Our phone chat #17 – Steph

Maria: Hi Steph. I know that you have been itching to tell me your story.

Steph: I am because I am trying to process what is happening to me with regards to my seizures and anxiety levels.

Maria: In a previous conversation you mentioned that there was an ‘old you’ and a ‘new you’. I am interested in knowing more about that.

Steph: In my old life, I was a personal assistant to a CEO of a large insurance company in London. Life was fast, I drove a car, lived life to the full, and I was in a stable relationship. Life couldn’t have been better. Then something went quite wrong when I returned to New Zealand. In fact, my life spectacularly fell apart after I had my first tonic clonic seizure.

From then on, I felt my old-world crumble. Anxiety and depression took hold and my seizures became uncontrolled. The longer I had epilepsy, the more my anxiety grew and I worried what people might think of me if I had a seizure in front of them. I didn’t want to ruin their day and so I started staying at home more. I became really stressed and depressed

Maria: Oh dear! I am so sorry to hear about this. In the past you have described your epilepsy experience as like playing in a game of ‘snakes and ladders’. Can you explain that to me please?

Steph: I have taken lots of different anti-epileptic medications over time and, with each new medication change, I hoped to find seizure control. My life did feel like a game of ‘snakes and ladders’. Some days I would feel upbeat and positive like I was winning the game but then I would slide down right to the bottom and feel quite deflated. I found it hard living with drug-resistant epilepsy and so I started having some frank discussions with my new neurologist.

Maria: Those discussions have been a turning point in how you are managing your epilepsy. Has your neurologist helped you to become a ‘new you’?

Steph: He has! He has helped me to take a more positive approach in life. He is a great supporter of the ketogenic diet and so I decided to give it a go. I lost lots of weight on the diet and my seizures were starting to get under control. For the first time since developing epilepsy, I felt that I was also getting on top of my anxiety and depression.

Maria: You did marvellously well on the diet but you found that it wasn’t sustainable. What happened?

Steph: Having to be so strict on the diet was hard work especially with a teenage son eating me out of house and home, and so I started looking at other options to control my seizures and I think that I have found it. Some really kind person is sponsoring me to trial cbd (cannabidiol) and, so far, I think that things are working for me. I feel like I am back in the race. Life is no longer a struggle but it is still early days.

Maria: What have you noticed whilst being on cbd?

Steph: I have now been on CBD for four months and it has significantly reduced my focal seizures and they are not as intense as they once were. Every day I see a difference in my life. My confidence is coming back and I have more energy. My life is racing up those ladders and I have had very few set-backs so far. I have hope for a positive future but there is one big snag in all of this.

Maria: And what is that?

Steph: Am I going to be able to use CBD for the rest of my life if it works? The idea of it not being available scares me so much. My sponsor pays my monthly CBD costs of nearly $600/week since Pharmac does not see my need as being exceptional, as there are others like me living with drug-resistant epilepsy.

Maria: At least 30% of people living with epilepsy are drug-resistant.

Steph: Yes! And so, what options do we have in life once our medications have failed? I am sure that it is costing the healthcare system lots of money to pay for my medications, hospitalisations, in patients/outpatient care, psychologists, psychiatrists, and counsellors. And I wouldn’t be the only one needing that level of support.

Maria: That is an interesting thought. Deloitte in Australia did a large study on the economic burden of epilepsy in 2019-2020 and found that people living with active epilepsy was costing their country a total of $12.3 billion a year. There are health care costs such as the use of MRIs, EEGs etc, financial costs that includes lost wages, absenteeism from work, production loss, equipment costs, welfare benefits, and then of course there is the human cost.

Steph: I just want to have hope that my life is going to get better. I want to be able to have a tattoo and go sky diving. I want to have a job, get off a benefit, and go on a date! Do you think any of that would be possible?

Maria: Once you choose hope then anything is possible. Thank you for sharing your thoughts with me today, Steph. You have given me lots to think about. Take care and I will watch this space as you continue your epilepsy journey.