My name is Annie and I have epilepsy. There I’ve said it. To be honest it’s not like it’s the first time I’ve actually said it, I’ve done videos on my epilepsy but for some reason I’ve never created a full blog post about it. I didn’t want to fixated on it because even though I want to create awareness I don’t want people to pigeon hole me in that category, when really I have much more about my life to share.
As Epilepsy Awareness has just been (aka Purple Day) I’ve decided to finally be brave and share my story…
Let’s start the ball rolling. I was diagnosed later on in life after suffering for years without knowing. I basically hadn’t a clue what was happening until one of my blogger friends highlighted similar symptoms she’d once had, which turned out to be epilepsy. Of course, this conversation was had after a few bubbles and the compulsory chinwag in the ladies loos – obviously. I was a bit mind boggled in how what I was feeling was epilepsy? Wasn’t epilepsy when you had full on fits on the floor? You were photosensitive surely? Didn’t you need an epi-pen with you all the time? Oh yes, they are the stereotypes people have of what epilepsy is and I hold my hands up to it I thought the same too.
To take you back a step to be honest it’s all a bit of a blur, and only recently have I wondered if I’d had symptoms that I deemed ‘normal’ when in fact they were small seizures. I really noticed the first ‘wobbles’ when I was working at a summer camp in Cobham in my university break. I was sat in the car of one of my co-workers when I had this really odd feeling whoosh over me. I felt slightly confused but the girls said I probably just had some kind of a panic attack. I didn’t think that’s what it was but carried on as normal. At this point I was a happy girl, I was upbeat, active and generally looked after myself. I then hit my 2nd year of university and various areas started to go wrong, I became really low for no major reason. I managed to pull myself out of it, but things weren’t the same but it got really bad when I was heading into my 3rd year and onto my masters degree. Things seemed ridiculously stressful to me but looking back now, the person I am today wouldn’t have stood for any of it. People I worked with weren’t particularly nice and would happily highlight any errors, my course had become increasingly more demanding as I was juggling working and university, friendships strained and I spent a vast amount of time feeling confused and alone. It got so bad to a point I just didn’t want to leave the house at all. At the time I didn’t know what I wanted and typing this I sort of feel embarrassed and sad to think I was in this state.
Little did I know one of the main culprits behind me feeling like this was in fact epilepsy in the form of partial seizures. I’d be with it when it was happening but wouldn’t really recall it. Epilepsy does have a tendency to change and that has happened with my journey, I believe I must of been having some kind of absence seizure where I never really knew they’d happened but would be really confused. These unfortunately got increasingly worse, (towards the end of 3rd year) into full blown complex partial seizures. It just must of got worse and worse.
I think I picked up on them getting more frequent when me and my husband worked in Val d’sere as chalet hosts, I used to always do a welcome chat with our guests before they went off for the first day. We sat down had a cup of tea and I’d read out my list of bits, back then I don’t really know why but I was always very nervous about things, it may have been a ripple effect of the epilepsy but I got myself in a pickle. I vaguely recall talking to them and then suddenly I felt very weird with a feeling rising up through me. Initially there was a de ja vu feeling, which would make sense given that I’d done this little speech before, but this wasn’t the same. I felt extreme fear with this disgusting feeling in my stomach. I think I tried to keep talking but as we’ve discovered when monitoring my epilepsy now we know what it is, my mouth and head don’t match up meaning I can’t talk properly or if I do absolute crap comes out. Great first impressions there! I know I got myself in a panic and kept saying, hang on, oh umm, where are we? whilst trying to tackle this horrendous feeling.
The next one I had was in Val d’sere. I had just been told my Grandad had past away which obviously was absolutely heartbreaking, but soon after my Dad had sent me an article of his interview with the local news. My poppa bear was an aircraft engineer until he retired, and he was actually the first person on the plane of the Kegworth air disaster which crashed just off the M1. So this interview was doing a 20 years on interview. Again de ja vu got me and that was probably the worst one I’d had yet and clearly it was stress of all this news that pushed it on me. Funny thing is that no one could know this was happening I was totally trapped in myself.
