What is it Like to Have Epilepsy? | cannabisMD

What It’s Like to Have Epilepsy

What it 's liking living with epilepsy

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What is Epilepsy?

Epilepsy is a dysfunction of the central nervous system. With epilepsy, the activity in the brain becomes abnormal, with a disruption in the normal pattern of neurological activity. This can cause seizures, odd emotions, irregular behavior, and in some cases convulsions, and loss of consciousness.

Neurons in the brain work by sending electrochemical charges from one cell to another. These messages are called action potentials. This electrical activity given off by the brain activity is called a “brainwave.” Brain waves produce certain thoughts, feelings, and actions. They essentially control how we live and react to certain things. In epilepsy, a neuron may fire as many as 500 times per second. This is much faster than in a normally functioning brain. In some epileptic patients, this increased firing could happen only now and then. Others may be affected hundreds of times within a day.

Anyone can develop epilepsy at any time. The severity of seizures can vary from person to person, however, there are two main types of seizures.

  1. Generalized seizures: These seizures start all over the brain and can begin at the same time. These seizures can strike and spread so quickly that locating where the seizure began is virtually impossible. The abnormal electrical impulses occur over the entire brain, and cannot be pinpointed to a specific area. Children are more likely to experience generalized seizures than adults. For these seizures, surgery is often the only treatment option offered.
  2. Focal onset: Once known as partial seizures, these begin in one part of the brain (often a damaged part). These are the most common seizures experienced by those with epilepsy. When these seizures begin, the person does not lose consciousness and is aware of their surroundings. Some report feeling as if they are paralyzed and may not be able to communicate with those around them. Oftentimes when a focal onset seizure occurs the person will simply continue with whatever task they were doing. This seizure may be a sign that a bigger seizure involving unconsciousness is about to occur. Keeping comfortable by sitting or lying down is typically the only care that is needed.

As noted, how bad a seizure is can vary. They can range from a few seconds of unawareness to full on muscles spasms and twitching. Many people have no memory of a seizure happening. Some things may trigger seizures. These include:

  • A high fever
  • Very low blood pressure (such as in diabetes patients)
  • Brain damage from a stroke, surgery or head injury
  • Congenital problems
  • Withdrawal from drugs or alcohol
  • Infection in the brain
  • Parasites such as tapeworms

Epilepsy is the fourth most common neurological disorder in the world. It affects around 65 million people, with 3.4 million of them being in the United States. Though anyone can develop epilepsy, it is most common in young children and elderly people. Also, there are slightly more men than women who have epilepsy.

For some, death from epilepsy is a real concern. Sudden unexpected death in epilepsy (SUDEP) is a risk for some. Though death can occur from injuries caused by seizures such as drowning, other deaths are from epilepsy specifically. According to the CDC, death of 1.16 for every 1,000 epilepsy patients happen each year, though these estimates can vary.

Symptoms can also vary depending on the type of seizure being experienced.

What are the Symptoms of Epilepsy?

The main symptoms of epilepsy are seizures. These symptoms are different for everyone as differing seizures are experienced.

Generalized Seizures

There are six different types of generalized seizures:

Tonic-clonic seizures: This is the most severe type of seizure where the body will stiffen, jerk and shake. Loss of consciousness, and loss of bladder and bowel control could occur as well. These seizures usually last between 1-3 minutes. Longer than this and emergency services may be needed as breathing problems can occur.

Clonic seizures: Jerking muscle spasms that affect the face, neck, arms and legs often last several minutes with these seizures.

Tonic seizures: These seizures are most common in those who have Lennox-Gastaut syndrome, which is a type of epilepsy. These seizures will make the muscles in the arms, trunk or legs tense up, and typically only last about 20 seconds. Tonic seizures often happen while asleep, but if the person is standing up they may lose their balance and risk falling.

Atonic seizures: During these seizures, the muscles will go limp and the head may droop forward. Those who are prone to having these seizures will sometimes wear a helmet to protect their head due to the risk of falling. These usually last about 15 seconds, however some people can have several of these seizures one after the other.

Myoclonic seizures: These seizures can start in the same area of the brain as atonic seizures. Those who suffer from these may also suffer from atonic seizures as well. This seizure is more of a sudden jerk akin to being electrically shocked.

Absence seizures: These seizures don’t include any jerking or convulsing, but leave the person in an unresponsive state. They may not respond to attempts at communicating and will stare blankly. The eyes may roll back in the head. These usually only last a few seconds and are most common in young children.

Focal seizures

These have been put into three different groups: Simple focal, complex focal, and secondary generalized.

