This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay. Dr. Blanca Vazquez is a paid consultant of Sunovion Pharmaceuticals, Inc.
Dr. Blanca Vazquez
Managing epilepsy is a full-time job. But you don’t have to do it alone. There are healthcare professionals who have the knowledge and expertise to help make managing your epilepsy easier.
Whether you are newly diagnosed or have been living with epilepsy for years, it is always easier when you have a team you can trust in your corner. There are many neurologists who are very good at treating epilepsy. If you’ve found one that is helping you control your epilepsy, stick with them. But, if you’re having breakthrough seizures, experiencing medication side effects, or are dealing with other conditions, such as mood disorders on top of your epilepsy, you may want to consider finding a neurologist who specializes in the treatment of epilepsy.
Regardless of who you’re working with to manage your epilepsy, open and honest communication with your healthcare team is a priority. They need to know what is going on in your life so that they can offer you the treatment that will best fit your needs. Everyone wants to be seizure-free with no side effects, but since everyone’s epilepsy affects them differently, that isn’t always possible. That’s why you need to work with a specialist. They can help you find the treatment that works best for you and your circumstances.
One of the biggest challenges I see in my practice is patients not taking their medication as they’re supposed to. There are a lot of reasons why patients are not compliant with their medication, but I think they come back to a couple important reasons: Their expectations for seizure freedom without any side effects are too high or they aren’t tolerating the medication well. There are ways that epileptologists can help you manage those. We can explain how no medication is without side effects and offer solutions for how to manage them. We can start you off at a lower dose and build your dose up, allowing you to possibly tolerate it better. We can prescribe a medication that is once a day so that it is easier to work into your daily routine. We just need to know more about you, your expectations, and your habits/routines so we can personalize your care to treat your epilepsy.
A Specialist You Trust
At the core of your epilepsy team, you should have a specialist who you trust. Having the right person on your team affects the information you are given, the treatments that are recommended, and the resources that are presented to you. Your epilepsy specialist is the hub for your care, and coordination of care can make the difference in getting treatment that gives you control of your seizures.
Our goal is always seizure freedom because one seizure can be one too many.
This blog post was submitted by Eisai, the Presenting Sponsor of the November 2019 Epilepsy Blog Relay.
Lucretia Long, APRN-CNP
Former Surgeon General C. Everett Koop once said, “Drugs don’t work in patients who don’t take them.” For people with epilepsy, treatment adherence is essential to optimal care and positive outcomes. Yet studies show that epilepsy patients don’t take their medications 30 to 60% of the time, which puts them at greater risk of breakthrough seizures. Missed medication doses are the number one cause of breakthrough seizures, which can cause significant injury. Nearly half of those with epilepsy report having a seizure following one missed dose.
“Adherence is a crucial part of the journey toward seizure freedom, but for many people with epilepsy, taking their medications on schedule can be very difficult,” said Lucretia Long, APRN-CNP, Ohio State University Wexner Medical Center. “The reasons for this can be as varied as the patients themselves, so it’s important that we collaborate with our patients toward a comprehensive, realistic plan of action that fits medication into their daily routine,” said Ms. Long.
Why is adherence such a big challenge?
In a study of 661 adults with epilepsy, 66% reported taking more than four pills per day, and more than one quarter (28%) were taking 7 or more pills daily. With this type of regimen, some people simply forget which medications to take and when. Others have busy schedules that don’t leave enough time to take their medicine on schedule. Treatment side effects are also a common cause of non-adherence.
For health care providers, it can be difficult to find the right mix of medications for each patient. No health care providers can predict in advance whether an anti-epileptic drug (AED) will be effective for an individual. Some people achieve seizure freedom with the first medication they’re prescribed, while others take much longer to find the treatment that’s right for them. Factors including lifestyle, age, other medical conditions, type of seizures and treatment history all play a role.
Most people begin taking one AED at a low dose, and if that doesn’t work, the dose is increased. If that is still not effective or the person has difficulty with the side effects, the health care provider will typically switch to a different drug. With more than 20 AEDs currently approved by the FDA, patients may have to try many different drugs before finding the “right” one, and it may become necessary to combine several treatments.
While occasional missed doses are inevitable, there are proactive steps patients and health care providers can take to help patients stay on track with their medication. Researchers have suggested that a more patient centered approach to epilepsy care, focused on open provider-patient conversations, would go a long way toward improving adherence. Trust is also key, as patients who report a trusting relationship with their health care provider and feel more comfortable discussing missed doses are more likely to be adherent.