I got back from Val d’sere at all mighty low. I had put on so much weight because I was so so so depressed. I couldn’t understand what was happening, so ate and curled up. I wasn’t very good company because I never wanted to do anything. I had no confidence and it all started to fall apart after I discovered I’d need to move to London if I wanted a job at music label which I’d set out to do. But with lack of confidence, constantly feeling low and emotional from it, I didn’t have the drive I do now I was stuck working for the family company. It was safe I guess. This all going on my relationship with my now husband fell apart and we split up. Once I got over being absolutely heartbroken I lost a bit of weight and tried to push my confidence levels up a bit, which it did, I began being social again and I actually thought maybe I wouldn’t have those feelings anymore – I kinda thought maybe I was just in an unhappy relationship and that was causing it? I think maybe a month after we had split up I had my first seizure. Got up early to read my magazine and have a cup of tea and I nearly spilt the entire cup on my lap because my wrist started shaking. I knew then something wasn’t right and so I went back to the doctor. Sorry I should of pointed out I was basically on first name terms with my doctor and that I nearly had grooves modelled into the patient seat where I was always sat. She kept telling me it was panic attacks or anxiety attacks and was encouraging me to take anti-depressants, but god bless my mother she told me not to take them. For some reason I’ve had it drilled in to me that they aren’t always the answer and that coming off them can be tough, so I declined.
My symptoms would peak and trough, some months I was absolutely fine, the next would be utterly mind glowingly bad. I can’t quite remember where it his the worst in the run up to diagnosis but I said to my Mum I just couldn’t carry on and was going to the doctor to go on anti depressants. I’d got my appointment booked but had just won a competition with Next to go to the Elle Style Awards in 2012 so went to that and rescheduled my appointment for two days afterwards. It was then I said to the doctor to refer me to neurologist and if it wasn’t epilepsy I’d go down the anti depressants route. I couldn’t really see another option after trying every therapy style thing under the sun, from the Charles Linden Method to hypnosis but nothing was working.
I remember the day I met my neurologist. Firstly he wore a bow tie and was rather intimidating to be in the room with. I drove my little red ka (Bernie) to the hospital, parked him up and trotted in. I kept thinking to myself to play down the symptoms because I could be over thinking it, as so many people kept telling me. I explained my symptoms to an expressionless man who immediately said after I’d finished, “you have complex partial seizures”. I was gobsmacked. ‘Pardon?’ Yes what you’re describing is exactly what I’d expect, now did you drive here? I need you to stop driving immediately and I need to get you on medication’. Well, this was all a bit mind numbing, no driving? medication? I said to him I wanted tests first before medication because some how I didn’t believe him, I needed black and white proof it was epilepsy and wasn’t something I’d somehow fabricated in my head. I explained I would have to drive home first before I stopped completely, and then subsequently burst into tears to be comforted by the nurse.
I drove my car back to my sister office where I worked. I felt really numb and totally out of my own body. I had been told for years this was nothing, that it was all in my head, and here I was being told I had epilepsy. What the hell? I closed the door to my car, went into the office and headed straight upstairs to see my Mum. I started crying. I told her what the neurologist told me, my sister shortly joined before the dog joined in. I think they were just as shocked as me, on some levels I don’t think anyone really believed there was something bigger going on here and almost felt guilty. I went for 3 MRI scans in total due to issues with a potential problem they needed to investigate (which clearly didn’t help matters) then I finally had my EEG which confirmed everything. I had epilepsy.
You’d probably think I would be happy being diagnosed. Nope. I went onto a drug called keppra and it got worse. Symptoms went from a little twitch to full on disorientation, hand twitching, lip smacking and utter fear like something worse than a slasher film. De ja vu was so extreme I felt ridiculously freaked out and would in the end be left with a migraine and the fear of when another one would get me again. I often had them first thing in the shower so classic fm would be on to comfort me, I found the more relaxed I was when one happened the less intense it was. Me and hubby got back together after 6 months apart – he was actually back with me well before I had any idea it was epilepsy and basically held my hand through the entire ordeal. I’ve had these seizures in the most awkward places, I even had one once when interviewing Julie Deane from the Cambridge Satchel Company over the phone! I had recorded it and apparently kept repeating the same word around 6 times. Luckily I somehow got myself out of it. I had one at the office when I totally lost direction of where the hell I was an apparently proceeded to walk around in a circle… as you do! I would have them running! I had one before I knew I had epilepsy during the Nike Run To The Beat half marathon, I just vaguely recall collapsing near a bin and sitting down. I got back up and carried on where I saw Nick who took a picture, now each time I see that photo I think ‘ little did you know that was a seizure you just had!’ I have them running long races a bit, one during the Cambridge half, one during the Berlin marathon! I kept a seizure diary to monitor how often they were… I was at my worst having around 5 a day.
