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Epilepsy Blog Relay: Andy takes charge of his epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

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

For more information, please see the APTIOM Medication Guide and Full Prescribing Information on APTIOM.com. This is Andy’s story and individual results with APITOM® (eslicarbazepine acetate) may vary.

Additionally, please see Important Safety Information at the end of the blog post.

Andy’s Story

I was diagnosed with partial-onset seizures at eight years old, and, at the time, I had no idea what this meant. I was confused, and so was my family. We quickly learned that there was a lot of confusion surrounding epilepsy and we needed to get educated. One of the hardest parts of living with epilepsy for me was definitely the daily uncertainty. Not knowing when I would have a seizure made me feel closed off. My partial-onset seizures started mildly when I was younger, which I could hide pretty well because to people at school it just looked like I was spacing out.

As I got older, I got more active and had more going on. I started playing sports at the agreement of my doctor, but also dealt with the nerves of taking more tests in school and just having the typical stresses of a teenager. All of these stressors were often triggers for me. I continued to live my life, but I had to be cautious and this caused anxiety. The uncertainty of every day was extremely frustrating. It totally changed the way I was interacting with the world because of this high-risk lens on life that kept me highly conservative—certain days I felt great and there were no causative factors I could put a finger on, but seizures would still come on totally randomly.

In my attempt to pretend like I didn’t have epilepsy day in and day out, I’d always push myself too far. I took an investment banking job after graduating college. That was super stressful and I hardly got any sleep—all the ingredients you don’t want for epilepsy. My health held up, but it wasn’t sustainable. Later I moved to Philadelphia, and as soon as I got a better work/life balance my health took a turn for the worse. I really wasn’t doing well and my partial-onset seizures were occurring more frequently. Eventually, after working with my health care team, we added APTIOM adjunctively to my treatment regimen.

APTIOM is an FDA-approved prescription medicine for patients four years old and older that can be used alone or with other medicines to treat partial-onset seizures. I take one pill a day, at the same time every day. So far, my doctor and I have been pleased with the reduction in the frequency of my partial-onset seizures. Of course, this is just my experience and yours may be different. It’s very important for people to discuss all the potential side effects of any medicine with their doctor before starting treatment. The most common side effects in patients taking APTIOM include dizziness, sleepiness, nausea, headache, double vision, vomiting, feeling tired, problems with coordination, blurred vision, and shakiness.

Managing epilepsy, particularly into adulthood and as my own advocate, is really tough. When you have epilepsy, you find that so much of your mental space is consumed with epilepsy and the unknown. How did I sleep? What did I eat? Am I more stressed? That uncertainty of epilepsy is ever-present. Now, I’m more proactive about the management of my epilepsy. I’ve found a doctor here in New York who I communicate and collaborate well with, and every time I have an episode, I try to understand those contributing factors. I created a seizure diary especially for when it would get bad. It’s a proactive effort to try to find the best way to deal with my partial-onset seizures. I feel like I’m doing what I can every day to take charge my epilepsy.

Indication:
Aptiom® (eslicarbazepine acetate) is a prescription medicine to treat partial-onset seizures in patients 4 years of age and older.

Important Safety Information:

It is not known if APTIOM is safe and effective in children under 4 years of age.
Do not take APTIOM if you are allergic to eslicarbazepine acetate, any of the other ingredients in APTIOM, or oxcarbazepine.

Suicidal behavior and ideation: Antiepileptic drugs, including APTIOM, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your doctor right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood.

Allergic reactions: APTIOM may cause serious skin rash or other serious allergic reactions that may affect organs or other parts of your body like the liver or blood cells. You may or may not have a rash with these types of reactions. Call your doctor right away if you experience any of the following symptoms: swelling of the face, eyes, lips, or tongue; trouble swallowing or breathing; hives; fever, swollen glands, or sore throat that do not go away or come and go; painful sores in the mouth or around your eyes; yellowing of the skin or eyes; unusual bruising or bleeding; severe fatigue or weakness; severe muscle pain; or frequent infections or infections that do not go away.

Low salt (sodium) levels in the blood: APTIOM may cause the level of sodium in your blood to be low. Symptoms may include nausea, tiredness, lack of energy, irritability, confusion, muscle weakness or muscle spasms, or more frequent or more severe seizures. Some medicines can also cause low sodium in your blood. Be sure to tell your health care provider about all the other medicines that you are taking.

Nervous system problems: APTIOM may cause problems that can affect your nervous system, including dizziness, sleepiness, vision problems, trouble concentrating, and difficulties with coordination and balance. APTIOM may slow your thinking or motor skills. Do not drive or operate heavy machinery until you know how APTIOM affects you.

Liver problems: APTIOM may cause problems that can affect your liver. Symptoms of liver problems include yellowing of your skin or the whites of your eyes, nausea or vomiting, loss of appetite, stomach pain, or dark urine.

Most common adverse reactions: The most common side effects in patients taking APTIOM include dizziness, sleepiness, nausea, headache, double vision, vomiting, feeling tired, problems with coordination, blurred vision, and shakiness.

Drug interactions: Tell your health care provider about all the medicines you take, including prescription and over‐the counter medicines, vitamins, and herbal supplements. Taking APTIOM with certain other medicines may cause side effects or affect how well they work. Do not start or stop other medicines without talking to your health care provider. Especially tell your health care provider if you take oxcarbazepine, carbamazepine, phenobarbital, phenytoin, primidone, clobazam, omeprazole, simvastatin, rosuvastatin, or birth control medicine.

Discontinuation: Do not stop taking APTIOM without first talking to your health care provider. Stopping APTIOM suddenly can cause serious problems.

Pregnancy and lactation: APTIOM may cause your birth control medicine to be less effective. Talk to your health care provider about the best birth control method to use. APTIOM may harm your unborn baby. APTIOM passes into breast milk. Tell your health care provider if you are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. You and your health care provider will decide if you should take APTIOM. If you become pregnant while taking APTIOM, talk to your health care provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1‐888‐233‐2334.

Get medical help right away if you have any of the symptoms listed above.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1‐800‐FDA‐1088.

For more information please see the APTIOM Medication Guide and Full Prescribing Information on APTIOM.com.

APTIOM is a registered trademark of BIAL, used under license.

SUNOVION is a registered trademarks of Sumitomo Dainippon Pharma Co., Ltd.

Sunovion Pharmaceuticals Inc. is a U.S. subsidiary of Sumitomo Dainippon Pharma Co., Ltd. ©2019 Sunovion Pharmaceuticals Inc. All rights reserved. 6/19 APT-US-00133-19

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


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com. For the full schedule on bloggers and more on epilepsy awareness, visit https://livingwellwithepilepsy.com.

Jessica K. Smith
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Founder and CEO Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.

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