The Brain Ablaze Epilepsy Podcast

In this episode, the host of our podcast, David Clifford, talks about Personal Independence. He describes how we can maintain it while also staying safe.

Though losing one’s driver’s license is frustrating, personal independence is just more than having the privilege to drive.

A level-four Epilepsy Center has all the things that people need to learn about what is causing their seizures. Within a level-four Epilepsy Center neurologists (or more precisely Epileptologists) work in teams to determine the best treatment for a patient. If you have tried more than two failed medications, it might be time to graduate to a level-four Epilepsy Center. Here is a great tool that you can use to determine which Epilepsy Centers are near you.

In this episode we referenced the following previous episodes:

• Sleep Til Brooklyn – All things sleep! How to create a bedroom of solitude and safety.
• Beating the Blame – Contains the scary shower story.

Did you find the information in this episode useful? We would love to hear your Epilepsy story. You can always reach out to us via email at [email protected] or on Twitter at @BrainAblaze.

See you next time!

The post 051: Personal Independence appeared first on Brain Ablaze.

In this episode, we describe Responsive Neurostimulation for Seizures (or RNS) and the RNS System created by NeuroPace Inc. Mike McKenna from NeuroPace Inc. generously comes on the show to describe his own experience with The RNS System.

Though RNS sounds a lot like VNS, the two technologies are quite different.

The NeuroPace Inc. website references the medical trial for the RNS System.

Long-term clinical results demonstrating that the RNS® System for refractory epilepsy significantly reduces seizure frequency in patients, with 1 in 3 people achieving 90% or greater reduction in seizure frequency at nine years.

28% of patients experience seizure freedom periods of greater than six months.

NeuroPace Inc. has a great tool to determine the nearest Epilepsy Center near you that has knowledge of their RNS System.

We want to thank Mike McKenna for coming on the show to talk about The RNS System from NeuroPace Inc. You can always reach out to him or the other patient educators at NeuroPace Inc.

Have you tried The RNS System? We would love to hear your story. You can always reach out to us via email at [email protected] or Twitter @BrainAblaze.

Thank you so much for listening! See you next time!

The post 050: RNS (featuring Michael McKenna) appeared first on Brain Ablaze.

This episode includes the basics of Epilepsy. Have you ever asked yourself, if I had the chance to give advice what would I say? In this episode, the host of our Epilepsy podcast, David Clifford, goes back in time to 1991 to give his former-self advice about Epilepsy and seizures.

You should know that it affects a little more than one percent of the population at any time. One out of twenty-six people will develop Epilepsy sometime in their lifetime, while one out of ten will have at least one seizure. In today’s terms, that means there are about 65M people with Epilepsy. Unfortunately, there is no global cure for Epilepsy. It is all about management.

This episode references the scars on our host’s tongue. We decided to not include it in our youtube video because … well, it is pretty nasty. If you really need to see it, you can click here on the image below.

Whether you are new to Epilepsy or you’re a seasoned seizure-veteran, we would love to hear your story. You can always reach out to us via email at [email protected] or on Twitter @BrainAblaze.

Thanks so much for listening! See you next time!

The post 049: Epilepsy for Beginners appeared first on Brain Ablaze.

The EEG (or Electroencephalography) has become the quintessential tool for Neurologists (or Epileptologists) to determine what is going on in our heads.

It measures the tiny electrical changes in our brain. Neurologists arrange the data in a montage so it can be inspected. A trained Neurologist can use the EEG data to determine the origination of our seizure and how it moves throughout our brain. Both are vitally important to determine the next steps in our medical treatment.

A stay at an Epilepsy Monitoring Unit can sound daunting. That’s why we wrote The Inpatient’s Definitive Guide to Epilepsy Monitoring Units.

Have you visited an Epilepsy Monitoring Unit? Most Epilepsy Centers have one. The National Association of Epilepsy Centers has a great tool to find the nearest Epilepsy Center to you.

Did your medical team find the origin of your seizures? Where was it?

We would love to hear your story! You can always reach out to us via email at [email protected] or through our Twitter community (@BrainAblaze).

Thank you spending your time with us!

The post 048: Jacked In appeared first on Brain Ablaze.

Have you ever thought about creating a fundraising event for your local Epilepsy Awareness charity? You should!

We invite Josh Green (Twitter @JoshGreen321) from Epilepsy Foundation Eastern Pennsylvania to tell us about their NOLA-Themed-Virtual-Gala on March 5-7, 2021. He also provides some handy tips so you can get your own virtual gala ready for Purple Day on March 26th. He shares his experience on his fundraising page for the Epilepsy Foundation of Eastern Pennsylvania

Have you performed fundraising before? Were Josh’s tips useful? We would love to hear your story. You can always reach out to us via email at [email protected] or on Twitter @BrainAbalze. Thank you so much for listening! See you next time!

