Nearly 3 million Americans have epilepsy. It’s as common as breast cancer, and can be as dangerous. But those with the disease say research is underfunded and epilepsy doesn’t get the attention it deserves. We talk with participants in a major conference in San Francisco on emerging treatments for epilepsy.

Guests:
Daniel Lowenstein, director of the Epilepsy Center and professor and vice chairman in the Department of Neurology at UCSF
Susan Axelrod, co-founder and chair of Citizens United for Research in Epilepsy and mother of a daughter with severe epilepsy
Lisa Lindahl, member of the Business Advisory Board of the Epilepsy Therapy Project and a lifelong sufferer of epilepsy
Warren Lammert, chairman and co-founder of the Epilepsy Therapy Project

  • Chris

    Is there any new research on Temporal Lobe Epilepsy (trances, deja vu, etc)? Any connections with hormones?

  • Kirsten

    I feel like it’s important to note that some epileptics lead pretty normal lives, albeit with the occasional seizure. Can you talk about the different types of seizures that people have?

    • Enussenbaum

      Many people with epilepsy do indeed lead normal, productive, even great lives. Lisa Lindahl, who was on the show today, invented the sports bra and sold her invention to Playtex in the late 1970’s.

      There are  a lot of different types of seizures — I have seen figures that say there are up to 30 different classifications. It’s a lot more than Grand and Petit Mal, or what are now called Tonic Clonic and Absence. My son, for example, has myoclonic seizures, where he bobs his head. Sometimes he snaps at the waist. Other people simply drop to the ground in what is known, unsurprisingly, as a drop seizure. Here is a good discussion of seizure types from Epilepsy.com
      http://www.epilepsy.com/epilepsy/epilepsy_lgs/seizure_types
      Evelyn Nussenbaum
      CURE Board Member

  • bryanfarley

    thank you Lisa

  • Kaiser mom of 1

    I have had grand mal epilepsy since I was a teen. I am considered a high-functioning epileptic. I’ve had the good fortune of being well controlled for decades. The issue I have with neurologists that advocate removal of medication once seizure -free is deemed as stable, thereby affecting the entire quality of life. I am thankful of living on one of the coasts where epilepsy research and medical support is far better than anywhere else I have lived.  How it has affected my life… drastically, in some ways, and in other it has given me a back-bone and brazenness that I would not have gotten otherwise. But, as I said, I am one of the lucky ones.

  • bethpikegirl

    Please talk about the high expense of the epilepsy medication, especially since it is close to impossible for epileptics to get coverage!

    • Casas5150

      Thank you for bringing that up, there is numerous coverage for HIV/aids patients, no disrespect…but no research, no medical help, no real education….why aren’t all disabilities treated the same way?

    • Mscat36

      I totally agree with you on the high expense and getting insurance coverage makes it even worse when they don’t cover pre-existing conditions.

  • My neurologist recommended regular exercise and a healthy diet (sugar-free, processed-foods-free, etc.) to me while I was in college 40 years ago. Both have helped me to keep my medication dosage reduced (something he originally fought back then), which has reduced the drowsiness and other side effects of the meds, which–of necessity–have many broad effects on my brain functions.

    Prescriptions for ADD (which I also have) and Alzheimer’s Disease have also helped restore some of the memory loss and other mental deficits that the seizures and the meds have wrought on my brain.

  • Aeron

    I live in Bay Area, my sister has epilepsy. She lives in India, and went through a heart catherization  to get her heart evaluation at age 18 months, she is now in her 30s. That surgery made her paralyzed on the right side, and later she developed severe epilepsy, she gets at least one seizure everyday. Is there a way she can get evaluated by one of you, and would it make sense to try a drug trial. She has been on Tegretol etc…

  • Xmas90

    Is there research on seizures/epilespy and autism?

  • MissBird

    I have lived with epilepsy due to a brain bleed for the last 25 years. It’s been managed with low-dose medication and healthy habits. Relationships with others are always affected. I don’t know of much written information about that side of it– I would be interested to know of others’ experiences with epilepsy/close relationships.

  • Marshallgunn

    Thank you for your program on epilepsy.  I am an anesthesiologist with a son who began having noctural seizures at age 14.  His pattern changed in his mid twenties when he began have seizures during the day.  We have been to multiple medical centers, he has tried most medicines and is in the 1/3 who continue to have uncontrolled seizures.  
    My other son is a TCM practitioner and we have found that acupuncture points at the start of a seizure usually will abort it and certainly shorten it.  Thanks again for the info. We will now work on lowering the carbohydrates in his diet to see if it will help further.

  • Jane-sartori

    May, 1965 I got both the red measles and encephalitis.  This caused me to have seizures just about all my life.  Just over 10 months ago I had scar tissue removed from my brain which is what was causing me to have seizures.  Since then I have had nil seizures and go back to see my neurosurgeon in May.  I’m hoping to be able to get my driver’s licence for once.

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