I'm 3 years diagnosed and I'm using this as a sort of therapy .....a form of epilepsy may cripple you but I'll never stop promoting our strengths. ...... I live very happily but I deal with my epilepsy. ........
My diagnosis and my story so far
I was 4/5 months pregnant with my second daughter when I was diagnosed with epilepsy. Leading up to my diagnosis I had been experiencing these sensations, which I now know were auras. When these auras started, to describe them to anybody would have sounded bonkers. They would start with a doom like feeling in the pit of my stomach, closely followed by my senses going wild, I would get a taste and a smell that I couldn't describe, my hearing and sight would become distorted, my brain would be going barmy with feelings of deja vu and I would get an overwhelming surge of emotions that would consume my whole body that, I can only describe as a feeling of an outer body experience....... now I have never had an outer body experience so wouldn't exactly know how that would feel but that's the only way I can describe this quite frankly, terrifying experience.... even crazier I thought I was becoming psychic or being able to predict the future or something.
Now I could not describe the deja vu I was experiencing after an episode but at the same time the feelings were of such familiarity I was quietly taking all this quite seriously. Very bizarrely the duration of this ambush of my body would last 30 - 60 seconds and would leave me feeling exhausted with a terrible headache ...... I thought I was going crazy!!!!! I would be watching television, in bed reading, waking up in the morning, out walking with my daughter, at work and any other normal activity anyone would do with their day and my life became scary. As I was pregnant I put it down to maybe, anxiety, tiredness or any other conceivable reason why I was suddenly thrust into this nightmare. It was a real roller-coaster of emotions.
One night I googled these symptoms (I know it's not the smartest idea) and every search flashed up epilepsy...... I did confide this to my mom and partner but I think we were all a bit sceptical and unknowing of the condition and tried to find anything else logical to possibly explain all these feelings.
I always remained conscious during all this, which I now know were all petit mal seizures...... my first grand mal seizure will haunt me for the rest of my life. It was one dark, winter morning and I was at the bus stop with my then 3 year old daughter, we were going to my mother in laws so I could drop her off while I went to work..... we were waiting for the bus and suddenly these sensations started to consume me again and I thought, oh great here we go again, the next thing I remember is lying in the bus stop surrounded my paramedics and getting hysterical to know where my daughter was..... thankfully she was being comforted by another paramedic. I was taken into the ambulance when I could get to my feet and I just wanted my daughter near me. I remember looking at the time and 45 minutes had elapsed that I couldn't account for.... the bus stop was on a very busy road, it was dark, anything could have happened to my precious angel and that will torment me forever, traumatising.
I was taken to the hospital and my mother in law was contacted to notify her of what had happened and advised to get to the hospital as soon as possible. I don’t remember much from then on at the hospital, I just remember these auras were coming in clusters, they just kept coming and coming and was making me sick, I was terrified. When things had calmed down and I was able to explain to the doctors what I had been experiencing, there main concern was to make sure the baby I was carrying was ok and to arrange a number of tests. I was obviously kept in hospital and made as comfortable as they could, I had a variety of tests and scans first to ensure my baby was ok….. she was, thank god and then had to await for an MRI and cat scan the next day.
I was put on a ward for the night and my partner was able to stay with me for a while, during this time he was able to tell me a little bit of what our daughter could tell him about what had happened, “We was at the bus stop and mommy suddenly fell over, I cried and screamed and 2 men came to help us and called the ambulance and they stayed with me and looked after me until the ambulance came”……. It breaks my heart every time I think about that and it still reduces me to tears now. I would love to find the men who came to our aid, to thank them, also for my own peace of mind just to find out my daughter was safe and ok.
The next day I had various tests and scans done and the results showed I had temporal lobe epilepsy, it’s a condition that would have shown itself at some point in my life but it’s not uncommon for underlying conditions to come out in pregnancy, I spoke in depth with numerous specialist nurses and doctors about what I had been experiencing and all my symptoms were classic epilepsy signs. I was started on keppra to help control the seizures but I suffered terrible side effects so my medication was changed to lamictal and I take clobazam along side it for predictive seizures...... my seizures are triggered by tiredness, stress and if I'm poorly and the doom like feeling I first experienced, I now call my warning signs.
It's taken me along time to accept my diagnosis and it's not a condition I could grow out of, I will have it for life! I have to give my head a wobble sometimes because I can let it bother me and I feel sorry for myself at times but I do know how lucky I am, on a spectrum I know I'm on the less serious end. I know some types of epilepsy can completely blight people's lives and they have grand mal seizures with absolutely no warnings. As mad as it sounds I am grateful that I get warning signs so I can make myself and my children safe. I've had to teach my eldest daughter how to put me in the recovery position, to stay by my side should I ever lose consciousness again, keep her sister safe, find my phone to call an ambulance and never go with anyone..... it's been just over 3 years since I had my first grand mal seizure and was diagnosed with epilepsy and my eldest daughter still remembers everything that happened that morning and if we ever go past the spot where it all happened she will point it out and say, "look mom, that's where you fell over and I was really scared"...... rips my heart out every time
I'm still working, looking after my family, keeping a nice house and maintain a "normal" life. I still have petit mal seizures at times, I've had 3 grand mal seizures in total but I have a great support system around me and you just have to get on with things. I have an amazing specialist nurse who listens to me, understands me, is patient with me and is respectful and courteous of my feelings.... she really makes me feel like she genuinely cares about me and she's a massive support.
I've struggled with taking my medication at times and been quite stubborn about accepting my diagnosis and having to rely on a number of pills to help me function safely on a daily basis but the thought of ever putting my child's safety in jeopardy ever again strikes the fear of god into me that I have to accept it.