Tips & Tricks for People Living with Epilepsy
- Some concerns faced by people living with epilepsy include taking medications properly, having healthy habits, keeping in mind seizure safety guidelines, and avoiding medications that may worsen your seizures.
- Find tips, tricks, resources and information to manage these concerns.
- Keep trying different ways to manage your seizures until you find what works for you.
Epilepsy News From: Monday, November 13, 2017
Managing epilepsy (recurrent seizures) can be complicated because there are many things to consider. A short list of concerns includes taking medications properly, having healthy habits, keeping in mind seizure safety guidelines, and avoiding medications that can actually worsen your seizures. These issues can be especially overwhelming when you are first diagnosed with epilepsy.
There are ways to simplify challenges you may face. Here are specific tips and tricks, along with helpful resources and ideas, to give you plenty of concrete options to try.
- Be flexible! Try the different tricks and tips to see which ones work best for you.
- The most important thing is to create a system that will help make your life easier.
- Creating routines that naturally integrate managing medications, remembering doctor’s appointments, and other basic concerns into your daily life will set you up for success in the long run.
Concern One: Taking Your Medications
Taking your medication as prescribed by your doctor, at the same times every day, can be very difficult. We live in a fast-paced world and many of us are juggling multiple responsibilities. However, missing even one or two doses of your medicine can cause a seizure, so remembering to take medicine as directed is extremely important. #AimForZero Missed Medications
However, realistically everyone misses a dose sometimes! It can simply slip your mind, or sometimes you realize that you are out of medications when you go to take your pills. Do not be hard on yourself for these slip ups. Instead, let’s look at tips below that can address how to create a system that will set you up to avoid slip ups in the future.
Forgetting to Take Your Medication
Click "Read More" to Find Medication Reminder Tips and a Trick
Tip: There are many apps on smart phones that can assist with remembering to take your medications. You simply download the app, input your medications and the times that you take them, then set up the reminders. That way when you are in a classroom or in the office working hard and the time to take your medicine arrives, your phone can send you a subtle reminder and you won’t miss your dose. It’s that easy!
A quick search in the app store showed there are many choices. Here are only a few examples:
- Epilepsy Foundation My Seizure Diary
- Epilepsy Foundation Texting 4 Control
- Round Health - Medicine reminder and pill tracker
- Medisafe Pill Reminder & Medication Tracker
- Mango Health - Medicine Manager, Pill Reminder
- iCare Medication Reminder
Note: I do not endorse these apps and have not used them personally.
Trick: Place your medication somewhere in plain sight where you will see it daily. For example, you could place it next to your coffee machine, on top of your microwave, or in your bathroom next to your toothbrush. (Remember to check your medication insert or ask your pharmacist if there are storage requirement, such a refrigeration or avoid hot or humid storage areas.) The important thing is when you wake up in the morning and see it, you take it right away so you don’t forget. Try different locations and see which one works best for you.
Tip: Good old-fashioned pill boxes also work well for some people. Just sort the pills you take by day, and in the ones with two rows, sort them by morning and evening doses, then take them daily. It is an easy way to ensure you have taken all the medication you intended to for that day.
Running Out of Medication
Always try to keep track of how much medication you have left, and call for a refill a few days before you need it. You never want to call the doctor’s office or pharmacy and find it’s closed or needs to be special ordered. As mentioned before, even missing a few doses of medication can cause a seizure.
Click "Read More" to Find a Tip to Prevent Running Out of Your Medication
Tip: Try adding a reminder in the calendar on your phone (or on a paper calendar or in your Epilepsy Foundation My Seizure Diary) the date that is at least 1 week prior to when your medication will run out. That way you can call your doctor when your phone reminds you and it will give you plenty of time to arrange for a refill of your medications.
Concern Two: Healthy Habits for Epilepsy
There is a lot of talk in the media about what is healthy: drink a lot of water, cutting out carbs, other fad diets, etc. The advice seems to change week to week. Are these the healthy habits your doctor means when he or she talks with you about making lifestyle changes? Well, no. For people with epilepsy, there are specific recommendations.
