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

(32 Posts)
QueenofmyPrinces Thu 08-Aug-19 12:29:15

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.

OP’s posts: |
HoppingPavlova Thu 08-Aug-19 12:41:36

No help but wanted to say I’m so sorry about this and understand how absolutely gutted you must be. It is spectacularly shit and unfair. Seems such a trite gesture but flowers.

Egghead68 Thu 08-Aug-19 13:24:46

It’s important not to catastrophise.

Have you seen your neurologist to get your medication adjusted?

I know this was a shock but hopefully it was a temporary blip and you will be able to get your driving licence back in due course.

How about calling the Epilepsy Action helpline for support and advice?

Best wishes.

courderoy Thu 08-Aug-19 13:29:24

Oh you poor thing. It was controlled before, it can be controlled again. Presumably you’ve seen your neurologist?

QueenofmyPrinces Thu 08-Aug-19 16:18:29

I haven’t seen a neurologist because I don’t have one. I was discharged from Consultant care about 12 years.

When I was pregnant with both my children I was under the care of the Epilepsy Nurse but that was all I needed because I wasn’t having seizures - it was just for monitoring and dosage tweaks as needed.

I’m seeing my GP today in order to ask for a referral to a Neurologist.

I’ve been to see my Managers today who have referred me to Occupational Health and then I’ve got to be risk assessed in terms of keeping myself and my patients safe at work.

I feel so drained by it all.

I don’t live by my family and I always drive to see them once a week and now that’s going to come to an end.

I do lots of voluntary work outside of my job and now all that’s going to have to come to an end because without a car I can’t get my children to childcare and I can’t get to the venues where I volunteer.

I cannot get to work without a car so we’re having to re-jiggle everything so my husband can take me to work before he goes to work himself. It means he’s got to drive 30 minutes to my work and then he’s got to drive another 45 minutes back in the same direction we came from in order to get to his own place of work.

I feel like I’m in a bad dream and I’m just waiting to wake up.

OP’s posts: |
LadyB49 Thu 08-Aug-19 16:23:07

You will know better than me, but I thought you had to have two seizures to have to return your licence.

Egghead68 Thu 08-Aug-19 16:27:59

OK - good that you have got the referrals to neurology and occ health sorted. Hopefully the neurologist will be able to adjust your meds so you won't have another seizure for another 13 years.

I think you are leaping ahead to the worst case scenarios which is understandable but not necessarily helpful. Plenty of people manage their lives without cars and/or with epilepsy. I am not saying it will be easy but there may be solutions to some of these issues. It may well be that you can get your licence back in time anyhow.

Can you take a bit of time off work to recover emotionally? Can your epilepsy nurse provide support?

If you are near London or Bucks I would strongly recommend a referral to Queen Square/Chalfont for management of your epilepsy.

Egghead68 Thu 08-Aug-19 16:30:52

You need to be seizure-free for 12 months before you can get your licence back:

www.epilepsy.org.uk/info/driving/can-i-drive

Egghead68 Thu 08-Aug-19 16:32:12

P.S. assuming you had your seizure when awake

Egghead68 Thu 08-Aug-19 16:36:00

At the risk of pointing out the obvious, some possible solutions:
1. Get the train/bus/coach to see your family (buy the tickets ahead of time so they are cheaper).
2. Get a lift to work from a colleague? Get public transport all the way or part way and then walk the rest?
3. Get a lift to volunteering from a fellow volunteer? Or walk/bus?
Your workplace will hopefully put in place any adjustments necessary there.

Fatted Thu 08-Aug-19 16:38:01

OP, my dad was the same. Except he hadn't had a seizure for 50 years. Then had two in six months. It was life changing for him. But he has come back from it in time.

It sounds like you have a lot on your plate with two young kids, working and volunteering. My dad still puts his last seizures down to stress and I also have a colleague who has epilepsy who says there's is made worse by stress too. Maybe look at ways you can take a step back.

As others have said, can you consider taking some time off work while things settle down. Adjustments will need to be made long term, but you can and will learn to work around it.

Theworldisfullofgs Thu 08-Aug-19 16:38:42

Come on here and rant. My DH has a cavernous angioma which causes seizures and ?epilepsy. Unfortunately you do have to let DVLA know. You have to let them know if you change meds even.

Losing your license is devastating both for you and your dh. I get where he is coming from because it changes his life as well. Have a rant and then focus on what you can do and can control.
You are ok and do far it's one seizure and your epilepsy had been controlled in the past so it will be again. You are doing the right thing getting a referral to a neurologist.
But you are right it does suck, it isn't fair and it will change things.
And...you'll find a way to get used to the new normal whilst you have to.

MrsC2018 Thu 08-Aug-19 16:46:55

I get you.

I had a full grand mal seizure 18 months ago and I'm a nurse. I was 33 years old and have driven and owned a car since 21. What people don't understand is that yes, lots of people manage to cope as a family with one car. But they set their lives up to manage on one car.

I work shifts, so I was left getting buses through a rough area where I work very early and very late as I don't work 9-5 like most. My childminder is 10 mins by car from my house but over the boarder of our town so on a different bus route. If I didn't drive then of course I wouldn't have picked her! Similarly the impact on my husband was also immense, he had to pick up ferrying me and the kids around - although he was amazing, I felt like a burden when I've been independent and sorted my own life out for the last 15 years!

I found it so isolating initially and I cried and cried over how much my life changed in that instant.

But. We got through. My youngest and I now laugh about the time that we got caught in a snow storm walking up the hill from school (no buses) and the time he had to have a wee in a field because the bus was sooooo late he thought he was going to burst.

