I’m 36 now and had my first seizure when I was 23 in my sleep. Why? Who knows. There’s still no clear answer about anything.
VNS and RNS
I have the VNS and the RNS and the seizures still overpower both of these gadgets. I am learning to live with these but my seizures are still uncontrolled and have a mind of their own. Just when I think I’m doing good for a week…BAM… I have another seizure.
What is VNS?
According to LivaNova, the company that provides the VNS Therapy System, VNS is delivered through a device that sends mild pulses to the vagus nerve at regular intervals throughout the day in an effort to prevent seizures. The hope is that an additional dose of therapy may stop or shorten your seizure, decrease its intensity and improve your recovery. VNS Therapy includes a short outpatient procedure which takes about an hour. VNS Therapy does not involve brain surgery.
What is RNS?
According to NeuroPace, Inc., the company that provides the RNS® System, The RNS® System consists of a small, implantable neurostimulator connected to leads (tiny wires) that are placed in up to two seizure onset areas. It comes with a simple remote monitor that you use at home to wirelessly collect information from the neurostimulator and then transfer it to the Patient Data Management System (PDMS). Your doctor can log into the PDMS at any time to review accurate, ongoing information about your seizure activity and treatment progress. This helps your doctor learn more about your seizures and improve your care.
The RNS® System involves a surgical procedure that is performed by a trained neurosurgeon. Prior to the procedure, your medical team conducts diagnostic testing to identify the location in your brain where your seizures start. During the procedure, your surgeon positions the leads at the seizure source and places the neurostimulator in your skull. Once implanted, the device is hidden under your scalp—unnoticeable to you and others. Most patients go home the next day. The RNS System is a reversible treatment that does not involve removing any brain tissue.
Then my mom is in my face in the middle of the night crying over me like it’s my first one. I still can’t help but apologize to her every single time I have one.
Taking a positive approach
All the meds I’ve tried — and all the surgeries — and my seizures are still not controlled. But it could be worse, right? I had some pretty bad thoughts but out of all this I was blessed with a beautiful daughter. She has been my strength because honestly if it weren’t for her, I would’ve given up a long time ago.
I was diagnosed with epilepsy in 2013, at the age of 24. I work in New York City and went out at lunchtime – and had a seizure on the sidewalk. Some good Samaritan (I still don’t know who it was) called the ambulance and notified my job.
I have juvenile myoclonic epilepsy and experience tonic clonic seizures. I have had myoclonic jerks my whole life and never suspected anything, but my neurologist said I get them more than the average person.
Unfortunately, I don’t experience an aura, but people around me can sense something is off. My husband can spot it so easily.
In August 2013, my parents found me on the dining room floor. After my diagnosis, I managed to last two years seizure-free and finally began to drive again.
Then, I had another seizure October 2016. I also had a seizure a month before my wedding after getting out of driving my car. In NYC, the epilepsy driving law is you must be a year seizure-free. In the beginning, this was so frustrating. Now, I have no desire to drive. Luckily, I work in NYC and can rely on mass transit.
One benefit to that episode was I finally decided to speak out about my epilepsy. Last year (with the help of my amazing sister) I planned a “Seize the Night” Zumbathon at our gym and raised over $2,700 dollars. The proceeds of this fundraiser were donated to the Epilepsy Foundation. Thank you to everyone who participated!
I then went eleven months seizure-free free until May 2019. Since then I’ve had two stays in the Neuro ICU within four months. Wish me luck!
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.
This blog post was submitted by Eisai, the Presenting Sponsor of the November 2019 Epilepsy Blog Relay.
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.
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.
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.
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.
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.