Hand hold please

[MoserRothOrangeandAlmond]

My lovely husband is currently sleeping in a cubicle in A&E next to me. I've had one of the worst nights of my life.
Tonight I went to an exercise class, came back an hour and 15 mins later to find my 3 year old daughter standing at the top of the stairs (with her pyjamas on back to front) to say her daddy was lying on the floor in her bedroom.

Walked upstairs to find him on the floor, face covered in blood and confused.
Unsure if he had fainted or since he bit his tongue a seizure.

We were in A&E 8pm-4:30 am, bloods and CT head all ok.
Roll on 5:15 when he had drifted off to sleep he had a seizure lasting 5 minutes.
I'm a nurse but when it's your own it's horrendous.

I love him so much, I've know him most of my life! Be have loved each other since we were young teenagers. I'm so worried!
I'm like a swan (calm on the outside and my little feet are flapping away beneath the water)

I'm so worried. I'm alone, lack of sleep, post nightshift and my brain can't turn off,

Hi @MoserRothOrangeandAlmond i remember this thread. Just wanted to let you know I’m still here listening.

I remember this thread and have been thinking of you.

I know from experience that the meds can have some awful side effects, sometimes as worse as the seizures. My son jerks a lot during his sleep too.

I hope you recieve some positive news soon x

We are just getting passed from pillar to post because he is in between hospitals. Neuro consultant is happy to wait till July and the other consultant just wants to discharge him but we haven't saw anyone face to face. This diagnosis came from a vague letter 6 weeks post MRI and he's having lots of symptoms/side effects. They are both assuming that the other one should be sorting things out! It's crackers!

I'm still awaiting counselling to see if that helps me as I'm still randomly having panic attacks in the middle of the night. Trying to work as long as everything thing else. Just treading water at the moment!

Sending love and best wishes to you and your family. I hope investigations continue to rule out the worst possibilities and, even if he has to stay on medication with side effects, your lives settle down happily again. xx

It's me again, we were drifting off to sleep yesterday evening.
He had another seizure.... we still don't know what's causing them. Still waiting for neurology (end of July).
Apparently this meningioma is totally coincidence they found it and nothing to do with these seizures.
Our daughter slept through it all again, paramedics in etc.
What a worry eh??

Oh hand hold for you darling, I remember when our DS had his first few seizures. It's horrible and you feel so helpless. Awful thing to go through. Thinking of you all.

@raffle thank you I need it.
Went into complete nurse mode at the time. Now it's all hit me.
Made worse by the fact we're in the same A&E as last time who were terrible and I have a formal complaint in.
It's just a nightmare.

I’m so sorry to hear your news. I’m awake so thought I would post so you have some company.

You’re a nurse, you know how best to navigate a hospital. But it is ok to be very firm and clear that you need a diagnosis and treatment plan as it is too dangerous for your DH and your child to continue like this. Seizures at home are dangerous all round and you guys shouldn’t be left to deal with it at home alone.

I hope his treatment goes well tonight. Best of luck to you and your DH.

The neurologist is at a different hospital. He is quite happy to leave him until end of July (as of last MRI scan) and we got a snotty letter back from that consultant to the consultant at our local hospital.
The A&E department at our local hospital was horrendous last time and the letter I received in reply was lies. So I'm currently navigating that as I wrote the letter as a concerned relative. Not a nurse who works in the same trust. (Who knows what she is talking about)

Hopefully with what has happened tonight and when they discuss with Neuro further they might bring the appointment forward.
They want to increase the dose of his anti seizure medication also.

The NHS is a jumbled mess at the moment. Communication always was a problem but now it is just chaos.

I am sorry that you have all this to compound the basic worry about you DH.