Epilepsy Talk

Confessions of 30 Years with Epilepsy…

September 26, 2019
41 Comments

When I was first diagnosed as a teen, no one knew what to do with me.

My parents refused to use the “E” word. People treated me like I was some kind of pariah (which didn’t make me feel warm and fuzzy either).

Guys never called back for a second date.

The Dilantin made me feel like a zombie…I even went into a coma once.


How Are Your Meds Affecting You?

March 14, 2019
39 Comments

They’re necessary, but not necessarily nice. And every med has its own side-effects. Just as different people experience different difficulties.

Here‘s the low-down on the possible side-effects of your drugs and others. 

Some might sound painfully familiar…


Stevens-Johnson Syndrome — a danger for those on Dilantin or Lamictal

November 19, 2018
2 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.

According to the Mayo Clinic: Stevens-Johnson Syndrome is a rare, serious condition, thought to be caused by a disorder of your immune system.


Dilantin — What People Are Saying…

November 13, 2018
23 Comments

When I was first diagnosed with epilepsy back in 1969, the availability of AEDs was limited.

Phenobarbital or Dilantin.

Pick your poison.

I chose Dilantin. It was not a pretty picture.


Dilantin — Hero or Horror?

November 12, 2018
15 Comments

Dilantin (Phenytoin) can be considered the grandfather of all epilepsy medications.

Although it was invented in 1908 as a chemical that could prevent convulsions during electroshock treatment, its popularity grew quickly, and as early as 1940, it was hailed as initiating a whole new epoch of anti-epilepsy drugs, motivating researchers to seek even more effective medications and pharmaceutical companies set up aggressive screening programs.

In the next two decades, a dozen new anticonvulsants were introduced into clinical therapy!

Today, Dilantin remains one of the most widely used drugs in the world.


Epilepsy Drug Side-Effects

September 23, 2018
98 Comments

They’re necessary, but not necessarily nice.

And every med has its own side-effects.

Just as different people experience different difficulties.

But here‘s the low-down on the possible side-effects.

I hope you don’t have to suffer any of them. (Or as few as possible.)


Anti-Epilepsy Drugs and Osteoporosis – It’s Not Just a Women’s Disease

May 6, 2018
48 Comments

A research team consisting of epilepsy specialists and epidemiologists (persons who study the causes and control of diseases) reports on a study that answered an important but simple question:

Do anti-seizure drugs cause reductions in bone density?

Why ask this question?


Calcium — Friend or Foe?

June 16, 2013
45 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 antiepilepsy drugs — especially Dilantin. Even if your doc “forgot” to tell you!

Speaking of which, a survey found that fewer than one-third of neurologists routinely evaluated AED patients for bone disease. And fewer than 10% prescribed Calcium and Vitamin D.


    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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