Why I Started Speaking Up About My Epilepsy-term life

epileps stigmas are tough barriers to break through. There are people who might turn the other way when they witness someone having a seizure, people who might cringe at the sight of convulsing or losing control of bodily functions. But those people might not realize the person having a seizure is perhaps fighting for their life in the midst of it.

Silhouette of woman talking to man

I believe there’s a serious lack of empathy in the world we live in, a lack of willingness to find the root of the situation or the concern to ask the why. But then you have us, the rare percentage who will stand up and say there’s more to this story.

What is a stigma exactly? Merriam-Webster defines a stigma as “a set of negative and often unfair beliefs that a society or group of people have about something.” I think that describes it perfectly. The stigmas placed on those living with epilepsy have been horrible over a number of decades. A public seizure has sometimes been enough to label someone an outcast, put into a box and stigmatized. This is why it took so long for me to share that I have been living with epilepsy my entire life.

If you were not in my immediate family or a close family friend, you had no clue. I went public with my condition in 2013, when my seizures decided to make a grand re-entrance after I was seizure-free for 17 years. There’s a fear in sharing with others “I have epilepsy.” You see on television the jokes being made, you see movies of people having seizures and being treated badly. Even worse, you have those living with epilepsy who lose family, friends, loved ones because they cannot handle it or are embarrassed. There is fear about being denied jobs because of your condition. It makes you think twice about sharing. It’s exhausting!

When the decision was made to speak out about my epilepsy, I also decided I wanted to live beyond the stigmas. I wanted the world to know I am not “possessed,” epilepsy is not “contagious” and I am functioning just like anyone else. I don’t like the term “normal” because everybody has something going on with them. I wanted anyone who is living with any illness, including an invisible illness, to know it’s OK to share. Their story matters. Understand that not all seizures involve convulsions. I can stand right in front of you and have a seizure and you might never know it. If you feel you are too afraid to speak up, then I will speak up. No one should live in fear of being reduced by what society thinks is “OK.” Speaking up for yourself can ultimately save your life.

I did not ask for my epilepsy diagnosis at 3 weeks old. It’s just the way the cookie crumbled. Not one time did it stop me from being me. It did not stop me from achieving everything I have achieved in life. It motivated me to join the community and help others reach their full potential with epilepsy. It pushed me to educate others outside the community on what epilepsy is and what it is not. I will not stop until everyone around the world is living beyond the stigmas.



Boy with Lennox Syndrome communicates for the first time

Breaking the silence at 16 years old with the words ‘Hello Mum’

Voiceless in his life so far, a severely disabled 16-year-old is marvelling at being able to speak for the first time after breaking his silence with the words “Hello Mum”, using a digital communication aid.

James Walker is a rugby fan, likes pop music, lives with his family in Hull and has a girlfriend – Emily.

He has a condition which caused hundreds of daily seizures when he was a child. Known as Lennox-Gastaut Syndrome, it left him with a severe learning disability and without the ability to walk or move. Until recently, he also couldn’t talk.

He says it’s “funny” after being silent for so long that he can now communicate with friends and family and, as he puts it, “learn something exciting”.

James and Gina Walker

Using his eyes as a cursor he has learned to click on words and pictures to build sentences with his computer, a Tobii Eye Gaze. The system has thousands of stock words and phrases stored on it, things James might use daily. He is currently set-up to use about 60 words and hopes to increase this number over time.

A wheelchair user with limited arm movement, James’ communication was previously confined to the use of a BIGMack Switch which enabled his parents or teachers to record a single phrase about his day, but offered him no choice of phrase or alarm system.

“I like funny” he says when asked what his favourite type of conversations are and says a further “I like” about making his mum happy when he spoke his first words to her.

Gina Walker had never expected her son to be able to talk. When James’s teacher called her into the classroom recently, she didn’t know what it was about. She was unaware her son had been learning to use communication software at his special school, the Frederick Holmes School, because they had decided to keep it a secret.

“The first words he said were ‘Hello Mum’ and it was just so fantastic I cried,” she says.

“It’s mind-blowing hearing your son speak for the first time, even though it’s a computer generated voice.

“It made the hairs go up on the back of my neck and it’s brilliant being able to have conversations with him.”

James’s new computer gives him a level of vocabulary he previously didn’t have and, for the first time, his thoughts and opinions can be known.

Gina says: “He’s now told me he doesn’t like my singing, and his personality and sense of humour is coming out.”

When dressing him in the mornings, Gina used to show him two choices and go with the one he looked at. “But,” she says, “I had no idea if he was looking at it because he liked it or because he thought it was disgusting. Now he’ll say ‘I don’t like it’ and I’ll have to get him changed again.”

Using his new 60 word vocabulary, James gave us a brief interview

How the Eye Gaze worksImage copyrightGINA WALKER

What was the worst thing about being unable to talk? Don’t like

What is the best thing about talking? Learn something exciting

What did it feel like to speak for the first time? Funny

How did it make you feel to see your mum so happy? I like

What do you like being able to speak to your sister and friends about? I like funny

Does it help with your fits? Yes

“At the moment it’s so great to hear his voice that we’ll do anything for him,” says Gina.

