New to the Forum & Looking for Friends

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Hello everybody,

I'm new to the forum and was hoping to form some connections with other people affected by epilepsy. I was first diagnosed when I was 9 years old. I was having many absence seizures every day, but after diagnosis, my seizures were controlled by medication. When I was 15, my neurologist decided to test whether I had grown out of the seizures or not (spoiler alert: I hadn't). I was actually seizure-free for a few years, but one night when I was 18, I had what I presume was my first grand mal seizure, but nobody witnessed it. My parents ignored it as some kind of fluke. A couple years later, the same thing happened in my second year of college, but yet again nobody witnessed the seizure, and I was diagnosed with "confusional migraines." Skeptical, I made an appointment with a neurologist, and a week before my appointment, I had a grand mal seizure in front of my friend's family. So now I'm on medication for life.

I have family members who are also epileptic. My mother started having grand mal seizures in her late 40s for inexplicable reasons, and her sister has been having them for a while as well. Their mother and aunt may or may not have had epilepsy (they had suspicious symptoms but never a diagnosis).

All in all, my seizures are well controlled by Keppra (I still have random discharges and "strange feelings" now and again), so I feel terrible complaining about my situation at all. Still, I'm upset because I think the Keppra affects my mood (I've had anxiety for a while that is only getting worse), but it's the only drug I've been able to somewhat tolerate so far. I have cognitive defects and language problems with it that make functioning at work/school (I'm a science PhD student) difficult in a lot of cases, and I constantly feel left behind by my classmates in that sense. I'm afraid to tell my classmates about my epilepsy because I don't want "special treatment," but at the same time, I'm struggling to fit in.

I'm struggling to cope in my personal life as well. I'm afraid to drink much or drive at night, which makes socializing difficult. I have a boyfriend who is generally very caring, but I think he gets impatient with my inability to focus on multiple tasks at once without getting overwhelmed, my forgetfulness, and my inability to stay awake late at night. I feel lonely a lot because there doesn't seem to be anybody in my life who understands what I'm going through. I'm not very close to my family, and my mother doesn't seem to care too much about how her epilepsy/medication affect her (she is very cognitively impaired and is very forgetful, but she no longer works, and my father is very patient and supportive). So I guess that's why I'm here: hoping somebody will be able to empathize with this story, and maybe we could offer support to each other or advice on getting through this ordeal.

Thanks for listening!

Comments

Hi, All in all, you seem to

Submitted by Anonymous on Wed, 2015-08-26 - 12:11

Hi, All in all, you seem to have a good grip on the realities. But you can drive? That's a bonus! I'm a 53 yr old male, diagnosed at 28 after a Grand-Mal but since only absence. The thinking is that I've had this since birth due to my mothers illness during pregnancy. I've been through many meds, Keppra incl. Two years ago, I had failed SEEG and now await an implant. The best thing you can do with those feelings you've expressed is to be straight up and don't hold back. Let others know. Those who can deal will, those who can't...you don't need them. I drink and have worked in the wine biz. But I don't drink too much. Find that limit. Like you I've had a difficult fam life. Abandoned by my father at 6, etc. All of what you laid out is to me, NORMAL. Be your own best advocate and try not to despair. Hit me up when you need.DB

