Embarrassed

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Alright I'm new to this site and have never tried to describe what my symptoms or life is like ever since this started happening to me. I've had these random "shakes" in my upper body since I was probably like 15-16,but only I noticed them. A couple years back I overdosed on benadryl (one of the biggest mistakes in my life) and I was hallucinating hardcore and tried to drive my truck home, wrecked into another car slightly, then finally made it home.. I couldn't find my phone in my truck and I was freaking out. I guess my mom was watching me from the window and said it was like I was electrocuted and flew out of my truck onto the ground and started having a grand mal seizure. I woke up in the ambulance and it goes from there. They diagnosed me with epilepsy. The neurologist told me that a seizure may have happened at any time but this was the straw that broke the camels back. Anyways, ever since then they have been trying me on different meds for my shakes. I'm on lamictal now and it works for the most part. I think I need to start taking them at exactly the same time everyday instead of ballparking it. But sometimes just randomly throughout the day I'll start getting these jerks in my upper body. Everybody notices it and it's so embarrassing. I can't take it. It happens in the mornings a lot like it's supposed to. And just throughout the day sometimes. I do smoke weed and cigarettes but I don't really think those things affect it for me. I drink occasionally and I know that doesn't affect it. It actually calms my nerves some. When it happens I start to get nervous and very anxious. I'm always anxious it seems like. It sucks. But when I start to get anxious after it happens more and more especially when I'm with people. People ask me if I'm okay all the time and sometimes poke jokes about me having seizures. I've probably had 10 seizures since I overdosed a few years back. These jerks or shakes are really starting to put me on my last straw. I'm 21 with no car,my girlfriend who's younger than me drives me around which makes me feel like a bitch. I stress so hard but can't help it, I sleep around 7 hours a night, I'm usually always anxious. I don't know what it's like to be really happy. It makes me not want to leave my house. If anyone can give me advice or just talk me through anything I would be grateful.

Comments

WelcomeSo you get jerks now

Submitted by just_joe on Mon, 2015-08-17 - 16:16

WelcomeSo you get jerks now and then. If you have been having the jerks from time to time those jerks could have been different seizures. Not all seizures are grand mal. Smoking cigs is ok and pot does calm down the nervous system. But do you know if the pot is laced with anything? As for drinking. true ot seems calm you down but it also interferes with your seizure medications if you drink more than a beer or a glass of wine in a 4 hour time period.Like you posted meds should be taken at the same time daily. If 2 times a day those times need to be 12 hours apart.Now driving__________ Well at least you drove and may be able to again depending on if your seizures can be controlled.Yes seizures suck BIG TIME. But would you rather have a heart condition or diabetes or some other ailment? It is something that you need to learn how to deal with and live with. You seem to want to control everything when in reality all you can control is YOU. You like your GF and are fortunate to have her drive you around. You have been dealing with epilepsy for a short time compared to others whose seizures are more frequent and stronger. I am fortunate to have found a neurologist that worked with me to get better control of my seizures. Not only did we reduce the number of seizures we also shortened the time in those seizures.It takes time to learn triggers and other things that can help you gain control of your seizures. You see I was once like you wanting the seizures to go away. I hated taking meds. I didn't like depending on others. Yet without their help I wouldn't be here today. You can be what you want as long as you accept your condition and live within it's bounds. Those bounds change as time passes. I haven't had a grand mal seizure since 1970. I haven't had a petite mal (absence seizure) since about the same time. I do have focal seizures and they vary. Some (most) are simple partial seizures which you wouldn't know I was having if we were talking. Others would land in partial and complex partial. So learn from what you have been dealing with and do talk to your neurologist and ASK QUESTIONS. Without your questions he thinks things are going fine with you so he keeps you on the same old same old. For every questions my neurologist asks me I had 2 for him. I wanted to know more about the meds. Will they control my seizures better? Would it be better to keep this med and couple it with another to get better control. How much drinking can I do if any? Are there newer meds coming out that can control my seizures better? With every question my neurologist knew I wanted results that I could see and feel. By discussing things with him we talked about the different meds, Possible procedures and even surgery. I am letting you know you do have a ways to go. I have been living and dealing with epilepsy for 50+ years. I have never driven but that never stopped me from showing people that a person with epilepsy can do what everybody else can as long as they stay within their bounds which today are very few.I hope this helpsJoe

