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.

Weird!

Mine co-incided with my monthly friend deciding to arrive a week early.

I really hope I am not going to start having hormonal migraines every month, because I can't afford to lose between 3 days and a week every month while I lie in a darkened room.

Hope you're feeling better.

I will come back and read the thread tomorrow, but my eyes are really still really sensitive and am struggling with looking at the screen after writing a couple of megaposts about today's appointment.

Oh - forgot. I finally have a physio appointment for my CRPS and an appointment with the locum neuro - which I am currently sitting on, in the hope the referral to the lead neuro turns up in the meantime.

Off to bed now. x

Update :

Went in saw consultant. He asked about health issues, explained epilepsy, arthritis, Hypermobility. He then asked about local anaesthetics, I explained I was quite resistant to them (prior experience, wisdom tooth, nuff said...).

So, go in room. Have to put my legs on plastic stirrup things that are agony for my joints. He starts injecting the local.

OMG the fucking PAIN!!!

I literally felt each of the 12 times he put the needle in (lots of little injections to numb the whole thing. Supposedly) According to the consultant, most people feel nothing after the first jab. Not me, oh no!

They were having to peel me off the fucking ceiling. I live day in, day out with pain, but this was something else!

Consultant stops and says that he's not happy to continue, as doing loop diathermy and a cone biopsy on someone unanaesthetised would be like torture (yep, no arguments here!!).

So it's now going to be done under general in the next two weeks.

All well and good (apart from my fanjo feeling like it's going to explode with pain, but, y'know). Go in waiting room and start filling form in.

Weeeeelll...I turned to partner, said I feel woozy...and that's the last thing I really remember for the next 3 hours...

He says that I had 6 seizures one after the other in the waiting room, then another 4 in the recovery room, to the point where one of the nurses was having to hold my head to keep my airway open!

So feel like I've gone ten rounds with Tyson.

Today, he expected me to be back to normal. My partner that is. After 12 needles in my hoo-ha, and 10 seizures.

And he's done nothing but pick fights today. Bastard.

Tonight DS1 had an allergic reaction, quite bad, had to give him 10ml of cetirizine to stop it.

Not unusual? Well, maybe for DS3...but DS1 is only known to be allergic to penicillin & Amoxycillin. All he did was take a sip out of his water bottle that he'd drunk from an hour previously!

He fell asleep in the middle of my bed. I can't move a 5ft1 tall, 7st nearly 11yo.

DS3 had fallen asleep on the sofa.

Neither Ex nor me can go on the top bunk of the bunk bed where DS1 usually sleeps.

Once DS1 is asleep, WW3 wouldn't wake him until at least 6.30am. Even our smoke alarms don't wake him.

So we are left with two arm chairs to sleep on.

I am currently seething because twatty partner is snoring away very loudly on one.

I however can't even SIT comfortably on the chair without sticking my legs in front of me and keeping my back bolt upright.

Which means I have yet to fucking sleep tonight.

My alarm goes off at 6.45am for the school run. Two hours from now.

But sleep is not forthcoming because my joints hurt too much to sleep in a chair, because the minute I start to nod off and slide sideways, the pain is so immense in my back that it wakes me right up.

If I lift DS3 from the sofa now, he WILL wake up.

Partner WILL NOT wake up. Even if DS3 stands on his head. LITERALLY.

So. I am awake. And tired. Just 36 hours post status Epilepticus.

And partner was picking fights with me at 1am ANYWAY.

Grrrrrrr.

He was just being autistic and not seeing my feelings about a situation, only the THING, and because the THING was small and insignificant, he decided my annoyance was stupid.

I was annoyed because he had ignored me. Again. I constantly feel ignored. By everyone. Him. My mother. The DC's. agencies I ask for help from. My so-called friends that never bother to socialise with me because I don't really drink. (Duh, I'm on anticonvulsants, alcohol doesn't exactly mix well...)

Just pissed off!!!

It's never been that bad before, though I do tend to have seizures after medical procedures that cause pain. (Wisdom tooth removal, coil removal, contraceptive implant removal, things like that).

It's usually only one though. That is literally the very worst my epilepsy has ever been.

I'm taking a positive out of it though - the Gynae consultant was there for three of them in the waiting room & all 4 in the recovery room - so 7 of the seizures were witnessed by a consultant which means that next time some new idiot Neuro tries to say it's NEAD, I have a medical professional to back me up!!

(Always look on the bright side of life, whoo-hoo, whoo-hoo whoo-hoo whoo-hoo!)

DS3 has a new word. Boo~(glottal stop). It means book. He uses it with increasing frequency. He likes stories...thirty times of reading the same book. Over and over.

I got to sleep in the armchair at 5.45am. My alarm went off at 6.45am. I am tired and spaced out - and that's on just nurofen as pain relief. But my back is REALLY painful today after nodding of in the chair. I NEED cocodamol.

Knocked out.com I just can't be doing with, because partner has decided he needs time back at his, because I showed my feelings yesterday.

DS3 woke up 5 minutes before partner left to take DS2 on the school run.

