Nicole has been living with epilepsy since December 2014.
Here she shares how she felt when first diagnosed, the impact epilepsy has had on her life and what she would say to others who have been recently diagnosed with epilepsy.
How did you feel when you were first diagnosed with epilepsy?
I was in a lot of shock when I was first diagnosed and also felt scared of the unknown.
I was having seizures that I hadn’t been aware were seizures and then to be told I had epilepsy was a shock.
Also, I was devastated that I couldn’t drive and felt that I had lost a lot of my independence because I had to be driven around by my family and friends, although supportive, needed to be with me all the time because I was taking seizures and therefore I felt anxious about what the future held.
What type of seizures do you have? How does it affect you?
I have had tonic-clonic seizures, focal aware, focal impaired awareness seizures and seizures in my sleep.
I would feel exhausted and the only way to describe it for me was like ‘hitting rock bottom’ and feeling like I couldn’t climb my way back up.
Also, I felt really low in mood and I had a lot of memory loss.
I also felt as though I was having a panic attack (which at first thought that it was) until I spoke to my neurologist who told me that was a type of seizure I was having.
What challenges have you faced since being diagnosed with epilepsy?
I feel more tired since being diagnosed with epilepsy which in turn has impacted on my social life as I don’t like being out late to ensure I can get enough sleep.
I have also found it difficult telling employers because although they have been supportive, I do find I have been judged on this in some areas of my employment.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Absolutely. It’s how you’re feeling day to day and how you live your life which impacts on you.
I’m so lucky to have been seizure free since 2016, however my epilepsy still has an impact on me and I need to be careful what I’m doing and have had to make lifestyle changes.
Have you made any lifestyle changes to help manage your epilepsy and seizures? If so, what changes have you made?
I go to bed early to ensure I’m getting enough sleep, exercise also helps me and therefore I ensure I exercise regularly.
I no longer drink alcohol as this was one of my triggers.
Also, I have been required to change job as stress was a trigger and therefore had to ensure that I could manage my epilepsy and seizures by going to a job which was less stressful.
Do you feel that epilepsy has stopped you doing what you want to do?
I think when I was first diagnosed in 2015, I felt that it stopped me from doing what I wanted, however now my life has changed as I have two children and therefore I don’t feel that it stops me anymore as my medication has controlled my seizures.
My goal when I first got diagnosed was to be driving again and therefore I made the decision to make the lifestyle choices for me which would hopefully see me back on the road.
What are your main seizure triggers and how to manage them?
Stress, tiredness and alcohol.
Do you feel there is a stigma surrounding epilepsy?
100% there is a stigma. People don’t understand enough about epilepsy and how it impacts on your everyday life as I think if it isn’t tonic-clonic seizures then they don’t think there are other types of seizures.
What would you say to others who have been recently diagnosed with epilepsy?
Don’t give up hope… You will be able to do this and get through it.
Take your time in working out your triggers and once you do that, you’ll be able to make the necessary changes to hopefully make lifestyle changes, however don’t give up on your goals.
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at email@example.com or call 0141 427 4911.