Wednesday, 18 May 2016

SUDEP ~ the other side of the Epilim debate

So a few weeks ago I was invited along to share my story at the Epilepsy Action pregnancy symposium in Wales. It was an amazing opportunity for me and I feel my story really helped highlight the need for better support for women with epilepsy throughout pregnancy.

It was fantastic to see so many health professionals from across Wales interested in making women with epilepsy have more positive birth experiences. I was really surprised to see what a good level of specialist support they seem to have across Wales with epilepsy nurses attending anti natal clinics to give support. Yet in our area just South of London there was next to no specialist input.

But the day also highlighted to me a darker side of epilepsy and I have been umming and arghing about how to write this post. Reading this post about the importance of bringing epilepsy and death out of the shadows has kick started me into writing this.

Risks of Epilim (Sodium Valporate)

We have all heard the awful stories of women having been on Epilim during pregnancy and not being informed of the risks to their baby. Of the babies born with birth defects and neurodevelopmental problems.  The day really did highlight the importance of informing women of these risks which is brilliant but it also addressed the other side of the coin... the fact that epilepsy can kill.

The reason I am writing this is because women should be given all the information when making a choice about medication during pregnancy.

I have heard people say Epilim should be band in women of child baring age but this is why it shouldn't, because every woman should be given all the information then given specialist support to come to the right decision for them.

Gender gap in treatment of generalised epilepsy

Epilim is the most effective treatment for generalised epilepsy (things like Juvenile Myoclonic Epilepsy). If a man walks into an epilepsy clinic with a generalised epilepsy syndrome he'd be put on Epilim as a first line drug. If it's a young girl or women they would try other drugs, drugs less likely to work, it turns out keppra is one of the most effective drugs aside of Epilim so it's very positive that it is appearing to be fairly safe in pregnancy.

Real Story ~ to raise awareness

They told a story which really hit home to me of a women who had been on Epilim for JME throughout childhood and it had controlled her seizures completely. She then wanted to start a family and made the difficult decision to change to what was then seen as the safest medication in pregnancy, lamotrigine. She started to have a few seizures again but got through the pregnancy and had a healthy baby.

After the birth she saw her neurologist and they discussed if she wanted to go back on Epilim but because she wanted a second child she decided to stay on Lamotrigine and live with the seizures. A few months later her husband found her blue on the bathroom floor, he was unable to resuscitate her, at her inquest the family were told she had died from SUDEP.

SUDEP ~ the information everyone should have

Seizure control is the best way to reduce SUDEP so sadly if this woman had chosen to restart Epilim her child would probably still have a mother. It's a horrible truth but one that is not spoken about enough.

The risk of SUDEP increases in the first year after birth, it makes sense and yet I never really considered it. Lack of sleep, hormonal changes, forgetting medication as we are running around after our little person, all increase our risk of seizures and thus our risk of SUDEP.

We say women should have all the information about epilepsy drugs in pregnancy to make a decision and I think that is totally right.  I just wonder whether this women was given all the information about SUDEP to add into that decision.

Epilim does carry a fairly substantial risk to a baby in pregnancy (you can find more information here) but uncontrolled epilepsy increases the mothers risk of SUDEP and that needs to be considered too (you can find more information on SUDEP here).

Lets face it not all women want to have children, women may be happy to take the risk of Epilim or maybe adoption is a better option for them but at the end of the day what women need is ALL the information and a supportive knowledgeable health professional to discuss it with so they can make there own informed decision about their health and the health of their baby.

Epilepsy is a difficult condition to get your head around in fact when a group of health professionals were asked whether they would rather have a diagnosis of epilepsy, diabetes or asthma, epilepsy was the least popular and yet there is an 70% chance that by taking a tablet twice a day you will never have another seizure again... but maybe it's all these extremely difficult topics that the condition throws up because at the end of the day weighing up your own risk of death against your babies risk of being harmed is a horrible and really tough decision to make.

We are amazing women, fighting tough battles, we deserve all the information and a supportive team of health professionals around us. Let's fight for that together.

Monday, 16 May 2016

It's National Epilepsy Week ~ let's get talking about epilepsy

So this week is National Epilepsy Week and a survey by Epilepsy Action shows many people with epilepsy still fear discrimination and are worried about talking about their epilepsy.