“Our goal is to get each patient on the lowest dose of medication with the simplest regimen as quickly as possible while minimizing side effects,” said Ms. Long “To achieve that, we need an honest, ongoing discussion about the person’s lifestyle, causes of missed doses, tolerance for side effects, and potential solutions that make sense for that individual.”
Additional strategies include:
Simplified, manageable dosing, as adherence rates have been shown to be higher among those on once daily treatment regimens versus those requiring two or more daily doses.
A reminder system that will alert the patient when it’s time to take medication and/or get a refill, coupled with a plan from the treating provider for what to do when pills are forgotten
Medication containers, such as those with a separate compartment for each dose or that digitally display the amount of time elapsed since the container was last opened
Improving patients’ understanding of epilepsy to help empower them toward better self-management
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When I was 9 my dream of joining the navy was crushed. I was told that I’d probably never be able to drive. I was also told if I wanted to have kids I’d need to consult my neuro at least 1 year before. I was not allowed to take a bath, swim alone, bike alone… Basically be alone.
According to the doctor 24 years ago, even he didn’t say it, I ended up in a prison. Luckily my mum and stepdad never took all the advice. They were cautious, but let me go to school by myself, on my bike, without a helmet. I’m a Dutch girl after all.
VNS in Belgium
They started me on meds that didn’t work and had too much side effects. They started other meds, other combinations, other doses. Basically they’ve been trying for the last 24 years and here we are, still not seizure free. In 2015 we started the VNS proces. We started all the examinations and in the beginning of 2016 I heard that I was a candidate for the VNS. I didn’t do the surgery though. I wasn’t ready yet. Taking the VNS meant, for me, that there was no pharmaceutical solution left. And I wasn’t ready to give in to that idea yet. Especially since you have no clue about the results. They can be from non-existent to seizure free.
My epilepsy has always been fluctuating. Good periods were alternated by lesser periods to serious bad ones. I have had some status seizures and am very grateful that I survived them. However we never know the reason of the fluctuation. The end of 2018 a lesser period occurred. And although the seizures weren’t that bad, the situations were. I scratched my hand on a nail, I fell on a crossroad, during rush hour, right after a bus passed by… That’s when I decided it was time. That’s when I decided I didn’t want to continue like this. I was ready for the VNS.
The VNS Experience
Fast forward to May 17th 2019. The VNS was implanted. Surgery went well, scar in my neck is healing very nicely. The scar on my breast is not, I’m well rounded, and as I was warned by fellow VNS patients, the scar shows a little tearing due to gravity.
June 4th, they turned on my VNS. It has been a life changing experience. But really, I’m not kidding. From the first moment I feel more energetic and vivid. And a very nice result for me… I hardly ever have the hiccups anymore. I used to have them very often and they were always loud and very uncomfortable. How about my seizures? I don’t know. I have absence seizures with irregular tonic clonic seizures. My absences are very short so we have to wait till June next year.
Are all the results of the VNS good? No. Off course I have the known vocal chords problems. But there is something they never warned me for. For 24 years I lived in a bubble of brain fog and seizures. For 24 years I experienced not everything in this world. And now? This world is so full of noise, smell, lights… Wow. And it’s clear I don’t know how to handle it…. yet(?). On top of that, I don’t know how to handle the powerlessness of not knowing how to handle it. So far… it just makes me angry. However when I enter a 4D attraction in Disneyland Paris I did dozens of times before and I smell things I never smelled before and I feel fine when I come out after using the magnet. I forget all the anger and I am so totally happy with my decision.
Jewel is a Brooklynite who is married to her college sweetheart. She is the mother of two handsome boys who keep her very busy. Jewel is always moving but she is content knowing that she’s striving for balance and not perfection. She has decided to share her story as a millennial woman learning to navigate being a wife, mother and career driven woman living with a seizure disorder.
Last year, I participated in The United Airlines Half Marathon as part of The Epilepsy Foundation of Metropolitan New York’s team. Excited about participating in a cause that is very dear to my heart and being a part of something bigger than myself I signed up immediately. After the adrenaline rush subsided and I was thinking with the full function of all my brain cells, it dawned on me. I haven’t been to the gym in years and I haven’t run since the track team in high school. My mind began to race and then the most concerning thought entered my head …
Automatically, I began to talk myself out of running. I mean, this was a HALF MARATHON!! Not just 1, 2 or 5 miles but 13.5 miles of my legs and feet pressing against the concrete jungle of New York City for 2 to 3 hours. I had no clue if I could mentally and physically handle participating in the marathon. I didn’t consider how my seizures might effect my performance, energy or if I would have a seizure while running.