There is presently even relish in the Walker household for sibling arguments now they are possible. “His sister Tash will put some music on the radio or TV and he tells her to turn it off which is great.”

James has mastered how to indicate when he is bored at school and, asked if he likes his new communication system, he replies: “I like, I need.”

As well as knowing words, the user also has to learn the context of what the words and phrases mean, so the amount someone can use the device depends on their cognitive ability.

Hector Minto from Tobii Dynovox, which developed the system , says: “They’ve given James core words to get him used to the words and stock phrases for specific situations such as wanting a drink, but the more exposure we can give someone improves their literacy.”

A member of the James Walker 100 team completes the Paris MarathonImage copyrightGINA WALKER
Image captionA member of the James Walker 100 campaign completes the Paris Marathon

James’s mother says that, now he is able to communicate more effectively, it has also improved his health.

Susceptible to many seizures a day – sometimes with just one or two minutes between them – James did not have the ability to alert his parents or teachers to an on-coming fit.

An operation to install a device which flushes his brain with electricity every three minutes has helped reduce the number of seizures he was having and coincided with James learning to use his new voice.

Gina says he now tells them to either “come help” or “come here” if he feels a seizure is about to happen. “Every seizure is dangerous,” she explains, “so if I can stop them from being full blown it’s worth it’s weight in gold.”

Gina says prior to having the device, he would sometimes scratch his neck, which they now understand to be him telling them something was wrong. At the time, however, they weren’t aware he had a high enough level of cognitive ability to determine this, and so were unable to interpret it as a call for help.

Now that James has the ability to alert his mum, she can do something about it. She uses a nerve stimulation magnet on him to send mild electrical pulses to calm the irregular brain activity which triggers his seizures.

The computer system brings other kinds of independence too. It enables James to control his bedroom lights and TV amongst other possibilities. Minto says some people now live their lives entirely by using their eyes to control a computer. “They let their carers in and out, they live alone at night, and they run their emails.”

James Walker 100 cyclistsImage copyrightGINA WALKER
Image captionMany members of the James Walker 100 team took to their bikes to raise funds for the Eye Gaze

Minto claims his company’s system is 10 or 20 times faster than that which Prof. Stephen Hawking famously uses. He says the professor communicates one letter at a time.

At a cost of £12,000, a system like the Eye Gaze is a significant investment. Those who can prove their cognitive ability can apply for NHS funding, but for those like James who are unable to complete a test because there is no recognised method of “proving his potential, the computer must be self-funded.

Family friend David Hoyle, who has a daughter with epilepsy, said he decided he had to get James one of the devices after he heard about it and created the James Walker 100 involving the 100 people he thought would most want to help.

The team carried out a variety of fundraising efforts from running the Paris Marathon to charging friends and family for dinner.

Hoyle says: “One of the worst things about having a poorly child is that they cannot communicate when they are not feeling very well or need something, so, that alone is worth £12,000.”

The team exceeded their target and, as well as getting one for James, were able to buy five more of the devices for his school.

Minto says there is a hope that the “catch-22” situation where you have to prove cognitive ability to get funding for a device could change in the future, meaning that acquiring the ability to communicate may not have to be reliant on charitable money. He adds that the company has been testing eye-tracking devices to demonstrate how someone could hold their eyes on a symbol and follow instruction – he believes this should negate the need for a cognitive test.

As her son gets to grips with his new found voice Gina says: “James has never been able to make a choice, ever, and now he’s able to.”

She says that she wishes her son had been given the device sooner because he has been “trapped for 16 years” She finds it upsetting that many parents don’t even know this kind of technology exists.

“I don’t think people realise how big a deal communication is. It’s been a light bulb moment.”



Surprising15 things you only know if you have epilepsy

15 things you only know if you have epilepsy

I was diagnosed with epilepsy out of the blue at the age of 21 during my final year at university.

It changed my life dramatically over night and seizures continue to interrupt my life regularly.

But it hasn’t stopped me from always seeking new challenges including further studies.

There are some things I can no longer do that can make everyday life complicated at times.

Epilepsy has prompted many changes but learning to adapt and keeping focused on my ambitions helps me to continue moving forward.

Here’s 15 things you only know if you have epilepsy.

1. We don’t all drop to the floor and shake

There are over 40 different types of seizure.

A person with epilepsy may experience one or multiple types thanks to the condition.

2. Dignity ceases to exist

Anyone could end up seeing anything, at any time.

Seizures can occur in any situation.

Also, you’d be surprised how many ways there are to administer emergency medicine.

3. Someone knows exactly where you are at all times

Think you’re going on a secret date? 10 people know.

4. Your phone connects to hospital wifi automatically

Whether through routine appointments or emergency stays you will be visiting hospital multiple times a year, a month, a week.

5. We’re not ‘epileptic’

We are people with epilepsy and, while we’re on the subject of terminology, we don’t have ‘fits’, we have seizures.

6. You will receive funny looks

When someone gives you a strange look it becomes habit to automatically assume you had some sort of smaller seizure.

Where consciousness is impaired, the person experiencing a focal seizure may be totally unaware they have had one. Funny looks sometimes offer a clue.

