Epilepsy : 10 Things Patients & Family Members Should Know 1

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1. Seizure Disorder = Epilepsy (but not all seizures are epilepsy)
Epilepsy is a brain condition that causes seizures. Some doctors might use the term “seizure disorder” instead of epilepsy. A seizure is a brief change in how you act, feel, or move. When a seizure happens, you can’t control these changes in your body.
The brain is made up of cells called neurons. Neurons work by sending electrical signals. With epilepsy, sometimes too many neurons fire at once. This causes a seizure.
There are some seizures, though, that are not considered epilepsy. This includes…
 a seizure caused by fever
 a seizure caused by low blood sugar
 a seizure that comes right after a brain injury
 a seizure following alcohol abuse
 a seizure caused by certain drugs
Another type of seizure that’s not epilepsy is a psychogenic nonepileptic seizure (PNES). These seizures are not caused by an electrical problem in the brain. Instead, they are caused by stress, often from something bad that happened in the past. Treatment for PNES is very different from treatment for epilepsy.

 loss of consciousness (blacking out)
 not responding to others
 not remembering what just happened
 confusion
 falling for no reason
 staring, chewing, or unusual eye movements
 fumbling with objects, picking at clothes
 wandering around in a daze
 sudden fear for no reason
 déjà vu (feeling where everything seems strangely familiar)
 seeing, hearing, smelling, or tasting something that’s not there
 numbness or tingling
 trouble with speaking
 strange feelings that are hard to describe
 movement you can’t control
o stiffening
o jerking, shaking, or twitching
o sudden drop of the head
o movements that have no purpose
If any of these episodes are seizures, ask your doctor what type they are. Also be sure to ask your neurologist what type of epilepsy you have. The more you know about your condition, the better you can manage it. Knowing more about your specific epilepsy type can help you…
 talk about it with others
 find out more about it at the library, on the Internet, or through Epilepsy Foundation of Michigan
 understand your treatment options
 plan for the future
Many tools can be used to help doctors understand your epilepsy. Ask your doctor about…
 routine EEG
 ambulatory EEG
 video-EEG monitoring
 keeping a seizure diary and videotaping seizures
 blood tests
 sleep studies
 MRI
 other neuroimaging technologies
Sometimes, a neurologist may not know exactly what type of epilepsy you have. Even so, you have the right to hear everything your doctor does know about your condition.

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2. The goal of epilepsy treatment is “No seizures and no side effects.”
You and your neurologist should always be working toward this goal. This includes telling your neurologist about…
 any side effects you’re having
 any seizures you’ve had, including…
o seizures you think of as “minor”
o other episodes that might be seizures (but you’re not sure)
 any other medicines you’re taking (some can affect how your epilepsy drugs work)
 any seizure patterns, triggers, or warnings you’ve noticed
 any problems you’ve had getting your medicine or paying for it
 any changes in the medicine your pharmacist gives you
There are also many things that can look like seizures but aren’t. This includes…
 fainting
 sleep disorders
 panic attacks
 migraines
 strokes or mini strokes
…and many other conditions.
3. There are many types of seizures and many types of epilepsy.
Epilepsy is not a single condition. It is a general term for over 40 different conditions. There are also over 20 different types of seizures. Seizures can involve a wide range of symptoms. Most often, they start suddenly and end after a minute or two. Tell your neurologist about any brief episodes you’ve had that involved any of these symptoms:

You should talk with your neurologist about other treatment options if…
 you’ve tried 2 – 3 medicines for epilepsy, and you’re still having seizures
 you’re seizures are controlled, but you’re having major side effects
Other treatments include…
Epilepsy Surgery
 mostly for people whose seizures start in one part of the brain
 usually, a part of the brain is removed or disconnected
 may offer the best chance of becoming seizure free
 risk of serious problems is low but should be discussed with doctor
Vagus Nerve Stimulator (VNS)
 device implanted under the skin on the chest
 wires connect to the vagus nerve in the neck
 brain gets electrical stimulation every 5 minutes or so
 can make seizures happen less often or make them less severe
 magnet can be used to stop or shorten a seizure that has already begun
 people with the VNS usually don’t become seizure free
Ketogenic Diet
 high-fat, low-carb diet that can sometimes reduce or stop seizures
 must be closely monitored by a doctor and a dietician
 can be hard to follow
 used mostly in young children
There are other treatment options as well, but less is known about how safe they are or how well they work.
4. You have some control over your seizures and your health.
With epilepsy, seizures are hard to predict. Much of what happens is beyond your control. There are things you can do, however, to have fewer seizures and better health. Here are some examples:
 Keep a seizure diary, and avoid seizure triggers
 Have a regular sleep schedule, with at least 8 hours of sleep each night
 Reduce your stress
 Take your medicines as prescribed
 Exercise and eat healthy.

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