The story behind why we wanted to support Epilepsy Action ...
A post from Sara - August 2015:
In August 2014 I was diagnosed with epilepsy. I'd had a few strange episodes in the previous months where I came round on the floor feeling like I had run a marathon. My friends and I had gone to V Festival when the defining moment came. I was watching The Killers perform when I had a seizure in the middle of the crowd. Once I came home, I was referred to a neurologist, had a MRI scan and an EEG. In the same day, I was given the diagnosis of Temporal Lobe Epilepsy (with secondary generalisation). So, in medical terms, that means my seizures start in one part my brain, but then can spread to the whole brain causing a tonic clonic seizure (the one normally seen on TV!).
I was more concerned about how it would affect my life ... could I drive? Would I be able to work? What would my friends and family think? I stopped driving straight away and that was a huge blow to me. I felt I had lost all my independence. I was advised not to be left alone in the house and not go out alone - it was as though I had gone back 15 years in my life. Practical things changed such as not being able to have a bath (for a risk of drowning), not locking the door when in the bathroom etc. These changes to my day to day life are what I found hardest.
Within just a few days, I started my first medication. With anti-epileptic medication, they increase the dose every few weeks until you reach the dose the neurologist wants you on (this can take months!). The first medication I started was called Keppra. Just a few weeks into my medication I was feeling tired all the time, however, I couldn't sleep. One of the triggers for my seizures is tiredness/not sleeping so this was a vicious circle for me. A few dose increases later it still wasn't really improving but I wasn't sure if this was normal. I started to feel low; the medication had made me lose all my energy and the feelings that make me who I am.
The neurologist decided to take me off this medication due to the side effects (but they can't stop the medication straight away, they wean it the same as they increase it). I started to take a medication called Lamotrigine as well. About a week before Christmas, while still switching between medications, I had a seizure at home hitting my face and head. I spent the night in a hospital bed with a black eye caused by my seizure. After I returned home, I then developed a rash with the medication, so was put onto my third medication. However, after another seizure and constant vomiting led me to another hospital stay, this tablet was also stopped.
I’m now onto my fourth medication, Lacosamide. The side effects of this one are considerably milder compared to the other ones. It makes me have a dry mouth and dry eyes. I continued to have seizures whilst the medication was increased, but I had noticed that they definitely had started to reduce. I spent another few nights in hospital back in May, however this was due to having a vomiting bug and not being able to keep my medication down, causing a seizure (another nice black eye) - I took this as a good sign my medication was working.
Throughout the last year, a lot of the time I have tried to hide my epilepsy due to embarrassment. It was also due to a lack of understanding and the stigma around the condition. Most people have been very supportive throughout the whole process and I am eternally thankful to all those people. However it is the minority with comments that have caused me upset and to lose my confidence - I believe these comments stem from a lack of understanding regarding the condition.
Epilepsy Action do a lot of work to help break the stigma of epilepsy and teach people regarding the facts of epilepsy. The charity have also helped a lot supporting me, my friends and family and work colleagues to have a greater understanding of the condition after being diagnosed, providing resources and expert advice. They have helped me become more confident in dealing with my symptoms and being able to talk about my epilepsy.
As a thank you, we want to help give something back and support others who need the help Epilepsy Action provide.
Please see the blog on this website for further posts and information regarding living with epilepsy. Thanks to Jonny for convincing me to write this and to do a blog!
Sara
p.s. I would like to thank everyone for everything they have done for me since being diagnosed, I couldn't have got through the last year without all your love and support. (You all know who you are - I would be here all day if I thanked you individually)"
A post from Sara - August 2015:
In August 2014 I was diagnosed with epilepsy. I'd had a few strange episodes in the previous months where I came round on the floor feeling like I had run a marathon. My friends and I had gone to V Festival when the defining moment came. I was watching The Killers perform when I had a seizure in the middle of the crowd. Once I came home, I was referred to a neurologist, had a MRI scan and an EEG. In the same day, I was given the diagnosis of Temporal Lobe Epilepsy (with secondary generalisation). So, in medical terms, that means my seizures start in one part my brain, but then can spread to the whole brain causing a tonic clonic seizure (the one normally seen on TV!).
I was more concerned about how it would affect my life ... could I drive? Would I be able to work? What would my friends and family think? I stopped driving straight away and that was a huge blow to me. I felt I had lost all my independence. I was advised not to be left alone in the house and not go out alone - it was as though I had gone back 15 years in my life. Practical things changed such as not being able to have a bath (for a risk of drowning), not locking the door when in the bathroom etc. These changes to my day to day life are what I found hardest.
Within just a few days, I started my first medication. With anti-epileptic medication, they increase the dose every few weeks until you reach the dose the neurologist wants you on (this can take months!). The first medication I started was called Keppra. Just a few weeks into my medication I was feeling tired all the time, however, I couldn't sleep. One of the triggers for my seizures is tiredness/not sleeping so this was a vicious circle for me. A few dose increases later it still wasn't really improving but I wasn't sure if this was normal. I started to feel low; the medication had made me lose all my energy and the feelings that make me who I am.
The neurologist decided to take me off this medication due to the side effects (but they can't stop the medication straight away, they wean it the same as they increase it). I started to take a medication called Lamotrigine as well. About a week before Christmas, while still switching between medications, I had a seizure at home hitting my face and head. I spent the night in a hospital bed with a black eye caused by my seizure. After I returned home, I then developed a rash with the medication, so was put onto my third medication. However, after another seizure and constant vomiting led me to another hospital stay, this tablet was also stopped.
I’m now onto my fourth medication, Lacosamide. The side effects of this one are considerably milder compared to the other ones. It makes me have a dry mouth and dry eyes. I continued to have seizures whilst the medication was increased, but I had noticed that they definitely had started to reduce. I spent another few nights in hospital back in May, however this was due to having a vomiting bug and not being able to keep my medication down, causing a seizure (another nice black eye) - I took this as a good sign my medication was working.
Throughout the last year, a lot of the time I have tried to hide my epilepsy due to embarrassment. It was also due to a lack of understanding and the stigma around the condition. Most people have been very supportive throughout the whole process and I am eternally thankful to all those people. However it is the minority with comments that have caused me upset and to lose my confidence - I believe these comments stem from a lack of understanding regarding the condition.
Epilepsy Action do a lot of work to help break the stigma of epilepsy and teach people regarding the facts of epilepsy. The charity have also helped a lot supporting me, my friends and family and work colleagues to have a greater understanding of the condition after being diagnosed, providing resources and expert advice. They have helped me become more confident in dealing with my symptoms and being able to talk about my epilepsy.
As a thank you, we want to help give something back and support others who need the help Epilepsy Action provide.
Please see the blog on this website for further posts and information regarding living with epilepsy. Thanks to Jonny for convincing me to write this and to do a blog!
Sara
p.s. I would like to thank everyone for everything they have done for me since being diagnosed, I couldn't have got through the last year without all your love and support. (You all know who you are - I would be here all day if I thanked you individually)"