7. Everything in life suddenly becomes a health hazard

Childproofing and seizure proofing are one and the same. Solitary, relaxing bubble baths that you dream about all day are simply out of the question.

8. We’re not all sensitive to flashing lights

Yes, some seizures can be triggered by strobe frequency in lighting, however only a small percentage of people with epilepsy (about 3%) are photosensitive.

9. We’re not all born with it

Epilepsy can affect anyone at any time in their lives. There are many different causes but for most people who have seizures a cause cannot be found.

10. No, we cannot swallow our tongues

It is impossible to swallow your tongue so unless you want your fingers bitten off, don’t try putting anything in anyone’s mouths during a seizure.

11. We still live life to the full

Jobs, responsibilities, education and family amongst everything else is possible despite experiencing seizures.

Different severities of epilepsy may need different adaptations but you can do it.

12. Looking like you’ve been in a punch-up is normal

Seizures, especially when they involve a loss in consciousness, can involve injuries.

People will eventually stop being surprised when you turn up with various injuries and just carry on like nothing’s happened.

13. Epilepsy is far from rare

In the UK alone there are more than 600,000 people living with epilepsy.

While there is no immediate cure, in some (but by no means all) seizures can be managed with medication, surgery or the Ketogenic diet.

14. Becoming the expert patient

You start to believe that you have some sort of medical degree when you’re asked to explain your condition.

15. ‘But you don’t look like you have epilepsy…’

Seriously, what is a person with epilepsy supposed to look like?



Epilepsy by the Numbers: Facts, Statistics, and You

epilepsy introepilepsy intro

Epilepsy is a neurological disorder caused by unusual nerve cell activity in the brain. Each year, about 150,000 Americans are diagnosed with the central nervous system disorder that causes seizures. Over a lifetime, one in 26 people will be diagnosed with it.

 Seizures can cause a range of symptoms, from momentarily staring blankly to loss of awareness and uncontrollable twitching. Some seizures can be milder than others, but even minor seizures can be dangerous if they occur during activities like swimming or driving.

Seizures can be divided into two main types: Focal (partial) seizures and generalized seizures.

Focal seizures can be further divided into two types: simple focal seizures and dyscognitive focal seizures. Simple focal seizures, also called simple partial seizures, affect only one area of the brain. Memory and cognitive abilities remain unimpaired, but a partial seizure might lead to temporary paralysis, visual changes, or difficulty with simple movements. Less than 15 percent of people with epilepsy have simple focal seizures.

A dyscognitive focal seizure only affects a specific part of the brain. Unlike focal seizures, a dyscognitive focal seizure can cause mental confusion, loss of memory, and loss of awareness during the seizure. People having a complex focal seizure may appear unaware or dazed. More than a third of patients with epilepsy have dyscognitive partial seizures.

The second main type of seizure is generalized seizures. Generalized seizures divide into several subtypes. These include:

  • tonic seizure
  • clonic seizure
  • myoclonic
  • absence seizure
  • atonic seizure
  • tonic-clonic seizure

More than 30 percent of people with epilepsy experience generalized seizures.


The area of the brain that is affected by a seizure will determine the symptoms and sensations the seizure causes.

Focal Seizures

This type of seizure affects only a portion of the brain. For that reason, it’s also sometimes called a partial seizure. Focal seizures have two main categories: simple focal seizures and dyscognitive focal seizures.

Simple focal seizures typically cause few symptoms. The symptoms that this type of seizure causes can be easily mistaken for another condition and overlooked. People may experience slightly shifted emotions or moods, involuntary jerking and twitching in body parts, and unusual sensory experiences, such as seeing flashing lights. Simple focal seizures do not cause memory loss.

Dyscognitive focal seizures cause a loss of consciousness or awareness. People who experience this type of seizure will not be aware of what occurred during the seizure. This type of seizure often causes unusual, repetitive movement. These movements might include hand rubbing, swallowing, walking in circles, or chewing.

Generalized Seizures

All types of generalized seizures affect both sides of the brain. Generalized seizures can be divided into six groups:

Absence seizures. This type of seizure leaves a person briefly unaware of their surroundings and actions. Most people who experience an absence seizure stare blankly until the seizure is over. Some will produce a subtle, repetitive body movement. Absence seizures are also called “petit mal” seizures.

Atonic seizures. This type of seizure causes loss of muscle control. A person experiencing an atonic seizure may suddenly fall or collapse. That’s why this type of seizure is sometimes called a drop seizure.

Clonic seizures. People who have clonic seizures will routinely experience rhythmic, repeated jerking movements. The neck, face, and arms are commonly affected.

Myoclonic seizures. This type of seizure causes sudden jerking movements or twitches. These movements commonly happen in the arms and legs.

Tonic seizures. When this seizure begins, the muscles in the affected area of the body will tighten and stiffen. The arms, legs, and back are commonly affected. Most people who experience a tonic seizure will fall to the ground because of their muscle rigidity.

Tonic-clonic seizures. Commonly called “grand mal” seizures, this type of seizure causes loss of consciousness, as well as violent shaking and body stiffening. Some people will lose control of their bladder and may bite their tongue during the seizure.



