Dose mapping and Breakthrough Seizures, What is The Link?

Dose mapping and Breakthrough Seizures

This blog post was submitted by Eisai, the Presenting Sponsor of the November 2019 Epilepsy Blog Relay.

Every person living with epilepsy faces a different journey, but the goal is the same: freedom from seizures. While some patients achieve seizure freedom with their first medication, many more will have to try multiple drugs – oftentimes more than once and at different doses. Switching to a new medication or changing your dose may seem simple but can involve a long process to balance effectiveness with side effects. This balancing act involves the person living with epilepsy, their physician and the support team.

There are many reasons it may be necessary to make changes to a treatment regimen.  While most people think about effectiveness and tolerability of the medication first, it is also worthwhile to think about how the medication and dosing schedule fit into one’s lifestyle. Daily schedule changes, increased travel for work, changes during adolescence, or even an over-crowded schedule can impact adherence and how well the medication works in your system. These should all be considerations to encourage a successful shift to a new treatment approach.


What is Dose Mapping

The period during which one is building up to the most effective dose of medication is known as dose mapping or the titration period. This can take several weeks as many drugs need to be titrated at weekly intervals. During this process, the number of doctor visits increases as the care team monitors how well the drug is working as well as how side effects are tolerated. The financial and time burdens associated with additional visits and testing can add stress for patients and their families.

In addition to more time in the doctor’s office, coming off one medication and starting another can take an emotional toll. It is natural to feel frustrated or fearful once it becomes clear that a treatment regimen isn’t working or needs to change. Equally stressful is adjusting to a new treatment schedule and the related worry that a breakthrough seizure can occur while waiting for the new medication to reach its optimal dose.

“When a patient begins a new medication, doctors must take the time to help them adjust to the full dose with minimal side effects. During the time it takes to reach a full dose, the patient is more vulnerable to breakthrough seizures, because the medication is not yet working at full efficacy.” Dr. Barry Gidal, professor of pharmacy and neurology at the University of Wisconsin-Madison, explains that, “In order to manage this increased vulnerability, we will often start a new medication on top of the existing therapy. This means we must partner with our patients to ensure that they understand how the new treatment schedule includes the original medication as well as the new therapy.”

Juggling multiple medications and treatment schedules can make adhering to a new treatment regimen more difficult, so the more rapid the titration schedule, the easier it is to get into a rhythm that supports adherence.

When thinking about dosing, it’s important to remember that not all drugs are the same, and titration periods differ between medications. Some medications may reach a therapeutic dose in four weeks instead of six but require multiple pills a day. It is also possible that a medication with great efficacy has side effects that don’t allow you to live comfortably. These variables must be considered by the care team when starting a new mediation.

 

Working as a Team

Part of your responsibility in managing epilepsy is to understand how shifting medications needs to fit into a way of life that is realistic for you. If the number of doctor visits associated with a longer titration schedule are difficult in one’s schedule, then talk to your doctor about considering a medication with a more rapid titration schedule or which offers optimum protection from seizures at lower doses.

Be sure to help your doctor understand your personal needs as you consider a new medication so that your physician can work with you on a treatment plan to fit your lifestyle. These “minor” updates (a new weekly activity, change in diet, a new commute) can be incredibly important information for the doctor to have when making treatment decisions and considering dosing schedules.

“Keeping seizure diaries that not only track seizure frequency and severity, but side effects as well, is one the best ways to help physicians identify treatment options that mitigate the risk of breakthrough seizures from the start,” says Dr. Gidal. “It is important for a patient to be his or her own best self-advocate and openly communicate with their health care provider – be that physician, nurse or pharmacist.”

To learn how to discuss the best plan to fit your journey to seizure freedom, check out patient and physician resources on EPILAPSEY.com.

 

Epilepsy Blog Relay: A Mother’s Perspective on Her Evolving Role as Caregiver

This post is part of the Epilepsy Blog Relay™.

This blog post was submitted by Eisai, the Presenting Sponsor of the November 2019 Epilepsy Blog Relay.

Carole’s Story

As a parent of two young adults with epilepsy, I understand the challenges – both emotional and physical – that come with caring for young people with this complex condition. My daughter began having seizures as a young child and was seizure free for 15 years before being diagnosed with another form of epilepsy in early adulthood. Helping her navigate the medical system from the sidelines, was a very different experience than being the primary caretaker for my son who was diagnosed with epilepsy when he was in high school and still living at home. Still, the roles of parent and caregiver feel inherently connected to me, and I know just how challenging it can be to let go as your children begin to take a leading role in managing their own care.

My son and I needed to learn how best to work together to manage this new development while enabling him to live like a teenager. I had to remind my son – who barely took vitamins – to take anti-epileptic medication every day, to get enough sleep, and to avoid anything that could trigger a seizure. But while I was running point, I was aware that soon he would need to learn to handle his epilepsy independent of my day-to-day management. His pending adulthood meant that my son needed to learn how to care for himself, and just as importantly, I needed to learn how to let go. Any mother can tell you that it is a difficult thing to do, but what made it possible was arming myself and my child with the right information and finding the right people to rely on throughout the journey.

