The Isolation of Epilepsy

Epilepsy Talk

You’re reluctant to go out.  Because having a seizure can be so unpredictable and embarrassing.

You think: “What if I have a seizure?  What will people do?  What will they think of me?”

Those and many other self doubting questions run through your mind.

Even if you’ve only had a few seizures, there’s always the fear that silent (or not so silent) enemy may strike again.  So why chance it?

Social Stigma

The history of epilepsy is in a sense the history of stigma, which is deeply discrediting and can reduce a person with epilepsy from a whole and unique person to a tainted, discounted one.

Stigma carries a sense of shame associated with being “epileptic” and the fear of discrimination.

Fear, misunderstanding and the resulting social stigma surrounding epilepsy can result in social, and sometimes even legal discrimination.

All over the world, the social consequences of epilepsy are often…

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The Staggering Costs of Epilepsy

Epilepsy Talk

The fact that epilepsy is expensive is no secret. The meds, medical care, the doctors’ visits, hospital bills, health costs, the injuries and finally, the cost of self-esteem.

The statistics are sobering but true…

Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.

Total hospital cost was estimated at $532.4 million and expenditures for physician services were $76.7 million.

The average cost of an emergency department visit related to epilepsy is $707.

$33,006 is the average annual cost incurred by people with epilepsy visits due to uncontrolled seizures.

$1,800 is the average cost per day for U.S. hospital admission of a person with epilepsy/convulsions.

$317,000 is the average lifetime wages lost by men who continue to have seizures.

 $140,000 is the average lifetime wages lost by women who continue to have seizures.

More than 50% of people with seizures…

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Traumatic Brain Injury and Epilepsy

Epilepsy Talk

In a fraction of a second, head trauma can dramatically change a person’s life.

Head trauma caused by falls, physical abuse, violence, vehicle crashes and sporting accidents, not to mention modern warfare.

However, it’s important to realize that not all head injuries, even severe ones, result in seizures. And seizures frequently occur in people who haven’t experienced head trauma.

But close associations do exist between head trauma and seizures — as much as twelve times as opposed to someone without a head trauma.

The difficulty of a diagnosis is that epilepsy does not typically develop immediately after head trauma.

Studies suggest that approximately 6% of patients with epilepsy have TBI as the cause. It generally depends upon how severe the head trauma is.

Immediate or Mild Seizures:
They may develop immediately after the accident. The person is awake with eyes open. Symptoms can include confusion, disorientation, memory loss, headache, and…

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Auras without Seizures

Epilepsy Talk

Do any of these sensations sound familiar to you?

Suddenly you’re sweating, flushed, become pale or have goosebumps.

Your stomach feels queasy, like you’re going to puke.

There’s a foreboding or fear that something awful is about to happen.

You feel like a mess emotionally.

Maybe you feel an odd sensation, like a gentle breeze, buzzing or ringing sounds.

Voices that aren’t really there, a nasty taste in your mouth, weird smells, visual distortions.

You feel like you have zoom eyeballs.

Visual and spatial perceptions are off. (Sort of like “Alice in Wonderland” except this is NOT wonderful!)

There’s a distortion of time.

Maybe like an out-of-body experience.

Déjà vu. You’ve been here before.

You’re seeing people and places or experiencing events from the past. Yet, new places and things seem familiar – as if they’ve happened before.

Or maybe it’s the other way around.

You’re uncomfortable with your surroundings and…

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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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