One percent of Americans will develop epilepsy in their lifetime. About 2.5 to 3 million people in the U.S. have epilepsy. Additionally, about one in 26 people will experience recurring seizures.

Epilepsy can begin at any age. Studies have not identified a prime diagnosis time, but the incidence rate is highest in children and older adults. Luckily, some children with seizures will eventually grow out of them.

Ages Afflicted

According to the Centers for Disease Control and Prevention, about 2.3 million American adults have epilepsy. More than 467,000 children have been diagnosed with the central nervous system disorder.

Additionally, almost 150,000 people in the U.S. develop epilepsy every year.

Ethnicity Specifics

Researchers are still unclear if ethnicity plays a role in who develops epilepsy. Studies suggest, however, that non-Latino whites are more commonly affected by generalized epilepsy than people of African-American descent.

This finding points to the possibility that our ancestry may help determine who develops epilepsy.

Gender Specifics

Overall, no gender is more likely to develop epilepsy than the other. However, it’s possible each gender is more likely to develop certain subtypes of epilepsy. For example, a study found that symptomatic epilepsies are more common in men than women. Cryptogenic seizures (seizures with no known cause) are more frequent in women.

Risk Factors


These risk factors give you a higher chance of developing epilepsy:

Age. Epilepsy can begin at any age, but more people are diagnosed at two distinct phases in life: childhood and after age 60.

Brain infections. Infections, such as meningitis, inflame the brain and spinal cord and can increase your risk for developing epilepsy.

Childhood seizures. Some children develop seizures not related to epilepsy during their childhood years. Very high fevers may cause these seizures. As they grow older, some of these children may develop epilepsy.

Dementia. People experiencing a decline in mental function may also develop epilepsy. This is most common in older adults.

Family history. If a close family member has epilepsy, you are more likely to develop this disorder.

Head injuries. Previous falls, concussions, or injuries to your head may cause epilepsy. Taking precautions during activities such as bicycling, skiing, and riding a motorcycle can help protect your head against injury and possibly prevent a future epilepsy diagnosis.

Vascular diseases. Blood vessel diseases and strokes can cause brain damage. Damage to any area of the brain may trigger seizures and eventually epilepsy. The best way to prevent epilepsy caused by vascular diseases is to care for your heart and blood vessels with a healthy diet and regular exercise. Also, avoid tobacco use and excessive alcohol consumption.


Having epilepsy increases your risk for certain complications. Some of these complications are more common than others.

The most common complications include:

Car accidents. Many states do not issue driver’s licenses to people with a history of seizures until they have been seizure-free for a specified period of time. A seizure can cause loss of awareness and affect your ability to control a car. You could injure yourself or others if you have a seizure while driving.

Drowning. People with epilepsy are 15 to 19 times more likely to drown than the rest of the population. That’s because people with epilepsy may have a seizure while in a swimming pool, lake, bathtub, or other body of water. They may be unable to move or may lose awareness of their situation during the seizure. If you swim and have a history of seizures, make sure a lifeguard on duty is aware of your condition. Never swim alone.

Emotional health difficulties. Unfortunately, the emotional toll of epilepsy may be too great for some people to bear alone. Depression, anxiety, and suicidal thoughts and actions are possible complications.

Falling. Certain types of seizures affect your motor movements. You may lose control of your muscle function during a seizure and fall to the ground, hit your head on nearby objects, and even break a bone.

Pregnancy-related complications. Women with epilepsy can get pregnant and have healthy pregnancies and babies, but extra precaution is needed. Some anti-seizure medications can cause birth defects, so you and your doctor need to carefully evaluate your medicines before you plan to get pregnant.

Less common complications include:

Status epilepticus. Severe seizures, ones that are prolonged or happen very frequently, can cause status epilepticus. People with this condition are more likely to develop permanent brain damage.

Sudden unexplained death in epilepsy (SUDEP). Sudden, unexplained death is possible in people with epilepsy, but it is rare. Only two to 18 percent of people with epilepsy die from SUDEP. Doctors do not know what causes SUDEP, but one theory suggests heart and respiratory issues may contribute to the death.

Tests and Diagnosis

Diagnosing epilepsy requires several types of tests and studies to ensure your symptoms and sensations are the result of epilepsy and not another neurological condition. The tests doctors most commonly use include:

Blood tests. Your doctor will take samples of your blood to test for possible infections or other conditions that might explain your symptoms. The test results might also identify potential causes for epilepsy.

EEG. An electroencephalogram (EEG) is a tool that most successfully diagnoses epilepsy. During an EEG, doctors place electrodes on your scalp. These electrodes sense and record the electrical activity taking place in your brain. Doctors can then examine your brain patterns and find unusual activity, which may signal epilepsy. This test can identify epilepsy even when you’re not having a seizure.

Neurological examination. As with any doctor’s office visit, your doctor will want to complete a full health history. They will want to understand when your symptoms began and what you have experienced. This information can help your doctor determine what tests are needed and what types of treatments may help once a cause is found.

CT scan. A computed tomography (CT) scan takes cross-sectional pictures of your brain. This allows doctors to see into each layer of your brain and find possible causes of seizures, including cysts, tumors, and bleeding.