WelcomeSo you get jerks now and then. If you have been having the jerks from time to time those jerks could have been different seizures. Not all seizures are grand mal. Smoking cigs is ok and pot does calm down the nervous system. But do you know if the pot is laced with anything? As for drinking. true ot seems calm you down but it also interferes with your seizure medications if you drink more than a beer or a glass of wine in a 4 hour time period.Like you posted meds should be taken at the same time daily. If 2 times a day those times need to be 12 hours apart.Now driving__________ Well at least you drove and may be able to again depending on if your seizures can be controlled.Yes seizures suck  BIG TIME. But would you rather have a heart condition or diabetes or some other ailment? It is something that you need to learn how to deal with and live with. You seem to want to control everything when in reality all you can control is YOU. You like your GF and are fortunate to have her drive you around. You have been dealing with epilepsy for a short time compared to others whose seizures are more frequent and stronger. I am fortunate to have found a neurologist that worked with me to get better control of my seizures. Not only did we reduce the number of seizures we also shortened the time in those seizures.It takes time to learn triggers and other things that can help you gain control of your seizures. You see I was once like you wanting the seizures to go away. I hated taking meds. I didn't like depending on others. Yet without their help I wouldn't be here today. You can be what you want as long as you accept your condition and live within it's bounds. Those bounds change as time passes. I haven't had a grand mal seizure since 1970. I haven't had a petite mal (absence seizure) since about the same time. I do have focal seizures and they vary. Some (most) are simple partial seizures which you wouldn't know I was having if we were talking. Others would land in partial and complex partial. So learn from what you have been dealing with and do talk to your neurologist and ASK QUESTIONS. Without your questions he thinks things are going fine with you so he keeps you on the same old same old. For every questions my neurologist asks me I had 2 for him. I wanted to know more about the meds. Will they control my seizures better? Would it be better to keep this med and couple it with another to get better control. How much drinking can I do if any? Are there newer meds coming out that can control my seizures better? With every question my neurologist knew I wanted results that I could see and feel. By discussing things with him we talked about the different meds, Possible procedures and even surgery. I am letting you know you do have a ways to go. I have been living and dealing with epilepsy for 50+ years. I have never driven but that never stopped me from showing people that a person with epilepsy can do what everybody else can as long as they stay within their bounds which today are very few.I hope this helpsJoe 

WelcomeSo you get jerks now and then. If you have been having the jerks from time to time those jerks could have been different seizures. Not all seizures are grand mal. Smoking cigs is ok and pot does calm down the nervous system. But do you know if the pot is laced with anything? As for drinking. true ot seems calm you down but it also interferes with your seizure medications if you drink more than a beer or a glass of wine in a 4 hour time period.Like you posted meds should be taken at the same time daily. If 2 times a day those times need to be 12 hours apart.Now driving__________ Well at least you drove and may be able to again depending on if your seizures can be controlled.Yes seizures suck BIG TIME. But would you rather have a heart condition or diabetes or some other ailment? It is something that you need to learn how to deal with and live with. You seem to want to control everything when in reality all you can control is YOU. You like your GF and are fortunate to have her drive you around. You have been dealing with epilepsy for a short time compared to others whose seizures are more frequent and stronger. I am fortunate to have found a neurologist that worked with me to get better control of my seizures. Not only did we reduce the number of seizures we also shortened the time in those seizures.It takes time to learn triggers and other things that can help you gain control of your seizures. You see I was once like you wanting the seizures to go away. I hated taking meds. I didn't like depending on others. Yet without their help I wouldn't be here today. You can be what you want as long as you accept your condition and live within it's bounds. Those bounds change as time passes. I haven't had a grand mal seizure since 1970. I haven't had a petite mal (absence seizure) since about the same time. I do have focal seizures and they vary. Some (most) are simple partial seizures which you wouldn't know I was having if we were talking. Others would land in partial and complex partial. So learn from what you have been dealing with and do talk to your neurologist and ASK QUESTIONS. Without your questions he thinks things are going fine with you so he keeps you on the same old same old. For every questions my neurologist asks me I had 2 for him. I wanted to know more about the meds. Will they control my seizures better? Would it be better to keep this med and couple it with another to get better control. How much drinking can I do if any? Are there newer meds coming out that can control my seizures better? With every question my neurologist knew I wanted results that I could see and feel. By discussing things with him we talked about the different meds, Possible procedures and even surgery. I am letting you know you do have a ways to go. I have been living and dealing with epilepsy for 50+ years. I have never driven but that never stopped me from showing people that a person with epilepsy can do what everybody else can as long as they stay within their bounds which today are very few.I hope this helpsJoe

