Epilepsy Talk

Where’s the funding? Epilepsy as an orphan.

August 2, 2022
5 Comments

Here are the facts, unhappy though they may be…

Epilepsy is the 4th most common neurological problem – only migraine, stroke, and Alzheimer’s disease occurs more frequently.

Its prevalence is greater than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson’s disease combined.

As many people die from epilepsy as from breast cancer.

There are 150,000 new cases of epilepsy diagnosed each year, and a total of more than 3.4 million Americans are affected by it.

Yet, public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis).


Why won’t you play with me?

July 28, 2022
5 Comments

Once upon a time there was this girl named Ellen.

She had epilepsy and she hated the world.

So the world hated her back.


Stevens-Johnson Syndrome — A Danger For Those On Dilantin Or Lamictal

July 18, 2022
7 Comments

This article is not for those with a weak stomach. Because Stevens-Johnson Syndrome is an ugly and sometimes deadly disease.

But if you are on Dilantin or Lamictal, I urge you to read this information.


What does the new abortion ban mean to those who take epilepsy drugs?

July 14, 2022
16 Comments

A lot more than you may think.

It could result in catastrophic life-threatening illness for women of childbearing age.


Bullied because of epilepsy…

July 14, 2022
20 Comments

Like lions, they smell the difference…

Like hawks, they sweep down on you…

And like hyenas, they laugh and eat your heart out.


TNS vs. VNS — NO SURGERY!

July 11, 2022
12 Comments

The first Vagus Nerve Stimulator (VNS) was implanted in 1988, as a therapeutic option for medically intractable epilepsy, when elective epilepsy surgery was not appropriate.

As the number of implanted vagus nerve stimulators grows, so does the need to remove or revise the devices.

Which is a little tricky, because of the spiral stimulating electrodes, wrapped around the nerve.

Especially if the VNS treatment has proven ineffective.

And of course, what goes in, must come out.

Anyway you look at it, there’s more surgery involved.


Natural herbal remedies for epilepsy

July 7, 2022
13 Comments

Long before Dilantin and Phenobarbital, there was epilepsy. And herbal remedies.

Of course, these herbal epilepsy remedies are NOT substitutes to anti-seizure medications, but are more like a supplementary support. Most of them work by preventing a seizure and other symptoms of epilepsy.

(NYU Langone Medical Center estimates that 20 percent of people taking prescription drugs also use herbs.)

Some may sound weird and others familiar. But hey, how can you argue with success?


Calcium – Friend or Foe?

July 1, 2022
14 Comments

After talking to a famous epileptologist, I learned that calcium is really a two-edged sword. Which surprised (and scared) me.

I’ve always read that calcium was imperative if you were taking anti-epilepsy drugs — especially Dilantin. Even if your doc “forgot” to tell you!


MSG: Dangerous or Deadly?

June 26, 2022
1 Comment

MSG can be responsible for long term neurological damage.

It’s been linked to diabetes, stroke, epilepsy, multiple sclerosis, stomach disorders, fatigue, depression, headaches and migraines, grand mal seizures, irregular or rapid heartbeat, nausea and vomiting, numbness in the fingertips, autism, ADHD, asthma-like symptoms, fibromyalgia type pain, disorientation and confusion, and degenerative disorders such as Parkinson’s and Alzheimer’s.


Hooray for Forums! 

June 5, 2022
10 Comments

I never met anyone with epilepsy until I was 29. And that was a best friend of my husband’s. (Which may explain why my husband didn’t freak out when I had a seizure on our first date!)

That was it. Beginning and end…


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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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