MRI. Magnetic resonance imaging (MRI) takes a detailed picture of your brain. Doctors can use the images created by an MRI to study very detailed areas of your brain and possibly find abnormalities that may be contributing to your seizures.

fMRI. A functional MRI (fMRI) lets your doctors see your brain in very close detail. An fMRI allows doctors to see how blood flows through your brain. This may help them understand what areas of the brain are involved during a seizure.

PET scan. A positron emission tomography (PET) scan uses small amounts of low-dose radioactive material to help doctors see your brain’s electrical activity. The material is injected into a vein and a machine can then take pictures of the material once it has made its way to your brain.


Seventy percent of people with epilepsy can find ease and relief from their symptoms with the most common forms of treatment. Treatment might be as simple as taking an anti-epileptic medication. Others may require more invasive treatments. The most common treatments for epilepsy include:

Medication. Anti-epileptic medicines are very effective for most people. It’s also possible you will be able to discontinue taking these medicines after a certain period of time.

Surgery. In some cases, imaging tests can detect the area of the brain responsible for the seizure. If this area of the brain is very small and well defined, doctors may perform surgery to remove the portions of the brain that are responsible for the seizures. If your seizures originate in a part of the brain that cannot be removed, your doctor may still be able to perform a procedure that can help prevent the seizures from spreading to other areas of the brain.

Vagus nerve stimulation. Doctors can implant a device under the skin of your chest. This device is connected to the vagus nerve in the neck. The device sends electrical bursts through the nerve and into the brain. These electrical pulses have been shown to reduce seizures by 20 to 40 percent.

When to See a Doctor

A seizure can be very scary, especially if it’s happening for the first time. Once you have been diagnosed with epilepsy, you will learn to manage your seizures in a healthy way. However, a few circumstances may require you to seek immediate medical help. These circumstances include:

  • injuring yourself during a seizure
  • having a seizure that lasts more than 5 minutes
  • failing to regain consciousness or not breathing after the seizure ends
  • having a high fever in addition to the seizures
  • having diabetes
  • having a second seizure immediately after a first
  • a seizure caused by heat exhaustion



Absence Seizures In Children – Everything You Should Be Aware Of

Absence Seizures In Children

Are you concerned about your child’s frequent ‘daydreaming’ episodes at school? Has your child begun to suffer from twitching movements that last a few seconds? If you said yes, your child may be suffering from absence seizures. What are absence seizures in children? Why do they occur? Read our post and learn all about the condition here.

What Are Absence Seizures?

Absence seizures are episodes of sudden consciousness loss with characteristic ‘vacant’ stare spells, which may last for 10-20 seconds. These are more common in children than adults. Usually, children who suffer from absence seizures stop having any seizure episodes during their teen years. But it can last well into their adulthood

Absence seizures usually begin with children in the ages between 4 to 12 years. Children with absence seizures may also suffer from other seizures, which may involve muscle twitching and weakening of muscles. Absence seizures are also known as petit mal seizures.

Some Facts about Absence Seizures:
Females are more susceptible to absence seizures even though males are at a greater risk of all other seizures.
Children who suffer from febrile seizures (seizures due to fever) are at a higher risk of developing absence seizures.
Children most often get seizures when they are bored or not engaged in activities they find enjoyable. Rarely children engaged in fun activities suffer from absence seizures episodes.
What Causes Absence Seizures In Children:
Experts believe that absence seizures occur due to abnormalities in the brain’s electrical processes. These irregularities change the electric nerve transmissions and it leads to a repetition of the signals. Absence seizures episodes can also occur due to hyperventilation (fast breathing) or flashing lights.

The basis of absence seizures is hereditary. Most children with absence seizures usually have a family history of the same type of seizure. Children who have siblings with absence seizures have greater chances of developing the condition as well.

Symptoms Of Absence Seizures In Children:
The most common identification sign of absence seizure is the ‘vacant’ stare. Children who suffer from absence seizures may appear to be daydreaming or simply staring into nothingness. Other symptoms include:

Children who suffer from absence seizure episodes stop doing any activity they might have been engaged in when the seizures appear.
Children who suffer from absence seizure episodes resume these activities again without any knowledge of their seizures.
Fluttering of the eyelids.
Chewing-like movements

Types Of Absence Seizures In Children:
There are two categories of absence seizures or petit mal seizures in children. [3]

Typical Absence Seizures:
Symptoms of typical absence seizures are fumbling hands, fluttering eyelids and staring spells lasting for about 10 to 20 seconds. For now, the only cause of typical seizures is genetics.

Atypical Absence Seizures:
The main difference between the two is that atypical seizures last longer than typical ones. Atypical seizures may also include a confused state after the cessation of the seizures. Atypical seizures begin slowly and not as suddenly as typical seizures. Other than hereditary reasons, atypical seizures may also occur due to injuries or from health complications arising from kidney or liver problems.

Diagnosing Absence Seizures In Children:
The symptoms of the seizures give a fair indication of the existence of absence seizures. To confirm the diagnosis doctors may use one or all of the following methods. [4]

Electroencephalography (EEG):
For typical seizures, an EEG is adequate for diagnosing the problem. For an accurate diagnosis, doctors may ask patients to breath rapidly to induce absence seizures. The EEG can capture the differences in brain scans as they stand during seizures and in the absence of seizures.