Ya man ti sucks. Mine started

Submitted by hoobness on Sat, 2015-08-22 - 17:20

Ya man ti sucks. Mine started in high school, Id be eating cereal and trow the spoon across the room and my dad would yell at me, hell I didnt even knew I threw it. Or worse, be walking in pass period at school and drop my books, or fall down for no reason. I just dealt with it until I was 18 and awy at college boozing it up at parties and one day I had a grand mal. We thought nothing of it since we partied pretty hard then, but then it would happen in class, or in the dorm and I figured something was F-d up. After denying 3 neurologists diagnosis' I gave in and accepted it. Put me in a bad place since I was planning on flying jets and airlines, never got to. Im 39 now and Ive been bartending and waiting tables since I cant seem to get out of bed early enough for a real job without feeling like Im gonna seize out. It sucks, but it could be worse. It took me a long time to get a grip, I used to be wasted daily til I was 23 on more than booze or pot, trying to hide from the fact I have this shitty epilepsy. I just hope for better technology someday, maybe theyll find a cure. Be gald you got a gf, I couldnt do it with out my girl, shes totally understanding and never dog me about it. Ive met guys who had no one and its gotta be much worse, especially if they cant drive. Since you cant drive, and Im sure you want to, focus on that. get your shit under control, no seizures, use a stopwatch or your smartphone or what ever to remind yourself to take the meds, just stay in control and youll get that license back. I almost lost mine, but I straightened out and took the epilepsy seriously and can still drive. I even have a motorcycle licence, though I dont ride anymore, Im too worried I may jerk or something and crash. Point is, the meds help, and if they keep you seizure free, youll eventually be able to get it back and have some freedom you deserve. It sucks, we didnt ask for this but we got it and we gotta make the best of it. Like I said earlier, maybe theyll fix it and we can be cured.

Ya man ti sucks. Mine started in high school, Id be eating cereal and trow the spoon across the room and my dad would yell at me, hell I didnt even knew I threw it. Or worse, be walking in  pass period at school and drop my books, or fall down for no reason. I just dealt with it until I was 18 and awy at college boozing it up at parties and one day I had a grand mal. We thought nothing of it since we partied pretty hard then, but then it would happen in class, or in the dorm and I figured something was F-d up. After denying 3 neurologists diagnosis' I gave in and accepted it. Put me in a bad place since I was planning on flying jets and airlines, never got to.  Im 39 now and Ive been bartending and waiting tables since I cant seem to get out of bed early enough for a real job without feeling like Im gonna seize out.  It sucks, but it could be worse.  It took me a long time to get a grip, I used to be wasted daily til I was 23 on more than booze or pot, trying to hide from the fact I have this shitty epilepsy.  I just hope for better technology someday, maybe theyll find a cure.  Be gald you got a gf, I couldnt do it with out my girl, shes totally understanding and never dog me about it. Ive met guys who had no one and its gotta be much worse, especially if they cant drive.  Since you cant drive, and Im sure you want to, focus on that. get your shit under control, no seizures, use a stopwatch or your smartphone or what ever to remind yourself to take the meds, just stay in control and youll get that license back. I almost lost mine, but I straightened out and took the epilepsy seriously and can still drive. I even have a motorcycle licence, though I dont ride anymore, Im too worried I may jerk or something and crash.  Point is, the meds help, and if they keep you seizure free, youll eventually be able to get it back and have some freedom you deserve.  It sucks, we didnt ask for this but  we got it and we gotta make the best of it.  Like I said earlier, maybe theyll fix it and we can be cured.  

Ya man ti sucks. Mine started in high school, Id be eating cereal and trow the spoon across the room and my dad would yell at me, hell I didnt even knew I threw it. Or worse, be walking in pass period at school and drop my books, or fall down for no reason. I just dealt with it until I was 18 and awy at college boozing it up at parties and one day I had a grand mal. We thought nothing of it since we partied pretty hard then, but then it would happen in class, or in the dorm and I figured something was F-d up. After denying 3 neurologists diagnosis' I gave in and accepted it. Put me in a bad place since I was planning on flying jets and airlines, never got to. Im 39 now and Ive been bartending and waiting tables since I cant seem to get out of bed early enough for a real job without feeling like Im gonna seize out. It sucks, but it could be worse. It took me a long time to get a grip, I used to be wasted daily til I was 23 on more than booze or pot, trying to hide from the fact I have this shitty epilepsy. I just hope for better technology someday, maybe theyll find a cure. Be gald you got a gf, I couldnt do it with out my girl, shes totally understanding and never dog me about it. Ive met guys who had no one and its gotta be much worse, especially if they cant drive. Since you cant drive, and Im sure you want to, focus on that. get your shit under control, no seizures, use a stopwatch or your smartphone or what ever to remind yourself to take the meds, just stay in control and youll get that license back. I almost lost mine, but I straightened out and took the epilepsy seriously and can still drive. I even have a motorcycle licence, though I dont ride anymore, Im too worried I may jerk or something and crash. Point is, the meds help, and if they keep you seizure free, youll eventually be able to get it back and have some freedom you deserve. It sucks, we didnt ask for this but we got it and we gotta make the best of it. Like I said earlier, maybe theyll fix it and we can be cured.