1. < Epilepsy & Seizures

First EEG was only 1 hour and was normal-what next?

Posted by adoptivemother @adoptivemother, 1 day ago

Hello,

We chose to do my daughter's EEG right away even though our consult is in March because I had time off work and seeing Mayo right away would alleviate a lot of anxiety by taking the mystery out of the visit. My daughter has medicine resistant seizures pretty regularly but they only did the EEG for 1 hour and it was normal. If the test had been longer, the likelihood of catching a seizure would have been high.

We came from out of state and stayed in a hotel. Had I scheduled it just prior to the consult, it would have been on a Friday with her consult on Monday so that would have been three nights in a hotel instead of one-therefore, I am still happy we moved it up but I wonder if they typically do a longer one next or just wait until the consult?

Heather

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Chris Gautier OR Santosha | @santosha | 1 day ago

Heather, Good Morning
I understand you very well. I have epilepsy since I have been a teenager, but I only got the diagnosis of the disease in 2019 at 48 years of age. As my seizures were mostly partial simple and complex ones (no convulsions), it took quite a long time to get the correct diagnosis of my "absences". All my EEGs performed until that time were normal. As I have learned a normal EEG result does not guarantee someone to be free from epilepsy. My first abnormal EEG came out when my doctor at that time gave me the correct orientations for doing it, such as sleeping as little as possible the night before the exam. One does not need to have a seizure during this exam to get the correct diagnosis of epilepsy. Having epileptiform waves during this exam caused by triggers (i.e. little sleep) is enough.
But I tell you that the best diagnosis of epilepsy is done based on evidence, symptoms the patient has. And for this, I recommend seeing an epileptologist. The first epileptologist I saw gave me the correct diagnosis of my type of epilepsy just based on pieces of evidence I and my husband gave to the doctor during those "absences" moments I had.
Wishing you all the best!
Chris (@santosha)

REPLY
1 reply
tonyde | @tonyde | 1 day ago

My understanding is an EEG will not show a seizure disorder unless there is seizure activity at the time of the test, similar to an EKG only working when there is a heart issue happening at the time of the test.

There is a long term test, lasting 3 to 5 days in a hospital setting. The patient is "wired" with the possibility a seizure occurring allowing the neurologist to determine the part of the brain causing seizures.

I had a bad seizure recently that required an ambuance ride to the ER, I was out for several hours, extensive tests were done and I have no memory of any of it, only that I woke up the next day in a hospital bed. The hospital neurologist recommended I be put in the hospital for 3 to 5 days with no medicine to trigger a seizure in a hospital situation.

I'm afraid it will be dangerous plus I won't be able to leave the bed without a nurse present. Waiting for a nurse is difficult for someone 70 with a got-to-go-now bladder. Some people on the Mayo Clinic stated that they had no or little seizure activity.

It's more complicated for you because the seizures are medication resistant. She needs and deserves some form of long-term test.

REPLY
1 reply
adoptivemother | @adoptivemother | 1 day ago
In reply to @tonyde "My understanding is an EEG will not show a seizure disorder unless there is seizure activity..." + (show)
@tonyde

My understanding is an EEG will not show a seizure disorder unless there is seizure activity at the time of the test, similar to an EKG only working when there is a heart issue happening at the time of the test.

There is a long term test, lasting 3 to 5 days in a hospital setting. The patient is "wired" with the possibility a seizure occurring allowing the neurologist to determine the part of the brain causing seizures.

I had a bad seizure recently that required an ambuance ride to the ER, I was out for several hours, extensive tests were done and I have no memory of any of it, only that I woke up the next day in a hospital bed. The hospital neurologist recommended I be put in the hospital for 3 to 5 days with no medicine to trigger a seizure in a hospital situation.

I'm afraid it will be dangerous plus I won't be able to leave the bed without a nurse present. Waiting for a nurse is difficult for someone 70 with a got-to-go-now bladder. Some people on the Mayo Clinic stated that they had no or little seizure activity.

It's more complicated for you because the seizures are medication resistant. She needs and deserves some form of long-term test.