Magnetic Resonance Imaging (MRI):
In rare cases, the doctors may also go for brain scans using MRI if they need more details about the neuron activities. Brain scans may also help doctors to look for other problems such as strokes or tumors that may also cause seizures.

Depending on the condition of the patient or the symptoms of the seizures, doctors may also conduct blood tests and check the state of the cerebrospinal fluid, liver or kidneys.

Treating Absence Seizures In Children:
The treatment for absence seizures must occur under a doctor’s supervision. If your child hasn’t had a single episode of absence seizures for two years after the start of the treatment, the doctor may gradually reduce the dosage and eventually stop the medicines altogether. Most patients with absence seizures also suffer from other types of seizures. Therefore, the treatment plan for seizures includes one or many drugs used to control and treat the conditions.

Depending on the severity of the condition, doctors usually prescribe the following drugs.

Ethosuximide: It is the most common drug for the treatment of absence seizures.
Valproic Acid: You can use it for children in some cases.
Others: Lamotrigine is not as effective for seizure treatments, but doctors consider the drug as it has fewer side effects. Acetazolamide, Clonazepam, Acetazolamide, and Epilim are other drugs that promote the treatment of absence seizure.
Managing Absence Seizures in Children:
Most children with absence seizures recover from the condition as they get old. But they have greater chances of developing other types of seizures. About 10 percent of children with absence seizures may also suffer from other types of seizures in their adolescent years.

Therefore, it is important for parents to help children manage their symptoms well. Some kids with absence seizures may develop behavioral problems, learning difficulties and an inclination for social aloofness.

Always pay attention to complaints from your child’s teachers at school that pertain to ‘daydreaming’ or ‘often lost in thoughts’. He may be suffering from absence seizure episodes. Prompt diagnosis of the condition is often the first step in helping him manage the seizure spells.
Talk to the teachers and counselors at his school to help them understand the condition and any action steps they can take for future seizure episode he may suffer from during the school hours.
Lifestyle changes such as adequate sleep, fun physical activities, a healthy diet and a stress-free environment at home also help manage petit mal seizure in children.
Absence seizures may complicate a child’s life due to the sudden appearance of symptoms and the prolonged treatment plans. But with lifestyle changes and medicines, it is possible to manage the condition.

Does your child suffer from absence seizures? How do you help him manage the condition? Please share your experiences with us here.



5 Symptoms That Precede My epilepsy

blurry vision of a mall

Because epilepsy doesn’t have the awareness it deserves, few people know or understand the symptoms to watch for before I have a seizure because it doesn’t get talked about. The number one question I get asked is, “What do I do if you have a seizure?” The second is, “How will I know if you’re going to have one?” These are my symptoms before I have a seizure.

1. Blank stare: If I start to have a blank stare, that’s a red flag for me. If I’m unresponsive, it’s even worse. Be alert and on your toes. I’ll either come out of it asking what just happened or I’m about to have a seizure.

2. Overheating: People with epilepsy like me tend to not be able to stay out in hot weather conditions for too long. So if you’re out on a hot day with me, be mindful of me getting dehydrated. If I start to complain about being too hot, dizzy, lightheaded, nauseated, etc., help me get home before a seizure happens.

3. Tiredness or lack of sleep: Lack of sleep can lead to a seizure for me. It’s important for me to get at least eight hours of sleep a day. Sometimes it is hard.

4. The flu: When I was a child, I used to have seizures every time I would catch the flu.

5. Shaking/twitching: Random twitches or shaking can sometimes come before a seizure for me. Sometimes I will be asleep and wake up because I got electric shocks sent to my brain that shook me and woke me up, but it wasn’t a seizure. So I have to be on toes at all times when shakes like that come because I don’t know if it’s a seizure coming or if I’m just shaking.

These are the symptoms that go unnoticed for me because epilepsy often goes without being talked about. But together we can all change that one voice at a time!



How Frankincense Oil is Proven To Work At Reducing Seizures and Those With Epilepsy

When I feel a seizure coming on, I smell frankincense and can sometimes stop the seizure before it starts. I carry it [Frankincense Essential Oil] with me everywhere I go.”Sarah T

Seizures can happen anywhere, anytime, and sometimes without notice. A seizure is a sudden malfunction in the brain that causes someone to collapse, convulse, or have another temporary disturbance of normal brain function, often with a loss or change of consciousness. Many things can cause seizures, low blood sugar, head injury, fever, and drug overdose are just a few.

Frankincense essential oil is the oil of choice for helping with seizures. It aids the oxygenation of the blood going to the brain. When the brain is able to absorb more oxygen, healing increases.

The key to frankincense essential oil’s success is its molecular makeup. The make-up includes Sesquiterpenes which can cross the blood/brain barrier. Frankincense also provides a calming and centering effect on the brain.

Many have found that Frankincense essential oil has been a great help with seizures.


