Working question

[Jaleena]

Hi

This is my first post. I started working part time in Nov last year and recently my epilepsy nurse increased my medication dose. I'm getting more pass outs, memory loss and collapsing. I'm starting to think maybe quit working. What would you guys think?

[sloan44]

Hi Jaleena. I'm John from the U.S and had to stop working as well, go on our disability. What type of seizures do you have? If there is not an anticonvulsant that works you might have to stop working, but that would be a shame. What medication(s) are you on and have you tried them all?

[Jaleena in reply to sloan44]

I got put on levetiracetam in September last year 250mg twice a day. It got increased after 2 weeks to 500mg twice a day then to 750mg twice a day at the beginning of December . I was fine till I started part time work in the office and they increased to 750mg. I handed my resignation in yesterday as I want to get the epilepsy and tablets under control.

I'm lucky where I don't get physical seizures but apparently I get the more common form where I get memory loss, blackouts or just collapse.

[sloan44 in reply to Jaleena]

levetiracetam, that's the generic for Keppra. I tried it once and it didn't work well for me. Do you have left temporal lope seizures? I have physical seizures. I have memory loss from seizures..the medication does it too..but have blacked out once and it's scary. A guy I chatted with in the U.K told me medical marijuana is a no no there. That's a shame because it helps. I have a medical card to use it here in the state of Florida. Have you tried other medications? I now use Vimpat and Aptiom and so far so good.

[Jaleena in reply to sloan44]

Haven't tried anything else. All I know is my head injury was bad. It sure if it's the left or right side of the brain. I have an eeg appointment on weds so will ask then.

[sloan44 in reply to Jaleena]

That's how mine began, from a head injury. Since it's keppra I'm guessing it's left temporal lobe. Just remember your left temporal lobe is on your right and your right is your left. Hope your eeg go's well. Till later, take care. 👍

[sloan44]

Hope you get it under control 👍.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Jaleena

It's good you are hearing from others on here.

As Epilepsy Action is a UK epilepsy charity, this means we only have information on employments rights for people working in the UK.

Maybe you could contact Epilepsy Foundation of America to see if you have any rights, such as reasonable accommodations at work.

epilepsy.com/

epilepsy.com/living-epileps...

I hope things go well for you.

Regards

Diane

Helpline Team

[Jaleena in reply to EpilepsyAction1]

I come from live and work in the uk

[EpilepsyAction1 Partner Epilepsy Action]

I'm so sorry Jaleena. I thought I’ve looked on your profile and saw America. I must have open someone else.

So, I'll start again.

If you haven't already, it may also be best to get back in touch with your epilepsy nurse to see if they can help with these awful symptoms. The role of epilepsy medicine is to give you a better quality of life.

We are aware that some people may need to stop working due to their epilepsy. If you wish to see if you can carry on working, you could talk to your employer about any possible reasonable adjustments. Many people when changing epilepsy medicine get side-effects and reasonable adjustments may help them stay in work. You could explain this would be just for the time your epilepsy medicine is being altered. And the situation could be reviewed when hopefully things improve for you. epilepsy.org.uk/info/employ...

You may also wish to share our , Employer toolkit, with your employer. This is a tool to help employers support employees with epilepsy in the workplace

employers.epilepsy.org.uk/

If there’s a chance you will have seizures at work, it’s a good idea to prepare a care plan with your employer. This can include what happens when you have a seizure and how people can help you during and afterwards.

epilepsy.org.uk/info/employ...

If we can be of any more help, please feel free to contact us again, either on this platform or directly by email [e-mail] or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Tuesday 8.30am until 7.00pm, Wednesday to Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Helpline Team

[Jaleena in reply to EpilepsyAction1]

Ive spoken to my epilepsy nurse and he is waiting for my eeg results. My work have tried to make amends for me but its office work. I'm lucky where I don't have physical seizures but I can have memory loss blackouts or collapse. This has happened walking my daughter to school walking to work or to the bus stop.

[EpilepsyAction1 Partner Epilepsy Action in reply to Jaleena]

I hope you receive your EEG result soon, as it must be difficult trying to look after your family, working and keeping yourself safe whilst having these symptoms.

epilepsy.org.uk/info/daily-...

Take care

Regards

Diane

Helpline Team

[car67]

Hi Jaleena

My seizures are similar to yours, I don’t have many generalised seizures unless I become ill such as a viral infection etc which makes them worse.

I live on post it notes, and writing notes in my notes in my phone. I do understand though re work it always so stressful especially if you had a really good memory before, I try so hard to be organised ,yet as much I try I seem to become more disorganised!!

Lots of people try different things, with post it notes I feel once I have completed a task I can bin it as I know it’s done, also I do almost everything by email so I can always trace it back. Im from Uk too, and I received a lot of support from epilepsy action, I rang them once having a literal breakdown before I went back to work after having time of because I needed a medication change, they truly were amazing. Also I use their risk assessment for work and adapt , maybe you can ask to speak to occupational health?

Also I use lifts instead of stairs and escalators in case my seizure just comes on.

It took me a while to be honest about disclosing my epilepsy as I was so ashamed that people would see me differently, tbh some did as they didn’t know how to deal with it, I soon realised they weren’t friends! My friends are my true friends.

I explained to my son from an early age what to do if I had a seizure , and I also wear a medical ID ,bracelet. If you have an iPhone there’s a section where you can put in about your health, I also have my details in this.

Sorry , 🤨I seem to have waffled on, but I know when I was newly diagnosed I was so lost , so I like to help in any way.

You will be ok 👍🏽