Opening up and Preparing for College

When he was first diagnosed, my son was private about his diagnosis. He didn’t want to be different, and, like many teens with epilepsy, was embarrassed by the condition. As caregivers, we see first-hand the frustration, isolation and fear of being treated differently that teenagers with epilepsy face. As his mom, it was heartbreaking, and as his caregiver I knew that those feelings of stigma and isolation would make it harder for him to maintain adherence to his medication. We reached out to the people closest to him: coaches, close friends and teachers, and let them know what was going on, because treatment lapses in recently diagnosed patients are inevitable and we knew that he needed a larger support system to hold him accountable.

Even with an expanded support system and the confidence to talk about this condition, I was worried about treatment adherence challenges he would face in college. He would need to consider his medication a major part of his daily routine and maintain adherence while avoiding triggers – without me there to remind him. These are just a few of the things we learned that made the biggest difference in his transition away from home.

  1. Encourage your child to let his/her roommate(s) know about their condition right away.

Take the fear of judgement away immediately. The epilepsy is not going away, and their roommate must know what to do, and who to contact in case of an emergency.

  1. Make clear with your child the importance of routine.

All medications come with different instructions: when to take it, how often, and with which meals. When patients fully understand those details, they can better integrate medication into their day-to-day lives, promoting adherence. Forgetfulness is a major reason for non-adherence and something as easy as a designated medication drawer or keeping medication next to a toothbrush can help.

  1. Take notes!

Encourage your child to document his/her challenges and successes. You can even do the same. I have notes on my phone detailing what my children’s schedules are like and the date/time of any seizures. Sharing this information with doctors can also be essential to optimizing treatment.

  1. Speak with your treatment team.

Ask your doctor, nurse or other healthcare professional about strategies for keeping your treatment on track, including what medication options may be available

Transitioning to Adult Epilepsy Care – The Importance of the Waiting Room

When my son’s doctor told me that he would no longer discuss my son’s treatment without him present, it was difficult, but appreciated. Setting that boundary made it clear to my son that he was in control.

Though distressing, having to sit in the waiting room turned out to be an important step in the transition of care for me and my children. I trusted that they were asking the right questions and sharing the right information with their doctor because I had used resources and gotten them into the habit of being open and taking notes.

Easing the Transition on Yourself

Epilepsy impacts the entire family. While I’m happy to say my kids are now adults, who manage their own medication and live independent lives, transitioning from caretaker to just “mom” was difficult, and I needed to seek support for myself as well. I encourage any parent facing this transition period to attend support groups and take care of yourself. Caregiver burnout is real. Your child has a team to help with their treatment, you deserve one to support you as well.

 

If you are facing a transition away from care because your child is going to college or simply growing up, check out https://www.epilapsey.com/patient for more resources.

 

 

Epilepsy Blog Relay: Reasons for Working with Your Epilepsy Specialist

This post is part of the Epilepsy Blog Relay™

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.

Taking Medication

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.

 

© 2019 Sunovion Pharmaceuticals Inc. All rights reserved. 12/19 NPC-APT-US-00014-19

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay.


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: Improving Adherence Requires a Team Approach

This post is part of the Epilepsy Blog Relay™.

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.

Adherence Strategies

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

For more information on adherence and tips for discussing your treatment plan with your provider, watch episode #6 of the series “Breakthrough TV” on Facebook Live.

REFERENCES

  1. Davis KL, Candrilli SD, Edin HM. Prevalence and cost of nonadherence with antiepileptic drugs in an adult managed care population. Epilepsia. 2008;49(3):446–454.
  2. Samsonsen C, et al. Nonadherence to treatment causing acute hospitalizations in people with epilepsy: an observational, prospective study. Epilepsia. 2014;55(11):e125-e128.
  3. Cramer JA, Glassman M, Rienzi V. The relationship between poor medication compliance and seizures. Epilepsy Behav. 2002;3(4):338-342.
  4. Hovinga CA, et al. Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: survey of patients with epilepsy and physicians. Epilepsy Behav. 2008;13:316–322.
  5. Paschal AM, Rush SE, Sadler T. Factors associated with medication adherence in patients with epilepsy and recommendations for improvement. Epilepsy Behav. 2014;31:346-350.
  6. Ferrari CM. Factors associated with treatment non-adherence in patients with epilepsy in Brazil. Seizure. 2013;22(5):384-389.
  7. Conrad P. The meaning of medications: another look at compliance. Soc Sci Med. 1985;20(1):29-37.
  8. Institute for Quality and Efficiency in Health Care (IQWiG). Epilepsy in adults: treatment with medication. 2016. Available online. Accessed Aug. 13, 2019.
  9. Sarma AK, et al. Medical management of epileptic seizures: challenges and solutions. Neuropsych Dis and Treat. 2016;12:467–485.
  10. St Louis EK. The art of managing conversions between antiepileptic drugs: maximizing patient tolerability and quality of life. Pharmaceuticals. 2010;3:2956-2969.
  11. Cleveland Clinic. Epilepsy medications. Available online. Accessed Aug. 14, 2019.
  12. Cramer JA, Wang ZJ, Chang E, et al. Health-care costs and utilization related to long- or short-acting antiepileptic monotherapy use. Epilepsy Behav. 2015;44:40-46.

NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

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