Being recently diagnosed with epilepsy

 

Kevin has been recently diagnosed with epilepsy. Here he shares how he felt, the type of seizures he has and what he would say to someone who has also been recently diagnosed.

 

How did you feel when you were first diagnosed?

When the doctor told me I had been diagnosed with epilepsy, I was filled with immediate fear, dread and confusion.

There had been no history of this in my family and I had never suffered any previous neurological problems in the past so it came as a massive shock.

My first instinct was to research as much as possible about the condition and learn more about how it would impact my life.

 

Where did you have your first seizure and how did you feel?

My dad came round to visit but I was still in bed at 10am (very unusual) and I said I wasn’t feeling great so decided to go back and stay at my parents’ house for the day.

I was in the car heading back (my dad was driving) and he said I started licking my lips for 60 seconds and then started to have a tonic-clonic seizure.

He immediately drove to hospital and I was admitted to Accident & Emergency where I had two further tonic-clonic seizures and was kept in overnight.

I have no memory of any of this happening and woke up in hospital the next day.

 

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

I have tonic-clonic seizures and have been taking anti-epileptic medication called Levetiracetam / Keppra since the date of my first seizure which has kept things under control and I have had no further seizures since.

 

What challenges have you faced since being diagnosed and how have you overcome them?

The DVLA have taken away my driving license for 12 months and I will only be able to reapply for my license once I have been seizure-free for one year.

This has an obvious impact on my day to day life. However, I will soon be applying for a National Entitlement Card which will allow me free bus travel which will make things a little easier.

The Levetiracetam / Keppra medication has impacted my mood and I can feel more tired and agitated at times.

However, I will wait a few more weeks to see if this settles down and if not then I will speak to my doctor for advice.

I have also changed my diet to dramatically reduce my carbohydrate intake along with now only drinking a very small amount of alcohol as opposed to enjoying a bottle of wine on a Friday night after work.

Epilepsy

 

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

Yes, I feel that along with all the challenges mentioned above, epilepsy is now a core part of my identity as a person and I am definitely a lot more empathetic towards other people with medical conditions.

 

What would you say to someone who has been recently diagnosed?

You are not alone! There is lots of help and support available from excellent organisations like Epilepsy Scotland, and lots of good Facebook groups and communities where you can ask for advice and support from others who have epilepsy. Please don’t be afraid to ask for help.

Try and use your epilepsy diagnosis as a positive to improve other aspects of your life such as fitness and diet which could possibly help reduce your seizures. Turn a negative into a positive wherever possible.

Remember that it may take a few weeks for your medication to work properly and for your emotions to settle down – things will improve with time.

Please speak to your doctor immediately if you don’t feel things are right.

 

Is there anything else you would like to add?

I wrote a long blog about my experience of having my first tonic-clonic seizures and what happened when I woke up in the hospital.

You can read it here – feel free to reach out on the contact form if you would like to ask any questions about epilepsy.

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

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