I got my license back after 12 months and although it's dependent on not having another and will need to be renewed next year, I'm just glad that things are normal again.

soulrider Thu 08-Aug-19 16:48:18

Sympathies, my OH was seizure free for 9 years and the first 8 years of our relationship - I used to joke I'd cured him. He was just thinking about starting learning to drive when he had a seizure and has had a couple more in the past 5 years. We are in some ways fortunate as we've based our lives around him not driving.

soulrider Thu 08-Aug-19 16:52:07

Posted too soon, but it has meant sacrifices with job opportunities, housing etc.

cstaff Thu 08-Aug-19 17:22:48

@QueenofmyPrinces

I can only imagine how devastated you are. I have had epilepsy all my life. I had surgery 3 years ago and have gone seizure free since then. I know if I was to have another tomorrow I would be absolutely .... well you know OP. It has been life changing for me and I haven't even started to drive yet (I do intend to start soon).

Sorry OP - I have no solution for you - just continue with the plans you have made. Tell the GP that your consultants appointment is urgent - hopefully that will get you in there faster. Best of Luck

ArnoldBee Thu 08-Aug-19 17:32:09

If you have buses get yourself a free pass. It's not much but it's something. You know you need to relax as stress won't help. My hubby randomly collapses no known cure and it was some getting used to it but I don't even blink now when it happens. You need to work together.

QueenofmyPrinces Thu 08-Aug-19 18:11:19

My work is a 30 minute drive away, 15 minutes of which is down a motorway, so definitely can’t walk it. I have looked into buses/trains and each method would mean 2 busses/2trains each way and there’s no way they would be able to get me to work on time as I need to be there for 7.15am and when I finish work at 20.30pm the services no longer run.

I have 3 colleagues who live near me but we all work different shifts, including them doing night shifts which I don’t do.

My parents are being fantastic at how they can help with getting me to work but no matter what option we go for, it is going to hugely impede on other people.

I have seen my GP now who has referred me to a hospital and she’s also given me a sick note for two weeks so at least that buys us some time to get some kind of plan together.

I feel in a daze. I feel stressed. I feel upset, I feel confused, I am all over the place.

I thought I had left this stage of my life behind me and now I don’t know what to do.

OP’s posts: |
Theworldisfullofgs Thu 08-Aug-19 19:09:12

What kind of job do you do? Could you work from home some of the time.

Unfortunately my dh lost his job and was out of work for a while. He then got a better paying job for a much better company. It was awful at the time and we got through.
Please take up offers of help, both for your sake and your dh.

QueenofmyPrinces Thu 08-Aug-19 20:16:32

I’m a paediatric nurse on a hospital ward - definitely no option to work from home.

My Managers were amazing though, they were so supportive and they genuinely will do anything they can to make things easier for me. I don’t know what we’re going to do but knowing that I have their understanding and support makes it all a lot less scary.

The GP was really sympathetic though and is going to try and rush through my appointment.

My head is spinning. Me and my husband are arguing because we are on completely foreign ground and neither of us know how to deal with it.

OP’s posts: |
Egghead68 Thu 08-Aug-19 21:05:00

Your work have to make reasonable adjustments if they possibly can. One might be to change your shift times to fit with public transport.

Sympathies and flowers. It is completely rubbish (but as others have said, there is no reason why you won’t adapt and get through it)

1Wildheartsease Fri 09-Aug-19 08:14:03

So sorry this has happened to you!

Remember that a seizure/heart attack/catastrophic road accident can happen to anyone- it can come out of the blue and not be part of a long term condition like yours.
(Don't feel guilty/ responsible it could be your husband in similar situation. )

Your husband is probably a bit shocked and scared. (I was when it happened to my DH.)However, He did sign up for this -even if he didn't focus on it at the time. The 'in sickness and health ' bit of the marriage ceremony is there for a reason.

This is a sort of bereavement and will take some time to adjust to ...but you will. Things will be different but not worse in the end.

ltappleby Fri 09-Aug-19 17:04:18

I'm sorry this must be such a shock. Perhaps you could look into the Access to work scheme - you may be entitled to claim taxi fares to work?

DianaT1969 Fri 09-Aug-19 19:23:55

Sympathies OP. Who is initiating these arguments? You,vor your DH? They really need to stop right now. I know it doesn't help now, but what was the run up to the seizure? Any added burdens, more shifts, emotional stress, poor nutrition, high sugar etc., Anything that you can avoid in future to hopefully get your licence back in 12 months?

I hope that your workplace will accommodate daytime shifts that co-incide with public transport.

QueenofmyPrinces Mon 12-Aug-19 09:09:49

Nothing leading up to the seizure was any different to the 13 years I’ve been seizure free.

Yes I’m tired, but I’ve been tired for 5 years.

I can’t believe I got through two complicated pregnancies (epilepsy issues and another health problem I have) without any seizures, had horrific periods of sleep deprivations with both my babies and hadn’t no seizures, and now one has appeared out of nowhere.

Me and DH are just generally bickering. I’m upset because it’s happened, he’s trying to be practical, I don’t want him to be practical because I’ve been through it all before and nothing he’s saying is new and I just want everything to go away.

I’m sending my driving licence back today and I feel so sad.

I can’t stop thinking about how safe my children are going to be with a mother who has seizures.

My epilepsy never put anyone at risk when it first came about (apart from myself) but now I’ve got two young children and I can’t stop worrying about the potential impact on them sad

OP’s posts: |

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