Epilepsy Talk

Epileptic Synesthesia: What Is It?

January 17, 2021
16 Comments

A friend of mine with TLE, told me he had synesthesia and I didn’t have a clue what he was talking about. And so, I set to find out exactly what this mysterious sounding condition was…

First of all, Epileptic Synesthesia is pretty rare.

It occurs in 4% of temporal lobe seizures and is theoretically caused by the actual electric discharge or abnormal stimulation of the brain in a seizure.

Sight, sound, touch, taste (and, much less often, your sense of smell) sensations can occur simultaneously and also involve involuntary movement.

An example is the sensation of flashing lights, a taste, a feeling of heat rising, and a high-pitched whine.

Here are three other (rather alarming) examples:


2021 Top-Ranked Pediatric Hospitals for Neurology & Neurosurgery

January 13, 2021
1 Comment

The U.S. News & World Report’s annual survey of hospitals is considered the pre-eminent source for excellence.

For the 2021 evaluations, fifty pediatric centers were ranked for their ability to deal with serious neurological problems. Included were epilepsy, head trauma and brain tumors.


2021 Top-Rated Hospitals for Neurology & Neurosurgery

January 7, 2021
1 Comment

Every year, patients and potential patients alike, look forward to the U.S. News & World Report’s list of top-ranking hospitals.

Attached is a link to their most current list for Neurology and Neurosurgery.


Forecasts of Epilepsy Seizures Could Become a Reality

December 19, 2020
27 Comments

For people with epilepsy, not knowing when their next seizure will hit can be psychologically debilitating. Clinicians have no way of telling people with epilepsy whether a seizure will likely happen five minutes from now, five weeks from now or five months from now, says Vikram Rao, a neurologist at the University of California, San Francisco. “That leaves people in a state of looming uncertainty.”


Doctors Distracted by Electronic Devices…

December 15, 2020
5 Comments

Do you know what happens during surgery? Cut…open…correct…sew. Maybe some background music. Hip if the doctor likes that. Or classical.

Well, not exactly.

You might be surprised. Or horrified to learn the truth.

How about your technician who’s running the bypass machine texting during the procedure…

Or the nurse checking airfares…

And your neurosurgeon chatting away on a personal phone call?


Seizures won’t wait — even during COVID-19

November 20, 2020
12 Comments

COVID-19 seems to be knocking on everybody’s door. Along with the peril and the terror.

And the possibility of seeing your doctor during these dangerous times seems risky, at best.

So, you can’t see the doctor and they can’t see you.

Except in a hospital setting, critical care or a clinic.

That could means more exposure. More jeopardy. Is it really worth the exposure?


Who’s at Fault?

October 26, 2020
18 Comments

Instead of humane and compassionate treatment, doctors, hospitals and the legal system are treating epilepsy patients with little or no regard for their condition.

Here are some chilling examples:


Gaslighting — What to Do When It Happens To You

October 15, 2020
41 Comments

Is your doctor making you feel crazy? Like it’s all in your head? Could you be a hypochondriac?

You must be imagining your symptoms. Of maybe you’re just in a panic.

“Go home and take two Advil. Or maybe two Xanax. You’ll feel fine when this blows over. I assure you.”

Maybe you should have gone to Google first.


Hope for Drug Resistant Epilepsy

October 6, 2020
17 Comments

Drug-resistant epilepsy with uncontrolled severe seizures — despite state-of-the-art medical treatment — continues to be a major problem for up to 30% of patients with epilepsy.

Although drug resistance may fluctuate in the course of treatment, for most patients, drug resistance seems to be continuous.

Unfortunately, traditional antiepileptic drugs (AEDs) don’t seem to prevent or reverse drug resistance in most patients.

However, some new add-on AED therapies have shown as much as 50% in seizure reduction.

This research concerns the structural brain lesions that have been associated with drug resistance in epilepsy.


An Earbud to Predict Seizures?

October 4, 2020
32 Comments

Imagine a tiny, unobtrusive brain monitor — like an earbud or a hearing aid — that could read brainwaves through the ear.

Amazing as it sounds, this tiny device could help predict seizures and track daily seizures in people with uncontrolled epilepsy, according to a small pilot study.

Engineers at Imperial College in London have developed exactly that.

An EEG device that can be worn inside the ear, like a hearing aid.


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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