I am 31 years old, happily married, a mother to a 2 year old, and a step-mom to a 14 year old bonus daughter who lives with my husband and I. I've been living with epilepsy for the past 6 years and suffer from Grand Mal Seizures as well as Peti Mal Seizures.
I was first diagnosed in December of 2006 at the age of 25. I had stayed the night at my friend Ambers' apartment and had went outside that morning to talk on the phone. All I remembered was trying to get back in the door not knowing what had happened to me. I had wedge sandals on and my feet were covered in blood as well as my hands and mouth. She immediately became hysterical asking me what happened. I could hardly talk, not knowing myself what had happened. The first thing we had thought was that maybe someone had jumped me. How else do you explain not remembering a single thing and being covered in blood?
She drove me to the hospital emergency room where they immediately admitted me to the hospital. Of course, they had asked my friend several questions about me including drug use and alcohol. She had told them that I had been drinking a lot lately. She left out the part that I had went on a 4 day cruise. So yes, I had been drinking a lot lately. lol They immediately thought I was some sort of alcoholic and began doing blood and urine testing as well as an EEG, which stands for Electroencephalogram. This is a graphical record of electrical activity of the brain. After several tests, they ruled out drug use and alcoholism. (I could have strangled her for that one lol). They then came to the conclusion after the EEG that I had suffered a Grand Mal Seizure. I had a severe concussion so they kept me in the hospital for several days. The blood on my feet and hands were from my muscles clenching up and digging my toes and hands into the pavement.
At that time, I did not have medical insurance. They had prescribed me Lamictal, which was a new medication and was around $1,500 for a 1 month supply without insurance. At that time, there was no generic form of that drug available. Obviously, that was NOT in my budget. I was, however, lucky enough to acumulate a $10,000 hospital bill.
I did not suffer another seizure until mid September of 2007. My then husband, from my previous marriage, and I were on our honeymoon. I had woke up that morning, went to the bathroom, remember walking back to the bed, and that was it. I woke up hanging off of the bed with my then husband on the phone with my dad. I had suffered another seizure. This time, I was not covered in blood. But I did have a pretty good black eye from hitting my face on the safe in the hotel room. He got dirty looks the whole cruise. I can only imagine what they had thought. Though I hated to tell them that if either of us needed to be worried, it would have been him. lol
After we had got married, I was then eligible to be on his medical insurance. I then began taking about 500mg (if I remember correctly) of Lamictal, which was finally covered under a prescription plan. In November of 2008, I had another morning seizure. This time I was in bed on the computer. Needless to say I had busted the screen on the computer. This one was more difficult when I became conscious. I was home alone, with no one there to help clue me in as to what just happened. The first thing I thought of was my ex boyfriend. In that moment in time, I honestly thought he was my current boyfriend. I found my phone, actually remembered his number and called him, and began trying to explain what I thought just happened to me. I remember his voice. He said, "Tris, is this Tris?". I screamed in to the phone in frustration, "YES, it's Tris.... I need you to come home". He replied, "Tris, I think you need to call your husband". I asked him what he meant. I wasn't sure of the year or the month. All I had remembered was him. He then reminded me that we had been broke up for quite some time. He stayed on the phone with me for a few minutes until I calmed down and began to remember where I was, and eventually who my husband was. I can't even begin to explain how embarassing that was. I never told my ex husband the part about me calling an ex boyfriend. Not only was it embarassing. But I felt like I was literally going crazy. How do you forget something like that? Like being married?? Maybe it was a sign. lol Because we later divorced.
My current husband and I became pregnant in 2009. I had not been on seizure medication for the past year because I had lost my insurance through my last divorce. And once again, could not afford the prescriptions. When I was finally put on my husbands insurance, my OBGYN strongly recommended that I go back on my seizure medication while I was pregnant. The side effects of Lamictal while pregnant included a high risk of birth defects. I was not willing to take the medicine. I decided to leave that in God's hands. In the last trimester of my pregnancy, I had 5 or 6 grand mal seizures, all resulting in an ambulance ride to the hospital. I had one of the seizures in the shower. I was getting ready that morning to go to a checkup at the doctor. My husband, Thom, heard a loud crash. I had collapsed in the shower, broke the faucet off of the wall, and had hot water shooting out over my body when he ran in. I'm not sure how he did it. But he had managed to get me out of the shower, into the bedroom, and fully dressed by the time the ambulance arrived. All of this while I was unconcious. The rides in the ambulance seemed like they took forever. Each time I was praying to God that he would save my unborn child. Not only did the ambulance ride seem like an eternity, but I felt like I couldn't breath until we got into the emergency room and hooked up to the monitors for them to check the baby. Each time we were blessed with good news. I realized that not everyone with epilepsy had been so lucky and can't imagine the pain those mothers and families had went through.
