The Perils of Discontinuing Your Meds

Epilepsy Talk

One of the most common questions is “when can I stop taking my meds?”

Especially for those whose seizures have been under good control.

It makes sense. Because if you’re doing well, you start to wonder “why do I need these meds anymore”?

This review is organized around four issues:

Does the duration of seizure-freedom influence the risk of recurrence?

Should the epilepsy syndrome influence the decision to stop or continue AEDs?

If daily AEDs are stopped, could intractable epilepsy ensue?

And what’s the risk that someone discontinuing AEDs will die during a recurrence?

Some of the reasons for stopping daily meds include concerns about side-effects…a feeling of well-being…relief from the chore of remembering daily medication…and freedom from the staggering financial burdens.

Most important of all is, an improved quality of life.

Others are seizure-free but choose to continue medication.

They’re happy with stability, concerned about the impact of another…

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2019 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

Epilepsy Talk

Below is a compilation by website forum members who have had positive personal experiences with docs over the years.

This list is based on recommendations and, of course, is purely subjective. But it might be helpful for anyone looking for a good Neurologist…Epileptologist…Neurosurgeon…or Pediatric Doctor.

NOTE: The National Association of Epilepsy Centers (NAEC) provides a directory of specialized epilepsy centers in the U.S. along with other useful information about epilepsy. http://www.naec-epilepsy.org/

NEUROLOGISTS/EPILEPTOLOGISTS

ALABAMA

Dr. Jennifer DeWolfe, University of Alabama, Birmingham, AL

Dr. Nasrollah Eslami, Bessemer, AL

Dr. Edward Faught, University of Alabama, Birmingham, AL

Dr. Robert Knowlton, University of Alabama, Birmingham, AL

Dr. A. Lebron Paige, University of Alabama, Birmingham, AL

Dr. Sandipan Pati, University of Alabama, Birmingham, AL

Dr. Potts, Tuscaloosa, AL

ALASKA

Dr. M. Hillstrand. A.N.P., Anchorage, AK

ARIZONA

Dr. Louann Carnahan at Tucson Center for Neuroscience, Tucson, AZ

Dr. Joseph Drazkowski, Mayo Clinic, Phoenix, AZ

Dr. Matthew Hoerth, Mayo Clinic…

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Epilepsy and Education…Coming Out Of The Shadows

Epilepsy Talk

It starts in the playground.  A kid has a seizure and everybody freaks out.  Nobody knows what to do.

Maybe not even the school nurse.  Even though epilepsy first aid is a cinch.

It’s frightening to see a child seize and then, based on that fright, they think:

“I can’t deal with this.”

Some people still think epilepsy is contagious!

But kids are very impressionable, and if we show them there’s no reason to treat someone differently because of a condition that is uncontrolled, it’s very helpful.

They want to understand.  They want to help.  But first we must show them how.

Happily, most parents are vigilant, starting support groups, arranging fund-raising functions, bringing family, friends, and neighbors into the fray.

How else will their child lead close to a “normal” life?

Yet, sadly enough, at a recent high school health fair I attended, not one person knew what to do…

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Updated — 40+ Different Kinds of Seizures

Epilepsy Talk

When I was first diagnosed with epilepsy, there were two kinds of epilepsy. Grand Mal and Petit Mal. (Can you guess how old I am?)

Now, things are much more different and difficult. No more cut and dried.

So, please, if you have any additions, subtractions or corrections, feel free to chime in.

Because I don’t pretend to be an expert. In fact, this has certainly been a learning experience, from start to finish.

Here, to the best of my knowledge, are the 40+ different types of epilepsy.

1. Absence Seizure (“Petit Mal”)

Absence seizures account for 2-4 percent of epilepsy. They are characterized by brief episodes of staring, usually lasting only 2-10 seconds and may happen repeatedly during the day. There is no warning before a seizure and the person is completely alert afterwards, with no memory of it. Because they are so mild, you might not even realize…

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USA TODAY: Alcoholism: My ‘bottom’ was being drunk on TV

http://www.usatoday.com/story/opinion/2018/11/16/alcoholism-deaths-liver-cirrhosis-stigma-opioid-addiction-column/1873741002/

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Celebrities Supporting Epilepsy

Epilepsy Talk

There are some people who don’t turn a deaf ear to what everyone else doesn’t want to hear. The phobic fear of epilepsy.

For example, Greg Grunberg is a true “Hero.” Not just as a TV star but also as the spokesperson for the Epilepsy Foundation of America. He is joined in his support by:

Harrison Ford of Star Wars fame, auctioned off his “The Force Awakens” signed one-of-a-kind leather jacket for $191,000 to benefit NYU’s non-profit Langone Medical Center in light of his daughter’s successful treatment. He is quoted as saying: “This is a cause near and dear to me.”

Courteney Cox — who achieved fame for her role as Monica Geller on the NBC sitcom “Friends”.

Leonardo DiCaprio — internationally famous for his performance in “Titanic”, “Gangs of New York”, and “The Aviator,” to name a few.

Jennifer Garner — famous for her T.V. role as CIA agent…

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