Our phone chat #18 – Lisa

Maria: Hi Lisa, thank you for having a ‘phone chat’ with me. There is nothing better than being able to tell a story over the phone because you never know where it is going to lead. That is the beauty of using this method of story-telling.

Today we are going to talk about why your son, who lives with epilepsy, left New Zealand for Australia.

Lisa: It is a bit of a story but, essentially, he had a great job offer there and so he decided to give it a go. He also discovered that he could stop using his anti-epileptic drugs (AEDs) in preference to using CBD (cannabidiol). Back in New Zealand he had been on Epilim, Lamotrigine, and some other drug that I can’t remember the name of. In part they controlled his seizures but they lowered his mood to the point that he felt that he was walking around in a grey fuzzy cloud. The meds really took the shine off his life as he became more and more disorganised.

He would take his meds under sufferance and I would discover his bedroom drawer full of empty and half-empty pill packets. It was as if he was making a protest over what his life had become. He would ask his wonderful neurologist here, “Can I stop taking these things? Can I do ecstasy? Can I drink my energy drinks? Can I smoke weed?” The neurologist always gave a direct answer to these very direct questions but the answers were generally, “No!” Unfortunately, Jake always saw the word “no” as a challenge.

Maria: So how easy was it for Jake to switch from his anti-epilepsy meds to CBD in Australia?

Lisa: Jake was reviewed by his Australian neurologist before he started taking CBD. He is now off his Epilim and is fully taking CBD and that is nearly two years now. And as long as he pays his taxes in Australia, he will have full access to the health system and his CBD. In fact, being able to stay on CBD is his motivation to remain in Australia but it wasn’t initially his motivation to leave New Zealand.

Maria: What is your opinion of Jake taking CBD?

Lisa: It has controlled his seizures and so I am happy for him. Believe me, seeing Jake having his massive tonic clonic seizures where he appeared to launch himself into space and end up by hurting himself was heart-breaking. As a mother, I felt pretty powerless to help him and sometimes I would just phone for the ambulance even though I knew that he would come out of his seizure and recover.

Maria: I agree. It can be really frightening watching a loved one having a tonic clonic seizure. There can be significant injuries as well but we ask that you remain calm in all of this. I understand that that is often difficult to do.

Lisa: On recovery, I always felt so sad for Jake as I knew that he felt gutted for having had a seizure. He would have a blinding headache and need the following day off work to recover. He would say to me, “Who did I catch my epilepsy from?” He wanted to blame someone for having seizures but there is no epilepsy history in our family. Epilepsy has happened to my strongest and seemingly invincible child. As a mother I want to be able to make it better for him, but I can’t and that is why I am happy for him to be taking CBD.

Maria: I understand that need perfectly. In my role as an epilepsy advisor I get to meet many people who endure intractable epilepsy or have problems with their seizures or medications. Life is certainly challenging and I would love that there was a cure for epilepsy.

Thank you for your time, Lisa. I really appreciated our chat