Hello, my name is Jenn. I'm married to the most kindhearted, caring, selfless and loving man anyone could ever ask for. He's had seizures since he was 9 months old. He will be 32 next month. He's on the highest dosage of Tegratol possible, as well as Keppra twice daily. His epilepsy has always weighed heavily on my mind. It breaks my heart that there is no cure. He's had countless EEG's done, yet a central location can never be pin pointed in his brain, he suffers from grand mal, as well as petty mal seizures. Luckily he can feel them coming on, and stays coherent enough to alert me, so that I'm able to stop them. There isn't a night that goes by that I don't wake up and put my hand on his chest to insure he's still breathing. His seizures are induced from stress and exhaustion mostly, however a fluctuation in his weight will cause them too. He does have his drivers license, and he's been employed with the state of California for a few years now. A major concern is my daughter. She's almost 5, and adores my husband Chris more than anything. She's from a previous relationship, but my husband is all she's known. I don't know how to explain my husbands situation to her in a way she'll understand. We're in the meltdown/temper tantrum from hell stage, and it really takes a toll on my husband. How can I explain this to her? Luckily my husband hasn't had a seizure in almost two years. However I've noticed his "ticks" are worsening, and he's become overly aggressive from too much medication. Each time his dosage has been altered, I've had to stop him from seizing. I feel like I'm stuck between a rock and a hard place....
32 years of epilepsy
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Hello Jenn,
welcome to cwe.I've been taking Tegretol since 1975 how much Tegretol is he? I was on 1400MG at one time. I get no side effects from the Tegretol and I'm allergic to Keppra.
I also take Topamax and PHENOBARB.I wish I had auras but what I have aren't aura's .
I have tonic clonics,absence,complex and simple partial seizures, generalized.I'm having simple partial now but basically never know what type sz I might have.
welcome to cwe.I've been taking Tegretol since 1975 how much Tegretol is he? I was on 1400MG at one time. I get no side effects from the Tegretol and I'm allergic to Keppra.
I also take Topamax and PHENOBARB.I wish I had auras but what I have aren't aura's .
I have tonic clonics,absence,complex and simple partial seizures, generalized.I'm having simple partial now but basically never know what type sz I might have.
arnie
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Hi and welcome. One of the first thoughts I had when I read your post is that if your husband has had epilepsy his whole life I would expect that he would have found ways to deal with it a long time ago. I've had it for 32 years now, and even though my wife still gets worried that I will have a seizure I have come to accept it and just live my life. I do get discouraged sometimes, but sometimes I get discouraged that I have to wear glasses or that it seems that I'm starting to get some arthritis. These are things we learn how to cope with, and our spouses have to learn that as well. This is a good place for you to talk with other other people and get some ideas on how to not be constantly afraid for your husband's condition. He is probably more likely to die in a car accident than from his epilepsy, and I hope you don't spend a lot of time worrying when he's driving to work!
As for the medication issues, has he been on lots of them over his life that haven't worked well? Has he talked with his doc about trying different ones? Keppra is known for causing anger so it might be time for him to try something else. There are a lot out there and he may be able to find something that has fewer side-effects. After having tried several, I have found that lamotrigine (Lamictal) works best for me and has few side-effects.
About your daughter, I think at her age you probably should not try to make her understand anything about epilepsy, and certainly don't say anything or act in a way that might make her think that she is somehow responsible for him having a seizure, or that she has to take care of him. Kids need to be taken care of by their parents, not the other way around. I've got three kids (33, 31 and 23) and they take a toll on everyone. My kids have all grown up with me and my epilepsy. I don't think we ever actually had a formal conversation with them about my seizures; I think it was just a part of all our lives and they learned about it little by little. I do know they don't feel that they are somehow responsible for my seizures or that they have to take care of me.
Finally, how do you "stop" his seizures? I can't imagine how that would be possible. When I've had seizures, and I've had probably ten thousand of complex partial seizures, and a handful of tonic clonics (grand mals) in these three decades and there is no way I or anyone else can stop them once they decide to happen.
In any case, I think it would be helpful for you to stay here and find some more healthy ways of dealing with all of this so your life isn't controlled by his epilepsy. He seems to be pretty high functioning, so I would hope that he is taking most of the responsibility for his condition.
Best of luck to you!
Onward!
As for the medication issues, has he been on lots of them over his life that haven't worked well? Has he talked with his doc about trying different ones? Keppra is known for causing anger so it might be time for him to try something else. There are a lot out there and he may be able to find something that has fewer side-effects. After having tried several, I have found that lamotrigine (Lamictal) works best for me and has few side-effects.
About your daughter, I think at her age you probably should not try to make her understand anything about epilepsy, and certainly don't say anything or act in a way that might make her think that she is somehow responsible for him having a seizure, or that she has to take care of him. Kids need to be taken care of by their parents, not the other way around. I've got three kids (33, 31 and 23) and they take a toll on everyone. My kids have all grown up with me and my epilepsy. I don't think we ever actually had a formal conversation with them about my seizures; I think it was just a part of all our lives and they learned about it little by little. I do know they don't feel that they are somehow responsible for my seizures or that they have to take care of me.
Finally, how do you "stop" his seizures? I can't imagine how that would be possible. When I've had seizures, and I've had probably ten thousand of complex partial seizures, and a handful of tonic clonics (grand mals) in these three decades and there is no way I or anyone else can stop them once they decide to happen.
In any case, I think it would be helpful for you to stay here and find some more healthy ways of dealing with all of this so your life isn't controlled by his epilepsy. He seems to be pretty high functioning, so I would hope that he is taking most of the responsibility for his condition.
Best of luck to you!
Onward!
Thank you all for your responses. He's currently on 800mg of Keppra twice daily, a swell as 1400mg of Tegratol twice daily. He's been on just about every med possible during this 32 year span, with no long term luck. He's able to see or feel a seizure "aura" and when this happens I need to drop his core body temperature as fast as possible. I apply cold rags to the back of his neck, under his arms, and feet. I keep him as cold as possible until the feeling goes away, and he falls into a deep sleep. This technique came from several neurologists that specialized in his type of epilepsy.