Epilepsy Awareness Day ♡ My Story (So Far!)

By now, most long-time readers and Instagram followers will know that I have epilepsy. I am still in the middle of finding the right “fix” to my seizures, so it feels somewhat strange to tell my story when it’s still being written, but once I found out that March 26th was Epilepsy Awareness Day, I knew this post was inevitable.

The real reason I am writing this post is not to tell everyone that I have epilepsy – because, as I said, most of you will know that already – but to raise more awareness of the kind of epilepsy that I have, as it’s something that I suffered the consequences of for over 22 years before I realised it was epilepsy.

Lots of possibilities entered my mind for what it could possibly be – which I will go into later on – but epilepsy didn’t even enter my mind as a possibility, and I believe that’s because I was misinformed about epilepsy for most of my life.

I don’t know about the rest of you, but when I think of epilepsy, I think of seizures that cause people to shake uncontrollably, fall down, and possibly injure themselves whilst doing so.

Whilst those seizures are very common in epilepsy, they are not the only kind of seizures that epilepsy can cause. I know this because my own seizures are very different, and that is why I am writing this post: to raise awareness of the kind of epilepsy that I have, which is called focal epilepsy.

FOCAL EPILEPSY + MY SEIZURES

Having focal epilepsy means that I have focal seizures, which can also be called partial or localised seizures. I’m not going to go into any medical specifics of it because, frankly, I don’t understand a lot of it, but you can feel free to do further research on it if you wish.

My neurologist hasn’t told me whether my seizures fall under the aware or the impaired awareness category. Whenever I read up on the difference between the two, I find that they both seem to describe what happens to me as not every seizure is the same, but once again, I don’t know for sure.

Usually, my seizures begin with things called auras, but most people without epilepsy don’t know what they are, so I just say hallucinations, which is a common way that people who have auras describe them. For me, whenever I have an aura/hallucination, I feel like I am in a room that I’ve been in before, but can’t quite put my finger on where it is. I get this feeling no matter where I am during a hallucination, even if it’s somewhere I have never been before.

This is common with auras. Most people who suffer from them describe them as having deja vu the entire time, and that’s exactly what it feels like. Sometimes I will have multiple auras all day long before I finally have a seizure, sometimes I have just one aura and instantly have a seizure afterwards, and other times I have an aura I am able to put myself in a different environment by altering the lighting and relaxing, which can actually stop the seizures from happening.

My actual seizures are very hard to detect unless you know what to look out for. Since I’ve been living with Daniel for almost 6 years, he knows each and every sign to look for, which is why I almost never leave the house without him. I can’t actually remember the seizures after they’ve happened, but I’ve had them described to me. Unfortunately, just like my auras, my seizures change each time too.

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Sometimes I just won’t talk or move at all, and I will just swallow continually, which is common with these kinds of seizures. Other times I am able to tell the people around me that I am having a seizure, or that something is wrong, and then I just sit down for a while.

Occasionally I forget who and/or where I am, and won’t know the names of people around me. There have also been times where I have been able to continue doing whatever task I was doing, but I become aware that I had a seizure afterwards because there’s a chunk of time passed that I have no memory of.

I realise how lucky I am to have this kind of epilepsy, because it could be so much worse. I am very lucky that I don’t fall over and put myself in immediate danger, but my seizures are still terrifying to me because I have no memory of them, and no control over what I do or say whilst I’m having them. I don’t walk to work or use public transport alone because I am too afraid that I might have a seizure and stop in the middle of the road, cry for help, or go off with a stranger.

My neurologist is also very against me cooking or driving until my seizures are sorted out as well, which greatly affects my hopes of getting my license and a full time job by the end of the year. This also ruined my plans to work really hard on my baking skills this year, in hopes to improve more than ever.

As will be expected, I have my good days and my bad days with my feelings towards epilepsy. On good days, I think about how lucky I am not to have something worse. On bad days, I am heartbroken that I am almost 23 and essentially have to put my life on hold until my seizures are “fixed”. However, I can honestly say that I believe I have many more good days than bad, so life is still looking up.

