Nicoletta was diagnosed with epilepsy two years ago at the age of 29. She shares the impact epilepsy has had on her mental health and her memory.

How did you feel when you first got diagnosed with epilepsy?

I was in complete shock. Never in a million years did I think I would develop epilepsy at 29 years old.

One minute I was writing notes at a conference, the next I was on the floor having a full tonic-clonic seizure.

Within 48 hours I was diagnosed with epilepsy and all of a sudden had to take medication every day. It was incredibly overwhelming and I was in complete denial.

It took me months to come to terms with it and accept my life would be different forever.

What type of seizures do you have? How does it affect you?

I have tonic-clonic seizures (which I have no recollection of) but mostly I experience auras.

My auras cause me to have an extreme feeling of de ja vu, that I’m reliving a scenario that has already occurred, nausea and a sense of panic.

They last one minute and 5-10 minutes after I’m ok. I tend to find towards the end of the day though my brain function drops completely.

Thoughts are muddled, brain feels like mush, I can’t quite grasp things like instructions or conversations and tasks at work and generally quite uncoordinated if I’m playing sport.

What challenges have you faced since being diagnosed with epilepsy?

Acceptance, anxiety, mourning and dread. I was in complete denial at first, carried on two days after my first seizure like it was business as usual.

Of course, this all caught up with me. I ended up being off work for a month to recover, rest and deal with the emotional aspect of the diagnosis.

Epilepsy Scotland’s wellbeing team were incredible. They provided me with the emotional support I desperately needed that the clinicians couldn’t offer me.

Practically, I’ve had to surrender my driving licence and avoid being in open water (including baths) without someone nearby. 

We always say that epilepsy is more than seizures. Do you feel this has been your experience?

Most people think of someone jerking around on the floor but that’s one small part of having epilepsy.

The dread and anticipation of when or if the next seizure will come. Scared of being alone after an aura in case a tonic-clonic comes on. Worried about being a burden. Concerned people won’t know how to help you.

Medication impacting your mood and other medication/s you’re on. Frustrated that you can’t describe what it feels like to have an aura or a tonic-clonic.

Feeling guilty taking time off work or saying no to social events because you’re so tired after a seizure. Embarrassed at your memory loss.

Losing your train of thought in the midst of a conversation or putting your hand up to contribute to a discussion and completely forgetting what you wanted to say.

Has your epilepsy diagnosis impacted your mental health? If so, in what way?

I felt and still do feel anxious, especially after having a seizure. I used to have strong feelings of guilt if I did have one – wondering if it was because I had taken my medication too late, had one too many drinks or not getting enough sleep.

These things of course do increase risk of seizure activity, but only through the support from Epilepsy Scotland I learnt not to be so hard on myself.

What kind of support have you received to help your mental health?

Epilepsy Scotland have been nothing but amazing. Uschi was so incredibly kind, understanding, patient and provided me with a safe space to share my concerns and worries with someone who really understood what I was going through.

What has helped you with your mental health?

Focusing on what I can do, hearing other people’s stories and experiences, being more open about having epilepsy and taking time to myself if I’m feeling low.

In what way has epilepsy impacted your memory?

I have noticed a drastic deterioration in my memory.

It is incredibly frustrating and embarrassing. I’ve taken to writing down things like life events, moments and taking photos of random things to jog my memory.

I make lists of “talking points” and read these before I meet friends, so that I don’t end up having nothing to say when the question of “How are you? What you been up to?” comes up.

It is so demoralising and I feel like I’m getting old before my time.

What would you say to others who have been recently diagnosed with epilepsy?

It is going to take time for the diagnosis to sink in. As tempting as it is, don’t go down a Google rabbit hole – it will only stress you out.

Always ask your epilepsy nurse or consultant or charities like Epilepsy Scotland whose advice you can trust. Be kind to yourself, it’s not your fault and you can manage this.

There is lots of support out there, especially through Epilepsy Scotland and reach out to friends and family too when you’re ready.

You’re going to go through ups and downs, this is normal. The medication might take some time to settle and find the right type or dose.

If you can find others with epilepsy to hear about their experience can be a real comfort (there is also a great reddit thread!) you will learn so much about yourself, your perspective and just how amazingly resilient you are. Your life is not over. It’s just a bit different, and that’s ok.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.