There is literally nothing like having a Doctor who listens to you, respects your viewpoint and input, and encourages you. I got diagnosed with non-epileptic seizures while in uni and for the first time I actually feel like I’ve got a great team helping me.

Non epileptic seizures carry a lot of stigma. Many medical professionals think you’re faking it for attention or it’s “not real” so it doesn’t matter how much it interrupts your life. I’ve had some truly awful things said to me over the years!

A couple of years ago after a tilt test, we realised my big tonic-clonic style seizures were triggered by my wonky autonomic system, and lying upside down with my legs up and drinking water and eating salt can prevent them from happening at all 90% of the time.

But because of that, we realised I was also having 10-20 second absence long seizures that I didn’t even really know were happening and so decided to go back to neuro for some help and clarity, which was hard when I’d literally been told “I don’t know why you’re here” before

I just got off the phone this morning with my neurologist who is so supportive and encouraging, and we’re going to Sherlock Holmes our way to working out what’s setting these off (probably overstimulation). But for the first time I have a team to do it with.

One of the things you might not know is that often people with non-epileptic seizures get their diagnosis and a course of CBT and the door, even though they can be caused by all manner of things, have limited treatment options (no meds!) and significantly disrupt your life.

This is kind of why I go on about seizures so much, because so often many of us have been left without help and have to work it out ourselves. But I’m so glad that for the first time I actually have someone to help me with that. Nothing’s changed but the future feels brighter.