Feeling lonely with epilepsy is not unusual. But with the RNS System, one Connecticut native found the platform’s collected data helped her feel connected again.
Quality of Life and Epilepsy: Why Setting Goals Helps With New Therapy
June 29, 2022Reading Time: 5 minutes
- When medications aren’t enough, surgery and neurostimulation devices can help treat epilepsy.
- Treatment for drug-resistant epilepsy may offer complete freedom from seizures; more often, it reduces their frequency or intensity.
- Before deciding on an epilepsy treatment, consider your goals in terms of overall health, relationships, work, school, or independence.
How seizures affect daily life when medications aren’t enough
For one-third of people diagnosed with epilepsy, medications alone aren’t enough to control seizures — even when two or more are tried. At that point, you’re encouraged to seek additional treatments for drug-resistant epilepsy.
Fortunately, multiple, approved options can still provide you with relief. These therapies range from removing the seizure source during brain surgery to delivering electrical stimulation from implantable devices. (Learn more about the differences among these neurostimulators.)
When weighing the next steps, it’s helpful to pause and consider a few key questions:
- What are your specific short- and long-term goals for additional therapy?
- Which potential improvements to your life are most important to you, and why?
- How can you measure success when it comes to epilepsy and quality of life?
Your answers to these questions can help you and your doctors choose the best option, especially if more than one treatment is appropriate.
You may decide like Drew that the potential side effects from a therapy don’t match your aspirations. Since Drew sought a career in sales, he wanted to avoid the potential hoarseness a device called vagus nerve stimulation (VNS) can cause.
Or, like Tyler, you may want the best chance at reducing the anti-seizure drugs you take because of how they make you feel. Medications affected her mood and made her too drowsy for college.
Once you’ve drawn up your priorities for a better quality of life with epilepsy, you can turn to them for motivation as you move forward. And they can offer a way to evaluate your progress down the line, which may involve therapy adjustments.
Setting goals for drug-resistant epilepsy treatment
At first, asking what additional epilepsy treatment should achieve seems like it has an obvious answer — complete seizure control. And indeed, that’s possible for some people.
The best chance for complete control comes from having surgery to remove brain tissue that causes seizures, when it can be safely done. Neurostimulation can also offer seizure freedom for some people. Among those with the RNS System, for example, 20% (1 in 5) were seizure free at their last checkup.1
More often, successful therapy doesn’t go quite that far. It might:
- Reduce the severity of seizures
- Limit their frequency
- Help you recover faster
- Improve your mood or memory
- Deliver some combination of the above
Such changes can still significantly influence your quality of life with epilepsy. They can lead to better overall health, greater independence and opportunities for work, education, and new relationships.
You can choose the goals you wish to pursue. Just make sure to raise them with your doctors.
A 2021 study in the journal Epilepsy and Behavior interviewed 400 people with epilepsy and showed how often that doesn’t happen. Half of respondents said they kept life goals to themselves, since they assumed doctors mainly care about seizure types and frequency. The doctors surveyed recognized this gap but didn’t necessarily act on it. If you take the lead, you’re likely to find a receptive audience.
Improving health and preventing sudden unexpected death in epilepsy (SUDEP)
Treatment goals frequently focus on well-being. After all, seizures can affect your mental health. They can interfere with sleep. And they can leave you feeling worn down. With the RNS System, people report improved mental and physical health, studies show.
Some types of seizures can lead to loss of consciousness and falls, leaving people in dangerous spots and causing injuries small and large.
“I dislocated my shoulder six times from falling,” says Ricky, who once required an eight-hour surgical repair. That ordeal motivated him to pursue the RNS System. Now, he still gets some seizures, but they’re much less intense and he doesn’t black out. “Just by it doing that, I’m very happy,” he says.
Another health goal spurred registered nurse Tammey to act: Preventing sudden unexpected death in epilepsy. SUDEP occurs once in every 1,000 cases of epilepsy for reasons we don’t fully understand. People with drug-resistant epilepsy seem to face the highest risk (up to 1 in 100), especially those like Tammey who experience convulsions.
“My biggest fear was that I would die from a seizure before I could see my beautiful daughter walk down the aisle,” says Tammey. With the RNS System, she was able to attend that wedding.
Controlling seizures to support relationships
When setting treatment goals, relationship milestones often come up — starting to date, moving in together or getting married, or trying to have a family.
While Erica and her husband wanted to have children, one of her medications posed a risk to pregnancy. She told her doctors she hoped to drop the drug, and with the RNS System she eventually did. She and her husband had a baby boy.
“Without the RNS System, I do not know how that could have been possible,” Erica says.
For Drew, successful seizure control with the RNS System meant the chance to move in with his girlfriend and become engaged. It gave Carlo the chance to get married and have children. And for Chrissy in Colorado, it helped her finally “feel comfortable staying home alone with my children.”
Keeping epilepsy in check to make work and school feasible
A new epilepsy therapy may also hold the possibility of resuming school, returning to the office or starting a new career.
Uncontrolled seizures can make it difficult to physically get through the workday, let alone feel comfortable around colleagues or do a job well. They can also make it difficult to keep up with the demands of school or college.
While giving online lectures, Chrissy, a criminal justice specialist, often found she couldn’t get out the words she wanted to say. Or she would get stuck on the same one, like a broken record. In addition to experiencing several blackouts per week, she faced a constant barrage of smaller seizures, less intense but still damaging.
And at the University of Georgia, Mollie experienced seizures at night, then dragged herself to classes with a bruised lip and swollen tongue. When the seizures affected her memory, she couldn’t continue and had to drop out of school.
“I would not even be able to remember what I had done during the day,” she says.
Thanks to the RNS System, Chrissy rarely experiences those broken record moments anymore, giving her renewed confidence in her teaching career. Therapy also helped Mollie achieve her goal of returning to college.
Changing epilepsy therapy to achieve freedom and independence
Many people with drug-resistant epilepsy just want normalcy in their life. With the right therapy, you can aim for the things that seem simple to others. You can try to get your driver’s license back. You can look for your own place to live. And you can reenter the world, with less worry and fear and more confidence and self-reliance.
Every person experiences seizures differently and individual results will vary. But a good first step is to ask yourself what you want: How do you want the seizures to change? And, how do you want your life to change?
By setting your goals and trying something new, you can potentially overcome challenges and carve out a life, like Danny.
Uncontrollable seizures forced him to quit his job and focus on finding help. When surgery failed to provide effective seizure control, he turned to the RNS System. He now lives on his own and runs his own business.
“Before, I lived with a lot of uncertainty, taking things one day at a time,” he says. “Now, I’m able to plan and make long-term goals. It feels like a miracle.”
1. Razavi, et al. Epilepsia. 2020.
*Every person’s seizures are different and individual results will vary