VNS (and general epilepsy) Update (35 Weeks)

I’ve now had my VNS implant for over nine months, that’s the same amount of time that it takes for a baby to grow in its mother’s womb. And as much I’d love to say VNS has created a whole new life for me, it’s not quite that simple.

The five months since I last wrote an update have been pretty crazy. At the end of April until the middle of May I went 4 weeks and 6 days without a single seizure. It’s the longest I have been seizure free in probably almost ten years and for the first time in my life the idea of not having seizures didn’t petrify me. During that time something seemed to click, I felt like I had come to terms with my condition and was ready to face whichever direction it took me in next. Unfortunately, a couple of weeks ago things begun to get worse again.

I had a cluster of three seizures and after the third experienced really bad Todd’s Paralysis, barely able to talk for over an hour. Due to the fact that we’d been experiencing stress in our family, on top of the pandemic that’s currently running havoc across the world, I assumed this was just a blip but my mum contacted my epilepsy nurse nonetheless.

I was supposed to see my nurse back in May but due to COVID the appointment was initially postponed until the end of August. Luckily we were able to get an appointment to see her last week. The thing with VNS is, it cannot be monitored or altered by anyone other than the epilepsy nurse (and her magic wand). For me, not being able to obtain any data reduces that sense of control that VNS should be giving me, so having to cancel that original appointment really stressed me out and left me feeling frustrated.

I explained the three different modes of VNS in my previous update, so if you’re not aware of what they are go check it out here before reading on.

The comic I drew about my VNS journey!

At my previous appointment the auto-stim was triggering on an average of 20 times a day, one of the changes we made then was increasing it’s sensitivity during the day and it is now triggering on an average of 42 times a day. This is good as it means it’s doing a lot of work, unfortunately a lot of the time it’s picking up false negatives and I’ve been finding that the device goes a bit wild if I’m out walking and talking, causing my throat to dry up and making me feel like I can’t breathe.

The auto-stim activity generally seems to peak at about midday and 9pm. It makes sense that it’ll perk up in the early afternoon as that’s when I tend to do so too but I’m rarely doing anything other than sitting in bed on my laptop at 9pm. I also noticed that it seemed to almost go to sleep at 3am, the time when I most frequently begin to have seizures, so weighing up all the data we decided to increase the night-time settings from 12am-9am to 9pm-10am, as well as increasing the strength of normal mode during the night and equalling out the auto-stim sensitivity levels.

It took a few days for me to get used to these changes, any increase in power is always painful at first but I definitely seemed to tolerate it a lot quicker than the original increase at the start of the year.

Since then I have had one more nasty seizure, my parents are assuming it’s due to my body readjusting to the device as I experienced a small increase the last time we altered things too.

As my last seizure was only one and not a cluster I got up much quicker and could feel that the Todd’s Paralysis was also messing with my left leg, I couldn’t put any weight on it and actually ended up falling, making a very loud bang, in the evening. My left leg is already a bit dodgy, as due to hyper-mobility I have a slightly twisted hip, so this resurge in Todd’s Paralysis is concerning.

One of the other things I missed out on due to COVID was my blood test that I’m meant to get done every three months. My main AED is called Phenytoin, it’s one of the oldest and most efficient anti-epileptic drugs out there but if the levels get too high in your blood in can cause severe toxicity and make you very ill, so I get a blood test frequently. My GP refused to give me a blood test form, due to the fact that there seems to be unofficial rule to only hire rude people as receptionists and also COVID, but my consultant booked me in for one at her hospital. The plan is that if my levels are not elevated, we can discuss increasing my phenytoin dose to battle the recent increase in seizures.

I do find this sudden increase frustrating as I was hoping to reduce and even wean myself off of my second AED by the end of the year, I hope that if we increase the phenytoin dose I’ll be able to get my seizures under control and at least partially combat the Todd’s Paralysis too. Right now that is my priority and I just hope my amazing consultant has some ideas (I’m due to see her at the start of next month).

I know that this has been a very long blog, discussing a lot that is on my mind right now but I’ve received several comments on my previous VNS updates so feel it is important to keep writing about everything, not just for myself but others as well. Despite all the ups and downs and the general chaos currently wreaking through the world, I’m still maintaining a reasonably positive outlook. The simple fact is that I going nearly five weeks without a seizure, outweighs the negativity of my recent increase, it seems what ever clicked back in April has remained in place.

As my conclusion I want to say that I feel part of that perspective change is down to Young Epilepsy. I’ve worked with multiple charities in the past but no other organisation has ever seemed so certain of what it is that they need to do. Joining the Young Reps group has given me a new focus, an outlet and a group of other young people riding in the same rocky boat as me, always there if I need some empathetic (and not just sympathetic) support. I really admire all the members of staff I have worked with so far and can’t wait to keep helping them move forward and up.

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