Jump to this post

I am so sorry to hear you are dealing with this! Even though I am new to Mayo and my daughter's condition is confounding to me, I had a foster baby who was born having seizures and went through a lot with him. That actually was why I was so shocked that Mayo only did the EEG for an hour-the shortest one done on that baby was four hours. Anyhow, he grew out of it and to make sure he wasn't having seizures, he was given an ambulatory EEG that allowed him to move around. He has had them in the hospital and at home but a video camera is set up and he just had to stay in view of the camera. I guess if they remove your medicine, it is a risk to get out of bed due to falling though. Maybe you could sit in a wheel chair instead of a bed?

REPLY
1 reply
adoptivemother | @adoptivemother | 1 day ago
In reply to @santosha "Heather, Good Morning I understand you very well. I have epilepsy since I have been a..." + (show)
@santosha

Heather, Good Morning
I understand you very well. I have epilepsy since I have been a teenager, but I only got the diagnosis of the disease in 2019 at 48 years of age. As my seizures were mostly partial simple and complex ones (no convulsions), it took quite a long time to get the correct diagnosis of my "absences". All my EEGs performed until that time were normal. As I have learned a normal EEG result does not guarantee someone to be free from epilepsy. My first abnormal EEG came out when my doctor at that time gave me the correct orientations for doing it, such as sleeping as little as possible the night before the exam. One does not need to have a seizure during this exam to get the correct diagnosis of epilepsy. Having epileptiform waves during this exam caused by triggers (i.e. little sleep) is enough.
But I tell you that the best diagnosis of epilepsy is done based on evidence, symptoms the patient has. And for this, I recommend seeing an epileptologist. The first epileptologist I saw gave me the correct diagnosis of my type of epilepsy just based on pieces of evidence I and my husband gave to the doctor during those "absences" moments I had.
Wishing you all the best!
Chris (@santosha)

Jump to this post

Is an epileptologist a neurologist who specializes in epilepsy or is that a whole separate category of doctor? She is going to see the Department Chair of Epilepsy in Rochester who is a neurologist.

REPLY
1 reply
tonyde | @tonyde | 1 day ago
In reply to @adoptivemother "I am so sorry to hear you are dealing with this! Even though I am new..." + (show)
@adoptivemother

I am so sorry to hear you are dealing with this! Even though I am new to Mayo and my daughter's condition is confounding to me, I had a foster baby who was born having seizures and went through a lot with him. That actually was why I was so shocked that Mayo only did the EEG for an hour-the shortest one done on that baby was four hours. Anyhow, he grew out of it and to make sure he wasn't having seizures, he was given an ambulatory EEG that allowed him to move around. He has had them in the hospital and at home but a video camera is set up and he just had to stay in view of the camera. I guess if they remove your medicine, it is a risk to get out of bed due to falling though. Maybe you could sit in a wheel chair instead of a bed?

Jump to this post

My regular neurologist suggested a 3 day at home study, then decided against it because my medication is somewhat effective. I can go weeks without a seizure, thankfully.

REPLY
Chris Gautier OR Santosha | @santosha | 23 hours ago
In reply to @adoptivemother "Is an epileptologist a neurologist who specializes in epilepsy or is that a whole separate category..." + (show)
@adoptivemother

Is an epileptologist a neurologist who specializes in epilepsy or is that a whole separate category of doctor? She is going to see the Department Chair of Epilepsy in Rochester who is a neurologist.

Jump to this post

Hi Heather,
An epileptologist is a type of neurologist who has undergone additional training specifically focused on epilepsy and seizure disorders. This specialization allows them to provide expert care for patients with epilepsy, including advanced treatment options and management strategies for those whose seizures are difficult to control. I myself have seen a great difference between the treatment I have received from neurologists versus epileptologists. To me, it seems that epileptologists have a much more individualized approach, customizing the treatment and going deeper into the patient's epilepsy and situation.
Here is a link with more information on what an epileptologist is: https://www.epilepsy.com/stories/what-epileptologist-and-who-needs-one
Chris (@santosha)

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