Well join the clubYou seem to

Submitted by just_joe on Wed, 2015-08-26 - 16:51

Well join the clubYou seem to have a grip on things you can and can not do which is a plus. Knowing your limits and boundries helps determine things. I know what it is like wanting to drink and do things with everybody else. I also know that a lot of neurologists say "No Alcohol" I had a few of them. I also had one that told me a drink now and then would not be a problem. I had friends that knew I had epilepsy and I had friends that didn't know. In a group of friends we had a blast. Partying going to the clubs dancing and having fun. I limited myself to 1 drink with alcohol but most of the people around me didn't know it. If you have a good bartender it can be done my drinks looked like everybody else's. So having fun and doing things with others can be done and not everybody needs to know you have epilepsy.Now at school (college in your case) each college has someone that can and is supposed to help disabled people. So go talk to the office and find out who it is in the administration that you can talk to. They can help in different ways.I went years without a seizure and Doc and I were talking about getting me off meds but that was before I had a seizureMy diagnosis was before they specialized and came up with types of epilepsy and types of seizures. There were no forums or home computers in the 1960's. We hadn't even gotten to the moon yet, So another plus is you have this site and others to go to and ask questions and do research. My diagnosis was Grand Mal, Petite Mal and Focal Motor epilepsy. The worst, the slightest and many different ones in-between. I have been blessed to have a group of neurologist that has been working with me since 1970. In that period of time I haven't had a convulsive seizure be it a grand mal or a focal seizure that generalized. At times I would go a month or so without a seizure only to have 2-3 the next week. Meds can and do cause people problems. I had trouble in school at times. But I learned what I needed to do and I worked in many different fields of work.As for keppra. It has become the go to medication for seizure control. They all work. But a medication that works for one person may not for the next. Dosages are like that too.Keppra not only reduced the number of seizures I was having. It also shortened the time in those seizures. My focal seizures affected my right hand and they would last 2-8 minutes. I couldn't move my fingers and it felt weird or numb. Those seizures are now 2-5 seconds. The time to get back to normal used to be 15-45 minutes and sometimes longer are now 2-8 seconds long. I can have a seizure while talking to you and you would know nothing about it.I still have random discharges and "strange feelings" now and again Now you do need to understand that if your RX says 2 times a day those times need to be 12 hours apart. If morning meds are taken at 7 and your night meds are taken at 11 the 4 hour difference can cause a breakthrough seizure. Many people think that seizure meds leave the body after a certain period of time. Well they don't. When you started taking them the neurologist wrote the RX and knew the dosage he wanted you on. The first 4-6 weeks is the time period many people will have side effects in. The main reason is the medication is building up a therapeutic level the neurologist wants you to have.You have done a lot and have pluses in many things. You have been living and dealing with epilepsy for some time now.I have been living and dealing with epilepsy for 50+ years. When I was diagnosed they were still putting people with epilepsy in homes. In the 1970's some states were not letting people with epilepsy get a marriage license. We have come a long way.I hope this helpsJoeOh and think some there is a chat in this site and people do just that chat about their issued or their epilepsy and the types of seizures. You might also call the 24/7 help line if you have a questions you wants answers to. Your friends or family members can call that line and get answers.

Well join the clubYou seem to have a grip on things you can and can not do which is a plus. Knowing your limits and boundries helps determine things. I know what it is like wanting to drink and do things with everybody else. I also know that a lot of neurologists say "No Alcohol" I had a few of them. I also had one that told me a drink now and then would not be a problem. I had friends that knew I had epilepsy and I had friends that didn't know. In a group of friends we had a blast. Partying going to the clubs dancing and having fun. I limited myself to 1 drink with alcohol but most of the people around me didn't know it. If you have a good bartender it can be done my drinks looked like everybody else's.  So having fun and doing things with others can be done and not everybody needs to know you have epilepsy.Now at school (college in your case) each college has someone that can and is supposed to help disabled people. So go talk to the office and find out who it is in the administration that you can talk to. They can help in different ways.I went years without a seizure and Doc and I were talking about getting me off meds but that was before I had a seizureMy diagnosis was before they specialized and came up with types of epilepsy and types of seizures. There were no forums or home computers in the 1960's. We hadn't even gotten to the moon yet, So another plus is you have this site and others to go to and ask questions and do research. My diagnosis was Grand Mal, Petite Mal and Focal Motor epilepsy. The worst, the slightest and many different ones in-between. I have been blessed to have a group of neurologist that has been working with me since 1970. In that period of time I haven't had a convulsive seizure be it a grand mal or a focal seizure that generalized. At times I would go a month or so without a seizure only to have 2-3 the next week. Meds can and do cause people problems. I had trouble in school at times. But I learned what I needed to do and I worked in many different fields of work.As for keppra. It has become the go to medication for seizure control. They all work. But a medication that works for one person may not for the next. Dosages are like that too.Keppra not only reduced the number of seizures I was having. It also shortened the time in those seizures. My focal seizures affected my right hand and they would last 2-8 minutes. I couldn't move my fingers and it felt weird or numb. Those seizures are now 2-5 seconds. The time to get back to normal used to be 15-45 minutes and sometimes longer are now 2-8 seconds long. I can have a seizure while talking to you and you would know nothing about it.I still have random discharges and "strange feelings" now and again Now you do need to understand that if your RX says 2 times a day those times need to be 12 hours apart. If morning meds are taken at 7 and your night meds are taken at 11 the 4 hour difference can cause a breakthrough seizure. Many people think that seizure meds leave the body after a certain period of time. Well they don't. When you started taking them the neurologist wrote the RX and knew the dosage he wanted you on. The first 4-6 weeks is the time period many people will have side effects in. The main reason is the medication is building up a therapeutic level the neurologist wants you to have.You have done a lot and have pluses in many things. You have been living and dealing with epilepsy for some time now.I have been living and dealing with epilepsy for 50+ years. When I was diagnosed they were still putting people with epilepsy in homes. In the 1970's some states were not letting people with epilepsy get a marriage license. We have come a long way.I hope this helpsJoeOh and think some there is a chat in this site and people do just that chat about their issued or their epilepsy and the types of seizures. You might also call the 24/7 help line if you have a questions you wants answers to. Your friends or family members can call that line and get answers.

