Thursday, 12 September 2013

Bill the Zebra Fish

This is my friend Bill:
Bill here, is a Zebrafish. Bill can regenerate his heart, his skin and his fins. When he was a little lava, Bill even regenerated his little brain. Bill and I have something in common!! No, don't be silly, I can't do all of that; my friend Bill has epilepsy... but the fish version...

Now, did you know that scientists have found a way to control Bill's seizures? No, really, they can. By giving them clemizole, which is an antihistamine.  
 An Antihistamine?! My doctor told me that antihistamines might make seizures worse! And anyway, the only thing I'd use an antihistamine for would be to combat my annoying hayfever in the summer!
 But the discoveries have baffled scientists. Apparently they were testing 320 different compounds on Zebrafish that had Dravet Syndrome to see if they could find another drug to combat epilepsy.
 For anyone wondering, Dravet Syndrome is a rare form of Epilepsy that is appears from infancy. It's also known as Severe Myoclonic Epilepsy of Infancy. The Myoclonic bit means abnormal neuromuscular activity is happening, which basically means your muscles contract and relax rapidly- and uncontrollably. And this, ladies and gentlemen, is where I feel so lucky; there are so many different conditions associated with SMEI: behavioral delays and chronic infections, balance issues, growth and nutrition problems and even disruptions in the autonomic nervous system -the thing that regulates how much you sweat and your body temperature and stuff like that. How awful would that be?!
 But these scientists have found out that this antihistamine -clemizole- has an anti-epileptic effects on Bill and his friends completely unexpectedly. They even tested more antihistamines but none of them worked in the same way, blocking the seizures in the Zebrafish like the Clemizole did!

So there you have it, Bill! You will no longer have the fishy version of Dravet Sydrome.So far, this antihistamine has only been tested on Zebrafish (Which, I think, are taking over the lab rats' jobs), but scientists at the University of California are continuing research into the drug's effects.


Tuesday, 10 September 2013


I cannot tell you how nervous I am.

At my college, we have this thing called an Extended Project -EP for short. This is a qualification that can be put down on your CV as an extra talking point with Universities and Job Applications. The whole point is you choose the subject, you organise your time, you get it done. It can take the form of an artefact, a dissertation or -in my case- a performance.

Nine months ago I had the fabulous idea of organising a flash mob that would raise awareness for epilepsy action as my EP choice, and don't get me wrong, I still love the idea... but man, it is hard!

So far I've had obstacles all over the place, the worst of which was the music mix I was hoping to use being wiped off of the editing guy's computer... and at some moments in the last 3 months I've thought "Is it really worth it?"

But you'll be pleased to know that I have officially sent off for my fundraising pack from the Epilepsy Society and have set a date to do the deed.

 Project Epilepsy Society Fundraising Flash Mob is go!! there too much irony in that name?

Monday, 9 September 2013

Seizure Girl

 Until a few weeks ago, I thought my dreams of being a professional in the Performing Arts industry all but destroyed when I was diagnosed with having Epilepsy almost 11 months ago. Then, one day, I was listening to the rapper George Watsky -specifically his song Seizure Boy. The song describes what it felt like for him to have seizures, and honestly it made me feel like I wasn't so alone.

 This discovery sent me on a mad google search to find out who else in the Performing Arts/Music Industry has been diagnosed with epilepsy at one point or another in their life. I found some interesting results.
 Did you know that Susan Boyle was diagnosed with Epilepsy as a child? Mike Nolan from Bucks Fizz, too?  For you Gillingham FC supporters, Leon Legge has epilepsy which is currently controlled. Ida McKinley had quite serious epilepsy. And Prince sang about his condition in his song The Sacrifice of Victor.

 Okay, Okay, not all of these people are in the Performing Arts industry; but they were all in the public eye. Which got me thinking, if dancing and performing is what I love to do, why can't I? If a footballer can play football with epilepsy, why can't I dance?

 I actually find it quite funny, how I have been so paranoid about something happening to me, that I have not REALLY lived for the past 11 months. Not until recently have I felt almost as comfortable as I did before I started taking Lamotrigine. I don't think I'll ever get back to being as carefree as I was before, I still catch myself checking for symptoms in an English lesson or when I'm watching TV. But I'm not afraid of flashing lights anymore... is that a step forward?

 The moment that this wonderful revelation that flashing lights really didn't effect me was during a Dance performance at my College. In "the drowning scene" the stage lights flashed almost straight in my face. During each dress rehearsal I could see the others dancers keeping a watchful eye at this point, and at one point a one of the girls in the class looked at me with a panic stricken face- she hadn't been at any rehearsals that day and didn't know the lights would flash... What did I do? I think I laughed at how quickly her head snapped towards me...

 Thankfully, I do have the girls in dance looking out for me, I don't think I'd be half as confident in my classes and performing if they weren't there with an eye on me. But honestly, I love performing, and even though the paranoia of having a seizure gets in the way of rehearsing (I can't spend too much time upside down), I feel like I'm more confident than ever in the performance environment.

How about that for progress, huh?!

Monday, 14 January 2013

New Year, New Me.

Happy 2012 2013!! 
It's been a while since I've written a post that I actually thought was worth writing. So much stuff has been going on since the 26th November! First thing's first, lets get the brainy bit out the way first...