  1. Simple focal seizures can give the sensation of smelling or tasting something that isn’t there. Twitching in the arms, fingers and legs may occur. Dizziness, sweating, seeing flashes of light and nausea are common, though loss of consciousness is rare.
  2. Complex focal seizures strike the area of the brain that controls emotion and memory. This may lead to loss of consciousness while still looking awake. Things like gagging, laughing or crying can all be symptoms of these seizures which may take several minutes to go away.
  3. Secondary generalized seizures start in one part of the brain and then spread from there. They can look similar to generalized seizures, however unlike generalize seizures, these do not start on the entire surface of the brain, but rather begin at one point.

For most people, the cause of epilepsy remains unclear. There are many things that could lead to a seizure including brain injury, lack of oxygen to the brain, Alzheimer’s or dementia, infectious diseases or a very high fever. Genetics can even be a cause of epilepsy for some. The chance of getting epilepsy is about 1 percent. However, if you have a parent who suffers from epilepsy, the chance of developing the disorder goes up to 2 to 5 percent.

If you experience seizures it could be helpful to keep a journal of when these seizures happen so that your doctor can better diagnose and treat your disorder.

How is Epilepsy Diagnosed?

Depending on your medical history and current health, your doctor will determine what tests would be appropriate for you. It is always best to see a doctor as soon as you can after having a seizure as it could indicate a more serious illness.

Certain tests can be done to help diagnose epilepsy, but often certain tests are done to rule out any other illness that may be present.

A typical evaluation for seizures could include:

  • A neurological exam: Motor abilities, mental functions and behavior may all be tested in order to determine what type of epilepsy is present.
  • Blood tests: In order to rule out any infectious diseases that could be causing seizures, a doctor may do a blood test.
  • Electroencephalogram (EEG): During this test the doctor attached electrodes to the head with a paste. These electrodes will read and record brain activity. This can detect any abnormal brain wave patterns that are common in epilepsy patients even when not having a seizure. Doctors often ask the patient to do things that can trigger a seizure such as getting little sleep before the test. This can help the doctor better diagnose the disorder. High-density EEGs are often used to better determine the specific area in the brain that the seizures are affecting. This test has the electrodes spaced more closely together and is, therefore, a more precise reading.
  • Computerized tomography (CT) scan: These are x-rays of the brain that can detect if tumors, cysts or bleeding is present.
  • Magnetic resonance imaging (MRI): This test uses strong magnets and radio waves to give a detailed picture of the brain. This could help to detect lesions in the brain. A functional MRI may be recommended to see if there are any changes in blood flow to specific parts of the brain.
  • Positron emission tomography (PET): This scan involves injecting a low-dose radioactive substance into the veins to detect any abnormalities in the brain.
  • Neuropsychological testing: This helps doctors to evaluate your thinking, memory and speech, which can detect what area of the brain has been affected.

All of these tests help doctors to better diagnose epilepsy and rule out if there may be any underlying reasons for seizures. There is currently no cure for epilepsy, but certain medications and treatments are available to help manage the symptoms.

How is Epilepsy Treated?

Treatment for epilepsy can sometimes be tricky. Areas in which the seizures affect differ, as does the success rate on certain medications for certain patients. Generally, though, most people can manage their epilepsy symptoms.

Some treatments include:

  • Diet change: Some who don’t respond to medications often do well managing their symptoms with a ketogenic diet. This diet is high in fat and low in carbohydrates and has shown to be beneficial to those who have epilepsy.
  • Vagus nerve stimulator: This is a device that is put beneath the skin in on the chest. It can help prevent seizures by electrically stimulating a nerve that runs through the neck.
  • Anti-epileptic medication: There is a variety of medications that can be prescribed to control epilepsy symptoms. These must be taken as directed to be effective. In some people these medications can eliminate seizures, or reduce their frequency.
  • CBD and Cannabis: There is evidence that medical marijuana could help to treat epilepsy, specifically in children. The non-psychotropic cannabinoid, cannabidiol (CBD) has become increasingly popular in the treatment of epilepsy. A US study is currently being done on an epilepsy drug called Epidiolex, which is almost pure CBD oil.
  • Brain surgery: This is the most aggressive form of treatment for epilepsy and involves removing or altering the area of the brain affected by seizures.

Many people suffer from epilepsy, and it can be no small feat to live with the effects. There is, unfortunately, no current cure for epilepsy, however having an open line of communication with your physician can help you find the best treatment option. Treatments have varying results, but almost everyone can find something to help manage their symptoms so that they can regain their quality of life.

If you are experiencing seizures, notify a trusted physician as soon as possible to get the help you need.

Editorial Staff
Editorial Staff
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