I was compensated by Med-IQ in collaboration with Duke Health to write about the risks of uncontrolled epilepsy and surgical treatment for epilepsy. All opinions are my own.
I spend most of my time writing about living your best life.
- I spend time in front of the camera talking about living your best life.
- I spend time publishing a magazine about living your best life.
- I didn’t always live my best life.
As a matter of fact, when I was much younger, I actually felt like I had to give up doing all of the things that I wanted to.
After spending years not understanding what was wrong, a good friend (who just happened to be a doctor) got me an appointment at Lahey Clinic in Boston to find out EXACTLY what my issues were. I would have sensory oddities (the only way that I could put it). I’d feel like someone plugged me in to an electric socket and my peripheral vision would be limited. There were times that unexpected feelings would well up and I’d get this feeling in the pit of my stomach and cry, but EVERY time It happened I would either rock back and forth or pick at my leg with my fingernails. It was so odd.
I was diagnosed with a seizure disorder
That was a good thing and a bad thing.
Good – Now I had a name for what was going on with me and there were medications that I could take. But, I learned quickly that not all medications work for everyone.
Bad – I was an actress at the time and my fear of having a seizure on stage consumed me. I had gone from dance troupe to theater (yes, I even performed on Broadway in a show) and now because of the fear of having a seizure, my career was over with.
If I knew then what I know now
After many years of taking meds, experimenting with what worked and what didn’t, then having to go OFF of them because of pregnancy issues, etc. the cycle got to me. At the time I felt very alone. I had no clue that epilepsy affects about 1% of the US population (or roughly 3 million people) and is defined as having 2 or more unprovoked seizures. I bet you that I knew plenty of others who had been in hiding.
I gave up my career because my I knew the risks of untreated epilepsy can range in severity from physical injuries due to falls, to mood disorders like depression, to trouble with memory, to SUDEP, which stands for Sudden Unexplained Death in Epilepsy. I was scared. It’s odd, but I was even MORE afraid of embarrassing myself on stage than anything else.
I learned that once a patient has a diagnosis of epilepsy and has attempted more than 2 medications and still experiences seizures, their doctor should refer the patient to an epilepsy center, where advanced treatments like surgery may be applied to safely reduce or even stop seizures. I was lucky enough to have gone to a specialist right off the bat, but the process of finding what worked and what didn’t took me a while. For approximately 60% to 70% of patients medications will help, for others, there is an alternative. That’s why I am I am excited to be working with Med-IQ and Duke Health to help generate awareness around epilepsy and current treatments, including surgery.
As a Level 4 Epilepsy Center, Duke Health is recognized by the National Association of Epilepsy Centers for providing the highest level of diagnosis, treatment, and surgical treatment options for patients with epilepsy. Their goal is to maximize quality of life and seizure control for individuals living with epilepsy.
In addition, Med-IQ is an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, and other healthcare professionals to help those like myself manage our epilepsy.
Roughly 30% of epilepsy patients have ongoing seizures
Despite the use of medications; some patients should be evaluated for surgical treatment. Had I known that years ago, my career may have been very different.
Why am I finally telling you all of this all these years later?
Because Med-IQ and Duke Health are conducting an anonymous survey and would appreciate your input. The survey will take less than 10 minutes to complete. Survey responses are shared only in aggregate. Your responses to these survey questions will provide Med-IQ and Duke Health with important information about your experience or your loved one’s experience with epilepsy treatment, which will help us develop future educational initiatives. Once you’ve completed the survey, you will have the option of providing your email address to be entered into a drawing administered by SOMA Strategies to win 1 of 3 $100 VISA gift cards. If you choose to enter, your email address will be used to randomly draw the winners and notify you of your prize if you win.
- To learn more & take the survey visit: https://survey.alchemer.com/s3/6404586/Zipporah-Sandler
Links to external sites are provided as a convenience and for informational purposes only. They are not intended and should not be construed as legal or medical advice, nor are they endorsements of any organization. Med-IQ bears no responsibility for the accuracy, legality, or content of any external site. Contact the external site for answers to questions regarding its content.
This post is not intended to be a replacement for medical advice. The purpose of this post is to bring awareness to epilepsy and provide resources for further discussion. If you think you might have epilepsy, see your healthcare provider.