In October 2023 I went to a functional neurologist as a last ditch effort after two years of seeing a variety of doctors to help with my severe anxiety, depression, and high heart rate (resting was over 120 bpm).Â
The doctor told me he could help and that trajectory has transformed mine and my children’s lives. Three days into his intensive treatments, he discovered I had peripheral nystagmus. We have since realised it’s congenital and was never caught – even though I had developed a lazy eye at 2 years old and have worn glasses and contacts since then for far-sighted vision.Â
There were a lot of things I always questioned. Like – why was my far sighted vision blurry when I supposedly was far-sighted? Or why was my depth perception and size guesstimation off? Why did stress literally debilitate me for weeks and how could anyone else handle stress, when it felt so debilitating to me? Why did busy days, field trips or a full day of work exhaust me? Why did people keep saying I over reacted when I tried to stand up for myself? And so many others. Â
It wasn’t until I started working with the neurologist to calm my eyes and brain that I realised the way I had always lived was so much harder than what life should have been. I cry so often thinking of how much better of a mother I could have been if I had been treated younger, how much different relationships would have been if I wasn’t constantly in fight or flight mode and just how different life would have been in general. I am so grateful for finding a functional neurologist who has listened to my lifetime of issues and has linked it all back to my nystagmus. He has helped in so many areas that I didn’t even realise were issues because I thought it was “normal”. Just knowing what the cause was for all of my issues has been a God-send, but to constantly have someone in my corner who helps to give me a better quality of life is an answer to my prayers and more than I deserve. Â
As mentioned above, he has also helped both my children, one of whom also has nystagmus – we now believe it is congenital, peripheral, dart nystagmus. His manifests are anxiety, loud noises, ADHD, lack of focus and spacial awareness, unaware of time (it takes him forever to do tasks), etc. His progress in the last year alone has been remarkable! Some of his ticks are gone and he’s more aware of himself in time and space. I am also learning how to parent him better. I am grateful that we caught his at the age of 10, while his brain is still developing. So he will have support and resources needed as well as receive treatment while his brain is still developing for the possibility of healing his eyes and brain permanently!
My son and I both find so much relief and support in knowing our conditions. With our treatments, we both feel our brains calming down and others have noticed a difference as well. We strive to not only heal ourselves, but to find ways to raise awareness and cures.