Since 1969 November has been observed as National Epilepsy Awareness Month. During this time, epilepsy advocates come together to promote awareness about this chronic condition that affects at least 1 in every 26 people. This is crucial in order to banish all stigma around epilepsy and allow those diagnosed with it to have access to better care and support.
Even though stigma associated with epilepsy can say otherwise, those diagnosed with it are capable of holding jobs, having a family, playing sports, or travelling on their own, especially if the condition is identified and managed properly. According to WHO, about 70% of the people diagnosed with epilepsy can live seizure-free. A little awareness can go a long way in promoting research around epilepsy, encouraging collaborative efforts toward acquiring better resources, and building a more empathetic society. The motto for National Epilepsy Awareness Month (NEAM) this year is, “there is no NEAM without me”. This is where you come in. You can make a change by taking a step towards understanding this condition and promoting a positive, stigma-free approach to it.
What is Epilepsy?
Epilepsy is a chronic neurological condition characterized by recurring seizures that can cause a complete or partial loss of consciousness and voluntary bodily movements. The frequency and effects of the seizures help neurologists determine the severity of the condition. However, most people do not understand what seizures are and their depiction in popular media can often affect this further. Seizures are a result of an unprecedented burst of electrical activity in the brain. When neurons misfire in collectivity, it can cause the body to react involuntarily, affecting behavior, sensation, and awareness. According to the CDC, the occurrence of two or more seizures leads to a diagnosis of epilepsy. Neurologists then try to determine their source and what the most effective method of management can be. Accurate and early diagnosis of epilepsy is crucial for its effective management.
Types of Seizures
Contrary to popular belief, the physical responses of a seizure are not always visible and it can be impossible to identify seizures if you don’t know what you are looking for. There is always a possibility that the seizure may cause a person to look confused, remain still, or shake involuntarily. Early detection of seizures is crucial to effectively manage them and prevent the condition from escalating. Hence, it is important to understand the various seizure types and the physical responses that can help you identify them.
Mainly seizures are classified as focal onset, generalized onset, and unknown onset.
1. Focal onset seizures start in a specific area of the brain and can be grouped as focal onset aware seizures or focal onset impaired awareness seizures. These can cause twitching, change in taste or smell, or feelings of confusion for the person experiencing them.
2. Generalized onset seizures on the other hand can affect both sides of the brain and include types such as atonic, tonic-clonic, and absence. While absence seizures can cause a person to blink rapidly or just stare into space, tonic-clonic seizures can make them cry out, fall to the ground, and have muscle spasms.
3. Unknown onset seizures either have regions or origins that cannot be identified or happen at times when no one notices them (e.g. when asleep at night). After a thorough understanding of symptoms and test results, the diagnosing neurologist will classify them as either focal or generalized onset seizures.
Seizure First-aid
Epileptic seizures may not always require a 911 intervention. If you are a family member or caregiver for someone with epilepsy, call 911 only if the individual:
1. Has multiple seizures
2. Has a seizure that lasts longer than 5 minutes
3. Doesn’t wake up after the seizure or has trouble breathing
4. Gets hurt during the seizure
5. Has other chronic conditions such as diabetes or a heart condition
If you notice a passerby experiencing a seizure, you can call 911. Until the medical professionals arrive, you can help them by doing the following things:
1. Check if they have a medical bracelet or any other medical documents on them (such as a seizure action plan) that can guide you
2. If not, stay with them until they are fully awake and let them know what happened without inducing fear
3. Be calm and help them calm down in case they panic. Be comforting and patient.
4. Alert their emergency contacts if possible.
5. In case they are shaking or experiencing muscle spasms, turn them on their sides to aid their breathing. Make sure the area is free of sharp or hard objects and put soft padding under their head.
Here is what you should NOT do in case someone around you experiences a seizure:
1. Hold the person down
2. Put something in their mouth since that can injure their jaw
3. Administer CPR
4. Offer food or water during the seizure
Read more about seizure first aid here.
Treatment and Management
Epileptic seizures can have a known cause – such as head injuries, or genes – or may occur without any underlying triggers. However, as mentioned above, in about 70% of the cases, seizures can be managed with medication, surgery, medical devices, and lifestyle changes. The medicine (that usually involves anti-epileptic drugs) and surgical devices help alter the electrical activity of the neurons. While surgeries are never the first plan of treatment, they are proposed by specialists only when it is completely safe to remove the part of the brain causing the seizures. Apart from that, lifestyle changes are recommended in order to avoid factors that may trigger seizures.
For instance,
1. Lack of sleep can impact the brain’s electrical and hormonal activity.
2. Stress can trigger abnormal activity in the brain.
3. Alcohol – when consumed in large quantities – can impact the central nervous system, especially during withdrawal.
Individuals diagnosed with epilepsy, regardless of whether they are traveling, working, going to school, or staying home, need to stick to a routine that keeps these elements at bay. It is best to have fixed timings for sleeping and taking medication, along with a routine therapy session to deal with stress and anxiety.
Apart from this, conditions such as cold or even dehydration, flashing lights, and menstruation that stress the body are also common triggers for seizures. That said, no two seizures are the same and it may take a while for every individual to identify their triggers. A neurologist can help make the identification of triggers easier which can be followed with a detailed seizure action plan for efficient management of the condition.
Seizures can occur at any time and knowing how to offer care can help save a life. If you are the patient’s primary caregiver, a neurologist will help you put a seizure action plan in place. The plan ideally focuses on the symptoms of the individual, their treatment plan, and first-aid to be provided in case of a seizure.
Each action plan is unique and it requires thorough discussions and assessment of symptoms to be designed. Once it’s in place it can help not just the family and friends of those diagnosed with epilepsy, but also the general public in case the individual is ever out by themselves. The plan can include allergies, medication, first-aid, emergency numbers, triggers, and so on. This can empower individuals with epilepsy to communicate their needs and be more autonomous.
Some Facts About Epilepsy
1. Around 90% of those diagnosed with epilepsy in low-income countries do not have access to proper care. This can be due to stigma, lack of medical facilities, or unavailability of competent medical professionals.
2. According to the CDC, as of 2015, almost 2% of the American population had epilepsy.
3. About 6 out of every 1000 children between 0-17 years old have epilepsy.
4. Epilepsy is not contagious.
5. About 50 million people around the world have epilepsy.
6. The oldest mention of epilepsy was in 4000 BCE.
People with epilepsy can hold all kinds of jobs, show up to work every day, have partners, build a family, take solo trips and achieve everything else they set their minds to. However, it all depends on the severity of the condition, the social support they receive, the accuracy of their diagnosis, their treatment, and lifestyle changes. Even though it seems complex, a patient with epilepsy can manage their condition efficiently. This is made easier with the help of seizure tracking and monitoring apps like the Inspyre by SmartMonitor as well as other devices available today. This National Epilepsy Awareness Month, take some time to educate yourself and those around you. Giving timely and appropriate care to a patient with epilepsy can greatly impact the quality of life and the way the condition progresses in that individual.