I have adult onset epilepsy. I am 63. I was diagnosed about one year ago. I have had some adjustment problems. My initial problem was with keppra. It made me mentally ill( I am familiar with m.i. because I practiced law for 30 years and had clients with m.i.). I was switched to lamictal and I am doing much better. I sometimes feel I don't get much support from my spouse because my epilepsy has changed our life. I feel like she blames me for that. I am seeing a psychologist and that helps somewhat, but when I express my feelings to my spouse she somehow turns it around on me and makes me feel like everything is my fault. I need help with this issue. My shrink says to keep letting my feelings be known, but I only feel worse when I do. Hopefully someone on this forum has experienced similar issues and can give me some insight.
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Hi JMW46,
I'm sorry that your seizures started up so late in life. I've had them for 45 yrs. since I was a kid 10 yrs. old. Take my word Keppra can cause a person to have a hot temper and be very moody. I was on the drug for 1 month and had to get off of it because it was giving me a hot temper. I also tried lamictal but I broke out with a rash after being on the drug for 4 days. Now I take vimpat and that helps a lot.
My advice to you is to see a neuropsychologists along with an Epileptologist. A Epileptologist specializes in epilepsy and can pinpoint the cause of a persons seizures and have the person on the least amount of meds to control the seizures. A neuropsychologist will be able to do simple tests on you to see what areas of your brain are being affected do to your seizures and they also specialize in epilepsy so the 2 Drs. work together as a team. I found them to be the biggest help to me in the 45 yrs. I've had epilepsy compared to regular psychologist and neuros but that's just my opinion.
My family turned away from me when I was a kid and sent me off to boarding school when I was in my teens because of my epilepsy, they didn't want to deal with it and they are like that to this day. I felt I always had to prove myself to them no matter what I did.
What you need to do is tell your wife about all the famous people who have or had epilepsy like Elton John, Danny Glover, Einsteen, Edgar Allen Poe, Alan Faneca (retired professional football player for the Ariizonia Cardinals) and there are many more people that are famous that have epilepsy.
I'm really proud of you for being a lawyer I have a family friend whose retired who was a lawyer I find that kind of work very interesting.
Try and keep away from stress and get plenty of sleep, these are the 2 things that can trigger seizures for many people. I have also found that anything with NutraSweet in it can trigger seizures for me. Cut yourself back on the carbs and starch foods and eat foods high in fat and protein this will build up ketones in your body which will help reduce the seizures. Also get a calendar and write down what time of day/night you have any seizure this will help your Dr. and they may see a pattern in your seizures as to what days or time of day you will have any seizures. I always have seizures between the 18th and 25th of each month. This is all do to hormones changing. I wish you the best of luck and May God Bless You!
Sue
I'm sorry that your seizures started up so late in life. I've had them for 45 yrs. since I was a kid 10 yrs. old. Take my word Keppra can cause a person to have a hot temper and be very moody. I was on the drug for 1 month and had to get off of it because it was giving me a hot temper. I also tried lamictal but I broke out with a rash after being on the drug for 4 days. Now I take vimpat and that helps a lot.
My advice to you is to see a neuropsychologists along with an Epileptologist. A Epileptologist specializes in epilepsy and can pinpoint the cause of a persons seizures and have the person on the least amount of meds to control the seizures. A neuropsychologist will be able to do simple tests on you to see what areas of your brain are being affected do to your seizures and they also specialize in epilepsy so the 2 Drs. work together as a team. I found them to be the biggest help to me in the 45 yrs. I've had epilepsy compared to regular psychologist and neuros but that's just my opinion.
My family turned away from me when I was a kid and sent me off to boarding school when I was in my teens because of my epilepsy, they didn't want to deal with it and they are like that to this day. I felt I always had to prove myself to them no matter what I did.
What you need to do is tell your wife about all the famous people who have or had epilepsy like Elton John, Danny Glover, Einsteen, Edgar Allen Poe, Alan Faneca (retired professional football player for the Ariizonia Cardinals) and there are many more people that are famous that have epilepsy.
I'm really proud of you for being a lawyer I have a family friend whose retired who was a lawyer I find that kind of work very interesting.
Try and keep away from stress and get plenty of sleep, these are the 2 things that can trigger seizures for many people. I have also found that anything with NutraSweet in it can trigger seizures for me. Cut yourself back on the carbs and starch foods and eat foods high in fat and protein this will build up ketones in your body which will help reduce the seizures. Also get a calendar and write down what time of day/night you have any seizure this will help your Dr. and they may see a pattern in your seizures as to what days or time of day you will have any seizures. I always have seizures between the 18th and 25th of each month. This is all do to hormones changing. I wish you the best of luck and May God Bless You!
Sue
Freda
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I find it incomprehensible that people turn away when someone is diagnosed with epilepsy, I'm afraid I find that quite cruel tbh. My eldest daughter was diagnosed just a few months ago at the age of 33 and I'm devastated for her, as are her siblings and friends. It's such a life changing condition and I wouldn't wish it on anyone, I could cry for what I'm seeing her go through and she's so brave about it all just saying how it could have been worse and been a brain tumour. Poor kid is such a kind hearted girl and if I knew anyone was flippant about her condition I'd be actually livid and give them a piece of my mind!
I can't comment on your wife's attitude other than she ought to feel lucky that it wasn't her who developed epilepsy but one thing I do know is you'll get lots of support on here and are ALWAYS welcome to vent your feeling or ask questions.
This forum has helped me on many occasions already.
I can't comment on your wife's attitude other than she ought to feel lucky that it wasn't her who developed epilepsy but one thing I do know is you'll get lots of support on here and are ALWAYS welcome to vent your feeling or ask questions.
