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Can I be cured of Epilepsy?
Thu, 03/25/2010 - 17:38I have had Epilepsy my whole life, I am 29 and just now getting treated for it. My grandmother had it too and was still on meds until she died in her 90s. My doctor says its possible to become seizure free first with the meds and then ween off of them and be cured. My grandma was never cured obviously. And my doctor hasn't yet been able to stop my seizures (but that can take years and we've only tried for months) I still have them everyday, the worst ones several times a week. Just a few days ago I had 17 and on and on it was a two day marathon which prompted my doctor to throw in Keppra, he wants to go aggressive now with treatment he said because my seizures are getting so invasive. My brain doesn't function well (if at all) which effects my marriage and my being the best mom I can be. Anyone else feel it hurts their love life? I would love to be cured of course but is it possible? Are any of you guys seizure free? Can you tell me how long it took, what you did, how it changed your life? What are the hardest to treat seizures?
I have absence seizures with secondary generalization
Comments
My son was cure for seizure
Submitted by Nancy45 on Fri, 2017-12-15 - 15:52
Re: Can I be cured of Epilepsy?
Submitted by seakats on Tue, 2010-05-11 - 15:53
I have sp/cp/myoclonics and for 3 years I was uncontrolled. I switched from a neurologist (who only specializes in headache/migraine issues) to an epileptologist. He upped the medication I was on. It didn't work. I was on topamax and had dropped from 120 lbs to 100 lbs, at which point it was dangerous to up it any more. He switched me to lamictal. He was very aggressive about treating the seizurs. For example, I had a seizure at 400 mg and he immediately upped my meds to 500 mg. He wanted to know immediately if I had a seizure, so this helped the seizures stay in check. When I reached that 500 mg threshold, he put me on an extended release version of Lamictal (Lamictal xr) and the seizures stopped. But they picked up again 6 mo later. I'm now on 600 mg and seizure free. He has told me that if they start again, he'll have to try dual therapy.
I am married to an amazing man. He listens to me rant and rave with love and understanding. When I'm suffering any of the million side effects of aeds, he makes it clear that it'll be ok and that he loves me even with the side effects. When I went on aeds, I was terrified that he'd get tired of the whole epilepsy routine. But it's made us even closer, as we cling together instead of falling apart. One thing I DO do is to constantly tell him how much I love him and how much his support means to me. I send cards with him to work (AEDs make it impossible for me to work). I write little love notes. I call him at work just to say that I love him. Make sure he has someone else to talk to so he can vent. Tell him about how scared you are about losing him. It's the best thing in the world to have a forthright discussion. It'll make him feel better (to voice what he's feeling) and it'll help you (to be assured that he's going to stick with you). Communication is the key!
I don't have children (yet) but I can tell you that kids focus on what you CAN do - not on what you can't. I'm sure you tell them that you love them! That is one of the most important things you can do. Explain about epilepsy, how seizures affect you, how to respond to a seizure (very important), and how they can show you that they love you. Mention what you're having trouble with - memory issues etc. And ask how they would help you. It gives them some input/ownership to help you. It'll take the mystery out of something that is potentially scary. Take them with you to the dr so they can hear what he's saying and ask questions. If you have young (1-4 yrs) kids, have them draw pictures of how to help anyone (i.e. rescue a cat out of the tree/help a friend when they fall down). Give them constant love and encouragement (which, I'm sure, you're already doing). No matter what physical ailments YOU have, concentrate on what you can do. This will help you stay more positive so you can handle the ups and downs of being a parent.
Epilepsy cannot be cured, only managed. Yes, the medication sucks. Yes, it impacts every part of your life. I went through a whole stage of grief that lasted a year. Your routines changed, you have trouble doing what you used to do, you lose some independence, you name it. For me, it was as if I had to accept a new me. It's ok to feel angry/sad/frustrated etc. It's part of dealing with the emotions that are part and parcel of epilepsy. Do be cautious, however. I got to a point that I couldn't dig myself out of feelings of sadness/hopelessness. Epilepsy and depression are linked. If you feel like you can't "shake it" let a dr know, whether it's your neuro or gp (that knows what they're doing). Wellbutrin is a no-no as it affects the aeds. I'm on citalopram and on a mininimal dose. But even that small of a dose helps keep me at even keel. If, at ANY point, you feel suicidal (drugs can "help" this) IMMEDIATELY GET HELP!!!!!
