just leave the afternoon. I looked into the other two doing half an hour in after school club so I could walk up and get him first, but it would cost me a whopping £12.00 a day! shock

If he went to the other school we considered he would be guaranteed transport, but it's over an hour's drive across the city and he gets travel sickness, plus he's exhausted enough every day when he gets home, without adding two hours to his school day.

Seems no matter which way round we try to organise things there's always a spanner in the works.

I am trying to trust that something will work out, but feeling decidedly anxious about it all and that's without all the worry about him actually starting secondary school in the first place.

moosemama Tue 27-Nov-12 11:01:55

Well Lougle, if my week so far is anything to go by, nothing much changes even if/when you do end up on the floor.

Dh hasn't even offered/asked to book time off work so I can get a bit of rest and DM went awol yesterday (shopping) is busy today and away tomorrow, so I have been alone with sick dcs, including one extremely melty-down ds1 who spent much of yesterday kicking off, when not whingeing about how unfair it was that he was ill and intermittently screaming that he was going to die because his head hurt so much. hmm

Dh failed to wake me this morning until he was literally out the door and then wondered why I was angry that I had to literally leap out of bed with no chance to wake up properly and come downstairs to supervise the dcs, as they can't be left alone for a second.

Came downstairs to a fight between the boys, lost my temper with them and they both ran off upstairs, upset. sad Then dh and I had a row and dd burst into tears. Eventually he stormed off to work late with nothing resolved and he is out at a user group/forum thing he runs to do with his work role tonight, so I am on my own then as well.

None of the dcs seems well enough to go back to school, in fact they all look like death warmed up and dd still can't speak more than a whisper (think it's laryngitis). I really want them to go back to school tomorrow, but that means three school runs, on crutches with a blooming wrenched shoulder.

Am also worrying about the amount of time they've had off sick so far this year, as I wouldn't put it past the school to use EWO to put the boot in.

We have an advocate coming round tomorrow evening to discuss the whole school mess and help us form a plan, but the place is upside-down with luggage from the weekend and the detrius of having three kids off sick while I'm not firing on all cylinders. Plus the paperwork is in a complete mess, because I have simply not been on top of things so far this school year, so I am going to look incompetent and a slattern all at the same time. blush

Can I start this week over please? Preferably with a better preceding weeknd?hmm

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 11:03:39

I would look up about the ways around transport issues for DC's with SN's when the parent has a disability that stops them from driving - there ARE ways around it. Each LA is slightly different, but I'm dealing with this right now for my Y6 (Possible Aspergers, awaiting appointment for testing) DS1, who is unlikely to go to the local school, but to the far smaller Grammar school right across town, and transport will be a HUGE issue for me.

I've found loads of ways to get the costs covered.

I hope that I can help you both if this does become an issue!

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 11:08:34

God, DS1 is on the verge of the EWO, tbh they should have already been out. Before the October half term, his attendance dropped to 48%!

It's slowly climbing again, but he is very run down - he had antibiotic-resistant streptococcus infection in his throat and couldn't DRINK without painkillers for 6 weeks, AND halfway through that time, he had appendicitis and had his appendix out!

And because of the strep infection, one of his wounds still isn't healed properly, he STILL can't bend over 5 WEEKS after his operation, the wound is still oozing and having to be dressed daily, and yet I'm having to send him into school or the EWO will be out!

Grrrrrrrr! angry

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