Just some small thoughts

I’m currently working on rebranding and updating my site. As part of this process I decided to finally categorise all the blogs currently on here. Of course some of them are over a year old, so I read over them to establish just which category/ies they best fit into. It really is mad looking back and realising just how much has genuinely changed.

I mean this time last year I thought I was mentally in a good place. Then I collapsed into an abyss of depression before coming out of it and finally knowing what ‘good’ actually feels like. This time last year I thought my seizures were well controlled. Then I got VNS, fiddled with my meds and the device settings and realised what control really is.

Right now I am just so grateful to be as well as I am. I won’t deny I’ve been feeling wobbly these past few days. Anxious about an array of little issues and not quite sure how to categorise them. When I can’t sieve through my stress, I can’t over analyse the situation in order to fix the problem. But I have enough going on right now to distract myself just enough to keep on pushing forward.

As autumn blooms into its full, it’s close to one year since I had my VNS surgery. And although I’ll discuss that in greater detail nearer the time, that device really is at the core of everything that’s improved during this past year. Just last week I woke up with a bitten lip and sore limbs. I checked my phone to see whether my watch had picked up on anything. Sure enough my heart rate had spiked at about 8am. My dad later confirmed that about that time he’d seen me coccooned in my duvet. For me those small things, added together, were enough to confirm a potentially ‘major’ seizure had occurred and my little buzzer had successfully prevented it from escalating. This device is working!

Even if I am petrified of COVID, dating, living with excruciating pain and not getting a job, knowing I genuinely have control over my seizures is enough to give me that little spark of hope that I need to keep on going. And it is through this blog, and soon this site, that I intend to truly push forward.

I am scared that this sense of uncertainty and anxiety I’m feeling will continue to increase. But as the awesome pop punk band Free Throw said,

I might feel fixed, but I still need maintenance

I can feel new and still need repairs

When I feel like shit, and I feel complacent

Can I be sure that it was really fixed?

I will always have. mental health issues, I will always have seizures. But as long as I continue with my personal maintenance, i can survive. As I mentioned in my previous post, I am excited fr this coming year. I’m confident that good things are still to come, even if I do need to repair myself along the way.

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.

VNS Update (20 Weeks)

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.

VNS Improvements (10 Weeks)

Yesterday marked 10 weeks since my Vagus Nerve Stimulation (VNS) Device was first switched on. Although the implantation surgery and the few weeks that followed it were very difficult (read more here) the difference I’ve noticed in just 70 days makes it all worth it.

When my consultant first suggested VNS I was highly skeptical, all my life surgery had been an unviable treatment for my epilepsy, I felt as though it was a last resort and I had to come to terms with the fact that I was ill enough that we turning to our last option. However, after my initial appointment with the surgical team I begun to see VNS as a potential light and the end of the long dark tunnel called 2019. I knew VNS would never cure me, I came to terms with the fact that I will forever be a person with epilepsy a long long time ago, but there were two things I hoped it could improve.

The first was the extent of my clusters. All my life my seizures have been mainly nocturnal but the clusters have become so large (reaching 30 in as many hours) that they continue throughout the day too. This is completely debilitating, each seizure is physically like running a marathon so the more I have the longer it takes to recover. It also means I have to take more additional medication, draining me of the final ounce of energy I have left. Since my device was switched on the largest cluster I’ve had is five (this past week). Although that is still a lot it seems to be a bit of an anomaly when it comes to seizures post surgery. Last month I excitedly messaged my best mate about the fact that I’d only had one seizure. He couldn’t understand why I’d be celebrating a seizure at all but that was just it, I’d had a seizure. I don’t remember the last time I only had one, so even after a tough week I’m clinging on to that. The concept of just one seizure still blows my mind but it is possible!

The second thing I hoped for was more control. I hoped that if, whilst out and about, I experienced an aura, I could trigger the device and consequently reduce the severity of or even prevent the actual seizure. Since being switched on, all of my day time seizures have so far taken place at home whilst my magnet was in another room. I’ve not been able to prevent any seizures but I’ve not become unconscious or experienced what I’d refer to as a ‘full-blown seizure’ either. Although I don’t yet have enough evidence to prove that on-the-go control is a possibility, VNS has given me hope and consequently confidence. I now feel safe travelling/commuting alone, I no longer have to be escorted every time I leave the house. This is the key difference that VNS has made, it’s given me back my hope for independence.