Hope this helps and know that we've all been through this. It might take a months/a year etc, but it'll be ok. <hugs>
I have sp/cp/myoclonics and for 3 years I was uncontrolled. I switched from a neurologist (who only specializes in headache/migraine issues) to an epileptologist. He upped the medication I was on. It didn't work. I was on topamax and had dropped from 120 lbs to 100 lbs, at which point it was dangerous to up it any more. He switched me to lamictal. He was very aggressive about treating the seizurs. For example, I had a seizure at 400 mg and he immediately upped my meds to 500 mg. He wanted to know immediately if I had a seizure, so this helped the seizures stay in check. When I reached that 500 mg threshold, he put me on an extended release version of Lamictal (Lamictal xr) and the seizures stopped. But they picked up again 6 mo later. I'm now on 600 mg and seizure free. He has told me that if they start again, he'll have to try dual therapy.
I am married to an amazing man. He listens to me rant and rave with love and understanding. When I'm suffering any of the million side effects of aeds, he makes it clear that it'll be ok and that he loves me even with the side effects. When I went on aeds, I was terrified that he'd get tired of the whole epilepsy routine. But it's made us even closer, as we cling together instead of falling apart. One thing I DO do is to constantly tell him how much I love him and how much his support means to me. I send cards with him to work (AEDs make it impossible for me to work). I write little love notes. I call him at work just to say that I love him. Make sure he has someone else to talk to so he can vent. Tell him about how scared you are about losing him. It's the best thing in the world to have a forthright discussion. It'll make him feel better (to voice what he's feeling) and it'll help you (to be assured that he's going to stick with you). Communication is the key!
I don't have children (yet) but I can tell you that kids focus on what you CAN do - not on what you can't. I'm sure you tell them that you love them! That is one of the most important things you can do. Explain about epilepsy, how seizures affect you, how to respond to a seizure (very important), and how they can show you that they love you. Mention what you're having trouble with - memory issues etc. And ask how they would help you. It gives them some input/ownership to help you. It'll take the mystery out of something that is potentially scary. Take them with you to the dr so they can hear what he's saying and ask questions. If you have young (1-4 yrs) kids, have them draw pictures of how to help anyone (i.e. rescue a cat out of the tree/help a friend when they fall down). Give them constant love and encouragement (which, I'm sure, you're already doing). No matter what physical ailments YOU have, concentrate on what you can do. This will help you stay more positive so you can handle the ups and downs of being a parent.
Epilepsy cannot be cured, only managed. Yes, the medication sucks. Yes, it impacts every part of your life. I went through a whole stage of grief that lasted a year. Your routines changed, you have trouble doing what you used to do, you lose some independence, you name it. For me, it was as if I had to accept a new me. It's ok to feel angry/sad/frustrated etc. It's part of dealing with the emotions that are part and parcel of epilepsy. Do be cautious, however. I got to a point that I couldn't dig myself out of feelings of sadness/hopelessness. Epilepsy and depression are linked. If you feel like you can't "shake it" let a dr know, whether it's your neuro or gp (that knows what they're doing). Wellbutrin is a no-no as it affects the aeds. I'm on citalopram and on a mininimal dose. But even that small of a dose helps keep me at even keel. If, at ANY point, you feel suicidal (drugs can "help" this) IMMEDIATELY GET HELP!!!!!
Hope this helps and know that we've all been through this. It might take a months/a year etc, but it'll be ok. <hugs>
Re: Can I be cured of Epilepsy?
Submitted by Anonymous on Tue, 2010-05-11 - 12:58
People should look carefully into any treatment for epilepsy/seizures and find out as much as they can before following this. Look at published studies about outcome too.
People should NOT stop medical treatment without advice of a doctor as serious complications and emergencies can occur!
People should look carefully into any treatment for epilepsy/seizures and find out as much as they can before following this. Look at published studies about outcome too.
People should NOT stop medical treatment without advice of a doctor as serious complications and emergencies can occur!