This forum has helped me on many occasions already.
Darth Cajun
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Hi JMW46. I'm also new on this site. I'm incredibly sorry to hear what you're going through. I have had epilepsy for just over 14 years now, and am still learning to cope with certain things. Having a solid background of family and friends behind me has helped tremendously.
To answer your question though...I have had friends who simply don't understand what we're going through, don't want to, and don't want to hear about it whatsoever. It hurts. I've felt it too. Hopefully her attitude will change in the future once she sees how hard you are pushing to help yourself. I second Freda though...you will get all the love you need on here, no doubt. I also recommend keeping a diary. As small and insignificant as it may sound, I started writing a couple of months ago, and it helped me in many ways. I love getting back to physically writing as well. I don't necessarily write about epilepsy either. Some days I write about my feelings and what I wish could change. Some days I write a personal letter to a friend or family member (even though I never give it to them). Some days I'll write about the most off the wall things...I've reviewed movies, written about my favorite novels, written lists of my favorite literary quotes, even written future letters to my family just telling them how much I appreciate and love them. This has helped me immensely and hopefully it can help you as well. You definitely need to find an outlet for your feelings one way or the other.
To answer your question though...I have had friends who simply don't understand what we're going through, don't want to, and don't want to hear about it whatsoever. It hurts. I've felt it too. Hopefully her attitude will change in the future once she sees how hard you are pushing to help yourself. I second Freda though...you will get all the love you need on here, no doubt. I also recommend keeping a diary. As small and insignificant as it may sound, I started writing a couple of months ago, and it helped me in many ways. I love getting back to physically writing as well. I don't necessarily write about epilepsy either. Some days I write about my feelings and what I wish could change. Some days I write a personal letter to a friend or family member (even though I never give it to them). Some days I'll write about the most off the wall things...I've reviewed movies, written about my favorite novels, written lists of my favorite literary quotes, even written future letters to my family just telling them how much I appreciate and love them. This has helped me immensely and hopefully it can help you as well. You definitely need to find an outlet for your feelings one way or the other.
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Adjustment is something that is taken for granted by us all but is not so easy to do, it might surprise you but there is probably still some adjustment to do on your part as well. I know this sounds stupid and you are saying I have already accepted my situation but its the epilepsy you have to accept, after a life time of living with epilepsy even I find myself in this situation. No matter what drug you are on it has the ability and will affect you mentally but not to the same degree as others, Keppra is one drug although it can suit some is known and will mentally change you and so you have keppra rage. Remember being familiar with and dealing with something are two totally different things, for example you may have heard about and know about epilepsy before now but that did not prepare you for dealing with it.
That feeling of a lack of support may not be all your spouse's fault, your spouse as well as you has to adjust to a whole new life and as well as you has to accept you having epilepsy and this is not an easy thing to do for any person. Talking about it and your feeling is good but you have to remember its how you phrase things as well, the anger you can feel towards epilepsy when you talk about it, be careful it does not sound as though you are blaming them. Yes keep talking about this but make it clear you understand that there is a big change in there life as well and you understand that time is needed to come to terms with this.
You cannot expect somebody to change there life overnight or in a week or two. Talking is the best and only way to tell each other how things are and how they feel for EACH of you and yes you explain how you value and need there support to help you get through this and carry on. Life is not easy for any of us but when you throw epilepsy into the pot things suddenly become a lot harder.
That feeling of a lack of support may not be all your spouse's fault, your spouse as well as you has to adjust to a whole new life and as well as you has to accept you having epilepsy and this is not an easy thing to do for any person. Talking about it and your feeling is good but you have to remember its how you phrase things as well, the anger you can feel towards epilepsy when you talk about it, be careful it does not sound as though you are blaming them. Yes keep talking about this but make it clear you understand that there is a big change in there life as well and you understand that time is needed to come to terms with this.
You cannot expect somebody to change there life overnight or in a week or two. Talking is the best and only way to tell each other how things are and how they feel for EACH of you and yes you explain how you value and need there support to help you get through this and carry on. Life is not easy for any of us but when you throw epilepsy into the pot things suddenly become a lot harder.
Topcat
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Yes Keppra sux. I was on it and like you switched to Lamictal.
I don't know what you psychologist says but just my opinion. First get some support elsewhere. Like here.
As far as
. Maybe you could ask your psychologist if it might not be better to back off and let your wife come to terms with your epilepsy naturally? Just my opinion. I am NOT a doctor.
Guess I'm lucky. I'm not married.
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A health crisis can be tough to process not only for ourselves but for the folks around us. Be patient with yourself and with your wife -- one year can be a relatively short time to get a handle on what's going and how things may be different going forward.
It sounds like your wife may benefit from some therapy too. Does she have friends or family members that she can vent to? Does she have outlets for "me time" for self-care. (You both should). She may be confused about how epilepsy works, or scared about how the Keppra changed you, or just feel guilty about expressing her fears and anxieties in the context of your own health crisis. It's relatively common for a caregiver or partner to start to resent physical or emotional demands a health issue can impose, and then feel guilty about feeling resentment, and then feel angry and then feel guilty again...
It sounds like your wife may benefit from some therapy too. Does she have friends or family members that she can vent to? Does she have outlets for "me time" for self-care. (You both should). She may be confused about how epilepsy works, or scared about how the Keppra changed you, or just feel guilty about expressing her fears and anxieties in the context of your own health crisis. It's relatively common for a caregiver or partner to start to resent physical or emotional demands a health issue can impose, and then feel guilty about feeling resentment, and then feel angry and then feel guilty again...