Do you perform fundraising for Epilepsy Awareness charities or research? Was it as difficult as some people suggest? We would love to hear your story. You can always reach out to us via email at [email protected] or on Twitter @BrainAblaze.

Thank you for spending your time with us. See you next time!

The post 047: Fundraising (Featuring Josh Green) appeared first on Brain Ablaze.

In this episode, we celebrate some stories of Presidents whose lives were entangled with seizures or Epilepsy.

Were you motivated by the stories of the Presidents described in this episode? We would love to hear any comments you have. You can always reach out to us via email at [email protected] or via Twitter @BrainAblaze.

Thank you so much for listening!

See you next time

Here is the link to the YouTube edition of this episode. Please be sure to subscribe to our channel!

The post 046: Hail to the Chief appeared first on Brain Ablaze.

In this episode, Christin Godale comes on to the show to provide advice to families that include students looking to transition from high school to University.

The transition from high school to university is hard on anyone that tries it. When one add Epilepsy or seizures the transition becomes even more complicated.

Christin Godale has lived with epilepsy her entire life. She received her Bachelor of Science degree in Neuroscience and Biology from Baldwin Wallace University and interned at NASA Glenn Research Center. Currently, Christin is a Ph.D. Candidate in Neuroscience at the University of Cincinnati and Cincinnati Children’s Hospital Medical Center, where she studies the development of epilepsy. Mrs. Godale invites you to contact her with any questions you have via email at [email protected] or on Twitter @christingodale.

Did you go to college or university? How was the transition for you? We would love to hear your story. You can always reach out to us via email at [email protected] or via Twitter @BrainAblaze.

Thank you so much for being a part of our show!

See you next time!

The post 045: Prosper University (featuring Christin Godale) appeared first on Brain Ablaze.

Have you ever wondered how anti-seizure medications are discovered? In this episode, we walk you through the different generations of anti-seizure medications and tell the stories behind some of the most notable meds.

We really appreciate you listening to our show. Without you, we could raise Epilepsy awareness.

The National Institute of Neurological Disorders and Stroke (or NINDS) is part of the National Institute of Health (or NIH). The mission of NINDS is “to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.”

Did we cover the medications you take? We would love to hear your story. You can always reach out to us via email at [email protected] or via Twitter @BrainAblaze.

Thank you again!

See you next time!

The post 044: Our Generations appeared first on Brain Ablaze.

In our Triggers episode last season, we covered many common Triggers that affect our Epilepsy community. In this episode, we provide tools anyone can use to discover which Triggers affect their seizures.

It often feels that there are thousands of possible Triggers for our seizures. Discovering which Triggers affect your seizures gives you freedom. Rather than worrying about all of the possibilities, one can focus on their Triggers.

We suggest that every seizure journal contain AT LEAST the following:

• The date/time and duration of each seizure.
• If meds were correctly taken that day
• If a medication prescription had changed.
• Any side-effects.
• Mood (on a ten scale).
• Stress Level (on a ten scale)
• The time I went to bed and woke up.
• The time I ate my meals and if I ate anything out of the ordinary.
• Start and end dates of any illnesses.
• Start and end of each menstrual cycle.

Did you discover your own triggers? We would love to hear your story. You can always reach us via email at [email protected] or on Twitter at @BrainAblaze.

We know your time is valuable. We really appreciate you spending it with us listening to our show. Thank you so much for your support.

The post 043: Trigger Discovery appeared first on Brain Ablaze.

In this episode, we argue that Caretakers (or carers) deserve the right to be full-fledged members in our Epilepsy Community.

While we can never truly describe what a seizure feels like to a person who has never had one, carers (and especially Carers of small children) can tell anyone what it feels like to live with Epilepsy. It is time that we gave them the respect they deserve.

We really appreciate Mary Overfield and Angelina Simms for their help with this episode. The quotes and pictures they provided for this post and our youtube video really hammers home just how difficult the life of a carer truly is.

I am often asked what it is like to have a child with intractable epilepsy. I compare it to having a newborn 24 / 7 for our daughter’s whole life. She needs care around the clock, to be in our line of vision at all times & we have to be on constant seizure alert. It can be exhausting, isolating, and emotionally draining.

— Mary Overfield

Was this episode helpful? Are you a carer for someone with Epilepsy? Are you a person with Epilepsy that has a carer? We would love to hear your story. You can always reach us via email at [email protected] or on Twitter at @BrainAblaze.

We know your time is valuable. We really appreciate you spending it with us listening to our show. Thank you so much for your support.

The post 042: We Care appeared first on Brain Ablaze.