Epilepsy: Are there options when medicine doesn’t work?

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.

My hope is that, in reading this article, you’ll never need the information I will share. However,  roughly 3 million people (around 1%) of the adult population in the US will become affected by epilepsy, and I’m on a mission to raise awareness for the effectiveness of epilepsy surgery as a  treatment option. 

I’m bringing you a tough topic today, and in sharing it, I’m getting vulnerable with a difficult part of my past. In everything I publish on this blog, I try to provide any guidance possible through my experience, and today is no exception. Today, we’re talking all about epilepsy treatment.  

My story, like so many people with epilepsy, was dramatic and very scary. Having my first seizure was one of the scariest things I have ever been through. The feeling is almost indescribable. I woke up in the middle of the night seizing uncontrollably. I didn’t know what was happening, and I kept asking my husband to please help me; my kids had to watch me as I  seized and the ambulance arrived. I don’t think that scene will ever leave their minds. In May 2017, I was diagnosed with epilepsy. Epilepsy is defined as having 2 or more unprovoked seizures. 

After my diagnosis, my journey was just beginning. Over the next year, I had uncontrollable seizures every single day, sometimes 15-20 per day. My quality of life rapidly decreased, and I  spent most days sleeping. I was no longer able to drive, and I couldn’t work. Even simple tasks like cooking became impossible as I would forget pots on the stove. Normal life seemed far away, and feeling unable to be present for my family felt deeply distressing. 

Once I was diagnosed, the doctor recommended medications. The trial and error process was frustrating at best and horrifying at worst.

One of the anti-epileptic drugs I tried gave me bad side effects, in addition to not controlling my symptoms. After coming off this medication, I tried another anti-epileptic drug which also had side effects and still did not control the seizures. Each time I tried a new medication, found it ineffective, and had to come off it, my family patiently walked through the process with me. It was an incredibly difficult time.  

Eventually, I was able to get my epilepsy under control, but for many, this is not the case. This is why I am passionate about raising awareness for surgery as an option for epilepsy treatment.  Like me, many with epilepsy try medications that don’t work and cause more harmful side effects than good ones. Surgery can provide hope for those who fear they have none. 

Untreated epilepsy is a huge problem

Untreated epilepsy is a huge problem. Though the illness is so debilitating, there are still many people with epilepsy who don’t receive treatment, or their treatment is not effective. When seizures go unchecked, there are risks from injury due to falls. Epilepsy can lead to mood disorders like anxiety and depression, and it can harm memory and concentration. There is also the possibility of SUDEP or Sudden Unexplained Death in Epilepsy.  

If things are so bad, shouldn’t there be more options for treatment? What can be done?  Because I felt so stuck in my own treatment plan, I was excited to read about the work of neurosurgeon, Dr. Derek Southwell, MD, PhD , Surgical Director, Duke Comprehensive Epilepsy Center, who is one of the doctors leading the charge in surgery as a treatment for drug-resistant epilepsy. 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. 

Though medication can stop seizures in about 60-70% of patients, this can come at a steep price of awful side effects, like the ones I experienced. My experience in trying multiple medications is also common – and doctors believe that once a patient has tried two or three medications, it’s unlikely that additional ones will prove effective.  

30% of epilepsy patients will continue to have seizures even with the use of medication

According to studies, about 30% of epilepsy patients will continue to have seizures even with the use of medication. It’s these patients that Dr. Southwell and others believe should be evaluated for surgery. Why isn’t this treatment more widely used? Dr.  Southwell believes that it’s a lack of awareness of the surgery, both among patients and providers, and how it can help. 

This is the heart of why I’m raising knowledge of this treatment and why I decided to work with Med-IQ and Duke Health to help generate awareness around epilepsy and current treatments,  including surgery. Med-IQ is an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, and other healthcare professionals. 

From my experience, and of those I love who have also been diagnosed with epilepsy, any hope is powerful. According to Dr. Southwell’s experience, fewer than 10% of patients with uncontrolled epilepsy are referred for a surgical consultation. Many more can potentially be helped!  

Even if medication has been helpful, but the side effects have been harmful, surgery can still be a good option. Medications may not be totally eliminated, but they can often be reduced, and the side effects reduced in turn. 

If you think that epilepsy surgery could be a good option for you or someone you love, please reach out to your doctor. Have important conversations about how surgery could affect your body. Though there isn’t an age that’s “too old” to consider surgery, the longer you’ve been suffering from poorly controlled epilepsy, the more difficult recovery can be.  

Through my own journey with epilepsy, I’ve learned that my body is strong and that I am even stronger. Sometimes medical professionals have the best intentions, but they may have areas where they’re unfamiliar with current technology and treatments. I have become empowered to use my voice to ask the questions that will arrive at the answers I need. I want you as my community to feel the same empowerment! Please do your research and talk to your doctor,  and pass this information on to people you love that may be struggling with epilepsy. Health and healing to all of you!  

Take the Epilepsy Treatment Survery

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. 

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. 

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.

29 comments on “Epilepsy: Are there options when medicine doesn’t work?

  1. I didn’t realize that surgery could help control epilepsy. I hope that this post helps a lot of people get the help they deserve!

  2. Epilepsy has got to be so scary. My friend’s niece is really struggling with seizures and they can’t seem to find the right treatment for her.

  3. This is so scary to have, I’ve known a few people who have it and I’ve seen how they suffered from it. Thanks for sharing knowledge about it.

  4. Thank you for sharing your experience and creating awareness about epilepsy. You are doing well and we appreciate you and your beautiful family

  5. I know epilepsy is a huge health problem that can cause so many life problems. It’s great to know that science goes on to discover new ways to treat it!

  6. Epilepsy is something I’ve encountered in the past with someone at my workplace. It’s good to know there is a treatment that may help.

  7. It’s awesome that you are sharing your trial and errors so people know to keep trying. You were lucky to have family support too!!

  8. This is really interesting to read, I have to admit I don’t know a huge amount about epilepsy, but I know it can be absolutely devastating when it can’t be controlled.

  9. I’m glad that I don’t need the information too. I just want to be knowledgeable. Thanks for sharing!

  10. I’m aware of some of these facts. Thanks for sharing knowledge. It’s so helpful for those who have a love one that suffers from the illness.

  11. Thanks for sharing these insights about epilepsy. I hope people weigh as many options available to them. Thanks for sharing your experience

  12. Thank you for sharing your journey, obviously a very trying one, as well as potential options. I hope I never need it but knowledge is always best. I wish you continued healing on your journey.

  13. I have a cousin that doesn’t respond to the medicine the doctor’s give him and he does go for a more natural approach

  14. It’s such a huge problem for those families that have someone with this disease. It’s great that there are always another option to fin the perfect cure for everyone.

  15. Such an important topic and I am really glad to know all from this blog. thanks for sharing it

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