Photosensitive epilepsy and the BBC

Last week I was interviewed by the BBC about living with photosensitive epilepsy. Many people mistakenly believe that if you have epilepsy, you automatically have photosensitive epilepsy - which means your seizures are triggered by flashing or flickering lights. However it's actually only every 3 in 100 people with epilepsy that have photosensitive epilepsy.

Although my epilepsy is classed as Juvenile Myoclonic Epilepsy, I am also photosensitive, but luckily for me, it's not very severe. I only ever really have seizures when I'm exposed to strobe lights in clubs (or when I go to see the occasional stage show - Lord of the Dance was particularly bad for strobe lights). This can cause problems (especially when I was a student), but I'm very thankful that my photosensitivity is not as bad as it could be.

To read the full BBC article, visit:

http://www.bbc.co.uk/news/health-20446715

Tonic-clonic woes

Last Sunday I had a tonic-clonic seizure - my second this year. As my tonic-clonic seizures are fairly few and far between, when they do happen they are unexpected, traumatic events. I hadn't been feeling great, so was having a cheeky mid-day nap. Not realising this, my housemate Josh woke me up (completely my fault for not letting him know) and I started having quite severe myoclonic jerks. 

Generally I can tell by the severity of the jerks if it is going to lead to a full tonic-clonic seizure. It almost feels like I'm having a full-blown seizure but somehow 'pulling back' but I have no idea if this has any medical truth to it. When the jerks started to get really bad, I immediately panicked that I was about to have a seizure by myself. Rationally what I should have done is sat down on the floor and waited for the seizure, but the thought of waiting for it alone terrified me, so I quickly made my way downstairs to Josh. 

The last thing I remember was sitting in an armchair, shaking like a leaf from panic, telling Josh that I was about to have a seizure. He asked what he should do and I answered "don't panic" before proceeding to fall off the chair into the coffee table in a tonic-clonic seizure. Josh later told me that it wasn't the best pre-seizure advice I could have offered, but as Rory, my other housemate pointed out to him "at least you didn't panic". 

And to Josh's absolute credit he didn't panic in the slightest, he was nothing but brilliant. When I woke up I was squished between the sofa and the coffee table, feeling very groggy and confused. Josh explained to me that I had had a seizure, and he later told me he kept repeating "you've had a seizure but you're absolutely fine, you're at home and completely safe" because when he first said it I stared at him like he was speaking another language. When I've had a tonic-clonic seizure I tend to get very clingy/emotional and ask whoever is with me for a hug or to hold my hand. (I don't ever remember doing this, I'm hypothesising it's a subconscious reaction to having had such a fright). This is normally fine, as the people I normally have tonic-clonic seizures in front of are The Mother, or one of my brothers, but I have to admit to being quite embarrassed for acting the same way in front of Josh! I was quite a pathetic figure though, so I'm sure he didn't mind. 

Aside from the normal post-seizure pain, I managed to injure my face as I fell (Josh couldn't get to me fast enough). I bruised my forehead and sustained what looked like carpet burns to one side of my face and cut the bridge of my nose on the coffee table. I also bit my tongue as usual which is the injury which seems to be taking the longest time to heal. It could have been a lot worse though - I always live in fear that I'll knock out some teeth! I took the next day off work and slept for a large part of the day out of sheer exhaustion but went into work the day after with a black eye and a scraped nose. Not the most professional look in the world, but everyone was very sympathetic, understanding and kind and it gave everyone lots of new 'watch out, she's Glaswegian' material (all in good fun I must add!) I took a truly hideous photo of myself and my injuries and sent it to The Mother with the caption 'I iz well 'ard'. It made her laugh which was definitely my aim (she was worried sick being 400 miles away from me). 

As my tonic-clonic seizures are getting far too frequent, I have decided to increase my medication from 300 mg of Sodium Valproate to 400 mg (to start with). If that fails to stop them, I may need to increase it to 500 mg but slowly, so I hopefully avoid the side effects this time! 

Learning First aid

I have always fancied the idea of being a first aider. Probably ever since I had my first few tonic-clonic seizures, when my brothers had to work out if they should phone an ambulance when I turned a touch blue. I certainly didn't know how to deal with a seizure, not to mention asthma attacks, bleeding or fainting and I always thought First Aid would be a valuable thing to know. And so, when the opportunity arose at work, I thought I'd go for it. 

The course I took was First Aid at Work (there are lots of different versions of First Aid course) organised by St John's ambulance, and was taught over three days. On the first day everyone was presented with their own First Aid Manual, and anyone who knows me will testify that handing me a free book is definitely the way to impress. Over the three days, we were taught many different things, including how to apply bandages, dealing with burns, bleeds, heart attacks and unconscious casualties. On the last day we had the dreaded test which was, with hindsight, quite funny. The assessor came to the door with the words "there's been an incident, is anyone here a first aider?". There was a lot of role-play involved as we were introduced to our unconscious casualty and had to act out what we would do. Lots of fake shouting and a lot of "Trish, Trish, open your eyes Trish, it's Jane, I'm a first aider". 

One of the things we covered during the three days were seizures, and it was quite interesting to be taught about those as a novice. Our trainer told us a story about a young boy she used to teach who suffered from absence seizures. His classmates were aware of these "funny moments" and would frequently rewind their conversations and games so he knew what they were talking about (as they knew he had missed a bit). I loved that story. Maybe epilepsy is becoming less stigmatised with new generations. 

I received my certificate in the post this morning, and I can heartily recommend the course to anyone interested in learning First Aid. 

Step away from the spoons

Hello again!

It's been a while, again, I know, but I promise I have a good excuse. Well, I have an excuse at least.

