Archive for the ‘Health’ Category

Cara Coles bookIf you’re newly diagnosed with epilepsy and looking for medical information about your condition, this isn’t the book for you.

However, if you’d like to read an intensely personal account of how Cara Coles came to terms with her diagnosis – and eventually began to see it in a positive light – give Living and Copying with Epilepsy, My Way (2015, Soul Rocks) a shot.

Shocked by her seizures, British healthcare worker Cara decides to use the law of attraction and positive thinking to prove that she can have whatever she wants out of life, no matter what.

She writes a list of wishes, from getting her driving licence back to meeting her favourite band – I would love to know which band, and what happened on the mysterious sixth tour date that “we don’t talk about” – and publishing a book, and trusts the universe to deliver.

It’s an easy book to read, with the short chapters giving it the feel of a series of blog posts. Although this isn’t the case, it does seem a bit like a self-published vanity project, and it’s quite repetitious in places with some odd asides.

Having said that, I did enjoy reading it. I have epilepsy myself and recognised many of the stages she goes through, from the fear of having a seizure in public to the profound grief of losing your driving licence and hence your independence. I too went through a period of being afraid to go to sleep in case I had a seizure. It was a great comfort to read about the emotional impact of having epilepsy and feel that I wasn’t alone.

Given that the theme of the book was the law of attraction, I was concerned that at some point she was going to trust the universe to deliver a cure for her epilepsy. I was glad to see that she trusts her neurologist’s advice throughout and doesn’t advocate throwing away your medication and hoping for the best.

Cara’s sincerity shines throughout the book – she clearly believes in the law of attraction, that “like attracts like”, and presents a convincing case. Even this sceptical reader felt inspired to think about clearing out the spare room to release the blocked energy within.

No matter what you think about the book’s central premise, you can’t deny that it would be a better world if more people considered the power of gratitude and kindness. And this is something everyone could benefit from, with or without epilepsy.

“It’s still your life: how you live it is up to you. You are who you are; you are not who your illness says you are.” Cara Coles

* I received a free copy in exchange for an honest review.


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March 26th was Purple Day – the international day of epilepsy awareness – and I was privileged to be able to share my story in the Birmingham Mail that day.

I talked about the shock of being diagnosed with epilepsy at the age of 20 and some of the feelings I wrestled with at the time and later, as well as the precautions I took to minimise the risks to my unborn child when I was planning to become a mum.

Ever since it went to press I’ve been thinking of other things that I wish I’d said, so here are a few extras for you:

I got some positive comments on the Mail’s Facebook page, although a few people seemed to think that I couldn’t truly speak about epilepsy as my seizures are controlled. To which I say, yes, I know I am among the fortunate 52 per cent of people with epilepsy who live seizure-free – and I know that many people face daily struggles that I am lucky to avoid.

However, I hope that my story can be seen as a giving a positive take on living with epilepsy, and shining a light on an often misunderstood condition, but one which is surprisingly common (one in every 103 people in the UK has epilepsy).

Click here to read the full feature.

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The Fitbit Flex appeals to my love of statistics and has managed to get me moving

No one would ever describe me as a sporty person, so my decision to spend my birthday money on what is effectively a pricey pedometer surprised a few people.

But the Fitbit Flex is so much more than just a step counter, and has helped kickstart a more healthy lifestyle which will hopefully see me finally lose that pesky baby weight (can you still call it baby weight when your “baby” is nearly two?).

Worn on the wrist, the Flex tracks your steps, distance, calories burned and even your sleep patterns to give you a rounded picture of your daily activity levels. It displays your progress towards your chosen goal using a series of five small LED lights (20 per cent increments) which appear when you tap it.

Fitbit FlexThe Flex just looks like a plain black band which I wear on my non-dominant hand against my watch. It comes with two sizes of strap and you can buy different colours if you want to make it more of a fashion accessory.

I’ve had mine for a month or so now and the first thing that struck me was just how inactive I am on some days. On my working days I can sometimes sit at my desk for hours with barely a break. I was shocked. Seeing the harsh truth displayed there on the Fitbit iPhone app (it syncs with its app via Bluetooth) made me think twice about how I spend my time.

On the flipside I was excited to see that I walked more than 21 miles during a two-day visit to Oxford. I was so proud of the first day that I took a screen shot of the grand total for posterity.

Fitbit record day

Some days I even find myself walking round the house unnecessarily to get my steps up and feel that joyful little buzz that it gives when I reach my target. It’s definitely a great motivator.

The Flex has a silent alarm function to wake you without disturbing your bed-mate, but I haven’t tried this out as I have a child who already does this.

It is interesting to see how much sleep I actually get (you put it into sleep mode when you turn out your light and wake it in the morning), although I’m not sure what to do with the information that it takes me an average of six minutes to fall asleep. I’m quite happy to have information for information’s sake though and I enjoy taking a look at the charts on the Fitbit website’s dashboard. I wish you could access a bit more of that via the iPhone app.

