Hello, I'm completely new to all of this and very grateful to have somewhere, and someone, to talk to.
My name's Cait, I'm 24 and had my first seizure in October. I was very stressed, sick with some unknown virus (still don't know what it was, I was told samples were sent to the CDC), and just had a lot going on. I don't remember any of this (or many things from recent years), but I was told I came down to the kitchen in the morning, where my grandparents told me I said I didn't feel good, then fell to the floor and began convulsing. I was rushed to the hospital, where I continued to seize, in and out of status, for days, I'm not exactly sure how many but my father told me I had probably somewhere around fifty seizures. They finally seemed to get my seizures under control, and I returned home after three and a half weeks.
As I said, this was in October, and the summer I have completely forgotten- along with a lot of memories from recent years. Luckily I take lots of pictures wherever I go, and I blog and keep journals. I'm also very lucky that I haven't forgotten my boyfriend of two years, who incredibly was by my side through every moment of this, and still is. I have temporal lobe epilepsy, so I assume with that the memory loss is fairly common.
In November, I woke up one night when I was by myself very confused, picked up my phone and couldn't figure out what words or texts messages were. I figured I was just sleepy, and went back to sleep. Later, after researching, I realized I could have seized during my sleep.
In December, I awoke very confused again- but this time I awoke to my boyfriend hovering over me, asking if I was alright. After a few minutes of figuring out how to make my mouth move and speak, he informed me that I had had another tonic clonic seizure. We went to the hospital, where we found that the level of one of the meds I'm on, Dilantin, was very low. They gave me a booster dose, and sent me home.
Earlier this month, four weeks later after the last episode, I had another seizure. I was by myself, but this was the first time I was awake and aware that I was about to seize. And, let me say, I still cannot get over how terrifying it was. I was standing, half my body went numb so I sat on my bed, then I saw my fingers, hand, then arm start shaking- and I knew what was happening, but for some reason believed I could stop it. Next I knew, I was on my floor, had broken my glasses and cut my eye and was surrounded by paramedics. I was rushed to the hospital again, and again found that my Dilantin levels were low. They gave me more through an IV, which was very, very painful at first, so they had to dilute it with saline.
After all that, I guess I should say how this happened- I was in a motorcycle accident six years ago, had a bad injury which broke my jaw and left me deaf in my left ear- temporal region injury, hence this type of epilepsy I suppose.
So... that's the story so far. Other thoughts, though, include:
1) Medication I'm on- I've always been on, since I first was released from the hospital (please excuse my spelling)- Dilantin, Klonopin, Keppra, and.. oof one that I just can't remember at the moment, it's a big blue pill? After the last seizure, my neurologist started me on Lamictal XR. I've heard bad things about Dilantin, and I want to get off of it ASAP- my neurologist wants to get me off of it too.
2) I'm also on birth control (Tri-Sprintec, I've been on it for years), and these seizures seem to be happening every four weeks, when I'm on the placebo pills. I've heard of the hormonal type of epilepsy (can't think of the name at the moment, my memory and thought process really still aren't that great :/), and my neurologist is aware of this and said it may be possible.
3) I have a really great support system, and everyone keeps telling me that this is all about finding the right balance of meds, and to have patience. I have very, very little patience, and am slowly losing my mind being unable to work, go to school, or drive.
4) One of the things that bothers me the most is that the idea of having no control over my own body terrifies me. Every time I think of the last seizure I had my eyes tear up, and I have to find a way to get my mind off of it.
So... Any comments, advice, ways you have all dealt with this would be amazing to hear. I just want them to figure all of this out, and though I realize my life will never be the same, I want it to be stable again and be able to figure out my new "normal," and get it moving again.
Thank you so much for any type of response....
My name's Cait, I'm 24 and had my first seizure in October. I was very stressed, sick with some unknown virus (still don't know what it was, I was told samples were sent to the CDC), and just had a lot going on. I don't remember any of this (or many things from recent years), but I was told I came down to the kitchen in the morning, where my grandparents told me I said I didn't feel good, then fell to the floor and began convulsing. I was rushed to the hospital, where I continued to seize, in and out of status, for days, I'm not exactly sure how many but my father told me I had probably somewhere around fifty seizures. They finally seemed to get my seizures under control, and I returned home after three and a half weeks.
As I said, this was in October, and the summer I have completely forgotten- along with a lot of memories from recent years. Luckily I take lots of pictures wherever I go, and I blog and keep journals. I'm also very lucky that I haven't forgotten my boyfriend of two years, who incredibly was by my side through every moment of this, and still is. I have temporal lobe epilepsy, so I assume with that the memory loss is fairly common.
In November, I woke up one night when I was by myself very confused, picked up my phone and couldn't figure out what words or texts messages were. I figured I was just sleepy, and went back to sleep. Later, after researching, I realized I could have seized during my sleep.
In December, I awoke very confused again- but this time I awoke to my boyfriend hovering over me, asking if I was alright. After a few minutes of figuring out how to make my mouth move and speak, he informed me that I had had another tonic clonic seizure. We went to the hospital, where we found that the level of one of the meds I'm on, Dilantin, was very low. They gave me a booster dose, and sent me home.
Earlier this month, four weeks later after the last episode, I had another seizure. I was by myself, but this was the first time I was awake and aware that I was about to seize. And, let me say, I still cannot get over how terrifying it was. I was standing, half my body went numb so I sat on my bed, then I saw my fingers, hand, then arm start shaking- and I knew what was happening, but for some reason believed I could stop it. Next I knew, I was on my floor, had broken my glasses and cut my eye and was surrounded by paramedics. I was rushed to the hospital again, and again found that my Dilantin levels were low. They gave me more through an IV, which was very, very painful at first, so they had to dilute it with saline.
After all that, I guess I should say how this happened- I was in a motorcycle accident six years ago, had a bad injury which broke my jaw and left me deaf in my left ear- temporal region injury, hence this type of epilepsy I suppose.
So... that's the story so far. Other thoughts, though, include:
1) Medication I'm on- I've always been on, since I first was released from the hospital (please excuse my spelling)- Dilantin, Klonopin, Keppra, and.. oof one that I just can't remember at the moment, it's a big blue pill? After the last seizure, my neurologist started me on Lamictal XR. I've heard bad things about Dilantin, and I want to get off of it ASAP- my neurologist wants to get me off of it too.
2) I'm also on birth control (Tri-Sprintec, I've been on it for years), and these seizures seem to be happening every four weeks, when I'm on the placebo pills. I've heard of the hormonal type of epilepsy (can't think of the name at the moment, my memory and thought process really still aren't that great :/), and my neurologist is aware of this and said it may be possible.
3) I have a really great support system, and everyone keeps telling me that this is all about finding the right balance of meds, and to have patience. I have very, very little patience, and am slowly losing my mind being unable to work, go to school, or drive.
4) One of the things that bothers me the most is that the idea of having no control over my own body terrifies me. Every time I think of the last seizure I had my eyes tear up, and I have to find a way to get my mind off of it.
So... Any comments, advice, ways you have all dealt with this would be amazing to hear. I just want them to figure all of this out, and though I realize my life will never be the same, I want it to be stable again and be able to figure out my new "normal," and get it moving again.
Thank you so much for any type of response....
