savannah's story

Hi everyone! My name is Savannah I am 24 years of age and am excited as well as a little nervous considering I have never really shared my story. I was diagnosed with epilepsy at the age of 16. It all started when I had taken a nap at my boyfriends house at the time and suffered what I thought had been my first seizure in my sleep. Turns out I was having multiple seizures in my sleep for lord knows how long. After a handful of EEG’s and some scans I was diagnosed pretty quickly but the diagnosis wouldn’t stick for long. In July of 2017 I had gone out to a local race trac with some friends. Since I had never gone before I was excited. Shortly after arriving I started not to feel well and asked my friends to drive me home. On the way home I ended up going into a grand mal seizure and had stopped breathing. I ended up starting to breath on my own again and remember waking up getting carried into the emergency room. I had never had a seizure where I would completely stop breathing or just went into one when I wasn’t sleeping before so i ended up just letting them take me into the hospital. Once I got there they checked me in asked me some questions and I was in a bed in no time. I remember the nurse coming in and telling me she was going to give me Ativan for the seizures and I said that would be fine. By that time my mom, sister, and grandma where already there in the room sitting by my side. She started to give me the medication and as soon as she did there was this voice that I had never heard before in my head tell me this is your last breath. In that moment I knew I was going to die. I could feel all the air leave my lungs. As I was looking over at my family not able to speak I started thinking to myself how I wish I could tell them one last time how much I loved them. After that everything started to fade away and eventually black. The nurse had given me a lethal dose of the Ativan. I had gone into cardiac arrest and was revived then put into a medically induced coma for almost a month. I remember waking up and not knowing what was going on. My family tried to cover it up and say I had only been there for a few days but I knew it had been longer judging by the looks of my hair and nails. I then realized I forgot how to read, write and walk. They then started to tell me what happened and I was in such shock I ended up having a pseudo seizure. This is when you typically have such severe trauma or a type of panic disorder that your body will start to shake uncontrollably. You will think you are having a seizure as well as others around you but the electrical activity within the brain is normal. This means it is your body and mind having the seizure not your brain. When this had occurred I was in a different hospital. I was hooked up to an EEG so when the other doctors saw that they than had changed my epilepsy diagnosis to conversion disorder/pseudo seizures. Even though they had all my previous records and actual recorded seizures from the previous hospital. I had tried to explain that to the doctors at the time but they just brushed off what I said and told me to keep happy thoughts in my head and to see a therapist. They had then went behind my back and told my family the diagnosis and never told me. I only found out because I had another seizure a few days after being released and my mom kept telling me to stop having seizures and that I needed to go to a therapist even when I tried to convince her otherwise. For years after that I believed it was all in my head and every time I had a seizure I thought it was my fault. My entire family would tell me to stop when I was actively having these seizures. They would tell me I have to stop having these seizures and that it wasn’t fair to others around me. After over a year of believing everything was in my head I had met my current boyfriend. In the begging of the relationship I was very up front about what I thought was conversion disorder at the time. He was so accepting and it never bothered him until he started witnessing the seizures for himself. He would always tell me the seizures I was having didn’t look like other seizures he had seen when he did his research on pseudo seizures. He then convinced me to go and get another opinion. It seems easy but it can be hard when your entire family believes you have conversion disorder. I had then scheduled with a new neurologist got an EEG and a scan and after 3 years of thinking it was all in my head I was diagnosed with petite mal seizures from a lesion on my brain. Years later I still have seizures but they are much more controlled than they where. I recently was also diagnosed kidney sponge disease where you get frequent kidney stones and infection. Also a possible autoimmune disorder that is causing me to have Postural Orthostatic Tachycardia Syndrome (POTS). Which causes me to have chronic fatigue and body aches. I will experience episodes that will cause me to have chest and neck pain, palpitations, tachycardia, shortness of breath, lightheadedness and fainting. This is from blood pooling in random parts of your body making your heart rate and blood pressure jump around. Even though I might have a few things going on I couldn’t be happier with my life. Ending up with all these diagnosis’s over the years has really changed me as a person but in a way it was the best thing that could of happened to me. It was definitely a wake up call and makes you appreciate every little thing that much more. I’m not a super hero and I don’t have super powers but I will always continue to fight like one. Not just for me but for everyone else out there. If you think I’m tough smile and remember you are just as tough as me.