THE JOURNEY TO DIAGNOSIS

As I said earlier, I was already 22 by the time I found out that I had epilepsy. However, the earliest memory of a seizure I have is from waaaay back in high school. Year nine, I think it was. I was with my then-best friend and then-boyfriend and I remember not speaking or moving, but hearing them talk about me. My then-boyfriend made a comment on how I was acting, and my then-best friend said something like “yeah, this happens sometimes”.

That’s the only memory of a seizure I have before I was with Daniel, and that really makes me wonder how often I had seizures, and how often other people witnessed them but never said anything about it. As an only child who was raised by a single parent who was always either at work, asleep, or with a partner, I was alone a LOT as a child, so I could have had seizures quite often, but no one was around to realise.

Once I started living with Daniel, we both realised something was wrong. So, I started doing research. Not surprisingly, my first few theories were incorrect. At one point I was convinced it was dissociation, which I talked about in one of my most popular posts ever about the side effects of anxiety.

In that post, I link to another post that describes my seizures and even then I mentioned that it could be epilepsy, but I still didn’t truly think so, because what I thought epilepsy was didn’t match up with what I have.

On a more extreme note, I thought there were much worse things wrong with me. I thought I was getting early dementia, or had a tumour of some sort. I began to get very worried that something was very wrong with my brain, and that feeling made me feel torn about wanting to get an answer, which is why it took me so long to finally go to a doctor. I am SO glad I finally made the decision, I only wished I had done it sooner!

I actually went to the doctor about my seizures for the first time in 2017, who decided after 10 minutes of talking that he thought it was just anxiety and gave me a prescription for anti-depressants. I was floored. I knew I had anxiety – it’s not much of a surprise considering my upbringing – but I also knew that whatever was happening to me was NOT just anxiety, because it was happening at completely random times and didn’t seem to be related to my feelings at all.

I never went to get the anti-depressants because I knew I didn’t need them, but I was super down that this doctor has dismissed me so easily. It took me quite a while to go back to a different doctor – months, in fact – but I eventually did, and that doctor instantly referred me to a neurologist, which finally got the ball rolling. In hind sight I should have gone to get a second opinion immediately, but I really didn’t want to be ignored again.

THE CAUSE OF MY EPILEPSY

It took two EEGs and an MRI to figure out that I had epilepsy. After my first EGG nothing came back, then I was told to stay up all night for the next one, which came back with some unusual brain waves. A few months after that, I had an MRI – which was terrifying, I’m not going to lie – which I got the results back for on the first of March.

The first thing my neurologist said was that there was no tumours, cysts, or anything else that might be considered a threat. Obviously, this was good news, but I already knew it was epilepsy after the second EEG, so I had put the possibility of a tumour out of my mind. I didn’t realise that a tumour could cause epilepsy, so that would have been a huge shock to hear if I actually DID have one – but I don’t, so it doesn’t matter.

The first person who viewed my MRI scan found something unusual on it, and I honestly can’t remember exactly what it was, but my neurologist explained that it was on the other side of my brain – not the side that causes the seizures – so whatever it was, is not the cause of my seizures. It’s also not anything to worry about, he said. However, he also found something else that the first person did not see, and what he found is the thing that he believes is causing my epilepsy.

What he found was grey matter in parts of my brain where it shouldn’t be. As the brain develops, this matter is supposed to move away from a certain area, and towards somewhere else, but not all of mine did. Essentially, this means my brain is somewhat underdeveloped, and that I was born with epilepsy.

Just hearing that it was something I was born with was a HUGE relief. Knowing that it wasn’t anything I had done – it wasn’t my daily caffeine intake, or splitting my head open as a kid, or the trauma I went through because of the fires – it was something completely out of my control.

WHAT COMES NEXT

The first time I saw my neurologist was after my second EEG – since something had come back that wasn’t normal – but before my MRI. Even though I hadn’t had an MRI, he still was confident enough to diagnose me with epilepsy and put me on medication. This happened around October last year. He still set up an MRI appointment for me – which happened in January – to find out why I had epilepsy, which was definitely beneficial.

I started taking the medication straight away. I was told to take TWO 500mg tablets of Keppra a day, 12 hours apart from each other, so that’s exactly what I did. I bought a day of the week pill box and set morning and night alarms on my phone, as my memory is abysmal – which is common in people with epilepsy – and they both helped keep me on track. For the first two months, the medication worked PERFECTLY. I had zero seizures OR auras, and I was over the moon.