So I was thinking wouldn't it be great if we could use this week to start turning that around. How? By sharing our own stories of epilepsy, showing people that yes Epilepsy can be scary and unpredictable but we all battle through it and come out stronger and more reliable people, better partners, children, parents, friends and employees because we have been through hell and just got on with it, it may not feel like that on the hard days but we are all amazing epilepsy warriors.

So here goes, my story, I would love it if others shared there own stories in the comments, doesn't have to be pregnancy related just show the world we are stronger than epilepsy.

I was diagnosed with epilepsy 12 years ago aged just 19 and around the time I stated university. When I was first diagnosed I was lost, scared and I felt my whole life hinged on becoming seizure free, like everything was put on hold waiting for that to happen. Seizures were so unpredictable, with no warnings and knocking me out for days, how could I function like that?

There were a few periods where it looked like it would happen, months with no tonic clonic seizures and then bam a seizure would happen out of the blue. It was like it was teasing me. There have been some dark days where epilepsy definitely pushed ahead in the battle.

Eventually after 6 years of these intermittent tonic clonic seizures I found the strength to challenge my neurologist about why it wasn't going away. His response of well that's just how it is  wasn't enough for me so I pushed to see an epilepsy nurse and got refered to London.

Finally I saw a doctor who really listened to me. She did more tests and re diagnosed me with temperal lobe epilepsy and said she felt I was having focal seizures. Suddenly a reality hit... I hadn't been seizure free for months ever, these little focal seizures had been there the whole time I just didn't really link the two.

With a proper diagnosis I started talking to other people with the same type of epilepsy and other professionals and it became clear that while the seizure frequency tends to be relatively low seizure freedom can be hard to get especially after so much time. I then I started to realise I couldn't continue to put my life on hold waiting for seizure freedom. I needed to start living life with seizures.

So I started looking for ways to cope with the anxiety I felt from the unpredictability of seizures. I enrolled on the expert patient programme and looked into mindfulness, both helped me come up with strategies to manage my anxiety.

Then I started to live life, finding a job my epilepsy didn't effect so I could give it my all, having two amazing children, riding my horse, skiing in America and getting out running again. I didn't let epilepsy win.

So 12 years after my diagnosis I am in fact 18 months completely seizure free... it is a miracle and yet not a miracle I needed to live life. People say you must be so pleased, and I smile and say yes I am. But am I pleased? Of course I am happy but I had already accepted a life with seizures in order to make sure I didn't miss out on living life so being seizure free I don't like to think about too much because if I do have a seizure again I don't want to feel the incredible disappointment I have so many times before - I don't want to miss out on life because of it.

I guess what I am trying to say is don't let epilepsy win. Have hope things will improve but also find a way to live in the worst times otherwise we miss out on so much.

Sending lots of love to all my fellow epilepsy warriors and their families and friends who stand by them, hope to read your story soon xxx

Wednesday, 30 March 2016

All Wales Epilepsy and Pregnancy Symposium, Cardiff ~ Wednesday 20th April 2016

This looks like a fantastic event for health professionals and will hopefully help build understanding of epilepsy and pregnancy and what extra care women with epilepsy need on their journey.

I also feel honoured that I have been invited along to the day to share my own experiences with health professionals and I'm really looking forward to it.

The day is going to look at:

Epilepsy, diagnosis and management, seizure types, treatment

Teratogenicity of anti epileptic drugs, valproate and learning disability

Pre-conceptual counselling, contraception and fertility

Management of pregnant women with epilepsy - a confidential enquiry

Epilepsy Care in Pregnancy

UK Epilepsy and Pregnancy Register

Ante natal care

Labour, delivery and post delivery

Safety issues

Personal experience of epilepsy and pregnancy

So looks like an excellent day. If you are a health professional and would like to attend you can find out more about the event and book your free place here.

I'll be writing about the event afterwards so watch this space!

Saturday, 26 March 2016

Purple Day 2016 ~ Epilepsy fighters

Today is purple day and a great chance to raise some awareness about epilepsy and what living with it really means.