A lot has changed in my life. When I last posted, I was living in Edinburgh and I was at university studying for my masters degree in Publishing. Well, my degree has been and gone and I'm happy to say that I passed. But not only that, but I managed to secure myself my first ever grown-up job in publishing. But in order to take the job, I had to move approximately 400 miles South, to England, a country that does not have square slice sausage, 'fizzy juice' or often the ability to understand my accent (it's Jane, not Jean). 

As I found when I moved to Edinburgh, moving to another city and meeting new people means explaining your epilepsy to a whole new set of people. People with varying degrees of knowledge and understanding about the condition. As is obvious from this blog, talking about epilepsy is not something I mind. However the difference between living in Oxford and Edinburgh is, for me, the distance I now am from The Mother, and everyone else who knows my epilepsy - and me - inside out. 

No one knows me. Not even a little. I had to start from scratch. Where I'm from, how many siblings, what my parents do. But unlike most other people, I have to give a brief medical history with the story of my epilepsy. Most people are intrigued by it I have found, and I encourage them to ask as many questions as they can think of. I find it immensely satisfying to hear someone ask 'so what should I put in your mouth?'  and to be able to correct them, knowing that, in the future, were they to see anyone having a tonic clonic seizure, they would know that the answer was nothing. Step away from the spoons. 

In regards to my epilepsy on a personal level, I have had one tonic clonic seizure since moving to Oxford. I had been drinking the night before and had an unsettled night of sleep as a result. In the morning I had very severe myoclonic jerks and I half-knew that I was going to have a tonic clonic seizure. Lo and behold, I woke up later with that unsettling, familiar feeling of confusion mixed with pain and a dawning realisation that whoops, I've had a seizure. And the relief, always the relief, that at least now that means it's over. 

I have, for a while, been avoiding increasing my medication but after that seizure I decided enough was enough, and so I have made an appointment with the neurologist. It's a difficult one. Although Epilim (the only medication that works for me) controls my seizures completely when I'm on it at a higher dosage, it comes with side effects. Epilim was the first medication I tried when I was diagnosed at the age of 12, and although it stopped the seizures, it also made me unbearably hungry. It sounds trivial now, but I was hungry constantly. I'd eat a full dinner and be hungry within ten minutes. I took to hiding loaves of bread in my room so The Mother couldn't see me. Before long I had developed quite the gut, and looking pregnant at 12 is not a good look. 

I'll make a decision eventually, but it's a difficult one!

To end on a cheerier note, here's a picture of me on a recent trip to Norway, pretending to be a moose. As you do.

Young Scot awards 2010

With my incredibly sporadic posting on Just Epilepsy, I forgot to mention that a year ago I won a Young Scot award for the work I’ve done over the years to raise awareness for epilepsy. It was an amazing night although I still can’t believe I made a speech in front of hundreds of people. Other highlights included meeting the cute guy from Emmerdale and being presented my award by Darius (who was so tall he had to crouch down in the photo with me afterwards!). I'm very grateful to Allana Taylor from Epilepsy Scotland for nominating me - it was a massive honour.

An update at last!

Since my last post (which was a while ago), a lot has changed in my life. I graduated university in July with a degree in English, my boyfriend and I split up in October and I moved to Edinburgh full-time in January.

Living in a new city by myself has brought all kinds of challenges my way. First of all, I can’t cook and my diet still largely consists of pasta and cheese and scrambled egg and/or beans on toast. The first time I cleaned the bathroom I had to phone The Mother to get her to clarify just exactly what Mr Muscle meant when he said “do not use drain cleaner on standing water”. And don’t even get me started on filling out a Census form by myself! The largest challenge however, has come in facing seizures by myself.

Doctors recommend that everyone enjoy alcohol in moderation, but people on medication even more so. With the medication I take, alcohol tends to stop it functioning properly, thus increasing my risk of seizures. This was the reason on the morning of 13th February I had my first tonic-clonic seizure in two and a half years.

I woke up lying at a very odd angle on my bed with one of my flatmates sitting on my bed beside me. I groaned, realising what had happened and hastily wiped the puddle of bloody drool off my bedspread. Seizures are not attractive things, especially not in front of your two good-looking flatmates whom you’ve only lived with for a month. Sigh. Thankfully they are very nice guys, and seemed utterly unfazed by my seizure, shrugging as I expressed my gratitude.

The seizure gave me a massive fright however. Not only had I become complacent about having epilepsy, but for the first time I had to deal with having a seizure away from home – and The Mother. The days after the seizure were painful and my tongue, as usual, was bruised and swollen. The shock of the seizure lasted a week and I cried numerous times out of pain and self-pity.

The time has come for me to consider increasing my dosage of Epilim. I have been very hesitant to do this in the past due to the horrible side effects I have experienced with it. I have to weigh up what would be worse: having a seizure alone or fighting the massive urge to eat constantly. I am finding it a very hard decision to make.

Titan Crane update

A couple of posts ago, I mentioned my boyfriend was doing an abseil from the Titan Crane for Epilepsy Scotland but then I completely forgot to write about it! I blame university for occupying so much of my time.

It was a really bright, sunny day, but unfortunately it was FREEZING. Epilepsy Scotland was just one of the charities there on the day, and there was a few who were abseiling who were in fancy dress. Unfortuantely I couldn't convince Ian to dress up as a fairy. It was a fun day despite the cold, and Ian managed to raise £210!

Here's some photos, as promised :)



Group shot L-R Craig, Ian and Kerry



Ian showing off his Epilepsy Scotland t-shirt.


An arty shot of Ian mid-abseil