Thank you. I'm now 73. When I was almost 8 I was in a car wreck (before seat belts and air bags). I had a lump on my head and began having frequent headaches that would last 2 or 3 days at a time. About a year later I found myself lying face down behind the swing set on the school playground when the bell rang. I had no idea how I got there. I wasn't hurt so I dusted myself off and scrambled into the classroom before my strict teacher got there. A year after that I had a grand mal seizure in the family car near a hospital. They put me on a medication for a while, but took me off of it a few months later after my father lost his job. After that I had occasional "absences" until after my first year in college. I also stopped having the headaches. I thought I was through with it, but about 20 years ago I started having odd feelings and felt the need for more rest. However I didn't think about seizures. Then 7 years ago I seizured while driving on a city street, causing an accident. When I regained consciousness, I couldn't talk. An ambulance crew took me to a hospital. I wasn't aware of what was going on for 2 days. I found out that I was seizuring for several hours. They took the cell phone out of my pocket and called people on the contact list who had no idea of my medical history, so the hospital began treating me for a possible stroke. They finally were able to contact my sister who lived in a distant city, and she told them about one grand mal seizure from my childhood. She didn't know about the absence seizures through high school. The hospital gave me stroke drugs and ran me through a CT scan and an MRI. They determined that I didn't have a stroke, but recommended seizure medications. They gave me a generic Keppra prescription. Then I got connected with a neurologist who told me it was common to grow out of childhood seizures, and it wasn't unusual to begin having seizures as an older adult. It wasn't so common to have a "quietus" period in between like I had, and start having them again.
I'm 73 and my absence came back and now I'm med resistant... I have around 100 seizures a day and require home care.. can you address this issue for others to learn and understand more... including myself.
Thanks for addressing this. I’ve been misdiagnosed and have nowhere to go. He’s the top neurologist in this town and my insurance won’t allow me to go outside my plan for a second opinion. I even have a VNS implant with a magnet . I’m a 71 yo fe without dementia. He’s done no MRI , scans etc but at least 20 eegs and says I have ictal epilepsy. Which is wrong. He now wants another one! Cameras , inpatient, outpatient, cameras etc. it’s silly. On zonisamide lamictal and it’s been a financial hardship! It’s heartbreaking and he’s wrong Personally I think I have a slow growing tumor but he laughs at me. My family just believes him. I’m perfectly normal. And I’m afraid. Bc I do not dementia and I would never go to an assisted living as he suggested
I forgot to mention that my family believes he’s some kind of god and I’m totally wrong so they’ve left me bc I won’t do as he says. So I’ve lost my family bc of him too. Bottom line … neurologists don’t know it all. And just bc ppl are older we can’t all be put in a dementia basket like doctors love to do ! It’s all very heartbreaking how doctors can ruin families when they can pull the family aside and tell them what they think is best when they should talk to the patient
Thank you. I'm now 73. When I was almost 8 I was in a car wreck (before seat belts and air bags). I had a lump on my head and began having frequent headaches that would last 2 or 3 days at a time. About a year later I found myself lying face down behind the swing set on the school playground when the bell rang. I had no idea how I got there. I wasn't hurt so I dusted myself off and scrambled into the classroom before my strict teacher got there.
A year after that I had a grand mal seizure in the family car near a hospital. They put me on a medication for a while, but took me off of it a few months later after my father lost his job.
After that I had occasional "absences" until after my first year in college. I also stopped having the headaches. I thought I was through with it, but about 20 years ago I started having odd feelings and felt the need for more rest. However I didn't think about seizures. Then 7 years ago I seizured while driving on a city street, causing an accident. When I regained consciousness, I couldn't talk. An ambulance crew took me to a hospital. I wasn't aware of what was going on for 2 days. I found out that I was seizuring for several hours. They took the cell phone out of my pocket and called people on the contact list who had no idea of my medical history, so the hospital began treating me for a possible stroke.
They finally were able to contact my sister who lived in a distant city, and she told them about one grand mal seizure from my childhood. She didn't know about the absence seizures through high school. The hospital gave me stroke drugs and ran me through a CT scan and an MRI. They determined that I didn't have a stroke, but recommended seizure medications. They gave me a generic Keppra prescription.
Then I got connected with a neurologist who told me it was common to grow out of childhood seizures, and it wasn't unusual to begin having seizures as an older adult. It wasn't so common to have a "quietus" period in between like I had, and start having them again.
I'm 73 and my absence came back and now I'm med resistant... I have around 100 seizures a day and require home care.. can you address this issue for others to learn and understand more... including myself.
Thanks for addressing this. I’ve been misdiagnosed and have nowhere to go. He’s the top neurologist in this town and my insurance won’t allow me to go outside my plan for a second opinion. I even have a VNS implant with a magnet . I’m a 71 yo fe without dementia. He’s done no MRI , scans etc but at least 20 eegs and says I have ictal epilepsy. Which is wrong. He now wants another one! Cameras , inpatient, outpatient, cameras etc. it’s silly. On zonisamide lamictal and it’s been a financial hardship! It’s heartbreaking and he’s wrong Personally I think I have a slow growing tumor but he laughs at me. My family just believes him. I’m perfectly normal. And I’m afraid. Bc I do not dementia and I would never go to an assisted living as he suggested
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Thank you for your support!
I forgot to mention that my family believes he’s some kind of god and I’m totally wrong so they’ve left me bc I won’t do as he says. So I’ve lost my family bc of him too. Bottom line … neurologists don’t know it all. And just bc ppl are older we can’t all be put in a dementia basket like doctors love to do ! It’s all very heartbreaking how doctors can ruin families when they can pull the family aside and tell them what they think is best when they should talk to the patient
Th