Hi I am a mother of 2 and my youngest daughter (3 years) has been diagnosed with epilepsy in the last 2 weeks. We are still struggling to get the medication to cover the seizures and to complicate things, we are starting to get different seizures. We started off with grand mal. Shaking for 30 seconds or so and going grey. Since we started the medication we have a 10 days of peace but now the different seizures have started. Staring straight ahead and just last night leg jerking (when she was going to sleep). I didn't know if what she was doing was voluntary or not. She did it one or twice through the night as well. I got up at 4.30 am and looked up seizures online and saw that jerking of limbs is a type of focal seizure. Any advice on these experiences would be appreciated.
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I was dx'd with epilepsy when I was 18 months old. Now being 31 yrs old, ive been through my share of seizure medications. As a child, I had complex partial seizures, id stare and my eyes would blink very fast, id smack my lips, and pick at my clothing. I dont recall anything during those seizures. At times I would have grand mal seizures and my mom would find me on the floor with slobbers coming out of my mouth, and my lips blue. Those were the big ones, where Id be given ativan and be out of it for a couple of days.
Since then, my seizures have turned to be simple partial seizures. Im aware of whats occuring during them, and I do get stiffening and jerking in my arms and legs. I get funny feelings through out my body... feeling of fear, sadness.. nausea, a tingling in my hands and feet that goes all the way up to my body... my heart begins to race, and my head turns to the right, thats when the stiffening and jerking would begin. They last between a minute or two. Im aware of whats going on.... I can hear what people are saying or asking me.. I just cant respond to them til its over.
I know its a scary time to be going through, I can only imagine what my parents went through when they were told I had epilepsy. If there is any questions you have, feel free to ask. You'll find alot of great people here at CWE! Welcome!
Since then, my seizures have turned to be simple partial seizures. Im aware of whats occuring during them, and I do get stiffening and jerking in my arms and legs. I get funny feelings through out my body... feeling of fear, sadness.. nausea, a tingling in my hands and feet that goes all the way up to my body... my heart begins to race, and my head turns to the right, thats when the stiffening and jerking would begin. They last between a minute or two. Im aware of whats going on.... I can hear what people are saying or asking me.. I just cant respond to them til its over.
I know its a scary time to be going through, I can only imagine what my parents went through when they were told I had epilepsy. If there is any questions you have, feel free to ask. You'll find alot of great people here at CWE! Welcome!
momof3toboys,
Thanks for your reply. I have a lot to learn. Everything helps as I come to terms with what I have to deal with. Did you you have general tiredness from the partial seizures? At the moment my girl is tired all the time from the moment she wakes til when she goes to sleep. I'm worried that she is having seizures at night that we can't pick and is not getting a proper nights sleep. Its funny that she always seems to sleep better for her midday nap than at night. We have just uped her medication so hoping that might cover some or partial seizures. Did your medication ever completely cover your seizures? (other than growing out of the medication). Thanks again for your reply.
Thanks for your reply. I have a lot to learn. Everything helps as I come to terms with what I have to deal with. Did you you have general tiredness from the partial seizures? At the moment my girl is tired all the time from the moment she wakes til when she goes to sleep. I'm worried that she is having seizures at night that we can't pick and is not getting a proper nights sleep. Its funny that she always seems to sleep better for her midday nap than at night. We have just uped her medication so hoping that might cover some or partial seizures. Did your medication ever completely cover your seizures? (other than growing out of the medication). Thanks again for your reply.