No really. I mean the BRAINY bit!
 The 6th of December was a really big date for me; involving a trip to hospital with my two moral supports (Daddy and David), getting lost in the hospital and a big scary machine that looked like this:

This machine -for those who don't know- is a Magnetic Resonance Imaging Machine... or if you don't do science, like me, it's a big machine that makes loud noises.  I'm not going to lie and tell you that I was happy to be put in a machine; in all honesty I was freaking out. Majorly. I even dragged my boyfriend along when I knew that really he should be studying...
 The machine itself was not the scary bit; it was actually quite novel to put in the plastic blue ear plugs and be put in a head brace akin to a "Stormtrooper" helmet, even the Darth Vader and R2-D2 sounds created by the magnet spinning around my head at a very very high speed didn't really freak me out. It was the "what if's" that did that: What if I had a seizure in the machine? What if something went wrong and really it wasn't epilepsy, it was something horrible like a brain tumour?

I had to wait two WHOLE weeks for the results...

 Happily, I'm in the extraordinarily lucky position of having known my epilepsy consultant for most of my life (I went to nursery school with his children), so that was one less thing to stress about on the 20th of December. The tumour question, however, was still lingering and I was so nervous about it, I told my friends that it probably wouldn't be but that I was worrying about it. I didn't tell David; the boy worries too much -and I hope he reads that! As it turns out I'm fine, well... I have epilepsy, but that is to say that we know what's causing it and we know that it's 'just there'.
 When your brain cells develop, they start their life around the ventricles and migrate to the outer layer of the brain. The problem is that I have a clump of cells that should be on the outer layer of my brain but didn't make the journey while I was still an embryo. So they're just there, and nobody quite knows why it's causing epilepsy... but it is
this is what the ventricles are...

But the biggest news of all is that I am FINALLY on the full dose of Lamotrigine, which means that the side effects ARE wearing off! No more bad medication days for me this year... touch wood.

Monday, 26 November 2012


 Sorry I haven't blogged in a while. It's been a hectic couple of weeks; rehearsals, open evenings and Dance Shows! Oh my!

 This week I've realised just how important my family are to me. I've been through all the stages of melodramatic behaviour. From crying into my pillow to pronouncing my death as I bled over the carpet on Sunday morning -It's a long and boring story. But then I've always been a little melodramatic.
 My family have been there every step of the way.
 So here is my formal apology to Mumma, Marmite Belly (Ellie), Wix, Simon, Daddy and Julie. I appreciate you all... No matter how much you don't want to hear it!!!!

All this emotion is wearing me out.

 It's been a tiring two weeks at College too, education is stepping up a notch. Open Evenings completely knocked me out (I was dead on Friday the 16th) and I'm getting more and more tired...

 It's times like this that I am ever so grateful for the amazing support network of family and friends that I have. I love you all!! It makes me so happy to know that people out there are reading this, even when I'm lazy and don't post! Every time someone tells me how much they enjoy it, it makes my day!

 So things are really looking up. I've met some really cool people at college; gone out to the cinema and NOT died from the flashing lights; gone on a date or two with someone I ACTUALLY really like -he knows who he is...

And I'm happy... maybe the medication side effects are wearing off- I'm becoming my usual melodramatic self once again!!

Wednesday, 21 November 2012

Tea and Biscuits.

Sorry for the lack of post yesterday, It's coursework season at College... after writing a 1500 word essay AND editing a piece of music AND annotating some Geography work... I was actually pooped.
 So today has been an up and a down day... It's like being on a rollercoaster sometimes -something which I'm not allowed to do anymore, boo!- and I don't know whether I'm going to crash at any moment.

 The day started at 6am with a LOONNGG shower and then I was ready to leave the house by 7.15... I realised I'd forgotten to take my pill. After a mad dash home from the bus stop, I looked at the clock and thought "I will never make it back in time to get on a bus"...... "MUUUUUMMMMM!!!!!!!!"
 Thankfully, a pyjamma clad mother was in a good mood this morning and agreed to drive me to Bourn to get on the bus there. PHEW. The bus was uneventful, just like any other Wednesday morning... But I had so much energy by the time I got to Dance Class at 9.00am. I think I scared Alice and Dotty by the amount of energy I had... and just how amused I was by the fact I was wearing a bobble hat...
 Unfortunately, at the moment, energy reserves are low. I crashed by Geography at 11.40 and had to TRY to stay awake during the video we were watching... I actually enjoyed it... I like cold environments. I was still struggling to stay awake when we were taking notes for the last 15 minutes of the lesson.
 Lunch was fun, I played pool with some friends at the local leisure center. It's funny how good friends can make you feel so much better in any situation... You walk up to them with the need to complain and before you open your mouth, they're making you cry with laughter with stories from their psychology lessons together... It's just what you need to brighten a rainy day.
 Essay in English and my team won in Debate. I was feeling normal in the afternoon, although my face is a bit achey still and sometimes I can't remember the words I want to use. It confuses me when it's on the tip of my toungue.. and then I completely space out... Luckily the rest of my team were able to step in and save the day!!
 And by 4.30 I was in need of a cup of tea and a digestive biscuit. The bus took 2 hours to get me home -verses the usual hour and 20 minutes- and although it was loads of fun playing the association game with my lovely friends... I did get bored and achey and tired and just plain down.

 Luckily. I have my tea and digestives now. I'm happy again.

PHEW! What a day, huh?

Monday, 19 November 2012

Baby, It's cold outside.

It's 10 degrees celcius outside, not exactly freesing and yet I think I have the biggest coat I've ever had this winter. I'm so cold ALL the time! I don't know if I'm still getting side effects from the medication but I am definately getting more cold than everyone around me...
 The worst part is that the medication can make me more likely to catch a cold... which totally sucks! If I'm sniffing this winter while everyone is out ice skating and having hot chocolate then I'm officially giving up! Is that understood?!

 So, I'm cold, I'm achey and I want to sleep ALL the time. PLUS it's only monday