Well join the clubYou seem to have a grip on things you can and can not do which is a plus. Knowing your limits and boundries helps determine things. I know what it is like wanting to drink and do things with everybody else. I also know that a lot of neurologists say "No Alcohol" I had a few of them. I also had one that told me a drink now and then would not be a problem. I had friends that knew I had epilepsy and I had friends that didn't know. In a group of friends we had a blast. Partying going to the clubs dancing and having fun. I limited myself to 1 drink with alcohol but most of the people around me didn't know it. If you have a good bartender it can be done my drinks looked like everybody else's. So having fun and doing things with others can be done and not everybody needs to know you have epilepsy.Now at school (college in your case) each college has someone that can and is supposed to help disabled people. So go talk to the office and find out who it is in the administration that you can talk to. They can help in different ways.I went years without a seizure and Doc and I were talking about getting me off meds but that was before I had a seizureMy diagnosis was before they specialized and came up with types of epilepsy and types of seizures. There were no forums or home computers in the 1960's. We hadn't even gotten to the moon yet, So another plus is you have this site and others to go to and ask questions and do research. My diagnosis was Grand Mal, Petite Mal and Focal Motor epilepsy. The worst, the slightest and many different ones in-between. I have been blessed to have a group of neurologist that has been working with me since 1970. In that period of time I haven't had a convulsive seizure be it a grand mal or a focal seizure that generalized. At times I would go a month or so without a seizure only to have 2-3 the next week. Meds can and do cause people problems. I had trouble in school at times. But I learned what I needed to do and I worked in many different fields of work.As for keppra. It has become the go to medication for seizure control. They all work. But a medication that works for one person may not for the next. Dosages are like that too.Keppra not only reduced the number of seizures I was having. It also shortened the time in those seizures. My focal seizures affected my right hand and they would last 2-8 minutes. I couldn't move my fingers and it felt weird or numb. Those seizures are now 2-5 seconds. The time to get back to normal used to be 15-45 minutes and sometimes longer are now 2-8 seconds long. I can have a seizure while talking to you and you would know nothing about it.I still have random discharges and "strange feelings" now and again Now you do need to understand that if your RX says 2 times a day those times need to be 12 hours apart. If morning meds are taken at 7 and your night meds are taken at 11 the 4 hour difference can cause a breakthrough seizure. Many people think that seizure meds leave the body after a certain period of time. Well they don't. When you started taking them the neurologist wrote the RX and knew the dosage he wanted you on. The first 4-6 weeks is the time period many people will have side effects in. The main reason is the medication is building up a therapeutic level the neurologist wants you to have.You have done a lot and have pluses in many things. You have been living and dealing with epilepsy for some time now.I have been living and dealing with epilepsy for 50+ years. When I was diagnosed they were still putting people with epilepsy in homes. In the 1970's some states were not letting people with epilepsy get a marriage license. We have come a long way.I hope this helpsJoeOh and think some there is a chat in this site and people do just that chat about their issued or their epilepsy and the types of seizures. You might also call the 24/7 help line if you have a questions you wants answers to. Your friends or family members can call that line and get answers.