BY RHIANNON BEth
My name is Rhiannon and I am afraid to talk about my condition.
Why? You may ask...well its an illness no one fully understands – not even doctors.
It’s a condition in which I have seizures without rhyme or reason; my seizures look like epileptic seizures and so can be mistaken for them. There is no cure, no medicine to reduce them; just CBT and talking therapy.
On March 30th this year I had several blackout spells, my parents were away and I was home alone with a friend. At the time I was under investigation for absence seizures and had been referred to the clinic and neurologist for an appointment on April 3rd. I was taken into hospital for observations but was discharged with nothing new learned. I was confused and also upset as to why no one knew what was going on, my bloods came back clear and PCR and OBS were brilliant.
April 3rd I had my appointment and the neurologist suggested I had JME (Juvenile Myoclonic Epilepsy) so I was sent home with various leaflets and sheets. My seizures were daily and got referred to have an EEG and cerebral MRI. During the dates waiting for these appointments I was admitted to hospital a further 11 times!!!
After my EEG and MRI came back clear (after also having a CT) it was concluded that I had Non-Epileptic Attack Disorder – a condition in which my brain and bodies way to respond to physical and psychological trauma and stress was to have a seizure. These cases are stereotypically seen in ex-armed force members with PTSD, so why was I having them?? I wasn’t under stress? Nothing traumatic happened that I knew of! So why me?
I was then told it can happen to anyone and there is NOTHING that predisposes you to have this condition. During this time my hair started to fall out and thin, I was put on iron tablets as I was anaemic, and I was also put on anti-depressants to help with my depression and anxiety.
In the space of 3-4 months my life came to a grinding halt. I left college and work and was mostly indoors in fear of having a seizure when I went out. Unfortunately it did happen and on several occasions ambulances were called out for me when I left the house. Its now September – and since then I have been admitted to hospital a further 9 times – twice for 2-3 days due to difficulties afterwards. My seizures are no longer daily and I have them once to three times a week. This condition is not easy to say the least but I have met some amazing people in groups online who are going through the same thing. I’ve learned to be more open and talk about my mental health and seizures, I’ve also learned that healing is definitely not linear!!!
For someone with a condition that so many are experiencing, yet getting lost in the system because a doctor doesn’t understand or says its fake and ‘pseudo’ its terrifying. I am scared, because I don’t know what this means for my future, I don’t know what it means for anyone else’s future with this condition. We’re taught that because we are sick – our lives should be less fun compared to those that aren’t sick, look at me!! I’m still having fun! I’m accepting this condition for what it is and I’m learning to live with the illness rather than against it. Please remember that healing is not linear – there will be slip ups and bumps – but you’ll get there!
I’m daring to live without limits again and so should you!
For more information on Non Epileptic Seizures, please click here.