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.

By the way, if anyone wants to add me on Facebook - if for no other reason than to have someone who "gets it" as an ear, message me, and I'll give you my name...

For Bee, we find that some meds are metabolized VERY quickly (like the vimpat) and are effective at relatively small doses and toxic at 'normal" doses. Other meds, she can tolerate quite high doses with minimal effect (and side effect). I think it has something to do with where they are broken down, too - since she has kidney and liver disease.

I, on the other hand, had a terrible reaction to gabapentin after it was prescribed for nerve pain after I developed Bell's Palsy that landed me in the hospital for 3 weeks.

As for the "friend" - don't give her nonsense any of your emotional resources. I find that those who accuse people with legitimate illness of "faking" it, generally are the type who would do that themselves, are predisposed to hystrionics, or doubt the veracity of their own challenges.

Even on a thread devoted to this exact topic, you don't seem to be whinging and wishing for worrying test results. To me, you seem to be doing your best to cope while waiting for results that have huge potential to affect every aspect of your life.

She, on the other hand, is trying to divert attention from her own silliness by making you feel like dirt - you don't deserve that.

Bee - I'm titrating back up because I had 3 years where I had far fewer seizures so I came off all my meds.

I imagine Leonie is going to titrate up too.

I'm waiting for the Neuro to OK frisium, but I have no idea about side effects. I don't think I want to know!

I have heard tell that the side effects from vimpat are brutal.

Am on 1500mg Gabapentin right now, GP is looking to carry on titrating up until I hit 3600mg/day, or my seizures stop, whichever comes first.

The frisium will just be for the week before my period as my seizures triple in that week.

Ex picked a massive fight, and has decided not to support me any more.

So no, not exactly the calm Mother's Day I had hoped for.

It came about because DD asked Ex what DS1 had got for Mother's Day, and he refused to tell her even though he KNOWS that not knowing would cause her to have a meltdown. Tried to get him to see this and HE had a meltdown shouting at me (while i was totally asking calmly) that he didn't have to tell her anything that he didn't want to and I was 'namby-pambying' to her and letting her run the house.

I tried to calmly tell him that I felt it is nasty to deliberately make someone feel so anxious and making them meltdown for the sake of telling them a bit of insignificant information that they NEED in order to not get anxious and meltdown.

He went into total meltdown, shouting, upsetting the DC's, upsetting me, calling DD names (!), stamping his feet (WTF?! He's 37 FFS?!), crying.

I KNOW that he has Autism but WTFuckingF?!

I told him if he was going to upset the DC's like that, then I don't need that type of 'help'. So he shored and screamed some more and told me he would have them every other weekend and I could just get on with it.

He thinks that unless I do EVERYTHING the way HE would, then I'm wrong.

He thinks that because I'm not consistent with the DC's, I'm wrong and I HAVE to change that. Even though he admits that with my own disabilities (classed as severe by the DWP FFS!), it IS IMPOSSIBLE for be to be consistent ALL the time.

So I'm in the wrong for something I can't fucking fix, that I beat myself up over anyway because I know the DC's need be to be consistent but I physically fucking CAN'T, and he's going to shout at me about it in EVERY disagreement we have because it's wrong EVEN THOUGH he accepts I can't do it.

I can't take this any more.

God knows how I'm going to manage post op, with no outside support, no family to help, no agencies willing to help, no nothing, but that's what I'm going to have to do.

I'm sitting here right now fretting about WTF I can actually do to manage the DC's on the days I can't move because of my joints, or when I'm sleeping off a bad seizure, or when I'm meant to be resting to recover from an operation, when no fucker will help, but I can't take the emotional stress and shit from him ANY FUCKING MORE.

I can't remember if I mentioned that in my pre op assessment, they found that I had quite a serious sounding heart murmur and they are going to be sending me for scans to see how bad it is.

The worst of that is that I have had incidents daily for years where my heart has felt like it is pounding out of my chest and I've been putting it down to panic attacks caused by the stress I've been under for years. Now I'm concerned about how bad my heart issue really is and if it will make it dodgy for me to go under general anaesthetic when they have no clue how bad it is.

It could be really dodgy, couldn't it...

Couthy, so sorry to hear things continue to be so stressful for you.

I've been fed the whole 'your childcare issues aren't our problem' line before as well. Fortunately I explained to the secretary about ds1 having ASD and needing to be picked up either by me or my Mum, who is also the only person who can drive me to the hospital (was in plaster up to my knee at the time) and that all their blooming clinic times were across his school pick-up. First person I spoke to said I couldn't switch onto a different consultant's list so that I could be seen earlier and at our local hospital. Lovely consultant's secretary said that was rubbish, they could do it in special circumstances and put me on hold while she popped her head round the consultant's door. Lovely man, totally understood and I was switched to his list there and then. Sometimes you just get jobsworths, who don't like doing anything that involves putting themselves out - but there are decent people out there as well.

