Epilepsy New Zealand

06/11/2025

Let's Talk About It
This month, we are excited to share narratives directly from our incredible community. Enjoy this story, expressed by a wonderful lady and told in her own words. Great to hear that the school where she works has been so supportive.

"Developing epilepsy out of the blue at the age of 39 was a shock. In saying that though, I had said to my husband a few times before that something doesn't feel right, I have constant fuzzy vision and that I have been having this weird DeJa'Vu feeling. Then wham! Woke up one night with the ambos in our room. I couldn't understand why they were there or what was happening. They said you had a tonic-clonic seizure in your sleep. A whaaaaaat?

I went to the hospital, had a CT scan that was clear and then told I would have a neurologist appointment. That rolled around and he told me I have epilepsy. But I have only had one seizure! He told me that after describing what my head has been like I will have another one and that it will probably be in around 3 months' time. Thanks for the heads up, sir.

Sure enough, almost 3 months to the day I had 2 seizures in one day. After an MRI and EEG that showed nothing, I was diagnosed with epilepsy and put on lamotrigine. After that it became my new normal. I have very few memories of that time as it was a blur but I haven't had a tonic clonic since going on medication. I have had many focal seizures though. Even when I am not having seizures my epilepsy means I get overwhelmed, my brain gets tired, words get mixed up and I get cranky. (Mind you, that may be just menopause)

The worst part at the time was having a young child who was already quite anxious and a husband who had had a lot of trauma in his life and so I was trying to be strong for them. But I learned that self care is so important and now I try to remember to get plenty of sleep, eat well, very little alcohol, lower stress levels and TAKE MY MEDS.

I work in a school and they have been fantastic. I have had a few focal seizures in front of the kids and the other staff have just rolled with it and taken the kids out because I don't know where I am or can't talk. Then someone drops me home and i have a nap. I was a bit naughty last year, though. It was our end-of-year work function - an "amazing race." I actually had a seizure that morning but was determined to still take part despite my husband not being happy about it. We drove all over town (well, obviously not me driving) doing all sorts of crazy dares and activities, including going on the paddle boats at the Groynes. The last stop was at a pub where I had a glass of wine, then went home and went straight to sleep. It took me 2 days to recover from that, but I had so much fun and didn't let my team down.
Epilepsy sucks, but it is what it is, and it's just one part of me. Thanks for letting me share my story."

06/11/2025

A huge Thursday Thank You to the Sutherland Self Help Trust for funding 12 new Companion seizure monitors. These units will be loaned out to families, helping give peace of mind. These new units are an upgrade of our popular seizure mats, which are now nearing the end of their lifespan.

Smaller, more customizable, these units can even record some seizure information, helping in diagnosis.

Theses units were supplied by Te Wana Ltd. Thank you to Jonathan who has worked closely with us to learn what clients need and how he can help provide the equipment to help people in tough times.

Thank you.

https://sutherlandselfhelptrust.org.nz/
https://tewanaltd.co.nz/

04/11/2025

Let's Talk About It
If you had just one minute to convey your message about epilepsy, what is the most important thing you would want others to understand above all else? Write in the comments below.

02/11/2025

November is Let's Talk About It Month
It's a great moment to start that conversation you've been hesitant about. Open up, be courageous, and share what your family, friends, or colleagues should know about living life with epilepsy. We're all here to support and learn from each other. The more people know, the more we hope they will understand. If you would like to tell your story, fill in our online form https://epilepsy.org.nz/you-can-help/please-support-our-current-appeal/lets-talk-about-it/

31/10/2025

November Is Talk About It Month
This allows us to listen, share, and support one another. What part of your epilepsy journey would you like to share with others to foster understanding of the condition or to empower someone in their own journey? Write in the comments below.

30/10/2025

A Thursday Thank You to TECT. for over 30 years they've been supporting community groups in Tauranga and the Western Bay of Plenty area.

We're grateful for their ongoing support, helping Christine deliver support and training to the community.

Thank you.

https://www.tect.org.nz/
https://www.facebook.com/TECTNZ/

28/10/2025

What's on in Southland?

Pop along to the Health Expo in Winton on the 5th Of November. Our regional educator Hilary Thorne will be there., so pop on over to say Hi and introduce yourself.

27/10/2025

Stress - Final
Over the last few weeks, we have been looking into stress and the factors that are associated with it. Always seek professional advice and support if your stress and anxiety levels are becoming overwhelming daily.
On this useful website, you can find many things to support you during stressful times.
https://www.smallsteps.org.nz/stress

Other useful websites for stress, anxiety and mental health.
Our own Epilepsy New Zealand website https://epilepsy.org.nz/managing-epilepsy/living-with-epilepsy/stress/
A free online private therapy courses designed by clinicians to best support you and your needs to wellbeing, so you can gain the skills to look after yourself and your mental health to stay on track and live your best life. https://www.justathought.co.nz/
For youth, The Lowdown is a website to help young New Zealanders recognise and understand depression or anxiety. https://www.thelowdown.co.nz/

A guided deep breathing exercise to help you feel more calm & relaxed. All Small Steps tools are free, easy-to-use, & take only a couple of minutes.

26/10/2025

Stress - mini series 6
We all encounter stress from time to time. Simply put, stress arises when we feel pressured—whether real or imagined—and think we don't have the resources to handle it. In these moments, the demands of life seem to outweigh our ability to manage them effectively.
Identifying your stressors is key. Once you recognise what's causing your stress, you can either put it into perspective or take action to manage it better. Problem-solving techniques can help you understand the issue, explore possible solutions, and choose one to pursue. Some challenges, like meeting a deadline, might be beyond your control, but you can reduce stress by focusing on what you can control—like organising tasks by priority, delegating when possible, and seeking help when needed.

23/10/2025

Stress - mini series 5
Factors related to stress can sometimes make seizures worse for some people. Everyone experiences stress differently, so it's helpful to figure out what specifically is stressing you out. When we're stressed, we might react negatively to others. It helps to understand why you're reacting a certain way to someone; by identifying and addressing these stressors, you might improve your interactions and reduce stress.

23/10/2025

Today our Thursday Thank You goes out to two community organizations, one in the North Island and one in the South Island.
Both these funders are covering regions where we don't always have boots on the ground but our educators visit regularly and stay in touch with clients.

Firstly, to Whanganui Community Foundation for funding Dianne in her work covering the region. they've been a steady supporter of our work for many years and we really appreciate it.

And secondly to the Central Lakes Trust. They support groups working in the Queenstown and Central Otago region. Thank you for their support for our work and for their support in putting together the latest grant application.

https://www.whanganuicommunityfoundation.org.nz/

https://www.clt.net.nz/

Whanganui Community Foundation's purpose is to achieve greater social wellbeing and connectedness for the people of the Whanganui region.

21/10/2025

Stress - mini series 4
We've been discussing stress and its potential to heighten seizure activity for some individuals. Do you have a helpful tip you'd like to share to help others manage their stress levels?