I know that there is a profile box, but I felt that that wasn’t enough. This is my first blogpost, and I wanted to start the blog to help people with epilepsy. You may be wondering if you’re normal, be feeling low, or just have got the diagnosis – but whatever the reason, you need to know my background.
I had febrile convulsions when I was a baby up until I was five (you know, the seizures babies when their temperature gets too high). Looking back now, maybe it was epilepsy starting – who knows? Anyway, they were shrugged off. One day I was at nursery, and I started singing ‘Baa, Baa, Black Sheep’ with all the words in the wrong order. The teacher thought it a little strange so she called my mum (who was also a teacher at the school), and said she wasn’t sure if was because I was little or because something was up… My mum said I definitely knew the words so something was definitely up! We just didn’t know what was to come…
When I was 11, I began getting very bad headaches and nausea. I saw my GP but he said it was probably just a childhood migraine. However, they continued (nothing would get rid of them) and a few months later something big happened. I woke up early to go on holiday to Portugal. I’d never been before and was excited to go. I was going with my mum and some family friends (my dad doesn’t like flying). I was sat in the airport and reached into my mum’s bag to get a chocolate muffin out and wham… I tumbled over onto the floor, and had my first ever tonic-clonic seizure. If you don’t know your types of seizure (I didn’t back then), these are your stereotypical seizures that you’re likely to see on TV if somebody has epilepsy. Needless to say, I was taken to hospital and didn’t end up going on holiday. I’ve still never been to Portugal.
I soon saw my local neurologist, had an EEG and got diagnosed with epilepsy – nothing more specific than that. Being 11, I was quite proud of the fact that I had something different. It wasn’t noticeable to people from the outside, and people would say, “really?!” when I told them. When I showed them the tablets I took twice a day, they were amazed (because they were huge) – oh, and I got days off school for my hospital appointments – always a bonus. I was put on Epilim which controlled my epilepsy pretty perfectly throughout my teenage years. Once the doctor tried to take me off medication completely, hoping I may have grown out of it – no such luck, I began getting the bad headaches again, went back to GP (who again shrugged it off as nothing) and soon had a tonic-clonic seizure. I was quickly put back on the Epilim once that happened! I was a bit stupid as I did stop taking the medication myself once, too – and the headaches and seizures returned. I learned my lesson.
Epilim has a lot of side effects, and the neurologist made me aware of these from day 1. “You might put on weight” and “you might have to change when you’re older because you can’t get pregnant on them – they cause complications for the baby”. Well, they can cause complications (I’ve heard plenty of success stories as well as one very tragic one). My weight was constantly monitored but I don’t think that I did put on weight; if I did, it was not noticeable. I left school with straight As and got ABB in my A-Levels (but with depression and anxiety as well – I do blame the epilepsy a bit for that). My education
As I got older, the neurologist realised that I would, one day, like to have a family – and so, when I was about 18, he tried to change my medication. He exhausted all the anti-epileptic drugs (AEDs) that he knew about, but none of them controlled my epilepsy like the Epilim had. He ended up referring me to the best neurologist in the country… in London. I’m still under his care now, and my medication still isn’t sorted. I am currently on clonazepam, Keppra and zonisamide. I’ve also been on Lamictal (the generic version of lamotrigine gave me a rash) and Topamax.
My London Neurologist
So, what difference did seeing a specialist neurologist in London make? A massive difference – that’s what!
Firstly, until I went to London, I just knew I had “epilepsy”. That was it. I was asked in London what type I had, but I didn’t have a clue. I didn’t know what triggered my seizures either. I felt a stupid, if truth be told. They did a 24 hour EEG this time and I was given a proper diagnosis – juvenile myoclonic epilepsy. They explained this to me and it is usually diagnosed in the early teenage years. As I started my periods when I was 11, this made total sense.
They then went on to explain that the type of epilepsy I have meant I would be susceptible to three types of seizures: tonic-clonic seizures, absences and jerks. Suddenly I realised that I had been having absences too – but I can’t pinpoint how often or when they first started. I just thought being away with the fairies were normal (I still find it hard to notice when I am having an absence sometimes). I don’t get the jerks – or I don’t think I do. I felt that at last I had names for all these things which made me feel a bit weird.
My local neurologist had used up all the options that he had known to treat my epilepsy – and nothing had worked. When I was referred to London, my eyes were opened to a whole range of new possibilities – and there was hope. I’ve been on quite a few cocktails (mainly the most pregnancy safe drugs in preparation for the future). At my worst, I was having a tonic-clonic seizure once a week (in my third year of uni!!!). I’m the best I have been in a long time, having a tonic-clonic about once a year and an absence seizure once every few months (meaning I’m unable to drive). I’ve learnt what my trigger is: tiredness – and also what can contribute to this (stress, drinking alcohol and not eating properly). I believe that having adapted my lifestyle has made a huge difference – though it’s very hard for others to understand how important it is.
My neurologist also talked through the side effects more thoroughly, and did the right blood tests. It turned out that I was deficient in vitamin D – which many people on AEDs are – and so I was prescribed a supplement. When I researched the symptoms, I found I must have been deficient for a long time. I’d been waking up in the night with leg cramps for ages, and since taking the vitamin D, I haven’t had it. My face is very pale most days so I’m still not sure I’m taking enough – but it’s better than nothing. Even on epilepsy forum sites most people do not realise the importance of vitamin D and how AEDs impact on it.
I have my good days and my bad days – but no matter what – I always take my tablets (even my vitamin D). I’m also on folic acid – again, to prepare my body for pregnancy, but I feel we’ve got a long way to go. I still think I need more vitamin D or the tablets have affected my body somehow!
I was going to go into teaching but decided not to due to the stress (I have come to realise that I’ve got to put my health first). People might look at my grades and my job and call me a failure but I’m still here, with my epilepsy relatively controlled, and that is all that matters. I’m happy. It’s difficult for anybody to understand unless they have been there themselves.
With my current job, my epilepsy is more controlled than it has been in a long time. It is mentally challenging yet I don’t have to go home and stress over it. I have a loving husband (having a seizure in front of someone really shows whether they care or not!!!) and most of my friends understand why I can’t do late nights. I still find this part difficult – the ones without kids tend to arrange late night meet-ups which I simply can’t risk. Instead, I go to the family friendly occasions. I hardly ever drink either, so only going to family friendly occasions removes that social pressure too! I still think they seem I’m kind of uncooperative, or just awkward… but you really don’t understand life with epilepsy until you have lived it.
Because of everything I’ve gone through – I’ve gone through all the usual teenage struggles with epilepsy – and then had to face leaving uni with only a 2:2 when I’d been pretty much near top of the class my whole life – due to epilepsy. I hadn’t known that I was entitled to extra time and received no support from the university that I went to. I even had a seizure on the day I went in to hand in my dissertation, and had to go in and explain why it was late (to avoid the penalties). Luckily, there were okay. I now ask for extra time in all the tests that I do, whether I feel I need them or not. You just don’t know how you will be feeling on the day, plus your the medication means your brain is slowed down in general anyway.
I have so much to say so I am sure that I will be doing lots of blogposts. I had no idea when I was diagnosed just how much it would affect every area of my life as an adult (even more so than when I was a teenager). I’ve come to accept it now (on most days!) but I’m not sure that others around me realise the huge consequences of both epilepsy and the medication.