Hi Jared, let me begin by saying I am not asking for advice or diagnosis. I am curious to know your thoughts on the following: * 53yo * Male * 205 lbs * Doesn’t drink * TBI in 1994 * Began having TCs in 1996 (uncontrolled by AEDs…multiple mono therapies tried) * Left Temporal Lobectomy in 2002 - unable to completely remove scar tissue completely due to risk of losing speech and long term memory (surgery and continued medication achieve control with a handful of breakthrough seizures when a combination of stress, lack of sleep and missed doses * RNS implant in 2018 in effort to control breakthroughs (Depth nodes placed in left temporal region and left hippocampus region. Using the information I have been able to find regarding IEDs, I understand they usually last about 70-200 nanoseconds…Please correct me if I’m wrong. As of 2024, I have experienced 1.2 million IEDs and seizures (majority being IEDs). These events are not logged unless they are 3.5 seconds or longer in duration. The IEDs I experience are subclinical with about 85% occurring in my sleep while the other 15% occur while awake (usually around wake time, high stress, lack of sleep, etc) It’s usually 1500-2000 per 24 hour period but some days have been upwards of 3000in a day. I have been told that there is little that can be done as nearly all activity is subclinical so my doctor and I do our best to manage what we can with the continued goal to be 0 clinical seizures. This goal continues to be achieved. My concern is the quantity of IEDs. I do not believe the quantity I experience to be normal yet do not have much information that give me a better understanding of the possible number of people that experience what I do daily. Note: I understand to a degree the possibility of artifacts and how they can be misread as an event to the untrained eye. These artifacts usually occur when I am downloading the data from my RNS device. Do you have any personal experience as an EEG tech with someone else experiencing similar to what I experience? Do you know of any studies, sites, materials, etc that may help give me a better understanding of what I experience? Please if there are questions I didn’t ask that you think may be helpful for me understand better, please let me know as I desire to better understand my condition. Thank you for your time and keep up the great videos please
Your IEDs according to those numbers are happening 1-2x per minute which are categorized as “frequent.” This research paper showed no neuronal cell death in patients with frequent IEDs: www.ncbi.nlm.nih.gov/pmc/articles/PMC9682855/ The death of neurons is more likely to happen if you are having uncontrolled seizures lasting more than 5 mins (called status epilepticus). Your combination of meds, surgery, and RNS likely prevents this from happening. It sounds like your current neurologist has been doing all the right things. Best wishes!
Thank you Jared for your quick reply. My epileptologist and I have discussed this as well and have come to the same conclusion. We are basically in management mode, my doc focusing on keeping seizures at bay and me focusing on improving quality of life. I thank you for the link…will review this afternoon. Looking forward to more great content in the future!
Thanks for watching, subscribe for more EEG review videos ❤
Hi Jared, let me begin by saying I am not asking for advice or diagnosis.
I am curious to know your thoughts on the following:
* 53yo
* Male
* 205 lbs
* Doesn’t drink
* TBI in 1994
* Began having TCs in 1996 (uncontrolled by AEDs…multiple mono therapies tried)
* Left Temporal Lobectomy in 2002 - unable to completely remove scar tissue completely due to risk of losing speech and long term memory (surgery and continued medication achieve control with a handful of breakthrough seizures when a combination of stress, lack of sleep and missed doses
* RNS implant in 2018 in effort to control breakthroughs (Depth nodes placed in left temporal region and left hippocampus region.
Using the information I have been able to find regarding IEDs, I understand they usually last about 70-200 nanoseconds…Please correct me if I’m wrong.
As of 2024, I have experienced 1.2 million IEDs and seizures (majority being IEDs). These events are not logged unless they are 3.5 seconds or longer in duration.
The IEDs I experience are subclinical with about 85% occurring in my sleep while the other 15% occur while awake (usually around wake time, high stress, lack of sleep, etc)
It’s usually 1500-2000 per 24 hour period but some days have been upwards of 3000in a day.
I have been told that there is little that can be done as nearly all activity is subclinical so my doctor and I do our best to manage what we can with the continued goal to be 0 clinical seizures. This goal continues to be achieved.
My concern is the quantity of IEDs. I do not believe the quantity I experience to be normal yet do not have much information that give me a better understanding of the possible number of people that experience what I do daily. Note: I understand to a degree the possibility of artifacts and how they can be misread as an event to the untrained eye. These artifacts usually occur when I am downloading the data from my RNS device.
Do you have any personal experience as an EEG tech with someone else experiencing similar to what I experience?
Do you know of any studies, sites, materials, etc that may help give me a better understanding of what I experience?
Please if there are questions I didn’t ask that you think may be helpful for me understand better, please let me know as I desire to better understand my condition.
Thank you for your time and keep up the great videos please
Your IEDs according to those numbers are happening 1-2x per minute which are categorized as “frequent.” This research paper showed no neuronal cell death in patients with frequent IEDs: www.ncbi.nlm.nih.gov/pmc/articles/PMC9682855/
The death of neurons is more likely to happen if you are having uncontrolled seizures lasting more than 5 mins (called status epilepticus). Your combination of meds, surgery, and RNS likely prevents this from happening. It sounds like your current neurologist has been doing all the right things. Best wishes!
Thank you Jared for your quick reply.
My epileptologist and I have discussed this as well and have come to the same conclusion. We are basically in management mode, my doc focusing on keeping seizures at bay and me focusing on improving quality of life.
I thank you for the link…will review this afternoon.
Looking forward to more great content in the future!