However, a few days before Christmas, I got a cold and the seizures started again. I was crushed. I thought it was because of the cold and flu tablets I had taken, as I hadn’t realised they said “ask your doctor before you take these if you have epilepsy”, but my neurologist assured me that the ones I had taken would not affect me or my medication at all, and that this was a common occurrence.

Apparently there is a “honeymoon phase” with medications, where they work great for a while, and then they don’t work as well. My seizures still are nowhere near as bad or as common as they were before I started medication, but they came back nonetheless, which means I needed to change my dosage.

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Since I had no side effects from the medication – which I was THRILLED about, because Keppra is known to often cause rage and depression in people – both the neurologist and myself were confident in upping the dosage, which is what we did. He gave me a new prescription for both 500mg tablets and 250mg tablets, and told me to take 750mg worth of tablets twice a day.

He told me that if I had two more seizures whilst taking this new dose, to increase it to 2000mg worth of tablets each day, which will be double what I was first taking. I actually ended up having three more seizures, so I increased my dosage, meaning I now take two pills in the morning, and two at night, equalling to double what I initially started taking.

So far, 2000mg of Keppra seems to be the perfect amount for me, as I haven’t had another seizure since March 8th. However, if I end up having two more seizures, we will move on to discussing other options, which could include taking multiple medications at one time. We’re aiming to find the perfect mix of medications that work for me and my brain – and, if we’re unable to find that magical combination, brain surgery becomes an option.

I have done a LOT of research on epilepsy since being diagnosed, so I knew brain surgery was going to be mentioned. I think it helped me a lot to be informed about it beforehand, because it would have been quite a shock to hear from him at first. As terrifying as brain surgery sounds, I am certainly not going to rule it out. Epilepsy is the worst thing in my life, and I will do anything to rid myself of it. Before anyone who knows me in real life starts to worry that I need brain surgery, just relax, because there’s a lot more to it than just “you need brain surgery”.

First of all, I’ll need to be monitored for a long time beforehand to ensure that I am eligible. I don’t think all types of epilepsy can be cured with brain surgery – don’t quote me on that part, though – so I have a feeling they’ll need to monitor my brain activity and seizures for a while, whether that means I stay in a hospital, or go about my day with wires attached to my head, to find out if it will help me.

There is also the psychological aspect to it all. If you might need brain surgery, the hospital sends out a psychiatrist to visit you and assess that you are capable of handling such a full-on thing mentally, which I think is great. I’ve had some ups and downs with my mental health in the past, and although I truly believe that I will be able to handle surgery if that is what it comes down to, I feel even more secure knowing that a professional will monitor me and let me know if they also agree.

The one thing that I am worried about if the possibility of surgery becomes a reality is money. We have great healthcare here in Australia, but I’m not sure if brain surgery is covered by Medicare. I actually think it is, but if it’s not, I am sure it won’t be cheap. Whether it’s free or not, there is also the aspect that I will not be able to work for a while afterwards, which will also affect things. Daniel and I live on our own and pay our own bills, so for one of us to suddenly have no money coming in would be a shock.

However, we are both very smart with our money and do have enough saved that one of us CAN be out of work for a while and we’ll be okay, but I’d still like to avoid taking too much time off, if possible. Once again though, this is way, way in the future. As I mentioned before, my current medication seems to be working well, so that’s what we’re focusing on right now!

I have an appointment with my neurologist in a few days, and we’ll see where he wants to go from here. I am pretty sure he’s just going to set another appointment for a few months in the future, as the medication I am currently taking is working, so there’s no need to change or add anything at this moment, but we’ll see. I honestly feel good about this, guys. I know there’s a solution for me out there, and the current dosage that I am on might be it.

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If you’re still here after all of that, I applaud you. It feels good knowing that I could be teaching people out the different kinds of epilepsy that exist, because I HAVE it and didn’t even know what it was, so I’m sure there’s plenty of other people who have never heard of focal epilepsy either.

This is also a blog post for me to be able to look back on and remember this seemingly never-ending journey of mine. Hopefully someday I will be reading this and I will have found my “fix” and have my seizures under control, and I will remember the uncertainty and smile, knowing that I eventually found the solution that was right for me – and I truly believe I will.

Until next time,
Indya xx

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