On January 2nd of 2010 I gave birth to a healthy 8lb 10oz baby boy. When Kyland was 2 weeks old, I was sitting up in bed feeding him early in the morning. My husband was in the kitchen. He heard the baby crying and ran into the room. I had begun seizing with my 2 week old baby dangling from my arms hanging off of the bed. Thankfully Thom was able to get the baby out of my arms and make sure he was safe. After I came to, he told me what happened. I could see a red mark on my sons head where he hit the night stand next to the bed. We rushed to the hospital, where the E.R. nurses asked me if I really had seizures or if I was really just abusing my child. After going several rounds with the nurses and them requesting my medical records to ensure that I did infact have epilepsy, Kyland was checked out and released. They said that he was perfectly fine. Later, his pediatrician told me that I should never be left alone with my son. Unfortunately, I don't have anyone that can put their life on hold to stay at home with me while my husband is at work every day. I became terrified to pick up my own baby, to hold him, to even be left alone with him.
When Kyland, my son, was a few months old, I had another seizure. I remember the events prior, but not during or immediately after. I had been sitting at the computer desk in the kitchen, with Kyland in his bouncy chair in the floor right next to me. The next thing I know, I'm laying in bed, Kyland is laying on the bed on his boppy pillow right next to me and is tucked in perfectly. I jump up and go look in the kitchen. His chair was bent and items on the bottom shelf of the desk were scattered all over the floor. It was obvious to me that I had a seizure. It was apparent that I had fallen on the baby since his chair was bent. How did we both get to the bedroom and how was he tucked in perfectly right next to me. Some say it was probably instinct for me to get us both to the bedroom and make sure he was ok. I honestly have no clue. But what I do know is that the good Lord and some guardian angels were looking over both of us that day. They had to be. How do you even begin to explain that???
After that incident I've had several more seizures over the past couple of years. They had actually diagnosed me with JME, which is Juvenile Myoclonic Epilepsy. This is basically a form of epilepsy where your seizures occur within the first two hours of waking up in the mornings. I thought the doctor was crazy at first. Of course, the first thing I did was sit down at a computer and try to do research myself. But it made perfect sense. ALL of my seizures were within two hours of me waking up in the mornings. They had added another prescription to my Lamictal. I am now taking Keppra as well as Lamictal, both daily. About two months ago, I had begin having severe pain in my hands, arms, and legs. It would come and go every so often. My primary doctor ran a blood panel and told me that I had came back positive for Lupus. So I've now been referred to a Rheumatologist. I have not been for that appointment yet. But I'm now starting to wonder if one has to do with the other. I've read that seizures can be a symptom of Lupus. But if I had Lupus when I was first diagnosed with Epilepsy, wouldn't they have found that when they did blood panels before? I'm not sure.
A few nights ago as we got in bed, I begun to play around on my ipad, as I usually do when I first lay down. The next thing I knew, my husband was trying to wake me again telling me that I had a seizure. If my diagnoses was JME, then why am I now having seizures at night BEFORE I go to sleep. I have a feeling there is more to my story then what I already know. And am hoping that by posting this blog and documenting my journey, I will meet others that have the same disorder. I would love to share my story as well as hear others, so that we may learn from each other. I can only hope that my blog does not only let others know that they are not alone, but helps to increase Epilepsy Awareness. If only by one person, I will feel like I've accomplished something. November is Epilepsy Awareness Month. Wear your purple proudly!
All I ask is that if you comment on my blog please be respectful. Other than that, please let me know if you have any questions or any advice! Thanks so much and feel free to subscribe!