One improvement I wasn’t necessarily expecting is the fact that my recovery time has reduced drastically too. Last week after having a seizure, I’d got up, gone to the loo and was pilling my cat within five minutes of coming round. This combined with the overall increase in control rapidly increases my employability. I’m no longer requesting two weeks off every two weeks but rather one or two days every three weeks or so.

However, it is important to say that these improvements are not solely down to VNS, it’s equally due to finally find an Anti-Epileptic Drug (AED) that actually does it’s job. It’s this combination that highlights the just how amazing modern medicine truly is. I know I will always have epilepsy, which means I will always experience seizures. But for the first time in a long while I can finally begin to look forward to a brighter, more exciting future.

My VNS Journey So Far…

Two weeks ago today I returned home after receiving my VNS Surgery. Describing these past 14 days as a rollercoaster would be an inadequate understatement.

I only received the date five days before the operation took place. Very little information was given to me, meaning a large pile of anxiety and stress was left brewing inside of me for all of that time. Considering this is an epilepsy treatment and epilepsy and ASD so often come hand-in-hand, I do feel the staff at the National Hospital for Neurology and Neurosurgery should have been better prepared to deal with an atypical patient but they weren’t.

The actual surgery went smoothly but the before and after not so much so. Beforehand, I was left hangry and dehydrated, waiting in a small room for most of the day. And after, I was ‘forced’ to stay on ward, in a bed that wasn’t mine, surrounded by people I don’t know. Luckily I was doped up enough that this didn’t bother me too much in the end, despite the fuss I made beforehand (I refused to pack an overnight bag, meaning my parents had to rush around town looking for pjs etc.).

The nurse changed my dressings for me on ward to the waterproof ones, however, they only had dressings that were either too large or too small for my wounds. This meant they overlapped each other and whenever I moved I could feel my skin being tugged. This is something most people wouldn’t find distressing, but as someone with over-sensitive touch I could not cope. My mum and I changed one dressing the next day at home, using two small ones to cover the wound instead of one large. This drastically helped with my physical issues but triggered more anxiety as we’d been given very little information (yet again) about the actual wounds and how to deal with them.

Then came the worst. I spent most of Thursday to Monday in full-blown meltdown mode. This is what happens when everything simply gets too much for someone with ASD. The analogy most commonly used is a water-jug that is nearly full and then with a tiny drop overflows, drastically. I essentially lose all control of my behaviour and thoughts. I become aggressive towards myself and others and develop strong suicidal thoughts. Of course this had a huge effect on all my family and lead to some rifts. However, after a visit to the GP my dad and I realised it was caused not just by the stress induced on me by my surgery but also the fact, that at the time, I was taking pretty much no anti-depressants at all. Since increasing my dose last week we’ve already noticed a huge difference and all has been forgiven. These meltdowns were far more common a few years ago, taking place weekly when I first started university. So I’m clinging on to the fact that this is probably the first I’ve had all year and doing all I can to learn from it.

If physical irritation, severe-depression and surgery pain wasn’t enough, I also returned home with what I’m calling Hospital Flu. This horrible cold then lead to my gums becoming inflamed giving me horrific toothache.

Two weeks on from surgery, my dressings are off and I’m feeling 90% normal me again. Everything is beginning to look bright. As difficult as this journey has been so far, I’m hoping it’ll be worth it.

VNS is basically a seizure pace-maker. A stimulator is placed just below the skin in your chest which then sends mild electrical signals up through a wire attached to the Vagal Nerve on the left side of one’s neck. These stimulations help calm the irregular electrical activity in the brain and can be boosted when a seizure occurs. There is a 2 in 3 chance that this’ll reduce the severity and/or frequency of my seizures. It is those stats that I’m currently clinging on to. These two weeks of anxiety and discomfort could give me a chance at a fully independent life, something I’d almost given up on at the start of this year.

My stimulator will be switched on on 28th October at its lowest possible setting automatically increasing every two weeks until it reaches the ‘comfortable’ rate. From the moment it is switched on it can be boosted, so although I hope we won’t need to test it (my meds seems to be doing well at the moment), we should be able to see whether it works or not pretty soon.

I could go into far more detail on all aspects of this experience, and may do so in other blogs, however, this has already gone way beyond my normal blog length. If you know anyone potentially facing VNS please share this to them as just a little first hand knowledge can go a long way.