In sharing my story, I hope to help you understand you aren’t alone. I understand you feel like it and the best advice I can share with you is to know it’s a process of accepting your diagnosis and there are so many more resources to help support you today. Everyone’s experience is different, yet I think first it all starts with coming to terms and accepting that you have seizures and how it affects you mentally, physically, and personally in all aspects of your life. That’s the first step. And I really hope you have a support group whether it’s friends, family, or an epilepsy organization. That makes all the difference.
Especially if you don’t have a support group and you are in the United States start educating yourself by looking up the Epilepsy Foundation of America and seeing if there is a Chapter near you. Call them with any questions you have and connect with their 24/7 support hotline anytime. I highly recommend this as I wish I had done it! It would have provided support and saved me so much time and heartache. They have an English and Spanish line. If you live in the UK there is a similar organization called Epilepsy Society and they have many of the same services and education.
Today, there are also so many new resources available like Brain Ablaze and what David Clifford is doing to connect and share our experiences and education.
Also, an amazing discovery I made about a year ago is nEureka by Novela Neurotech. They provide a new 24/7 support system for you with medication reminders, seizure tracking including a ring you can wear at night and a watch you can wear during the day, and they provide all the data and reports to share with your doctor. You can also reach your caregiver and request help anytime at the tap of a button. They are constantly evolving and now have an app available on some devices. Check out these patient reviews and I highly recommend reaching out to them if you are interested to try it!