Epilepsy is so much more than just seizures and it's impact is not just on the person with epilepsy but everyone who loves that person to.

It's the unpredictability of it, yes seizures are awful, they knock you back and make you feel awful for hours and even days.

But it's the fact you never know when a seizure might happen that means you are always on edge, constantly risk assessing.

The longer you go without a seizure the more your confidence grows but then if epilepsy does hit again it knocks all that back.

So many times I have thought I had won only to be knocked back again by epilepsy. But epilepsy will never win I won't let it stop me living my life, having the family I want, riding my horse, skiing.

This purple day I am seizure free for 16 months and driving again. I have 2 beautiful children and feel confident again I hope epilepsy doesn't steal that confidence but you know what if it does I will fight back again.

Happy Purple Day to all those fighting epilepsy and all those supporting us in that fight.

Share your stories proudly and build awareness.

Saturday, 19 March 2016

Care in a perfect world ~ Epilepsy Blog Relay

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

I 've been thinking long and hard about what to write about for the blog relay and I've decided following on from the Royal College of Midwives awards last week I'm going to look at how care of women with epilepsy especially through pregnancy and early motherhood needs to improve.
 
Becoming a mother is a huge decision for anyone, it's a daunting prospect the idea of bringing a tiny person whose completely reliant on you into the world and helping them to become a valued member of society.
 
Then add epilepsy to the mix which brings with it so many additional complications, the risks that come with the epilepsy medication, the fact no matter how well controlled your seizures are you are labelled high risk and the fact you are going to be looking after someone so vulnerable while also suffering a condition which is so unpredictable. It's a scary thing.
 
So you'd think that with so many issues to think about there would be good support systems for women with epilepsy but unfortunately often there is very little support.  Most women are being looked after by a general neurologist who probably doesn't even specialise in epilepsy and who won't be able to see them in months. There are areas of the country where there aren't epilepsy nurses and with only one epilepsy midwife in the whole of England paid for just 6.5 hours a week who can women with epilepsy talk to about starting a family? 
 
It leaves women with epilepsy pretty alone in this scary situation and so they turn to google and online forums, which are a great resource to share experiences but one which should be backed up with real life knowledgeable support. 
 
It's little wonder I speak to women and they are really frightened to start a family, they are being told about the risks of their drugs on babies with little support in all the other issues epilepsy places on pregnancy. We need better support for women or we're going to be going back to a time where women with epilepsy feel they can't have a family due to their condition which is not the case.
 
Risks of medication
 
At the moment there is quite a lot of media out there about the risks of  epilepsy medication in pregnancy and rightly so. Women should be given ALL the facts and the fact so many women were not told about the risks of their drugs and the impact they could have on their unborn child is disgusting.
 
But I fear things maybe going too far the other way, without the right support this information is extremely frightening for women.  I have spoken to women on some of the safer medications who are terrified and considering not having a family because of the risk and you ask them who they have spoken to about it and it's no one. They have read the risks online and have tried to see their neurologist but have to wait months for an appointment.
 
Please don't get me wrong women should be given the facts about there medication and the impact on an unborn baby but they should also be able to talk their worries through with someone so they can weigh up the joys of childhood with the risks of the medication and ways to reduce the risks.

You can find out more about the risks of epilepsy medications here.
 
The pitfalls of being labelled 'high risk'
 
Having epilepsy automatically makes you a 'high risk' pregnancy whether you are having convulsive seizures daily or have been fully controlled for years.  But what does 'high risk' mean? Well it seems to vary greatly from area to area. Some people have great joined up care between their epilepsy team and obstetric team, unfortunately I think usually this doesn't happen. 
 
It certainly didn't for me in my first pregnancy. I was stuck in the high risk clinic seeing an obstetric registrar whose knowledge of epilepsy was limited.  I went along with everything they said with very limited birth choices and it lead to a fairly traumatic birth experience.
 
When it came to my second pregnancy I really had to fight to get birth choices as I wanted things to be different, I wanted a natural birth with minimal intervention.  My epilepsy was well controlled and yet because I was considered high risk I had to fight to have any choice in my birth, luckily I had an epilepsy midwife backing me up. 
 
