To be freaking out.

[HettieBettie]

Can’t sleep. We had a shit day yesterday.

Husband has been told he has epilepsy after some pretty horrible seizures and episodes of confusion recently. I guess that’s positive really but to hear epilepsy made me almost vomit.

Because the thing is we’ve been here before and that’s what’s freaking me out. Dh’s dad died from a large seizure (even with AEDs) six years ago which we thought was linked to a car accident (seizures started few months following crash) but now I’m not sure. I wont obviously say that to my husband. He won’t really talk about his dad ever for many reasons anyway but I think even more now.

I’m being cheery and happy with him as he’s being his normal amazing self. But I have this awful feeling like I can’t breathe.

I’m sat here at 5am. Crying like an idiot. I’m probably jumping to conclusions and thinking worse case scenario but my normal very logical brain has abandoned me.

Aibu to freak out? Please help me

It's perfectly natural to be worried given your experience, all I can say is FIL was in a horrific car accident when younger, he did have frequent seizures when DH was young (he had to call an ambulance at six years old because he was alone with his dad when a seizure hit). FIL has now been fifteen years seizure free. He says the knowledge and meds are so much better now than when he was diagnosed over thirty five years ago and other than the daily tablets and an annual check in with his neurologist he could write easily forget he has epilepsy for the impact it has on his life.

More reassurance from me, I hope. My ex was diagnosed at 40, after some strange absences which he brushed off as 'thinking about other stuff' and not responding - until he had a (thankfully minor) car crash and had to admit that there was a problem. It was a scary time and he was very upset at the time. But he has now been seizure free for at least 10 years and lives a completely normal life.

The best advice I can give you is to see an epilepsy specialist ASAP - ask for a referral if you don't already have one. My ex saw a general neurologist who prescribed various medications which did not control the seizures well, the specialist quickly identified what was needed, prescribed a combination of drugs and they worked brilliantly.

Good luck.

My husband has epilepsy. He's controlled through medication and is nearly two years seizure free at the moment.

His seizures are frankly fucking terrifying. He had one a few years back where is choked on his own vomit and stopped breathing and I had to restart him. There have been calls from ambulance crews after he's had seizures in the street. But for all that, it's a fact of our life together and something we just deal with.

Get a referral to a neurologist, ask to see your local epilepsy nurse, if you're not happy with the meds (some made my husband aggressive)) keep pushing until you are.

Here's what makes our life work. Figure out the triggers for seizures. For my husband they are sleep related. He needs to take things slow in the morning. Even when he can drive (a year seizure free for that) he doesn't in the mornings or when he's tired. Our lives are set up so he doesn't have to drive at all, so if he has a seizure and has to surrender his license it's no practical impact on the day to day. Medical ID tags - his memory is shot post seizure and this means people know how to get hold of me. No locked doors in the house, we tell all visitors that a closed door should be treated as locked, but it means I can get to him if he has a seizure. My husband loves baths and I need to sit and talk to him while he has one or stay in the next room to keep an ear out for him. He doesn't get to swim alone or early in the day/before breakfast.

Lots of it is basically a risk assessment and figuring out what you can and can't live with. You both deserve to continue living your life without constant fear and you will find a balance that works for you. Post seizure you're both going to feel appalling. I usually put my husband to bed after a lot of hugs and reassurance. He needs to talk through what's happened and be told that he's ok and loved. Then I have friends over who look after me and make sure I'm coping ok.

Good luck with everything, you'll get there and you will be ok.

Thank you ladies. All really useful positive advice. It is a shock.

Guess what? as soon as I typed it all out- I did actually get to sleep!

Feel bad now though as DH got up with the baby this am and my 6yr old has apparently been doing shows since 6 am....