northernstarchik
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Hello all that may be reading this post. My name is Nina, i'm 25 and from southern california. My boyfriend Robert of almost 3 years happens to have epilepsy - he has had it since he was about 18. I met him when I was 22 and we dated and so on. It wasn't until maybe a month or two that he finally told me what he had. I could tell when he told me that it was something he was worried about letting me know and that this could change the way things were or that I would no longer want to date him. Of course, throughout that short month or two, I had no idea what a seizure would really be seen like. Nonetheless, it did not bother me and didn't change the way I felt about him. So about 5 months into the relationship, he had a seizure at night. I will never forget that night. I was sooo scared and worried for him, seeing the blood go down the side of his face, seeing his eyes roll back, having to feel his arms and legs go out of control and constrict. It was very new to me. His parents were around and were already in auto-pilot mode with how to deal with him during this time. After it happened, he was sound asleep like i've never seen. I remember after it all occured, I was sobbing uncontrollably because now I knew why he was really avoiding having to tell me what he had months before. Who could really deal with this on a regular basis? I can say honestly it gave me second thoughts, but it did not waver how I felt about him. Since then, over the past 2 years, i've seen so many of his seizure episodes that it doesn't affect me as it did that first time. And I can see why, I did not expect him to have a seizure and it took me by surprise. Since then, i've been cautious and do think twice about "what if he has a seizure while we're here..... or there... etc" - that's just how my mind works. I like to think of how I can react in any situation that may occur if he were to have one, at any unexpected time.
We both live in Southern California and he lived at home, as did I til we both moved in with each other last August. He was laid off from his job of almost 4 years in January of 2008, while I'm still employed at my current job (been there about 3 years). Since he's been unemployed, he no longer has his medical insurance, which was greatly needed, because it paid for the Keppra medication he was taking on a daily basis. With insurance, for a bottle it was about $35 bucks, now without insurance, its $217 a bottle -for a months taking. This situation, financially for just those pills is just horrible. I tried to get him on my insurance through work, but because we are not married, I was told I was not able to. We have found ways through his neurologist to get him cheaper medication, which is "Levetiracetam" for lesser cost, but it's still about $170 for a month's taking.
With money being so tight, 3 weeks ago, he had no more pills and had to pay his car insurance or buy new bottle of pills - we had to go and get that insurance and he was without his pills for a week. Last week, he ended up falling over on the end of the bed and hit his face first onto the floor. He bruised his nose, bruised his forehead and bled from his knee. It all happened so fast, I could only watch as it happened. The worst for this situation and which has led me to this forum was this past Friday. He went outside around 11am to go check the mail, as I was sick in bed. He was gone for a bit, but I didn't think much of it. Next thing I knew, I had a knock at the door - it was my neighbor telling me my boyfriend was outside on the floor, bleeding. I ran out in my pajamas, to find him and sure enough, he was on the pavement, having a seizure and bleeding all over his face. He had severe scrapes to his cheekbone area, his lower chin, above his neck, chipped his front 4 teeth, and scratched his brand new glasses. He was totally unaware of course for the duration of this and then I was told that someone had called the ambulance. He went to the hospital and we were there for a few hours. Because he has no insurance, they really didn't care to treat him at all. Just did the CAT Scan and that's basically it. No one cleaned the blood off his face, no one gave him ice for his swelled up upper lip, NOTHING. Last time he was taken by ambulance to the ER, (when he had insurance) he was given medicine, etc. You know, all the good stuff. This time, nothing at all. I had to ask 5 different nurses walking around the ER for some ice and for something to clean his face. All I ever got was the ice. Nothing is worse than feeling helpless, and that's how I felt for him while there. I could have given him more care at home that what they gave us. I was thankful he got the CAT scan, but basically that's all they did. Now we have the bill for his ambulance ride, and that alone w/o insurance is enough to make me run for the hills.
Since then, one of his four front teeth has completely chipped off, his scarring on his face will take some time to heal. He doesn't really prefer to leave the house because he doesn't like how his face looks. We got his parents to help pay for a bottle of his pills, so he's good for now. I just really worry. I work full time and I do often think "what if he has one while i'm gone at work?" Its scary knowing you can't always be there for someone, especially with someone who has seizures. They are unexpected and can happen anytime - though with him, 98% of the time, he's had them at night. Only twice can I think he's had them during the day, and last week is being one of them.
There's the story so far. I hope to get some good feedback from anyone who replies to this post. It'd be great to get some insight and to know that we are not the only ones who have this kind of situation.
We both live in Southern California and he lived at home, as did I til we both moved in with each other last August. He was laid off from his job of almost 4 years in January of 2008, while I'm still employed at my current job (been there about 3 years). Since he's been unemployed, he no longer has his medical insurance, which was greatly needed, because it paid for the Keppra medication he was taking on a daily basis. With insurance, for a bottle it was about $35 bucks, now without insurance, its $217 a bottle -for a months taking. This situation, financially for just those pills is just horrible. I tried to get him on my insurance through work, but because we are not married, I was told I was not able to. We have found ways through his neurologist to get him cheaper medication, which is "Levetiracetam" for lesser cost, but it's still about $170 for a month's taking.
With money being so tight, 3 weeks ago, he had no more pills and had to pay his car insurance or buy new bottle of pills - we had to go and get that insurance and he was without his pills for a week. Last week, he ended up falling over on the end of the bed and hit his face first onto the floor. He bruised his nose, bruised his forehead and bled from his knee. It all happened so fast, I could only watch as it happened. The worst for this situation and which has led me to this forum was this past Friday. He went outside around 11am to go check the mail, as I was sick in bed. He was gone for a bit, but I didn't think much of it. Next thing I knew, I had a knock at the door - it was my neighbor telling me my boyfriend was outside on the floor, bleeding. I ran out in my pajamas, to find him and sure enough, he was on the pavement, having a seizure and bleeding all over his face. He had severe scrapes to his cheekbone area, his lower chin, above his neck, chipped his front 4 teeth, and scratched his brand new glasses. He was totally unaware of course for the duration of this and then I was told that someone had called the ambulance. He went to the hospital and we were there for a few hours. Because he has no insurance, they really didn't care to treat him at all. Just did the CAT Scan and that's basically it. No one cleaned the blood off his face, no one gave him ice for his swelled up upper lip, NOTHING. Last time he was taken by ambulance to the ER, (when he had insurance) he was given medicine, etc. You know, all the good stuff. This time, nothing at all. I had to ask 5 different nurses walking around the ER for some ice and for something to clean his face. All I ever got was the ice. Nothing is worse than feeling helpless, and that's how I felt for him while there. I could have given him more care at home that what they gave us. I was thankful he got the CAT scan, but basically that's all they did. Now we have the bill for his ambulance ride, and that alone w/o insurance is enough to make me run for the hills.
Since then, one of his four front teeth has completely chipped off, his scarring on his face will take some time to heal. He doesn't really prefer to leave the house because he doesn't like how his face looks. We got his parents to help pay for a bottle of his pills, so he's good for now. I just really worry. I work full time and I do often think "what if he has one while i'm gone at work?" Its scary knowing you can't always be there for someone, especially with someone who has seizures. They are unexpected and can happen anytime - though with him, 98% of the time, he's had them at night. Only twice can I think he's had them during the day, and last week is being one of them.
There's the story so far. I hope to get some good feedback from anyone who replies to this post. It'd be great to get some insight and to know that we are not the only ones who have this kind of situation.
