I HAD A tonic-clonic seizure on the morning of December 27 2016, I had never experienced any seizures before this so it came as a shock to myself and the people close to me.
In the months leading up to this first seizure, I had been feeling very strange. I was convinced that I was having slight panic attacks due to the anxiety of Christmas coming up, I did not realise that this was the beginning of something much bigger.
I was getting an overwhelming feeling of discomfort in my whole body, unsure what was real. I got strong feelings of deja-vu and smells that weren’t actually there. I later learned that the “strange feelings” I was having were actually simple focal seizures.
It’s been great to speak to other people with epilepsy about this as it has made me feel less alone. I didn’t think anyone would understand, but they do. It is essential to speak about things that make you feel scared, worried or upset.
I still have simple focal seizures quite regularly, the way I cope with them is to breathe deeply and try to fight any thoughts of fear. I repeat in my head “this will pass”. It seems to work for me.
Temporal Lobe Epilepsy
Although my seizures started at the end of December last year, I was not diagnosed with Temporal Lobe Epilepsy until May of this year when I had three tonic-clonic seizures within a couple of hours.
Like a lot of people, my EEG and MRI did not show up any classic signs of epilepsy so it took a long time to diagnose the condition. Following my diagnosis I was not myself at all, the seizures had affected my memory and moods quite intensely and I was advised to take two months away from work.
Having to take time off was difficult and frustrating as I really enjoy my job. It is challenging to spend days upon days at home, I did begin to feel left out as I couldn’t do the things I would usually do.
I wasn’t able to go out with friends regularly, firstly because I was still in a lot of pain and secondly because I could not afford to. I am happy to be back working full-time now but I do have to take extra good care of myself.
I cannot do the strenuous hours I would have done before my seizures started. If I overdo it, I am guaranteed to begin having simple focal seizures within 24 hours.
Friends and family
Living with epilepsy is challenging, it is a challenge for those who have the condition but it’s also a challenge for their friends and family. I have a wonderful support system around me, my family and friends are very understanding and do not get angry if I cancel plans or don’t feel up for the day that lies ahead.
However, when I was first diagnosed, some people weren’t so understanding. I have fallen out of touch with friends who weren’t prepared to help out when the seizures began to strike. Everyone is different, but for myself I have to make my social circle as easygoing as possible.
Due to my diagnosis of Temporal Lobe Epilepsy, my emotions are heightened and I am overwhelmed by difficult or upsetting situations. The more of those situations I can avoid, the better.
I have been on Lamictal for SIX months now and it seems to be doing the job. I had my si month check up this week, my doctor has also been a fantastic help throughout this journey. I am confident that he has my best interest at heart.
If you are ever having problems with a doctor, I would suggest a change. It’s vital to feel comfortable in the hands of the person who is looking after a medical condition you have.
Epilepsy Ireland’s help
This Christmas will mark one year since epilepsy became part of my life, I have learnt a lot about myself and this condition in the last year. The support that Epilepsy Ireland gives is incredible. I attended an Innerwise seminar last month and I thoroughly enjoyed it. It is reassuring to know that my symptoms don’t only belong to me.
This past year has been testing but I have found a sense of pride in myself that I did not have before, I hope others have found this too.
Eva-Jayne Gaffney is an actress whose star is rising after appearances in the multi-award winning Sing Street as well as Red Rock and Can’t Cope Won’t Cope. Almost one year ago she had tonic-clonic seizure and has been learning to live with epilepsy ever since. last week was National Epilepsy Week and for more information log onto epilepsy.ie.
To embed this post, copy the code below on your site
have your say