Click "Read More" to Find Healthy Habits Tips and Tricks
- Do not miss doses of your medications. (See Concern One!)
- Get plenty of sleep. #AimForZero Lost Hours of Sleep
- Drink plenty of water.
- Eat a healthy balanced diet and do not skip meals.
- Try to reduce stress and control anxiety.
- Avoid alcohol and recreational drugs. #AimForZero Seizures
- Certain people with epilepsy should avoid flashing lights.
- Try to avoid catching colds and illnesses as much as possible.
- Use good basic hand hygiene: use hand sanitizer or wash your hands with soap and water often.
- Try to avoid touching your face because this is how we commonly pick up a cold.
- Getting your annual flu shot is one of the best ways to keep you healthy during flu season.
Concern Three: Seizure Safety
There are specific considerations that people with epilepsy must make to stay safe and protect themselves and others from harm.
Click "Read More" to Find Safety Tips
Tip: The easiest way to consider what is safe versus what is not safe is to ask yourself the following question: “What would happen if I were to have a seizure right now, doing [fill in the blank] activity?”
For example, if the activity was swimming alone, the risk would be that you could drown if you had a seizure and no one was there to help see you and get you to safety.
Tip: Tell your friends, family, and (if you feel comfortable) coworkers that you have epilepsy. Explain what epilepsy is and let them ask questions. Let them know what they should do if you have a seizure when you are with them. Tell them to remember when the seizure started, what it looked like, and to turn you on your side (to protect your airway). Tell them under which circumstances they should call 911 and EMS.
General Safety Recommendations
- Do not swim alone.
- Do not climb to heights.
- Do not cook over an open flame without supervision.
- Do not drive if you have had a recent seizure within the past 6 months to 1 year. (Specific laws vary by state. Check our State Driving Law Database for details in your state.)
- Do not give a baby a bath without supervision.
Learn more about staying safe.
Note: Please always follow the advice of your physician and all state and federal laws. The list above is meant to be a general overview and is not all inclusive.
Concern Four: Medications that Can Worsen Seizures
Certain medications can actually put you at increased risk for having seizures. Not all doctors are as comfortable as an epilepsy specialist when treating people living with epilepsy. Therefore, it is important to know some of the most common medications to keep an eye out for.
Click "Read More" to Find Medication Interaction Information
Tip: Print out the followings list and stick it in your wallet. Or copy and paste it to a document device on your phone (like Notepad) for easy future reference. That way when you go to your doctor’s office, you can refer to the list easily!
Common medications that lower your seizure threshold include:
- Certain Antibiotics:
- Penicillin class. Examples are Amoxicillin, Ampicillin, and Augmentin.
- Fluoroquinolone class. Examples are Ciprofloxacin and Levaquin.
- Metronidazole (Flagyl).
- Certain Antidepressants:
- Tricyclic antidepressants. An example is Amitriptyline (Elavil).
- Bupropion (Wellbutrin/Zyban)
- SSRIs/SNRI class. Examples are Sertraline (Zoloft), Fluoxetine (Prozac), and Venlafaxine (Effexor).
- Antipsychotics. Examples are Chlorpromazine, Clozapine, Perphenazine.
- Excess alcohol use and withdrawal from alcohol.
- Benzodiazepine withdrawal (Xanax, Ativan, etc.)
- Illicit street drugs. Examples are Amphetamines (aka Meth), Cocaine, Ecstasy (and derivatives like Molly), and Spice.
Learn about drug interactions.
Note: These are some of the most common medications, but this list is not complete. Be sure to discuss any questions with your health care provider.
I hope these tips and tricks were helpful and that managing your epilepsy seems a little more manageable now. The important thing is to keeping trying new tricks until you find the right ones that work for you!
Kathleen Murray MD | Neurology Resident, PGY-2, at the University of South Florida
Selim Benbadis MD
Monday, November 13, 2017