The battery lasts for almost a week and charges fully via USB while I have long soak in the bath – no step counting required for that activity.

My one bugbear is that I am not sure how accurately it logs all those steps that I take while pushing a pushchair. I’ll be walking into town without the pushchair tomorrow though so I’ll be able to compare it with the results I normally get.

I’m not sure whether it would really meet the needs of a more serious fitness fan, but since spending my £79.99 on the Fitbit Flex I have definitely paid more attention to my activity levels. I’ve even started jogging regularly and am thinking of entering a 5K. And that would have been completely unheard of just a few weeks ago. Thanks, Fitbit.

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So, Kelly Osbourne is recovering in hospital after having a seizure while filming her TV fashion show. She probably feels pretty dreadful right now – I’m guessing headaches, memory loss, aches and pains and fatigue for starters – and I wish her a swift recovery and a swift diagnosis.

Her seizure could have any one of a number of different causes, but if she is diagnosed with epilepsy, I hope she will speak out about it.

Can you name any famous people with epilepsy? You might say Julius Caesar and Alexander the Great, and even Vincent Van Gogh or Joan of Arc if pushed.

But can you name any contemporary famous people with epilepsy? Without any help from Google, the only people I could think of were Olympian Dai Greene and actor Rik Mayall. Google also gave me actor Hugo Weaving and DJ Edith Bowman.

My Googling also brought me to Epilepsy.com’s list of famous people with epilepsy, but even that site somewhat mournfully admits:

Today, celebrities with epilepsy remain “in the closet,” concerned that going public with their epilepsy will result in negative treatment and harm their employment opportunities. This is a shame, because people living with epilepsy – people who are neither geniuses nor celebrities – deserve to have role models to inspire them, and leaders to raise public awareness and understanding of their disorder.

There is no denying that we live in a celebrity-obsessed world (heck, Heat magazine is my guilty pleasure) so just think of how much of the thousands of years of stigma could be destroyed if a big name star spoke out. Think Michael J Fox and Parkinson’s, or Kylie Minogue and breast cancer, or Stephen Fry and bipolar disorder. Their openness has done so much to raise awareness. One in every 131 people in the UK alone has epilepsy, so there must be some household names out there.

I have never personally suffered any major instances of prejudice (lack of understanding and even embarrassment are the most common reactions, which I am always happy to address) but you regularly see inaccurate and unhelpful things written in the media.

People with epilepsy can be just as successful as anyone else. We don’t have to be ashamed. So if Kelly Osbourne does end up joining us, I hope she will feel able to talk about it when she’s ready. It would be great to see epilepsy discussed in a more positive way that can inspire us all.

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I wrote this feature as part of Epilepsy Action’s HealthE mum-to-be campaign and I truly hope that my experience will reassure women with epilepsy that they can go on to have healthy pregnancies and healthy babies.

This article was first published in Epilepsy Today, March 2013 (copyright Epilepsy Action 2013). Epilepsy Action exists to improve the lives of everyone affected by epilepsy. For more information, visit www.epilepsy.org.uk

Here is a PDF of the story as it appeared in Epilepsy Today. (complete with photos 🙂 )

Hannah Hiles had always been aware of the potential problems associated with pregnancy and epilepsy – so she was determined to do everything she could to minimise the risks

Babies were the furthest thing from my mind when I was diagnosed with epilepsy. I was 20 years old, in my second year studying Modern Languages at Oxford University. In fact, I was about to move to Germany for a year. No – babies definitely weren’t in the plan.

Still, when I was bluntly told by a young neurologist that I was “at risk of having a deformed baby”, I was horrified. I didn’t hear anything else he said to me that day and I never forgot it.

Many years later, my husband and I decided to try for a baby. I was determined to give our much-wanted little one the best chance of being healthy.

I hadn’t thought about epilepsy for years. Since being diagnosed in 1999, I had been taking 200mg of Tegretol Retard twice a day. (How pleased I was when they renamed it Tegretol Prolonged Release!) Since then, my medication had allowed me to live completely free from symptoms.

Back in 1999, I’d been feeling peculiar for weeks before I knew what was wrong with me. I’d get this strange feeling in my left arm that I’ve never been able to properly describe. “My arm feels like cotton wool,” was one attempt. Even when I moved on from having just a “funny arm” to having a shaky one, I simply carried on with my normal university life.

It was when I came home for the summer that I had a tonic-clonic seizure and was rushed to hospital. They let me come home – but I promptly had another.

It must have been terrifying for my parents, but I can’t remember much from that time. I was in denial and wouldn’t read any of the information I was given. I saw it as a personal failing and was thoroughly affronted. Nothing was going to stop me doing what I’d planned.

Less than two months later, I headed off to Germany to teach English, where I lived on my own in a flat in Erlangen. The following year, I graduated with a 2:1 degree. I got a job as a journalist with the newspaper I had grown up reading in North Staffordshire, The Sentinel.

I went on with my life, taking my tablets twice a day but otherwise untroubled by epilepsy. I had dealt with my diagnosis – or not, as the case may be – simply by not thinking about it.