Sarah T states:

“Shortly into my pregnancy, I experienced a grand mal seizure. Almost a year later doctors diagnosed me with complex secondary epilepsy. Basically, I lose focus and feel funny. I’ve been having seizures since I hit puberty at 14, and I just didn’t know what they were. I do not lose consciousness or anything, I just space out and go into a ‘dream world’. They last about two minutes, and I tend to have several over a short period of time. I used to have them all the time, and they got worse after my grand mal seizure. A friend of mine invited me to an essential oil class where I learned that frankincense can be used to help manage epilepsy. I figured it was worth a shot, so I ordered some. I should mention that I have never taken prescription drugs to control my seizures because I have either been pregnant or nursing since I got diagnosed and I do not want to risk the health of my children. Since I started using Frankincense, first topically, and now internally, I’ve noticed a huge difference in the frequency and severity of my seizures. I’ve gone as long as 30 days without one since I started using essential oils


This mother used it on her son Bo with great results.

“Bo’s seizures spiked, and suddenly he was having over 100 seizures a day. He could not sleep at night because the seizures continually woke him up. Then he would have more seizures because he was exhausted. We were stuck in a vicious cycle. His nurse told us to increase his dose of seizure medication, but the seizures were still continuing. Then a very special friend told me a friend of hers used Frankincense to control her son’s Epilepsy. She instructed me to put 4 drops of Frankincense on the crown of Bo’s head a couple of times a day. Within 3 days his seizures were reduced by about half, and he was able to sleep finally.”

Another mother, Suzy, found it relieved her son.

“My son thought a seizure was coming on, so he put some Frankincense essential oil under his tongue. The pulsating sensation stopped, and he did not have a seizure.”

There are no studies that have been done to prove frankincense essential oil’s effectiveness in preventing or lessening seizures of any kind. However, many individual testimonials state it can help.

If modern pharmaceuticals are not working, why not give Frankincense essential oil a try?

Important Note: Some essential oils and natural remedies can affect seizure medication. Make sure to educate yourself and consult a doctor before trying another form a treatment. When deciding to use essential oils, make sure to use only 100% Therapeutic Grade Essential Oils from a reputable supplier.



Is It and How Epilepsy Effect On Sexual Life

Many people with epilepsy have fulfilling relationships with a partner. However, epilepsy may affect relationships for some people, and problems with sex are common for both men and women with epilepsy. There are various ways to manage these problems and find support.

Relationships and epilepsy

Seizures are a physical symptom, but having epilepsy can mean far more than the physical impact of seizures, for the person with epilepsy, and their partner.

The wider impact of seizures

Many people manage seizures well, but seizures can be unpredictable, frightening or shocking, both for the person having seizures and for those who see them. It may be hard to deal with the memory of a seizure, what the person with epilepsy looked like, how you both felt, or with the fear that it might happen again.

Some people may not want to be alone with their partner in case they have a seizure, or fear being in the same place where it happened before. If this was in a private place such as in bed or during time alone together, this can put strain on a relationship. It may be hard to face this or talk about it, as you may worry that how you feel might upset your partner. Talking it through with someone you trust may help.

Supporting each other

Everyone is different, and there may be many ways to help deal with issues around epilepsy. Many people with epilepsy do not need a carer, but some may need care and support sometimes, particularly when they have a seizure. Supporting someone with epilepsy may include giving them lifts, prompting them to take medication, or sharing activities to help them keep safe. Supporting someone in this way can bring you closer together, but some people with epilepsy may feel this affects their independence. It may help to think that everyone needs support with something, whether they have a long-term condition or not. It can also be important to make time to focus on your relationship separately from giving and receiving support.

New relationships and experiences

A new relationship can be both exciting and daunting for anyone. If you have epilepsy, you may wonder how to tell a new partner about epilepsy and how they might react. The way other people have reacted in the past might also affect how you tell new people. Seizures can disrupt plans and activities, and for some people, having epilepsy affects their confidence.

However, some people find new relationships or interests through changes they make to their lifestyle because of epilepsy. New experiences could also strengthen an existing relationship through gaining confidence, sharing new things, and discovering what is important to you and to your partner.

Talking about epilepsy

Some people find that talking about epilepsy brings them closer to their partners. But sometimes one person in a relationship wants to talk about epilepsy and the other does not. For some people, epilepsy may feel like an unwanted intruder that has changed how things used to be. Talking about epilepsy may be upsetting, or you may feel that you can no longer talk about epilepsy because your partner has ‘heard it all before’.

Being honest about your feelings may take courage, but your partner may be relieved to be able to share how they feel too. Some people use humour to help to deal with, or avoid, difficult feelings. Others may want to keep a balance between talking about epilepsy and other important things as well.

Our confidential helpline is for anyone who wants to talk about epilepsy.

Relationship support for couples

Some couples may chose to seek professional support for their relationship in the form of couples counselling. To find a therapist, visit the British Association for Counselling and Psychotherapy (BACP) (opens new window) or the Counselling Directory (opens new window).

Pathway to love and happiness

Sex and epilepsy

Whether or not you are sexually active, sexual issues can be important at any time of life. Many people with epilepsy do not have specific issues with sex that are caused by their epilepsy. For some people however, epilepsy may have an effect on their sex life.

Sexual desire and arousal

Sexual desire (or ‘sex drive’) is the feeling that you want to have sex, and sexual arousal means the physical changes in the body that help you to have sex, such as getting an erection.

