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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@royanthony

I forgot to mention. It wasn't until my current neurologist, now working with him for 16 years, was I directed to have any tests. When we first met, he demanded I have an MRI. We found the issue immediately with the 1st MRI. I suggest speaking to her doctor about an MRI. There is one test that is done in hospitals where the patient is taken off of all medication, typically resulting in the patient having a seizure. This test allows the neuro to find more detail about wherefrom the seizures originate and other factors. He/she then can make better recommendations regarding surgery. I hope this helps.

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@royanthony
Hi Roy, Good Morning
You meant the EEG Video Exam done in the hospital, correct?
I am adding a link to @amcquaig with more information on this exam.
https://www.epilepsy.com/diagnosis/eeg/video-eeg
Chris (@santosha)

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@amcquaig, Good Morning
I just read your posts again and saw that your daughter had a home EEG, measuring the electrical activity in her brain. Have the doctors perhaps told you which areas of your daughter's brain these electrical activities originate from?
I once had a hospital EEG and no seizures were identified. My medication dosage was reduced, and I was kept awake during the night, but still no seizures appeared. In my personal opinion, the days I spent at the hospital didn't really reflect my daily life, and many of my triggers were kept away.
Chris (@santosha)

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@kb2014

List of seizure precipitants
Extreme unnecessary emotional distress
First generation anti histamines.
Loud noises bright lights
Extreme temp variability
HRT
Barometric pressure changes
Dehydration
Caffeine
Fatigue.
Insomnia
A diet that does not provide nutrients
Poor air quality
Not getting physical activity
There are supplements as well that increase seizure risk but the best thing to do is check what supplements interact with all prescription meds yourself
Oh. A new one I recently learned- constipation.
I will list more as I learn.

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Hi @kb2014
Thank you for sharing this with us. I did not know that constipation could be a trigger for seizures. I will pay more attention to it.
A book that helped me greatly to identify my own triggers for seizures was "Taking Control of Your Seizures: Workbook": https://www.amazon.com/Taking-Control-Your-Seizures-Treatments/dp/019933501X
Triggers can vary according to the type of epilepsy and the person. I, for example, have learned that low sodium is a very dangerous trigger for me. To manage this trigger, I make good use of a homemade serum (water, sugar, and salt). High temperatures are also a trigger for my seizures. On warm days, I use a towel tightly twisted behind my neck. And food, for sure, has a direct impact on my seizure threshold. I have taken gluten out of my diet, and this has reduced my seizures by 60%.
Learning about my personal triggers has helped me greatly, avoiding or managing situations that could bring me harm.
For those interested, I am adding a link to common triggers for seizures: https://www.epilepsy.com/what-is-epilepsy/seizure-triggers
Has anyone else experienced other triggers not listed here in the posts?
Have a nice day!
Chris (@santosha)

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@santosha

Hi @kb2014
Thank you for sharing this with us. I did not know that constipation could be a trigger for seizures. I will pay more attention to it.
A book that helped me greatly to identify my own triggers for seizures was "Taking Control of Your Seizures: Workbook": https://www.amazon.com/Taking-Control-Your-Seizures-Treatments/dp/019933501X
Triggers can vary according to the type of epilepsy and the person. I, for example, have learned that low sodium is a very dangerous trigger for me. To manage this trigger, I make good use of a homemade serum (water, sugar, and salt). High temperatures are also a trigger for my seizures. On warm days, I use a towel tightly twisted behind my neck. And food, for sure, has a direct impact on my seizure threshold. I have taken gluten out of my diet, and this has reduced my seizures by 60%.
Learning about my personal triggers has helped me greatly, avoiding or managing situations that could bring me harm.
For those interested, I am adding a link to common triggers for seizures: https://www.epilepsy.com/what-is-epilepsy/seizure-triggers
Has anyone else experienced other triggers not listed here in the posts?
Have a nice day!
Chris (@santosha)

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Hi @kb2014 again
Just researched about constipation as a potential trigger and found this:
Constipation can potentially trigger seizures in some people with epilepsy. This connection exists for several reasons:
Physical stress: The discomfort and strain associated with constipation creates physical stress on the body, which is a known seizure trigger for many people with epilepsy.
Autonomic nervous system effects: Constipation can affect the autonomic nervous system, which regulates many involuntary bodily functions. These changes can potentially lower seizure threshold in susceptible individuals.
Electrolyte imbalances: Chronic constipation may contribute to electrolyte imbalances, which can increase seizure risk.
Sleep disruption: Constipation and related discomfort can disrupt sleep patterns, and sleep deprivation is a common seizure trigger.
This connection isn't widely discussed, but some epilepsy patients do report constipation as a personal trigger.
Thankfully, I am better managing the constipation I have been having lately through my medication by adding golden flaxseed flour to my salads or yogurts.
Chris (@santosha)

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@santosha

@royanthony
Hi Roy, Good Morning
You meant the EEG Video Exam done in the hospital, correct?
I am adding a link to @amcquaig with more information on this exam.
https://www.epilepsy.com/diagnosis/eeg/video-eeg
Chris (@santosha)

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Yes, now seeing the EEG you mention, I believe that is the one as I know it is done in the hospital. I appreciate the link. I've never looked into the detail of this procedure. So, it will be an education for me.

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@royanthony
My pleasure Roy!
Have a nice evening
Chris

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@santosha

@vijena01 Good Afternoon
Be very welcome to our group!
Like @methel, I also was not sure what you meant by natural medication. CBD (Epidiolex) for example is a natural medication, but it is a prescription medication.
I was diagnosed with epilepsy in 2019 at the age of 48. The cause of my epilepsy was not found straight away. It took some time to know the cause of my epilepsy through a neurologist specialized in epilepsy (epileptologist).
What kind of doctor is treating your epilepsy?
Chris (@santosha)

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You say "it took some time to know the cause of my epilepsy". What was the cause? Thank you.
ray hippele

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