Our phone chat #5 – Jill

Maria: Hi Jill! Thank you for the work that you do for EWCT and for also agreeing to be part of yet another of my community projects. People like you are pivotal to the success of community groups such as ours and your support has been unwavering.

Jill: Thank you Maria. It is important that people with epilepsy help others by sharing stories. For me, I would like people to understand that epilepsy is not who I am. I am Jill. A wife, mother, grandmother, a volunteer and many other things that I value. Epilepsy is a small part of who I am.

Maria: Quite true! People with epilepsy are not epileptics, they are people living with epilepsy. That is an important message for people to hear right there. In every story there is a beginning. Where does your epilepsy story start?

Jill: I had my first tonic clonic seizure at the age of 24 years when I was pregnant with my first child. I was put on Dilantin, which I absolutely hated. It made me feel so sedated but I was on this medication right through the remainder of my pregnancy to keep me safe. I seizured at the birth of my baby and I ended up by having a caesarean.

I had three more babies, with more seizures during my pregnancies and a caesarean with each one. I always had a seizure after being anesthetised, which didn’t help how I felt generally. The medical staff thought that my seizures were related to me being pregnant. My GP handled all of my pregnancies and my seizure treatment. I only had seizures during the night, and so I was able to function to some degree during the day but I always felt tired. It wasn’t until my youngest child was 5 years old, and when I was driving my car with my children in the back seat, that I actually had a daytime tonic clonic seizure and I had an accident. It was at that point in my life that I was sent to the hospital to have my seizures investigated. I was quickly diagnosed with epilepsy.

It was tough-going as I was a solo parent with four small children to look after. I couldn’t drive and I had to do the best that I could. I was put onto Tegretol and I was fairly well controlled on that medication for at least 13 years although I would occasionally have the odd night-time seizure. However, despite the tough times I was able to train as a nurse and I went to work in oncology outpatients.

Life was good for many years before I started to notice a couple of little strange things happening to me. Occasionally I would become confused at work but I didn’t put this down to seizure activity then, one day after driving home from work, I had another accident. I collided with a power pole!

Maria: Oh dear. Were you injured?

Jill: No, fortunately not but I remember trying to get out of the car and having bossy people trying to make me to stay put. I had post-ictal confusion and all I wanted was to go home. Once the police arrived, I persuaded them to take me home so that I could recover. I didn’t need hospital help. I needed to go home to sleep. The police were very kind to me. They didn’t have to tell me that I would once again lose my driver’s licence for a year.

After that, I consulted a private neurologist who did his best to control my seizures. Over the next 10 years he trialled me on several different antiepileptic medications but I continued to have night-time seizures. I would always wake up busting to go to the toilet and my second husband would give me frisium, which would prevent a further tonic clonic seizure from happening. My seizures generally lasted 2 minutes and I would have a headache and vomit. Sleep was the only thing that would improve my situation. One day, I can distinctly remember saying to myself “maybe this is the best control you will get, you need to accept that fact and get on with life”. Reaching that point was a breakthrough for me. I stopped getting so frustrated and disappointed at myself, every time I had a seizure.

When I retired from work, I decided to go back to my neurologist to see if there were any other options. I wanted better seizure control even if it meant that I had to try a different medication. I was put on leviteracetam and that is the best medication that I have been put on. I have no side effects. No seizures! In my life I have tried epilim, lamotrigine, dilantin, and tegretol and with ghastly side effects. Quite often I felt completely over-dosed. I can understand why people stop taking their meds but my advice is to continue persevering with them because eventually you may find the ones that work.

Maria: Good advice there, Jill, but we both know that it can be tough for ~30% of people who are considered drug- resistant.

Jill: Absolutely! We all need to find hope and an enjoyment in our lives knowing that epilepsy can pose many challenges but first, we must accept our condition and find a positive path forward. Life is certainly worth living and that is possible to do with good support.