I was told I couldn't be in the birth unit because I was 'high risk' even though my pregnancy had been completely straight forward, my epilepsy had been completely controlled and the birth unit was in the same building as the main ward.  For me stress and anxiety trigger my seizures so being in a more homely environment would have been beneficial for me but it was a definite no.  Instead I chose to stay at home as long as possible and arrived at the hospital fully dilated ready to push.  Benji arrived 42 minutes after arriving at the hospital.  It was an amazing birth experience because I was in control the whole time.
 
I feel women with epilepsy need to be treated as individual's and put in control of their care not just labelled high risk and put in a system which doesn't really meet there needs.

Women need more support after the birth

There are many additional issues women with epilepsy face following birth.  The additional issues around looking after a baby when you have epilepsy, weighing up putting in place safety features with just being a mum.  Breastfeeding while on anti epileptic medications and looking out for side effects in the baby.  Epilepsy medication levels varying following birth and side effects these may cause.  The issues around contraception and how epilepsy medication impacts on this.  These are all important issues to consider before the birth but also which women need ongoing support with after the birth.

Epilepsy Action have some great resources to help give women with epilepsy lots of information throughout their pregnancy journey here.

So what would I like to see in the perfect world?  I hope that every women with epilepsy is seen as an individual and given support and information from health professionals with specialist epilepsy knowledge so that rather than just being labelled 'high risk' they are supported to take control of their birth experience. 

Because I know from experience when you have a condition like epilepsy which takes so much control away from you by getting the right support and being given back as much control as possible it makes your birth experience so much more positive.

 
NEXT UP: Be sure to check out the next post tomorrow at Emily's Epileptic Days for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.

Be sure to check out the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.

Saturday, 12 March 2016

Epilepsy shone at the RCM awards this week

As the previous blog explained we nominated Kim Morley the epilepsy midwife who helped to give us such a positive birth experience with Benji for Emma's Diary Mum's Midwife of the Year.


Well Tuesday was the big day and we went up to London to find out who would win overall.  It was such a lovely day and so great to catch up with Kim again and for her to finally meet Benji.

 
Epilepsy Action's HealthE Mums-to-be campaign was nominated for the Charity Initiative award and I am so happy to say they won.  Two of the lovely people from Epilepsy Action went up to receive the award and Kim and myself joined them as we both worked on the project.  They also won £2000 to put towards future campaigns which I am sure they will put to great use, I would really love to see a campaign around parenting with epilepsy as it holds a lot of challenges but we will see.


 
Then  all the regional Mum's midwife of the year winners went up on stage, it was pretty nerve wracking but Benji was a star and it was so lovely to see Kim receive her award and our way of saying thank you to her.  Then came the moment they announced the overall winner and it was Kim, it was an amazing feeling to see Kim get the recognition she so deserves but also to highlight the need for better care for women with epilepsy.

 
 
We then had to be interviewed which was again quite nerve wracking although I'm sure far more so for Kim.

 
We then also found out that Kim was going to talk on Radio 4s Women's Hour the next day which was a fantastic opportunity.  I think she did an amazing job to fit such a huge topic into a 5 minute interview slot and she spoke so passionately.  If you would like to listen to it you can find the pod cast here.

I really hope that this opens up an opportunity to highlight the need for better care for women with epilepsy during pregnancy across the board, it's about so much more than the risks of the medications, it's all the other factors at play both medical, social and psychological and women just don't get the support they need.  Anyway I will not go on to much about that now as I am planning to write about that for my blog for the epilepsy blog relay on 19th March so watch this space.

But instead I will add some links to stories covering Kims success.


Epilepsy nurse Kim Morley revealed as ‘mums’ midwife of the year’ - Nursing Times

Mums’ Midwife of the Year 2016 — We Meet The Winner - Mum's in the know

Epilepsy Action’s HealthE mum-to-be campaign and epilepsy specialist midwife Kim Morley win big at RCM awards - Epilepsy Action

England's only epilepsy specialist midwife honoured as Midwife of the Year 2016 - Epilepsy Society


Monday, 7 March 2016

We're off to the midwife of the year awards tomorrow

I nominated our epilepsy midwife Kim for the Emma's Diary women's midwife of the year awards and I am so thrilled that she won for our region and tomorrow we get to attend the awards ceremony to find out if she has won overall.  It would be so fantastic if she did firstly because her knowledge and support is incredible and she deserves to be acknowledged.  It would also be a fantastic way to get the issue of epilepsy and pregnancy into the media and bring it to the attention of midwives across the country.  Even  if it just means that a few midwifes decide to read a little bit more about epilepsy that can only be a good thing for women with epilepsy across the country.  So fingers crossed.

