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Are They Kidding???
Sun, 12/26/2004 - 18:47I have now had two complex partial seizures and learned that I have "profound atrophy" on my left temporal and pariatal lobes. Are they kidding??? I am a professional military officer on active duty. I have been placed on a 12-month profile for no weapons, no driving, and no deployment. To make matters more complicated, I am stationed in remote region that does not have public transportation and I live 20 miles off post.
I am 28 years old with a ticking clock and purposely put off having kids to solidify my career. I was going to start trying in the next two years. Now I come across conflicting and disturbing research with regards to dangers to myself and my children on AND off medication. Is adoption the way to go?
I actually feel guilty for being angry about all of this. I know things could be ten times worse. I could have lost a limb or worse in combat. But instead of feeling grateful and thankful this past Thanksgiving, I felt confused, embarrassed, frustated, and resentful. Then I felt angry and guilty for feeling all of the other emotions.
I will gladly hear feedback/advice from others....
Samantha
RE: Are They Kidding???
Submitted by mommy2kyra on Sat, 2004-12-04 - 17:59
Samantha,
I can relate. Although I had been experiencing complex partials for good 5 years before being diagnosed (I thought they were panic attacks), I was blown away when I had a grand mal one night...landing me in the ER. I was SO confused and scared, then I found out that my "panic attacks" were actually seizures and I was REALLY confused!!
My doctor called the afternoon after I took my EEG, which happened to be my 26th birthday, to tell me that I had epilepsy and as of that moment I was not to drive any more. I was angry (Yeah, great birthday). And I hadn't begun to understand or accept what was happening within my body. I had married at age 22, but we purposely put off having children as well. We didn't always want to be worrying about how to pay bills, or be stuck at dead-end jobs. I was a full-time college student and I had all sorts of worries. I put having children near the bottom of my list of worries.
When I hit 30, a year from graduating with my BA, my hubby laid it out for me. He had always wanted children, and he told me that I needed to make up my mind whether or not we would have children. He needed to know. I finally told him that when I graduated, we would try but ONLY if he would take on a good portion of the parenting...it had to be 50/50 (instead of "that's woman's work" attitude). Hubby agreed, and 4 months after graduating I got pregnant.
I got pretty lucky with my pregnancy. No increase in seizures, no major lethargy...it was a terrific pregnancy. I gave birth to a beautiful, healthy girl and nursed her for 8 months. No problems, except my inexperience and Kyra's colic. 18 months later, we tried again. I got pregnant on our first attempt, and quickly learned that every pregnancy is different. My phenobarb dosage had to be doubled to control my seizures within the first month of pregnancy! I was absolutely exhausted throughout my pregnancy. Then again, I was chasing my toddler 24/7...I'm sure that makes a difference! We quickly decided that this baby would be our last. Two children is a good number for us. I was always worried that the increased dosage of meds would also increase the odds of birth defects. But, 7 weeks ago, I gave birth to another beautiful healthy girl. I am nursing her as well. She is happy, healthy and strong.
To make a (very) long story short, suffice it to say that you need to give yourself time to understand, adjust, and accept things for the way they are before making any decisions about child-bearing. Having children (naturally or through adoption) is major work and stress. And there are risks with everything in life. The risk of having a baby with birth defects may be higher for those with seizure disorders, but it's still considerably low...especially if you are monitered closely and always kept at the lowest possible effective dosage.
BTW, I'm not sure that others would agree with you on the loss of limb thing. Being diagnosed with a seizure disorder isn't the greatest (or worst). It's an "invisible" affliction, affecting millions all over the world, yet many people do not understand the disease and are without sympathy. That leads me (and I'm sure others) to "hide", resulting in feelings of isolation and shame. While I'm sure that losing a limb is no walk in the park, it's nothing to be ashamed of either. I struggle with these feelings still...8 years after my diagnosis...maybe I always will. While I KNOW that there's no shame in having a seizure disorder, I still feel it. Strange.
Anyway, sorry my post was so long. I hope that you were able to get something out of it. Best of luck to you..and thank you for your military service :)
Heather
Samantha,
I can relate. Although I had been experiencing complex partials for good 5 years before being diagnosed (I thought they were panic attacks), I was blown away when I had a grand mal one night...landing me in the ER. I was SO confused and scared, then I found out that my "panic attacks" were actually seizures and I was REALLY confused!!
My doctor called the afternoon after I took my EEG, which happened to be my 26th birthday, to tell me that I had epilepsy and as of that moment I was not to drive any more. I was angry (Yeah, great birthday). And I hadn't begun to understand or accept what was happening within my body. I had married at age 22, but we purposely put off having children as well. We didn't always want to be worrying about how to pay bills, or be stuck at dead-end jobs. I was a full-time college student and I had all sorts of worries. I put having children near the bottom of my list of worries.
When I hit 30, a year from graduating with my BA, my hubby laid it out for me. He had always wanted children, and he told me that I needed to make up my mind whether or not we would have children. He needed to know. I finally told him that when I graduated, we would try but ONLY if he would take on a good portion of the parenting...it had to be 50/50 (instead of "that's woman's work" attitude). Hubby agreed, and 4 months after graduating I got pregnant.
I got pretty lucky with my pregnancy. No increase in seizures, no major lethargy...it was a terrific pregnancy. I gave birth to a beautiful, healthy girl and nursed her for 8 months. No problems, except my inexperience and Kyra's colic. 18 months later, we tried again. I got pregnant on our first attempt, and quickly learned that every pregnancy is different. My phenobarb dosage had to be doubled to control my seizures within the first month of pregnancy! I was absolutely exhausted throughout my pregnancy. Then again, I was chasing my toddler 24/7...I'm sure that makes a difference! We quickly decided that this baby would be our last. Two children is a good number for us. I was always worried that the increased dosage of meds would also increase the odds of birth defects. But, 7 weeks ago, I gave birth to another beautiful healthy girl. I am nursing her as well. She is happy, healthy and strong.
To make a (very) long story short, suffice it to say that you need to give yourself time to understand, adjust, and accept things for the way they are before making any decisions about child-bearing. Having children (naturally or through adoption) is major work and stress. And there are risks with everything in life. The risk of having a baby with birth defects may be higher for those with seizure disorders, but it's still considerably low...especially if you are monitered closely and always kept at the lowest possible effective dosage.
BTW, I'm not sure that others would agree with you on the loss of limb thing. Being diagnosed with a seizure disorder isn't the greatest (or worst). It's an "invisible" affliction, affecting millions all over the world, yet many people do not understand the disease and are without sympathy. That leads me (and I'm sure others) to "hide", resulting in feelings of isolation and shame. While I'm sure that losing a limb is no walk in the park, it's nothing to be ashamed of either. I struggle with these feelings still...8 years after my diagnosis...maybe I always will. While I KNOW that there's no shame in having a seizure disorder, I still feel it. Strange.
Anyway, sorry my post was so long. I hope that you were able to get something out of it. Best of luck to you..and thank you for your military service :)
Heather