Epilepsy Talk

The Trouble with AEDs… 

February 19, 2023
4 Comments

At the very best, finding the right anti-epilepsy drug is a crap shoot. There’s always the hope that this one will do it.

Or maybe adjunct therapy will work. Or, sigh, the side-effects derail you and you’re on to the next.

Is asking for seizure control too much to ask?


The night fright of nocturnal seizures

September 6, 2022
15 Comments

I can remember trying to rip out my hair. The inside of my head was going at a million miles an hour.

Sure, I was lucky I didn’t pee in my bed or fall off it. And happily I didn’t bite my tongue. Or end up bruised and sore.

But I was exhausted. With a horrible headache.

Like many, it was hard to stay awake during the day. (Hey, I’d just been up all night. Afraid to go back to sleep.)

It was an endless cycle. I couldn’t sleep. I couldn’t stay awake.

The curse of nocturnal seizures.


More people are smoking marijuana than cigarettes!

September 3, 2022
20 Comments

Surprised?

With the legalization of smoking cannabis both for medical and recreational use, it’s clear marijuana’s time has come.

The jury is no longer out. States have been weighing in. And the answer has been a resounding : “Yes”.


Can you get seizures after vaping?

August 3, 2022
6 Comments

Reports of people who have seizures after vaping have raised serious questions about the safety of electronic cigarettes, which have grown in popularity in recent years.


Posted in Epilepsy, News
Tags: , ,

Dilantin – What People Are Saying…

May 4, 2022
7 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 some of their experiences. And some advice…


Dilantin – Hero or Horror?

May 1, 2022
28 Comments

Since it first came out, Dilantin has always had its fans and its detractors.

Who can forget Jack Nicholson’s out-of-control behavior as the “crazy” in Ken Kesey’s “One Flew Over the Cuckoo’s Nest”!


Don’t let a “distracted doctor” kill you!

April 7, 2022
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.


Doctors Distracted by Electronic Devices…

June 22, 2021
4 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.


Epilepsy and Birth Control

November 23, 2014
1 Comment

Figuring out birth control with epilepsy meds can be a challenge at best.

How will your AEDs affect your birth control? Will your birth control lessen the effectiveness of your meds?


BEWARE! AED Safety Risks Withheld

August 18, 2013
23 Comments

A study by Johns Hopkins researchers shows that a fifth of U.S. neurologists appear unaware of serious drug safety risks associated with various anti-epilepsy drugs, potentially jeopardizing the health of patients who could be just as effectively treated with safer alternative medications.

The findings suggest that the U.S. Food and Drug Administration needs a better way to communicate information to specialists about newly discovered safety risks, the researchers say, since the warnings are in many cases not getting through to doctors making important prescribing decisions.


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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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