My appetite decreased majorly because of the sheer dread and stress. Even though I was very slim and down to 8 stone I was a poorly girl. I was over come with severe depression from it all. I had suffered from the horror of diagnosis and not being able to deal with it, and the fact my symptoms had got so bad I didn’t want to wake up anymore. That is quite hard for me to admit because luckily now I am so upbeat again. I just didn’t want to be stuck in anymore of these situations where I’d be having conversations and one of these bloody things would strike, I couldn’t explain what was happening and I’d look a right idiot to anyone else. I was too embarrassed or confused afterwards to explain what the hell had happened. Nightmare. A lot of people dismiss how bad it got, or even don’t realise how badly I took my diagnosis after the years of my symptoms being brushed off.
My neurologist and epilepsy nurse slowly took me off Keppra to put me on lamotrogine. I went up to 100mg x2 a day. This still made me have seizures but it wasn’t as intense. we bought it down a touch to 75mg and now instead of having a full seizure like before I get simple partial seizures where there is just the aura… which is basically what we call the warning sign, which in my case is a weird de ja vu feeling. Touch wood, this never escalates to what my seizures used to be like. I go into glazed expressions sometimes and completely zone out , which is one of the symptoms of my kind of epilepsy – which only recently when I look back to me as a little girl I remember vaguely that happening before. I also used to have terrible migraines which I would have post seizure.
I know this is such a bloody long blog post, and never have I ever written so much, but my story is a bit unique and something I wanted to share. I’m now far bigger than I was but I’m healthy. I really have to take care of myself and it does frustrate me sometimes that I still can’t do what everyone else can, I can’t really do too many late nights in a row, I can’t eat loads of sugar or salty crap, I basically need to constantly watch everything I do because even though we should all be active and healthy I really need to. I can’t get myself too stressed out which is why I left a previous job. They didn’t understand my epilepsy only the stereotypical epilepsy and therefore I didn’t feel supported. Which in turn made me worried and stressed and that was causing wobbles. I went freelance and picked up a two days a week job where I still had that social aspect, because me being left alone with my thoughts isn’t always healthy.
So here we are at age 31. After being diagnosed in 2012 and having a recent epilepsy review with my doctor, she told me how inspirational I was. It was only then I realised what I’d come through. It may not seem as bad a grand mal seizure what I was having, but being conscious and feeling what we do, trust me it was horrific. I shared my story on YouTube after years of hiding it. I felt so embarrassed, like I was flawed or people would see me different or treat me like a china doll. Luckily I get a warning sign and after year of knowing myself during, I can sort myself out easily. Lots of people don’t understand there are so many complexities to epilepsy, and when I tell people I have it they automatically assume I’m photosensitive and will have a fit. I don’t want anyone to ever go through the years I did, feeling how I did… I feel like I lost my 20’s to epilepsy for which I get a pit of regret and sorrow in my stomach. Even though I’m no spring chicken I have made it my goal now to do as much as I can, to be that upbeat bubbly girl I know I am and to seize the day before the seizures got me. My now husband was the best thing to happen to me, he really supports me and encourages me to do as much as possinle. So what that I have epilepsy? IT doesn’t have me. One day I may be free from it and luckily I hardly have them now, but because its in the mind it is very hard to work out what is what when you can’t actually see it. Who knows… but my journey continues.
p.s sorry for the essay but if you’re reading this line I appreciate you hearing me out. If you are going through diagnosis or want someone to chat to leave me a comment. If you want to hear more about epilepsy then hop over to my YouTube channel to watch my videos.