Leonie, sorry to hear about your so-called friend, sounds like you are well rid of her though to be honest.

Life in the Moose household has been a tad frantic. Dh is on his last legs, working 12-14 hour days trying to get his product ready for launch, so I've basically been on my own with the dcs since Thursday evening.

He was allowed to have today off (basically because his boss didn't want to work Mother's Day either), but is so knackered that he's been very subdued - if not to say downright grumpy. We had to do a shopping run to get his Mum's Mother's Day card and gift, as he's been working so hard he hadn't had chance. So, I spent an hour in the car with the dcs while he chose the gift, then we raced to see my Mum, then shot off to his parents' new house - which is quite a drive and have only just got back.

Had some nice prezzies though. Ds1 gave me an i-tunes gift card so I can buy a new game, because I've finished all my others. Ds2 gave me some nice choccies and dd bought me some new pjs. Then when we went out I saw a ring I liked in one shop - only a cheapie, but I was really drawn to it and dh bought me that as well.

Ds1 is being a nightmare after the bullying last week, totally manic, tic-ing all over the place and has even developed a lovely new high pitched screeching stim. He's on dd's back constantly and she's hypersensitive due to not seeing dh from Thursday night until this morning, as she is usually glued to his side whenever he's home. So prezzies were nice, but there hasn't exactly been any peace today.

No more night-time episodes, but jinxed myself yesterday morning when I was woken early by dd. I was a bit at being woken when I was so exhausted, but turned to dh and said "at least she disturbed me so I didn't jerk out of deep sleep and have an episode" then a few minutes later I felt the familiar dread and nausea and off I went. Had all my usual symptoms, albeit shorter than usual, followed by three successive sort-of mini-versions.

No episode last night though, but was in light sleep with lots and lots of dreams for most of the second half of the night. Had strange dreams about house hunting with Gillian Anderson as the Estate Agent - seriously weird!

Still thinking/wondering if it could be all autonomic based, particularly as my CRPS has been really bad just recently. Also realised that if I take 30/500 cocodamol for pain half way through the night, I then don't wake up until dh wakes me in the morning, presumably due to the sedative effect it has on me. So, does that mean I haven't had an episode or that I slept through it?

Took ages to type and have cross posted - will go back and read.

Oh Couthy.

I don't know what to say. It's ridiculous that there isn't anyone who can help with short-term respite for emergencies such as inpatient ops. I know it's complicated with the dcs having very specific needs as well though, but there must be something someone can do. I just wish I knew what and who to ask - I wish I could do something to help.

Is there any possibility that some of your drop attacks could be due to arrythmia (sp?) - hence not responding to epilepsy treatment? Just wondering if them finding the murmur might turn out to be something treatable that might improve your daily life in the long-term. Also wonder if it might be hypermobility related - as in EDS?

Leonie, don't waste your time worrying about it. Your consultant made a medical decision based on medical evidence. If this person did contact him - which I think is unlikely - he would almost definitely dismiss them out of hand. Also, your case is confidential and he would refuse to enter into any discussions with them about it.

Do you think that means that if I was just to be given a nightly sedative I could actually start getting some good quality deep sleep, feel better and move on or are they unlikely to do that given their suspicions that November's episode was tonic clonic?

If what's happening are seizures, then at most they would be simple partials, I think. So, if I understand it right, I wouldn't lose consciousness or memory of them. So is it possible to have them during sleep and be completely unaware?

I had decided that if they did decide to go down the epilepsy route I would refuse meds in the first instance. I know the meds are not nice stuff and I remember how bad I was on Topomax. What do you think - am I just being daft?

I know I have EDS, and probably POTS - my constantly low BP attunes to that, but getting a dx? HA!

I'm PAYING in May for DS2 to see Prof G, but I can't afford to do it for everyone, it's just HE'S most likely to get a dx.

I KNOW some of it is epilepsy, but yes, some could be to do with my heart and/or autonomic dysfunction.

Will read my emails soon.

You're not naive Leonie, you just see the good in people and some people don't deserve to have that much faith put in them.

Given your history, I wouldn't say you sound paranoid, but I still think they would refuse to discuss your medical treatment etc with a complete stranger. I know my Grandma's consultant wouldn't discuss her treatment with my Mum when she was very ill, even though my Grandma was in no position to discuss/handle things herself. So if they won't discuss medical stuff with close family members, there's no way they would discuss it with some random bod off the internet.

It's not worth wasting your energy on.