In this story shared with us for #EpilepsyDay 2023, Claire and Jane from Sligo outlines their journey with epilepsy so far....
We share an unbreakable bond since birth, not only are we identical twins but we share the same condition. It took 20 years for us to be diagnosed with epilepsy. It’s been a long road to get to where we are today. Our diagnosis is frontal lobe nocturnal epilepsy which means we only suffer from seizures in our sleep. It’s quite rare and as we now know, can be very hard to diagnose!
It all began when we were babies. Our parents started to notice us making strange sounds during the night. We would babble and start crying hysterically.
They took us to see a paediatrician over several years and were told constantly that we were experiencing night terrors and we would grow out of them by the time we were teenagers. Back then, there was no video cameras on mobile phones and no easy access to a camcorder. By the time our parents came to our aid, the seizure had stopped.
The seizures continued and became worse as we reached adolescence. As time went on, we became more aware of the severity of our situation. We always had each other - in a strange way it’s comforting because nobody knew how we felt.
We had numerous tests done - EEGs, MRIs and countless blood tests, which all results have come back normal. When we were finally diagnosed, we were very reluctant to start taking medication.
Would they affect our way of life? Would they affect our relationships? Could we become pregnant in the future, and would it be safe? These were huge factors to consider, but after a lot of consideration, we knew taking medication to potentially control the seizures was the best option for us. As many people reading this will know, it was trial and error when it came to finding the most suitable one. After about a year, we found the right medication and haven’t had any major side effects since.
We’ve been well controlled now for about 6 years on the same medication. We do still have the odd breakthrough seizure from time to tome but we look on the bright said as we know that we aren’t drug resistant which we know can be so difficult for so many others living with epilepsy.
We now families of our own now and although it’s been a tough road to getting a diagnosis, we both live a normal life! Sometimes, it doesn’t feel real that we have a chronic incurable condition, but we like to think we wouldn’t be who we are today without it!
We wanted to share our story to help anyone who might be going through the diagnosis journey or have the same concerns that we had when we were starting medications – everyone’s journey is different and we hope that our story helps you on yours!
We also want to appeal to everyone to learn about seizure first aid! Remember those three key words!
- TIME the seizure, if the seizure is any longer than 5 minutes, you need to call an ambulance ⚠️
- SAFE - keep the person safe, remove anything from around their head/neck, don’t put anything in their mouth, cushion their head
- STAY - stay with the person until they come around, they will be very disoriented, confused, and exhausted. Place them in the recovery position when the seizure has stopped and let them know what has happed and that all is okay!
You could save somebody’s life!
Thank you Claire and Jane for sharing your story and helping to create awareness of epilepsy and increasing understanding. For everyone reading, you can learn more about epilepsy by visiting the 'Epilepsy Information' section of our website - and please ensure you make Time, Safe, Stay part of your general knowledge as part of #EpilepsyDay 2023! Visit the 'International Epilepsy Day 2023' section of our website to do just that!