A salute to November as National Epilepsy Awareness Month.
There’s more to epilepsy than the infamous grand mal seizure. In fact, for many people with epilepsy, such a “big bad” seizure is a one-time event or never occurs at all.
At its root, epilepsy is a neurological disorder characterized by abnormal brain activity: certain neurons fire unpredictably, causing disruptions in muscle control or sensory awareness. Besides obvious seizures, manifestations can include:
- Twitching or stiffening of muscles
- Repetitive actions (e.g., rubbing hands or pacing) similar to nervous habits or autistic “stimming”
- Stumbling for no obvious reason
- Distortions of hearing, smell, and/or vision
- Tingling sensations
- Dizzy spells
- Momentary loss of awareness
- Anxiety attacks
About 3.4 million people in the United States have epilepsy.
Diagnosed with Epilepsy
In most cases, daily life is largely the same for people with epilepsy as for those without. However, even a tiny seizure (e.g., split-second loss of awareness) can be dangerous if it occurs while someone is driving or engaged in another complicated task. There are also cases of people dying suddenly during or after a seizure, perhaps from heart or breathing disruptions.
If you suspect that you or your child have epilepsy (note that onset—or worsening or lessening—of symptoms can occur at any age), the first step is to consult a doctor and find out whether the symptoms of concern are in fact due to epilepsy. Once the diagnosis is confirmed, you’ll need to work with a professional epileptologist (epilepsy neurologist) to plan an epilepsy-management program for your individual needs.
Key points to remember for an epilepsy-management program:
- If you have a driver’s license, report the epilepsy diagnosis to your Department of Public Safety at once. Find out what driving restrictions now apply (such as having a doctor officially confirm that you are low-risk for suffering a seizure behind the wheel).
- Determine what is likely to trigger seizures (common triggers include stress, sleep deprivation, illness, and hormonal changes), and take steps to avoid or manage such situations. In many cases, careful attention to general health principles is enough to minimize seizure risk.
- Learn to recognize symptoms of imminent seizure, such as mood swings or odd sensory perceptions. Plan what you will do if you notice such symptoms (e.g., take medication, take a nap, massage twitching muscles, inhale an aromatherapy oil—and definitely avoid vigorous or challenging activities until you’re positive the risk has passed).
- Know that symptoms can begin anywhere from several days to a few minutes before a seizure.
- If you’re at risk for overlooking symptoms or having severe seizures, consider applying for a service dog trained to recognize first symptoms, and to render aid or summon help if a seizure occurs.
- If your doctor prescribes medication, make sure to take it according to prescription and to familiarize your family with how the medication is administered (in case you need it when your own functioning is impaired).
- Keep a written record of symptoms and seizures—even seemingly inconsequential ones—to aid in understanding your personal triggers and best treatment.
Living with Epilepsy: A First-Person Perspective
Thanks to epilepsy patient Tony Hightower for providing the following tips.
- As with any health issue, proper diet and exercise is critical—what exactly is proper for you, should be discussed with your neurologist.
- Stress management is critical, as stress is often a seizure trigger—this was certainly the case for me in high school and college. Learning how to manage stress, especially through identifying stress triggers and avoiding or mitigating them, is key.
- Having a strong support network is important, especially since stress is often self-imposed. With a support network, those self-imposed stressors can be identified and addressed in a healthier manner.
- Medication is important, but nonetheless the hardest challenge I’ve experienced—aside from the seizure risk—is dealing with side effects of my anti-epileptic medication: fatigue, tremors, weight gain, migraine-type headaches, plus long-term stress on my liver. So I get regular monitoring and testing by my neurologist to help maximize positive effects and minimize the negative.
- The best medication for each individual is very important. I wish more insurance companies and pharmacies understood that the generic is not necessarily the same as the brand formulation. If the generic works for one person, that’s great, but there are “professionals” forcing people to switch anti-epileptic drugs so insurance companies can save some money, and the downside could be death.
- Again, get a regular neurologist and get the best treatment for you. As with other neurological conditions, different people react differently to epilepsy. There is no “one size fits all,” or even “most,” in what life with epilepsy looks like.
P.S. If Someone Else Experiences a Grand Mal Seizure
- Clear the immediate area of obstructions, especially sharp or hard objects.
- Don’t try to restrain the person by force. If you can, gently guide them away from possible danger areas; help them lie down on their side; loosen any collars; and remove neck jewelry. Cushion their head with a small pillow or folded piece of clothing.
- Don’t try to protect their tongue by putting anything in their mouth. The dangers of potential choking are greater than the risks posed by tongue-biting injuries.
- Once the seizure passes, let the person rest until they are fully recovered.
- Call for emergency medical help if the seizure continues longer than five minutes. If this is a first seizure or the person has co-occurring medical conditions, see a doctor immediately afterwards.
Resources:
- Epilepsy Foundation
- BridgingApps-recommended epilepsy apps