1. < Epilepsy & Seizures
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New onset of epilepsy

Posted by amcquaig @amcquaig, Feb 10 10:04am

My 20 yr old daughter has always been healthy, but in 2024 she had shingles, two ovarian cists, and then had her first seizure in Dec. Since then, she has had a seizure every month. With the first few seizures she bit her tongue so very bad then with the next several seizures she chattered her teeth to the point I thought they were going to break and now she hyperventilates. The doctor diagnosed her with epilepsy and started her on 3000mg on Keppra and provided us with very minimal care. We have now gone to a second dr. who told us that she absolutely did not need to be on that high dose of Keppra and so he has lowered the dosage, but still hasn't done any tests to maybe provide some answers for the rapid onset of this condition. My daughter is trying to deal with this and is in nursing school and it's just breaking my heart to see her have to go through this. Can anyone give me some advice or a recommendation?

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Profile picture for closetmonster93
closetmonster93 | @closetmonster93 | May 21 1:39pm
In reply to @santosha "@hippele Hi Ray, Good Morning From São Paulo Answering your question. As a 5-year-old in France,..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@hippele
Hi Ray, Good Morning From São Paulo
Answering your question.
As a 5-year-old in France, I accidentally ingested some medicines (colchicine, a gout medication, was one of them) at my grandfather's home, mistaking the pills for candy. My mother found me convulsing and rushed me to a village hospital. The situation worsened when the attending physician, who had reportedly been drinking, administered additional medication that triggered a week-long coma.
Upon returning to Brazil, I appeared to have fully recovered with no apparent consequences. However, during puberty, the first auras emerged and later developed into complex partial seizures. Despite seeing multiple doctors, my symptoms were repeatedly dismissed.
In 2018, at age 47, my seizures significantly intensified. Finally, in 2019, at age 48, I received a definitive diagnosis of temporal lobe epilepsy with left mesial sclerosis. One of the epileptologists who has treated me explained that the childhood poisoning incident had caused lasting neurological damage that remained silent until puberty, when hormonal changes triggered the manifestation of epilepsy.
As @jakedduck1 has pointed out in another post (https://connect.mayoclinic.org/comment/291877/), approximately 65% of people will never know the cause of their epilepsy. I can say I am fortunate to know what caused my epilepsy.
Does anyone else here in our community know what caused their epilepsy?
Have all a nice day!
Chris (@santosha)

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@santosha Yes, as stated previously in conversation yesterday, mine was believed to be genetic, however genetic testing proved otherwise. Mine was a brain trauma in early youth. I can completely understand your situation, and I have heard that neurological damage doesn't always present immediately.

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Chris Gautier, Volunteer Mentor | @santosha | May 21 2:06pm

@hippele
Hi Ray
Thank you for sharing that with us. I was surprised to learn that genetic epilepsy accounts for approximately 30% to 40% of all cases. This means most people with epilepsy have acquired it throughout life, as has happened to us.
Unfortunately, I've known many people like you and Joe9 who developed epilepsy through accidents resulting in head injuries or infections during childhood—something most people remain unaware of unless they've experienced it firsthand. This is precisely why increasing epilepsy awareness throughout the world is so critically important.
Would anyone else be willing to share their experience?
Chris (@santosha)

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Chris Gautier, Volunteer Mentor | @santosha | May 21 3:55pm
In reply to @closetmonster93 "@santosha Yes, as stated previously in conversation yesterday, mine was believed to be genetic, however genetic..." + (show)
Profile picture for closetmonster93 @closetmonster93

@santosha Yes, as stated previously in conversation yesterday, mine was believed to be genetic, however genetic testing proved otherwise. Mine was a brain trauma in early youth. I can completely understand your situation, and I have heard that neurological damage doesn't always present immediately.

Jump to this post

Hi @closetmonster93
Nice to be chatting with you again here, thanks for your message.
Throughout my epilepsy treatment journey, I've noticed something curious: most doctors seem reluctant to discuss the cause of epilepsy with their patients. The reason behind this hesitation remains unclear to me.
My breakthrough came when I consulted a distinguished neurologist specialized in epilepsy, who is also an associate professor of medicine at USP (São Paulo University). What struck me was her immediate diagnosis after asking me some questions —"You have temporal lobe epilepsy"—even before examining the exams that confirmed this condition. Her confidence and precision were truly remarkable!
I firmly believe we need much greater epilepsy awareness in our society. This neurological condition receives far too little attention in mainstream media. Here in Brazil, for instance, Alzheimer's disease features in weekly articles, while epilepsy might only be mentioned a few times throughout the entire year.
Increasing public awareness about epilepsy and its potential causes could help people make more informed choices, potentially avoiding situations that might put them or their children at risk of developing this condition.
Do you and others share this feeling? I'd be interested to hear your thoughts.
Hugs from São Paulo,
Chris (@santosha)

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royanthony | @royanthony | May 25 12:33pm
In reply to @santosha "Hi @closetmonster93 Nice to be chatting with you again here, thanks for your message. Throughout my..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @closetmonster93
Nice to be chatting with you again here, thanks for your message.
Throughout my epilepsy treatment journey, I've noticed something curious: most doctors seem reluctant to discuss the cause of epilepsy with their patients. The reason behind this hesitation remains unclear to me.
My breakthrough came when I consulted a distinguished neurologist specialized in epilepsy, who is also an associate professor of medicine at USP (São Paulo University). What struck me was her immediate diagnosis after asking me some questions —"You have temporal lobe epilepsy"—even before examining the exams that confirmed this condition. Her confidence and precision were truly remarkable!
I firmly believe we need much greater epilepsy awareness in our society. This neurological condition receives far too little attention in mainstream media. Here in Brazil, for instance, Alzheimer's disease features in weekly articles, while epilepsy might only be mentioned a few times throughout the entire year.
Increasing public awareness about epilepsy and its potential causes could help people make more informed choices, potentially avoiding situations that might put them or their children at risk of developing this condition.
Do you and others share this feeling? I'd be interested to hear your thoughts.
Hugs from São Paulo,
Chris (@santosha)

Jump to this post

You've probably seen the following before from me. It is so infuriating that the medical industry and those large entities who seek donations don't come together and push our government for help. For epilepsy, we are almost at the bottom of the barrel in terms of funding from the government. Has anyone seen a "linked-in" site where those who have epilepsy ( I hate the word Epileptic!) can communicate with others who have this condition.

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