Epilepsy - I had a seizure and I’m devastated.

[QueenofmyPrinces]

I was diagnosed with epilepsy when I was 16. For 7 years my life involved living with seizures and the restrictions that came with it, drug dose increases with some horrible side effects but finally, on that 7th year, I found myself on a dose that stopped my seizures.

Four years later I met my now DH and we now have two children aged 2(next week) and 5. During my pregnancies I had lots of issues with my drug doses and blood levels but under close management I managed to get through both pregnancies with no seizures.

The other day I went to work and completely out the blue, after 13 years of being controlled, I had a seizure.

I am bereft. I am so, so upset and can’t stop crying. I’ve got to send my driving licence back and my life as I know it is going to have to completely change. My Managers have now got to risk assess me because of the nature of my job and everything is going to have to change. I can’t take it in and I think I’m in some kind of shock.

Me and my husband are bickering. He’s been thrown into this, he’s never had to deal with my epilepsy before because my seizures were controlled before he even met me. I think he’s in some kind of shock too. He’s trying to fix everything but it can’t be fixed.

So many things are going round and round in my head, over and over again and I can’t make any sense of it.

I don’t even know why I’m posting.
I’m just struggling and I don’t know what to do.

I’m very lucky in terms of support.

My Managers at work have been fantastic and I think they will do whatever they can to try and make things easier/better for me.

My parents are amazing and have said they will help with getting me too and fro work.

My childminder has said she understands that things may be harder and our arrangements may have to change but she said she will do whatever she can to make things easier - including picking my son up from my house seeing as I can’t stop him off.

Two moms from the school my eldest attends have come forward and said they will help in any way they can in terms of taking/picking up my son and taking him (and me) to the after school activities we do together.

Two of my neighbours (that we know well-ish) have been around and said that if I ever feel unwell or strange at home then I can go round to them and they will take care of me until my husband or one of my parents can get to me. They have also said that if God Forbid I have a seizure at home when I’m alone with the children then my oldest can go round and knock on their front door and they will come and help.

And although me and DH have had a few little bickering episodes over it I know 100% that he is completely behind me and we are in this together.

It just feels like I’m right back at square one again. I feel like I’m 16 when it all started and when my life as I knew it had to change. I know things will be okay but at the minute I just so devastated that I’m back in this position again. I really thought it had gone.

Big handhold for you OP.

Some NHS trusts will get you faster appointments if you’re staff. Your GP should also be able to call the doctor who is “on call” for neurology advice at your nearest specialist centre.

Failing that, could you afford the £200ish for a private consultation?

I have some personal experience of this so DM me if you have any questions.

I'm so sorry to hear this. I understand why you and your husband are bickering. It's a big change for you both to deal with. Did your husband see you have the seizure? If so he might be a great deal more scared than he's letting on.

My husband has epilepsy. His was controlled when we met, then he started having seizures again. And I was terrified. Our lives are now set up to make sure that my husband doesn't have to drive, we've bought a house nearer his work on good transport links and I commute instead. I will always have to do all the driving.

It's totally possible to set up a life where you can live with epilepsy, but it's hard work that you both need to commit to. Not being able to drive is a huge thing, don't try and minimise it.

Even if this is a one off, it's a huge thing for you. Not only are you going to feel rinsed by the seizure, but you're going to feel like your body has betrayed you and you're going to be focusing on what you've lost and the what ifs of the future.

My husband's been seizure free for two years. Hopefully his meds are under control now and it'll continue this way, but epilepsy is always going to be part of our lives. We're already thinking about how we talk to our baby about daddy's epilepsy and what we tell him. My husband never gets too go swimming with the baby without me or give him a bath if I'm not at home. These things will get easier as our boy gets older. I hope he never has to see his dad have a seizure, but he also needs to know what to do if he does. We're trying to be about balance and safety.

Good luck xx

The problem with epilepsy is even if you think all is ok and you are seizure free is it lurks in the background.
You sound like you have great support and I get it, it's not the same as being independent and not needing support. Just remember it's the bravest and strongest people who ask for and take help.

OP I don't know what the process is like but maybe looking at something like Access to Work might be helpful? Just another route that could be explored www.gov.uk/access-to-work

My mom is familiar with the Access to Work scheme and told me that I would most likely be eligible for it and so I have applied. I don’t really know how it works but I have been told that someone will be in touch within the next 3 weeks.

My GP said to me that when people with epilepsy go a very long time without a seizure they start to think it’s gone, but that in fact epilepsy can never be cured, the person will always have it and periods of remission can end at any time when a seizure suddenly occurs for no known reason.

I just feel so sad about it. I have been living my life like someone without epilepsy for over a decade now, it’s not something I’ve had to consider for a very, very long time and now it feels like its infiltrated everything.

I’m upstairs bathing my children and thinking that I will never be able to do this anymore unless my husband is home with me.

My DH and our eldest son are off to Turkey this October and before it wasn’t a problem at all, they often go away together, but now I’m panicking about whether it’s safe for me to be home alone with our youngest son?!

I had forgotten how much epilepsy affects everything