Epilepsy Talk

Confessions of 30 years with epilepsy…

October 27, 2017
35 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).


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

October 22, 2017
32 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?


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

March 10, 2017
26 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.


How are your meds affecting you?

January 24, 2015
62 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…


Epilepsy Drug Side-Effects

October 27, 2013
51 Comments

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.)


Dilantin – What People Are Saying…

June 24, 2013
148 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.

I was a walking zombie, constantly keeling over, and the final insult was when I went into a coma because of toxic blood levels. (No brain, no pain?)

But many have their own serious tales to tell. Here are their experiences. And some advice…


Calcium — Friend or Foe?

June 16, 2013
33 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.


Nocturnal Seizures — A Living Nightmare

March 18, 2013
16 Comments

When I was young, in the middle of the night, I’d have these horrible seizures.

I’d wake upright with the inside of my head spinning at about 100 miles per hour.

Clutching my head, I’d tear at my hair — anything to make it stop.

And eventually it did. And I slipped back to sleep. Terrified. Wondering when the next one would hit…


What’s YOUR Story?

January 15, 2013
37 Comments

When did you find out that you had epilepsy? How? What did you do after being diagnosed? How do you cope with it now?


Dilantin – Hero or Horror?

October 6, 2010
447 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.


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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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