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

[moosemama]

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. )

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.

I also ache all over today and seem to have wrenched my shoulder - although I can't imagine how.

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.

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. 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.

Couthy, you don't have to help. Vent if you need to. x

I've been called for a colposcopy after my smear test because I've got severe dyskaryosis - CIN3 changes to the cells in my cervix. Slightly worried.

What's worrying me do much is that my joint pains only started 7 months ago, along with the constant pain and tiredness.

Just a but scary, is all.

Get your smear tests done.

Don't leave it 6 years like I did.

I only got it done because I had some rectal bleeding a couple of weeks ago, and had to have my bum examined, so I asked the nurse if she could do a smear while I had my trousers down!

Strangely, I have a fasting blood test for diabetes this morning. I have had no caffeine am like a bear with a sore head, and am STARVING!!

Couthy, so sorry to hear this. ((hug))

My dsis had CIN3 changes a few years ago. She scared herself to death reading too much about it online, but she had a colposcopy, followed by a lletz loop and didn't need any further treatment. She panicked when she heard CIN3, but 3 years down the line and she's absolutely fine. Iirc, she went onto 6 monthly smears to begin with and is now having them annually.

I know it's netmums, but this thread is really reassuring, as it has lots of other people's experience of having CIN3 on it.

Basically CIN3 is not the same as stage 3 - that's the most important thing to remember, especially if you're googling. CIN3 represents pre-cancerous cells/tissue, that have the potential to develop if not removed, hence the loop procedure.

This case study on Jo's Trust website explains it and is reassuring.

I CAN answer the 3/4pm thing!

Stress of getting DC's ready for school, fitting in appointments during school hours, worrying if you'll be back in time to pick them up, rushing around.

Get the DC's, by that point all the stress of the day has caught up with you, you're tired, the DC's are possibly fighting or in meltdown after a day at school.

Body can't process the stress effectively, then BAM! Seizure or weird hinky shit.

Trying not to worry - am tidying my hellhole of a house before the SN HV comes for the first appointment tomorrow.

She will be giving me DS3's genetic results. I'm slightly nervous! Whatever is causing DS3's issues is also what's causing DD's issues and DS2's issues IYSWIM. So being so close to an answer after 15 years is nail biting.

Ouch yes painful. Can you sleep during the day today? How much will it affect the EEG if you do fall asleep tonight?

You can do it Leonie, download a really good computer game that always makes the time fly by for me. I can recommend Machinarium, World of Goo, The Tiny Bang Story and Botanicula all beautiful graphics and you can easily lose hours doing them. I also like Draw I, II and III. I did the whole trilogy in a week when I was off my feet with my ankle last Autumn.

Well, I finally plucked up the energy and courage to call the hospital today. Neuro's secretary was bloody rude, said they only received notification of my seizures and my MRI and EEG results yesterday from AMU. My neuro is on a career break, so they have a locum, who hasn't seen the letter yet.

She also said I am down for a review appointment in March anyway - which is odd, because neuro said in September that I was going onto annual reviews - and that I won't get an appointment before then because they have so many consultants off on leave.

She also said that I had to contact the AMU for my results! Er, AMU are A&E, I don't think they want people going back to them for results! I pointed this out and she said she is not allowed to discuss them with me, as it wasn't her department that ordered them, but I can get feedback from my GP, who have also been sent a copy.

Rang GP, they also received notification of the seizure and my results yesterday. Receptionist then tried to get me in this afternoon to discuss the results, but I am at a Stay & Play at dd's nursery. Then she said first thing tomorrow - but I can't get there, so now have to call at 8.00 am for a cancellation for tomorrow afternoon.

I told her it's not urgent, as I've waited nearly three months now anyway and haven't had any more seizures. Bless her, she's lovely, she said "I'm not a medical person, obviously, but I would say, to reassure you - having just looked at the results, that there's nothing desperately urgent there." Doesn't explain why she tried to hard to get me in asap though. You can never get appointments that quickly at our GPs - v odd.

Merry, I had exactly the same after DS1. CIN 3 and loop treatment. That was 15 years ago and after 10 years of annual smears (yuk) I'm now back to 3 yearly with no recurrence. Try not to worry too much, easier said than done, I know. X

I'm just an occasional lurker on your thread, moose/Leonie. Hope results are encouraging, moose.

