Last Wednesday morning, whilst staying at my grandma’s, I had two seizures. And although they left me feeling sore and frustrated for the first time in a long while they didn’t leave me feeling hopeless.
You see, four weeks ago I had my first follow up appointment with my Epilepsy Nurse since we switched on my VNS device 20 weeks ago today. She was excited and impressed by the difference it has already made to my life, especially considering that the benefits of VNS are accumulative, increasing over time. We discussed how the size of my clusters has reduced drastically and so too has my recovery time. However, my nurse concluded that improvements could still be made as my seizure pattern hadn’t changed (still occurring every two to three weeks). I was aware that VNS devices can be adapted before I had my surgery but even my very tech-savvy mind was completely and utterly blown by the extent to which it can be customised to suit each patient individually.
VNS has three modes:
- Normal- When the device delivers the lowest level signal every five minutes for 30 seconds (this is constant).
- Auto-Stim- When it recognises a rapid increase in heart rate so automatically sends a medium level signal for 30 seconds.
- Magnet Mode- When I or someone else swipes a strong magnet (provided with the device) across my chest, triggering the strongest level signal for 60 seconds.
Like most humans I’m not aware of my own heart rate, so wasn’t sure if the Auto-Stim had been doing anything at all. But, via the magic wand, my nurse was able to show me that it has in fact been triggering an average of 20 times a day, potentially preventing just as many seizures. These stimulations peak just before I go to bed and just before I wake up, which isn’t surprising when you consider that most of my life my seizures have been mainly nocturnal. So after some deliberation, we decided that rather than increasing the overall power of the device, altering the way it works at night made the most sense for me. Between Midnight and 9am Normal Mode now switches on every three minutes instead of five and the Auto-Stim is 10% more sensitive.
Although it took a few days to get used to these changes, I felt a difference almost immediately. I know this is probably partially the placebo effect, but for the first time in my life I begun sleeping all the way through the night and the two seizures I had last Wednesday was the first cluster I’ve had in nearly five weeks!
I won’t deny that this past weekend I’ve been very low, probably the most depressed I’ve been in months. But every thick grey cloud I felt looming over my head had a thin, glimmering, silver-lining. Because I can still see the prospect of one day being seizure free (an idea that is terrifying). This time last year I was barely going a week without at least 10 seizures, now I’m going over a month and only having two! For the first time in years there is genuine hope and I feel confident enough to start taking steps forward with my life.
I will never be ‘cured’ of epilepsy. It’s a significantly large part of who I am and I am super proud to say that. But I now know there is chance it won’t forever hold me back. Life will never stop being tough, but thanks to a tiny piece of phenomenal medical technology it’s beginning to look a little bit easier and the future looks a whole lot brighter.