My story of being recently diagnosed with epilepsy

 

Kris was diagnosed with epilepsy in January this year. He shares how he felt about being diagnosed and his epilepsy journey so far. 

 

How did you feel when you first found out you had epilepsy?

When I found out I had epilepsy I had a whole mixture of emotions. I had spent nine days in hospital having large seizures everyday.

One lasting nearly 25 minutes, so I was relieved to find out what was actually wrong but also naturally terrified as my knowledge of epilepsy was non-existent apart from what you see on the TV.

I had no idea if it could be treated or controlled and how much my life would be impacted.

Thankfully the doctor caring for me at the time was brilliant. He explained everything in detail and I left the hospital actually feeling confident and ready for the next chapter of my life.

 

Did you know much about epilepsy before being diagnosed?

I knew absolutely nothing about epilepsy before I was diagnosed. For me epilepsy was for people who struggled with flashing lights and that is why you got warnings on video games and things like that.

When I was diagnosed I googled a lot of things before realising actually epilepsy was so different for so many people. My best option was to speak to the doctor to find out the right information for me.

This followed up by using the Epilepsy Scotland website and resources and I was then able to see the impact it would potentially have on my life.

 

What type of seizures do you have and how does it affect you?

I have both absence and tonic-clonic seizures and both affect me very differently.

My absence seizures tend to last 10 to 15 seconds and involve me just looking like I’m daydreaming.

My tonic-clonic seizures tend to be more of an issue.

Normally before these seizures I get a burning smell and start to gradually begin to feel unwell.

In time, I lose consciousness and my body stiffens and I start jerking aggressively for anything between a minute and my longest being 22 minutes.

Afterwards I become groggy, confused and exhausted and this feeling sometimes takes days to go to away.

My seizures are on the whole now very controlled. However, the lasting effects from seizures when they occur can take a while for me to feel myself again.

Obviously, there is a danger with tonic-clonic seizures that they can happen at any time no matter where I am and this is a scary prospect especially if out and about by myself.

 

What challenges have you faced with your epilepsy? Can you give an example?

I would be lying if I didn’t say there was a lot of different challenges with epilepsy.

Initially for me it was losing my driver licence.

I love nothing more than after a stressful day jumping in the car and just driving, doesn’t matter where to I just loved driving and to all of a sudden not be able to do that was extremely challenging for me personally.

Also, there is that sense of loss of independence and relying on others to do things for you.

On top of that, for me my muscles and head were sore a lot of the time from the initial side effects of my medication, never mind remembering to take my medication twice a day (I am forgetful at the best of times).

Recently I have found understanding a challenge. Now I am a bit further into my epilepsy journey, I am keen to find out and understand so much about how I ended up with epilepsy and why me in a way.

This can be taxing on your mental health looking for answers that just simply aren’t there.

 

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

Epilepsy is definitely more than seizures.

For all that epilepsy is primarily having seizures, it is so much more.

Epilepsy plays a huge part of your life. It changes how you need to approach things in your life, changes what you can and cannot do with certain things and has a huge impact on your mental health as any life changing condition does.

It can take people a while to understand a lot of it, like why you can’t just go out for a party and get drunk or why you have to sometimes spend a day in bed but people who want to understand soon do.

My life has been completed changed due to epilepsy and it has been a struggle even after not having a seizure for a number of months each day. There is still that fear and worry that it might happen today.

 

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

It is scary, it is challenging and the road ahead is a long one but do not give up.

There is so much help and support out there for people with epilepsy that actually so many people live as normal lives as they can with it.

It is a not just a condition, it is a journey. Some days are harder than others and some people understand better than others but there are people out there who will make those hard days easier for you. YOU HAVE GOT THIS!

 

Is there anything else you would like to add?

Being diagnosed with epilepsy is scary. However, there is so much help that actually life can continue as normal for most.

I am proud to stand and say I have epilepsy and hopefully help others in their journey and help others who don’t have it understand.

I want to thank everyone at Crosshouse Hospital for their brilliant care when it was needed most and to my amazing family and friends who supported me through every step of my journey so far.

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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