Epilepsy Action have written up our birth story and explained why we nominated Kim here, but I'm going to share the article below as it sums it all up perfectly.

Award-winning midwife, Kim Morley’s specialist epilepsy and pregnancy knowledge gave new mum a better second birth

Clair Cobbold had a very traumatic first birth. Despite wanting a second baby, she didn’t know if she could bear another experience like that. She tells Epilepsy Today how midwife Kim Morley gave her the confidence for a second baby.

Ahead of the RCM Annual Midwifery Awards ceremony on March 8, Clair Cobbold explains why Kim Morley is a very worthy winner of the South of England’s Midwife of the Year 2016 award, and nominee for the Midwife of the Year award.
 
“I was diagnosed with epilepsy 12 years ago when I was 19. It was just after I’d started university that I had a couple of tonic-clonic seizures.
 
“It took a long time to get the correct diagnosis, as the general neurologists I saw while at university and after returning home didn't recognise I was also having focal seizures. After starting medication, my tonic-clonic seizures went from one a month to one a year.
 
“Eventually, I was referred to Queens Square in London where they ran more tests and found I had temporal lobe epilepsy. I get focal seizures, which are like a feeling of anxiety sweeping over me and they can sometimes alter my vision. They only last a couple of seconds. I also get tonic-clonic seizures where I go very blue and it takes me a long time to recover from these.
 
“I changed medication about 18 months ago from lamotrigine to levetiracetam and for the first time since being diagnosed, I have been a whole year without having a seizure. So now I am reapplying for my driving licence back! I never thought this day would come and had accepted my seizures
were probably here to stay.
 
“I found being diagnosed with epilepsy at university hard. I felt it took away a lot of my independence and stopped me from doing the things I wanted. But I found a way to turn things around and became an Epilepsy Action Accredited Volunteer when I was 20. I have learned so much about epilepsy and now it's not as scary anymore. I don't let my epilepsy stop me anymore and just find ways to make it as safe as possible so I ride my horse and ski.”
 
Riley
 
“Riley was born on June 3rd 2012 weighing 8lbs8oz. Throughout my pregnancy I saw a lot of health professionals because I was considered high risk. The local hospital where I was planning to have Riley wasn't used to dealing with women with epilepsy. They all came up with a plan that was very medicalised and controlled. I just went along with it because I didn't know any different and I wanted us to be safe.
 
“When I got to hospital I was already a long way through labour (9cm dilated) but they decided to follow the plan anyway. They gave me clobazam to reduce my risk of seizures and an epidural to control my pain, as they were worried that could trigger seizures.
 
“Both of these slowed my labour down and 12 hours later Riley still hadn't arrived and we had both become distressed. I was taken to theatre and she was delivered by forceps. It was very traumatic and my husband, Rich, wasn't told what was going on and thought we had died.
 
Clair had a difficult experience of pregnancy and brith with Riley
“After the delivery, I was in a lot of pain and very distressed and confused. The neurological team at the hospital decided to drop my epilepsy medication dose back down to my pre-pregnancy dose overnight putting me at risk of breakthrough seizures.
 
“Rich wasn't allowed to stay with me on the ward and Riley was placed in bed with me to feed for hours on end as she was very upset. This put her at a huge risk if I'd had a seizure, which, luckily, I didn't.
 
“Following the birth, my husband and I were both very upset and found those first few months really tough. I had some very low times in those first few months and looking back, I wish I'd found help. But we got through those tough times and then I loved being a mum. We put lots of safeguards in place to keep Riley safe if I had a seizure.
 
