Helpful Tips
"My fellow warriors it’s important to put your health first. Health is wealth. It’s your responsibility to make yourself a priority. You are your best advocate because you know what is best for you. Establish boundaries with yourself and others to protect yourself from triggering a seizure."
Jen's tip #1
SLEEP & EXERCISE
Both are really important
when managing epilepsy treatment.
Can sleep deprivation trigger a seizure?
Yes, it can. Seizures are very sensitive to sleep patterns. Some people have their first and only seizures after an 'all-nighter' at college or after not sleeping well for long periods. If you have epilepsy, lack of 'good sleep' makes most people more likely to have seizures. It can even increase the intensity and length of seizures. Some forms of epilepsy are especially prone to sleep problems.
SEIZURE FREE TIP:
Get your sleep, our brains need it!
It is like a reboot. You will function much better!
I learned the hard way of the impact of sleep deprivation with my epilepsy.
How can I help improve my sleep?
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Exercise regularly. Look at the type and timing of exercise. Vigorous exercise is usually better earlier in the day.
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Use your bed for sleep, not for activities that will keep you awake.
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Make sure your sleeping environment is quiet and dark.
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Try to keep consistent sleep hours. Keeping a regular wake up time is real helpful.
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Improve sleep habits before bed - look at when you exercise, don't eat late at night, and turn off your electronics!
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Avoid caffeine at least 6 hours before bedtime. Limit alcoholic drinks at night.
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Take a warm shower before bed to help you relax.
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Stop working or doing stimulating activities before you go to bed. Try more relaxing activities instead.
Exercise
More research is being done than ever before on epilepsy and exercise. Studies have shown that regular exercise provides physical and emotional benefits for people living with epilepsy. For example, in some people exercise may improve:
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Seizure control.
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Some side effects of anti-seizure medications.
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Mood disorders associated with epilepsy, including depression and anxiety.
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Sleep.
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Cognition (for example, thinking, memory, attention).
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Overall quality of life.
We also know that people with epilepsy get the same health benefits from exercise as healthy individuals without epilepsy: increased stamina and strength, weight and fat loss, improved mood, reduced stress, better sleep, and lower risk of illness.
HEALTHY TIP:
My fellow warriors remember that physical activity and fresh air does wonders for your health. Mentally it will clear your mind and physically you will feel energized.
General guidelines for a complete exercise program
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Breathing Work: Get your diaphragm and your core muscles activated and ready to work for the tasks ahead.
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General Warm-up: Begin every session by “warming up” your body and getting it ready for exercise. Watch this video for a guided warm-up.
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Start with gentle stretching and movements like jumping jacks and easy running in place to get your core temperature up.
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Then do some squats, swing your legs, or make circles with your arms to prepare your muscles and joints for the tasks ahead.
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Activation Exercises: Following the general warm-up, it is a good idea to perform exercises to warm up the part of the body you'll be working. For example, do some lunges before running or do some squats without weights before squatting with weights. You want to mimic the movement you plan on doing, but at a lighter intensity.
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Workout: After your body is prepped, now is the time to hit your workout for the day.
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Cool down: Take 3 to 5 minutes to cool down your body at a light intensity (such as easy walking, spinning on the bike, easy rowing). Watch this video for a guided cool down.
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Mobility/Flexibility: End your exercise by stretching the muscles so they do not tighten up. Either stretch on your own or use an item like a foam roller.
"Respect, Love, and Value yourself.
ALWAYS REMEMBER TO BE GOOD TO YOURSELF BY TAKING CARE OF YOURSELF. MAKE YOURSELF A PRIORITY AND KNOW THAT IT'S OKAY. DON'T FEEL GUILTY FOR LOVING YOURSELF, FIRST!
YOU'RE JUST AS IMPORTANT AS ANYBODY ELSE."
- Stephanie Lahart
Jen's tip #2
SEIZURE FIRST AID
DOS & DON'TS
Make sure you know them, and teach your family and friends. Let them know who your emergency contacts are. Tell them what your seizure triggers are so you can avoid them.
Seizure First Aid and Recognition
While there are many different types of seizures, during many of them a person may be unaware of what is going on or lose consciousness. A person could get hurt during a seizure or a seizure could last too long, or the seizure could cluster. Knowing what to do when someone has a seizure can make a difference and save a life. For most seizures, giving basic seizure first aid is all you need to do.
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PERSONAL TIP:
Knowledge is power and can save lives. Learn seizure first aid and spread the word - there are 65 million people in the world that can benefit from your knowledge. You never know when it will come in handy.
Things NOT to do whilst someone is having a seizure:
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DO NOT restrain (try to hold down) the person.
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DO NOT place anything between the person’s teeth during a seizure (including your fingers).
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DO NOT move the person unless they are in danger or near something hazardous.
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DO NOT try to make the person stop convulsing. They have no control over the seizure and are not aware of what is happening at the time.
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DO NOT give the person anything by mouth until the convulsions have stopped and the person is fully awake and alert.
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DO NOT start CPR unless the seizure has clearly stopped and the person is not breathing or has no pulse.
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DO NOT leave them. Stay with them so they have someone there when the seizure stops.
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DO NOT attract unnecessary attention to them whilst they are having their seizure – unless you can get someone who knows them to come and be with them for support.
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DO NOT phone for an ambulance immediately unless you know it is their first seizure, they have injured themselves, stop breathing or the seizure lasts more than 5 minutes.
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DO NOT make assumptions about the cause of the seizure. It is not always epilepsy but may have another cause.
"No one said it would be easy.
THEY JUST PROMISE US IT WOULD BE WORTH IT."
- Anonymous
Jen's tip #3
STAY CONNECTED
The epilepsy community makes a great addition to your support system.
The Epilepsy Foundation
The Epilepsy Foundation, in collaboration with our community and network partners, connects the people, data and resources needed to address challenging health problems associated with seizures and the epilepsies—and promotes education, policy, research and systemic change that will foster measurable and sustainable improvement for all people living with epilepsy. For more than 50 years, the Epilepsy Foundation has shone a light on epilepsy by promoting awareness and understanding, advocating for laws that matter to people with epilepsy, and funding epilepsy research.
PERSONAL TIP:
Managing epilepsy is NOT EASY by any means. For me, being connected with a community of peers has done wonders for my health. Coincidentally, I have been seizure free since I became active in the epilepsy community. I’m better educated and supported which has been so encouraging. I encourage you all to stay connected, you’re not alone.
The Epilepsy Foundation of Northern California (EFNC)
EFNC is dedicated to providing information, resources, and support to the over 180,000 Northern Californians living with epilepsy.
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Our goal is to ensure that people with seizures are able to participate in all life experiences, to improve how the community views epilepsy, and to dispel myths about this condition by providing information through training, events, and programs.
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We are currently serving 44 counties from the Oregon border down to Fresno County. Leading the fight to stop seizures and to overcome the challenges created by epilepsy since 1953.
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Support Groups
If you are struggling or if you know a loved one who is in trouble, there is help and you are not alone. There are immediate support groups available: Parent/Caregiver Support Group & Adult Support Group
This is a place where you can talk about your experiences/challenges of living with epilepsy or as a parent or caregiver of someone with epilepsy.
These groups are meant to bring together people who are going through or have gone through a rough time with epilepsy. These support groups aim to provide emotional support to people who need it, as well as a sense of belonging to a community... OUR COMMUNITY!