I can barely keep my eyes open. Will post later.

OMG Couthy, I was feeling sorry for myself health-wise this morning until I read your posts. Did they not want to keep you in following all those seizures?

I honestly don't know how you keep going and your ex p needs kicking into touch. Ds1 has AS, but even he accepts that when I need to rest - I need to rest. Even if he can't 'see' why, if dh or Mum tell him I'm ill and can't do something then he has to accept it and do as he is told. He might not be able to fully understand, but we explain it to him using examples of times he's felt really poorly himself and liken it to that. I don't think AS is an excuse for your Ex, he is an adult, with an adult's worth of life experiences. Sounds more like he just doesn't like being inconvenienced and that's not AS it's just selfish. Is there somebody else that can talk to him for you?

I am the same with local anaesthetic, it's part and parcel of hypermobility. Docs never believe me when I tell them then get more and more amazed as I can still feel what they're doing even though I can't see anything. I had a lump removed from my neck when ds was a baby and the consultant told me I must be imagining the pain, as I'd already had 7 injections in an area of less than an inch square. That was until the nurse pointed out there was a sheet up so I couldn't actually see him or what he was doing, yet only said ow whenever he cut me with the bloody scalpel! Same with dental work, the dentist had to constantly inject more and more la all the way through the procedure and said he'd never come across anyone that resistant before.

Hope you manage to get some rest/sleep at some point today - somehow.

I read it as bend without even thinking about it!

Caught an hour between 5.45 and 6.45am, and 1.5hrs later on in the morning.

I have just built up a bed for DS1 as I'm sorting out the DS's bedroom as DS1 is too heavy for the top bunk of a bunk bed now, and DS2 can't climb the ladder.

Oh, forgot to say - do you remember DS1's father and his idiot SM? Well, I got a phone call while I was in bed on tue afternoon, from fucking SS, because he has rung them and told them that I make up stuff about ALL my DC's health, and my own.

SW running Monday to book an appointment to come and see me. He did seem to understand on the phone, and the majority of the health issues I have written proof if from medical professionals reports, all except DS1's possible Aspergers, because that has only just been started, me taking him to the GP.

As if I need SS (CP team) on my case right NOW?! It will delay me getting any help from the CWD team because of the stupid rules in my LA, too.

They are fuckers. The SM hasn't even seen DS1 for 5 months.

And his dad has only seen him about 8/9 times, off four hours at a time, by HIS choice (I'd be ok with him having DS1 for longer if she wasn't there to hurt him), since AUGUST last year!

Grrrrrrr again.

Moose, even if they had suggested me staying in because of the seizures (which they didn't, the local hospital doesn't have a Neuro ward), I would have refused.

The Gynae consultant might have been very nice - but my local hospital was in the news very recently for the 2nd or 3rd (can't remember which) highest death rate, they treat their patients like shit on the wards (memories of sobbing my heart out at the way they were so dismissive of me etc when I had pneumonia, all the wards are the same.)

Outpatients = brilliant. Inpatients? Not so bloody much!

I always go home AMA even when they DO want me to stay in. Because at one point my dx was changed to NEAD, on one stay, I had a nurse telling me to 'pull myself together and stop wasting her time by pretending I was ill"

Bitch. 6 weeks later, my dx was changed back to epilepsy...

I refused to stay in as well and they made a big point of it being my refusal on the discharge papers and again in the letters to my neuro and GP.

Your hospital sounds similar to our local hospital - it's been cannibalised so much over the past few years that there's hardly any inpatient services left and what is there is pretty dire.

OMFG at your inpatient experience! I hope you complained about the nurse, she shouldn't be allowed near patients with an attitude like that - even if it was NEAD - which obviously in your case it wasn't - she should have understood that there is no 'pulling yourself together' because it's somatic not 'acting' ffs! I am honestly horrified for you and every other poor patient she has contact with.

I thought my experience when I was peeing pure blood back in November was bad, but yours is horrendous.

Balls, Leonie, that's a PITA.

Moose - just this weekend, a man with gallstones was found dead in the bathroom with his head down the toilet in my local hospital.

FILLS me with confidence that they are going to look after me properly when I have my op in the next couple of weeks...

Oh my god Couthy it just gets worse.

Can you choose and book somewhere else?

Leonie, good luck for Saturday. Will you get the MRI results straight away then - mine took a couple of weeks, neuro said they had to send them to two specialists to review them.

Sorry about your old medical records, but hopefully you won't need them now the registrar has been kicked into touch and the consultant is on the case. It sounds like the EEG nurse may have all the evidence you need anyway.

I understand why you're nervous, but I honestly thing there's no need this time. I think the consultant has already gone through the registrar's notes and mis handling of your consultation and the fact that he didn't agree with him was borne out by the apology call from the reg.

At worst he will start again, take a proper history and listen to you - but I reckon he will have all the results, will listen to you and you will finally make some forward progress in your management/care.

Thoughts become things, as my Mum would say - try to stay positive and expect a positive outcome.