“We feel blessed that Riley doesn't seem to have been affected by my epilepsy medication or the seizure I had at the beginning of my pregnancy. She is now a healthy, happy three-year-old, and has grown up learning a lot about epilepsy. She knows exactly what to do if I have a seizure and is a pro at getting trains and buses!”
 
Meeting Kim
 
Kim Morley won the RCM South of England Midwife of the Year 2016 award
“Epilepsy Action approached me to write for the pregnancy diaries and help with the HealthE mum-to-be campaign. I found that was a really positive thing for me. I wanted to make sure other women got more support during pregnancy and being a new mum than I did. Sharing my story seemed a good way to do that.
 
“It was, in fact, while helping with some pregnancy and parenting workshops for the campaign, that I first met Kim.
 
“A few years on, we started thinking about another child as we wanted Riley to have a brother or sister. But the idea of going through that trauma again was too much so we looked at other options. We looked into adoption, but unfortunately were rejected because Riley was too young. That was when I decided to have a chat with Kim to see if the birth experience could be different.”
 
Benji
 
Kim helped Clair gain the confidence
to have her second baby, Benji
“Benji was born 2nd October 2015, weighing 9lbs. He is now nearly 5 months and doing well. I am breastfeeding him still and we are lucky because he sleeps a lot better than Riley did. He's a really happy, smiley baby and we feel really lucky to have him. Riley loves being a big sister and Benji thinks Riley's the best thing ever!
 
“Our birth experience with Benji couldn't have been any more different and most of that is due to Kim. The second time around, we just wanted things to be less traumatic and to be able to enjoy those first few months rather than battle our way through them.
 
“The first time we travelled down to see Kim (it's about 2 hours away from us) she gave us so much of her time. She just gave us the opportunity to talk about what had happened and to cry.
“She said she thought we had both suffered from post-traumatic stress following Riley's birth. She said things didn't have to be like that and we did have options to make a second birth a more positive one.
 
“Not long after that, I found out I was pregnant. I sent Kim a number of emails with questions and she just answered them in a calm reassuring way.
 
“We went down to meet her again and put my birth plan in place. Kim's knowledge about epilepsy and pregnancy is so incredible, that we just felt we'd found someone who could answer all our questions.
 
“Kim never told us what to do, she gave the control back to us. She asked us what we wanted and gave us all the facts and her own insight and together we came up with a plan.
 
Riley and Benji
“My biggest concern was that I didn't want the birth to be overly medicalised; the less intervention the better. Kim said that because my epilepsy seemed to be pretty well controlled, there was no reason why I needed lots of intervention.
 
“Kim gave us the confidence and medical backing to go to our local hospital and say we wanted a natural birth with low intervention. Kim made me realise I didn't have to say yes to everything the doctors said. She gave me the confidence to enjoy my pregnancy rather than worrying what might happen because of my epilepsy.
 
“When it came to labour I stayed at home for most of it as Kim had helped me come up with strategies to reduce my anxiety. I got to the hospital already ready to push so all the midwife had to do was catch Benji, pretty much. I just had a little bit of gas and air during pushing but other than that no other intervention – no clobazam, no epidural and no IV.
 
“I remained active during my labour, and I can remember the whole thing. Afterwards, I was able to just sit and cuddle Benji and even have a cup of tea and a shower and Rich was there the whole time. It was such a positive experience and my recovery after was so much better.”
 
Midwife of the year
 
“We were looking for a way to say thank you to Kim for all she did for us. When I saw the award, it seemed perfect. Without Kim, I don't know if we'd have felt confident enough to have another baby, and I wanted a way to say thank you for helping bring us Benji.
 
“I am so happy that she has won the south England region award! Kim doesn't realise how amazing she is. She is a very quiet person who doesn't shout about her achievements. And yet, she has made such a huge difference to the lives of so many women with epilepsy.
 
“She really deserves this award. I also hope it will highlight the need for better support for pregnant women with epilepsy to lead to better experiences for others.”
 
 
RCM awards
 
The RCM Annual Midwifery Awards 2016 will be held in London on March 8. The RCM will announce the winner of the Midwife of the Year award, for which Kim Morley is nominated. The Epilepsy Action HealthE mum-to-be campaign has also been shortlisted for an award at this event in the Best Charity Initiative category.