Good luck today/tonight, Leonie.

Thanks Ellen, don't lurk - chat!

Hi Moose. Hope you get to see your GP soon. Now you know the results are in it will be hard not to worry about them - I would anyway.

Sorry you have been feeling so rough recently. And you are doing stay and play very brave!

I had a dire day yesterday. Slightly better today. On Tuesday night I had gone up to start bedtime and felt suddenly awful so collapsed on my bed. A while later Dd asked me to wash her feet (she finds it difficult because of the joint pains) and I just couldn't even lift my head. She asked several times but each time I just couldn't. Eventually she struggled to do it herself and went off to bed. I could hear her crying but could do nothing about it. Meanwhile Ds who can't put himself to bed independently because of his OCD had fallen asleep on the sofa and I just had to leave him there. Managed just about to get out of bed and organised in the morning then collapsed for the rest of the day. Feel like a useless mum but also worried because this is happen more frequently recently though Tuesday night was the worst.

Update for visit from SN HV is on my 'Oh bloody hell I'm not ready for this' thread in MNSN. Sorry for the lack of update on here, but it's a very long port & I only had 2 hrs sleep last night, so need to grab a nap while Ex has DS3 before I need to do the school run & shopping!

Too much worrying over the not-yet-given-to-me-but-known-by-the-professionals genetic test results for DS3 to worry about my own health too much!

Colposcopy and possible/probable LLETZ on 26th February.

Visit to possible SN Nursery for DS3 on 25th Feb!

And DS1's school allocation that Thursday-Friday. (Released at some point from midnight onwards on the Friday morning what I still class as Thursday night)

Which I may have to build an appeal for.

So not too much free time to worry myself silly.

I will at some point, of course, manage to find the time to bug my GP about a new MRI scan and EEG. And this time I'm going to arrange it for the day before my period so that it catches me when I have the MOST seizure activity. When I find time.

I had my fasting blood test for diabetes yesterday, and was also told that if my scarily high due to genetic cholesterol issues cholesterol level hasn't improved by May, then I will probably be put on statins.

That will be a nice mix with anti-convulsants...

Hi No Haudin. Thanks for the well wishes. Sorry things are so hard for you too at the moment. You sound like me. Every movement has been a huge effort and I have wanted to cry both at the horrible weakness, but also at not being able to be the parent I want to be and that my dcs deserve.

I guess all we can do is keep on keeping on.

I survived stay and play - fortunately dd is so independent these days she didn't really want to stay with me and was happy to go off and play with her friends, so I wasn't racing about - but boy the noise levels alone are exhausting. However, it's taken from 3.30 until now for me to be able to do anything other than curl up on the sofa. I had to wrap one of dh's presents that arrived while I was out and embarrassingly, I actually cried when I had to take it upstairs to hide it, because it felt like climbing a mountain.

Leonie, hope you are already sleeping and have your alarm set for midnight. Good luck. x

As for consultant - just assume he want so see you sooner because he's ashamed of how shabbily you have been treated by his department thus far.

I feel similar about my results, especially after the GP receptionist said she didn't think there was any need for urgency. Pretty sure they are going to have come back clean, but as you say - I can't change that and they did the EEG over a month after the seizure and the MRI almost two months after, so not sure they're representative anyway.

On a more positive note, I got up this morning to a pretty gift bag and card from dh for valentines. Opened the gift and it was the ring we have been having made since last August to celebrate our 20th wedding anniversary (last July). I am so fussy, I really didn't like the first four samples the jeweller made up, then I didn't think much of the stones they gave us to choose from and eventually I asked them to break down a beautiful boulder opal from my grandad's old jewellery shop and use that. I wanted the ring to be organic looking and the opal is richly coloured but has a natural fault. One long oval opal made two lovely irregular teardrops. It's lovely and was a real surprise, as dh told me at the weekend that we really must go back to the jewellers, because it's been an age since the stones were broken down and polished and we hadn't heard from them. I love that it's totally unique as well, not another one the same anywhere in the world.