1. < Epilepsy & Seizures

It's hard to prove epilepsy to the doctor when the EEG is normal

Posted by lsittll @lsittll, Jul 1, 2020

You have lots of seizures so they do an EEG. But then during the EEG you have no seizures. How often does this kind of thing happen to us? It's just like you feel sick so you go to the doctor and at the doctor;s you don't have the problem/symptoms? We can't show them the problem.

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ibwatchin | @ibwatchin | Feb 1, 2021
In reply to @jakedduck1 "@ibwatchin Hello, Welcome to Mayo Clinic Connect. Did anyone witness your seizure? The normal tests for..." + (show)
@jakedduck1

@ibwatchin
Hello,
Welcome to Mayo Clinic Connect.
Did anyone witness your seizure? The normal tests for seizures are EEG, MRI or CT, medical history, Neurological exam & blood tests. I assume you had these tests but many people with Epilepsy have normal tests. When all these tests are normal a diagnosis may depend on what a witness saw. Did you bite your tongue and/or cheek/s?
did your neurologist put you on anti-seizure medication? If so what are you taking? Do your nocturnal seizures happen soon after you fall asleep? Have you ever had one during the day? Nocturnal seizures can be dangerous? You may want to invest in an anti-suffocation pillow and perhaps a nocturnal seizure monitor to alert someone. It might be a good idea to get another opinion.
I have had Epilepsy for 54 years and the cause of my seizures is still unknown which is frequently the case in Epilepsy patients.
Approximately 6 out of 10 people never know the cause of their seizures.
Wishing you well,
Jake

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3am to 4am is my time to flip out. My wife is witness to me flopping on bed falling on floor chewing on cheek and tongue pissing my pants and being carried away by 911. yes, i am on antiseizure pill. I am on cpap mask. Last test was heart monitor 30 day. Only 1 night at 1am recorded 32 heart rate and 2.6 second stoppage of heart. Doctor said not bad enough to do further tests. No problems during day. Have a good day,Howard

REPLY
Leonard | @jakedduck1 | Feb 1, 2021

@ibwatchin
Hello Howard,
Although unusual, switching from a brand to generic or generic to brand or changing manufacturers seem to lower the seizure threshold in some people including myself. Some doctors and pharmacists still insist it's not a problem. Has your Neuro increased or tried adding another medication to your regimen?
Another thing that may help is if you currently take immediate-release medication try switching to extended-release. Studies have shown improved seizure control with some extended-release medications.
Best of luck,
Jake

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ibwatchin | @ibwatchin | Feb 1, 2021

my plan now is to take 600mg alpha lipoic acid r-ala type every night at bedtime with only water for 60 days to try to git some relief from peripheral neuropathy in both feet which is a torture every night. My doctors do not have a plan or give a #$% just waiting for me to die.

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Moderator
Amanda Roe | @amandajro | Feb 1, 2021

Hello @ibwatchin and welcome to Mayo Clinic Connect. I see your first post was just yesterday and wanted to extend my welcome in addition to @jakedduck1. From what I can read, you are frustrated with both your situation as well as the lack of next steps.

Since you feel strongly that your doctors aren't supporting you have you considered a second opinion?

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jeffery | @jeffery | Feb 22, 2021

All of the eegs I had showed normal until I spent a few days in the hospital for an extended eeg observation. I think having someone at appointments who is close to you and has possibly observed your seizures, even mild ones help with diagnosis and getting in the correct path.
I went years without one and then started having small breakthrough-seizures and my wife had me go to my neurologist with her to help explain what she saw and things changed.

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