After marrying my husband Andrew in 2007, we moved to a different town. My new doctor wanted me to see a specialist, as I hadn’t seen anyone since 1999. They were surprised that I’d never been encouraged to come off my tablets. They wanted me to give it a try, particularly as we were hoping to start a family.

Frankly, I was terrified.

I was a dreadful patient, sobbing through my appointments and tests. I found the MRI scan stressful and claustrophobic, and was grouchy about the EEG. All the feelings that I had never faced over the years bubbled over, especially at the loss of my driving licence while I reduced my medication.

I had a wonderfully calming specialist nurse, Phil Tittensor at Cannock Chase District Hospital. He ran through all my options and shared my test results – both were more or less normal.

Despite this, I just couldn’t do it in the end. I was so worried about having a seizure that I couldn’t sleep and not sleeping was making me feel ill. Feeling ill was making me worry that I would have a seizure, and so on. It became a vicious circle.

Phil and I decided that the best option was for me to start taking the tablets again. I was taking a low dose of the safest drug. This would only increase the risk of a major problem with any potential baby by one per cent. Even then, I still felt guilty that I could be putting my baby at risk because of my own fears.

To lessen the risk of spina bifida, I was prescribed extra-strong folic acid. I took five milligrams, compared to the 400 micrograms recommended to women who aren’t taking anti-epileptic drugs. I had to take that for six months before we even started trying to conceive, then throughout my pregnancy.

In December 2010, we finally got that blue line on the pregnancy test. We were over the moon. I started showing quite early so I ended up telling people when I was only about two months pregnant. I was so excited – but always had the words “deformed baby” at the back of my mind. Would my baby have spina bifida or another malformation, such as a cleft palate?

Phil provided me with a lot of reassuring and up-to-date information about mothers-to-be who take anti-epileptic drugs (AEDs). I signed up for the UK Epilepsy and Pregnancy Register to allow my experiences to feed into their research.

I was very conscious that I was receiving excellent support from Phil, but that not all women with epilepsy are so fortunate. I even emailed the author of an otherwise excellent pregnancy book, who stated that carbamazepine was one of the worst AEDs to take while pregnant. (She thanked me and said she would amend it in future editions.)

The ultrasound scans were amazing – the first time I saw my tiny baby on screen was one of the best moments of my life. But I kept asking the sonographers: “Is he moving his legs? Can you see his spine? How is his mouth?”

I was seizure-free and healthy throughout my pregnancy. I never really got that ‘glow’ that people talk about, though. I was enormous – and was always being asked if I was sure I was only having one!

Because of my epilepsy, I was considered a ‘high-risk’ pregnancy (no water birth for me). I saw the consultant obstetrician, who was happy with my health and that of my baby. There were only two adjustments I had to make. I had to have regular blood tests during pregnancy [this is not the case for all women with epilepsy]. I also had to avoid using pethidine to relieve pain during labour. My birth plan consisted of just the following three points.

  • I would prefer not to have continuous monitoring.
  • I want no pethidine under any circumstances.
  • Andrew does not want to cut the cord.

As it turned out, I would be extremely glad that I was ‘forced’ to have the continuous ‘high-risk’ monitoring that I didn’t want.

My due date came and went. I began to feel like I was never actually going to give birth. I went for walks, ate curries and pineapple, and bounced on my birthing ball – all to no avail.

I finally went into labour 11 long days after my due date. Thanks to the monitoring equipment, medical staff quickly realised that the cord was around my baby’s neck. Every time I had a contraction his heart rate was dropping.

When this became more serious, they rushed me in to surgery for an emergency Caesarean. Just 10 minutes later Alex was delivered on his Daddy’s birthday in August 2011. He was in perfect health, weighing 8lb 8.5oz. We couldn’t believe that he was finally with us – and with no spina bifida, cleft palate, or any other abnormality at all. We would have loved him no matter what, of course – but the relief was indescribable.

My husband and I had no real experience of babies, so looking after Alex was a steep (but wonderful) learning curve. I am still breastfeeding him 17 months on. I was never concerned about passing the medication through my milk – he had already been exposed to it for months in the womb. Even the inevitable lack of sleep that comes with a new baby didn’t have any effect on my epilepsy.

Having Alex is a dream come true. He brings so much light into our lives. Every day it is exciting to see what else he can do. He loves toddling about and shouting “hello” to everyone he sees.

One unexpected plus is that I no longer have those negative feelings about having epilepsy. I wanted to give my much longed-for baby the best possible start. That forced me to face epilepsy head-on – which finally enabled me to come to terms with my diagnosis.

Editor’s note: carbamazepine is actually one of the better epilepsy drugs to take during pregnancy. Although all AEDs carry some risk, the risk attached to carbamazepine is very low. In the general population, between one and two babies in every hundred might be born with a malformation. In a woman taking carbamazepine, that risk is increased to 2.4 per cent – between three and four babies in every hundred.

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