There are many possible reasons why sexual desire or arousal are reduced at times, and this is common in both men and women. Stress, tiredness, illness, alcohol, depression, anxiety, or having a lot on your mind, can all affect sex. Viewing problems with sex as a personal failing or weakness may put more pressure on you, and stop you seeking help for the problem



6 Things You Should Know About Epilepsy Why Do People Have Seizures?

If you don’t know anybody who has epilepsy, you probably tend to think of it in one form: big, dramatic seizures (usually brought on by flashing lights or brain tumors) that involve bodily spasms, loss of control, and falling out of consciousness. The reality, though, is much more complex. For one, grand mal seizures, as those used to be called (they’re now known as tonic-clonic seizures), are less common among epileptic sufferers than you might think; the diversity of seizure types is big. And for another, the causes of seizures are often more opaque than obvious. A minority of seizures are connected to flickering lights, and many epileptic sufferers don’t know why theirs happen at all.

It’s estimated that about 50 million people worldwide have some form of epilepsy, which makes the importance of understanding seizures pretty vital. If you encounter anybody having a seizure, there are some crucial first aid tips to know. Don’t put anything near their mouth; lie them on their side, in the recovery position; protect them from anything nearby that might hurt them if they collide with it; and stay with them until they’re awake and able to register their surroundings again. Some epilepsy sufferers, as we’ll discover, have some forewarning that a seizure is about to happen and will attempt to get themselves to a safe place. Either way, though, try to time the seizure; if it lasts for longer than three minutes, get emergency services on the phone, as that’s abnormal and the person needs medical attention immediately.

Image result for Why Do People Have Seizures? 6 Things You Should Know About Epilepsy

Here are six things you should know about epileptic seizures, explained.

1. They’re Caused By Electrical Disruption In The Brain

At any point, your brain is a hive of electrical activity: electricity is the method through which cells communicate, which is why we can measure brain activity through electrodes on the skull that pick up on electrical pulses. In an epileptic’s brain, that electrical activity suddenly surges, like a power surge that puts out all the lights in your house. The Epilepsy Society explains that the surge appears to happen when large amounts of neurons have disrupted activity simultaneously, but we’re still in the dark (pun intended) about how precisely the mechanism behind seizures works. We know, from observing epileptic seizure brain activity as it happens, that it involves “sudden, disorderly discharges of interconnected neurons in the brain that temporarily alter one or more brain functions,” as the Society of Neuroscience defines them; but how they happen and why is still unclear.

2. … But Seizures Can Also Be A Total Mystery

In a large amount of epilepsy sufferers (the Mayo Clinic estimates that the number may be about half), no real cause can be found for their epileptic condition. In others, the causes tend to be divided into two:The Epilepsy Society outlines them as genetic, where a parent has epilepsy or something abnormal has happened in the person’s genetic makeup, and symptomatic, where the seizures can be traced to something concrete like a brain injury, infection, strokes, tumors, or other issues affecting the physical brain. Genetics aren’t as indicative as you might think, though; statistics indicate that only two in 100 children with epileptic fathers develop epilepsy themselves, while five in 100 children with epileptic mothers will develop it.

3. There Are Two Distinct Types Of Seizures

Within the diagnosis of epilepsy, there’s quite a lot of complexity. There are two “types” of epileptic seizure, partial (or focal) and generalized, and within those two there’s even more diversity. Focal seizures, according to the National Health Service, are so-called because they hit “focal points” in the brain, disabling small areas of it, while generalized seizures hit most or all of the brain matter. Focal seizures can be either simple or complex, involving either a fully-conscious experience or one in which you “black out,” respectively.

It’s generalized seizures that have the most variety, though. They can take the form of absence seizures, where you essentially disconnect from the world around you for up to 15 seconds; myoclonic seizures, which leave you conscious but prompt your body to jerk rapidly; atonic seizures, where you suddenly drop to the floor because all your muscles relax; and the one that fits the public perception of epilepsy, the tonic-clonic seizures. Epilepsy organization Epilepsy Action explains that tonic and clonic reference two different stages in the seizure. “During the tonic phase, you lose consciousness, your body goes stiff, and you fall to the floor. You may cry out,” they say. “During the clonic phase, your limbs jerk, you may lose control of your bladder or bowels, bite your tongue or the inside of your cheek, and clench your teeth or jaw. You might stop breathing, or have difficulty breathing, and could go blue around your mouth.” Some people have tonic phases without clonic ones.

4. Triggers Don’t Cause Epilepsy, But May Make Seizures More Likely

The flashing light warnings on video games don’t actually cause epileptic conditions in people who’ve never had them before; playing too much of them won’t cause epilepsy. Triggers like the flashing lights also aren’t universally problematic for epilepsy sufferers; what might set off a seizure depends heavily on the individual. Epilepsy Action’s list of the most common ones includes not taking anti-seizure medication, missing meals, having your period, stress, alcohol, and tiredness. Only people with photosensitive epilepsy are sensitive to flashing lights, andthey make up only three percent of all epilepsy sufferers.

5. Most Seizures Have A Beginning, Middle, And End

In the literature, the middle and end of seizures are called the ictal, and post-ictal phases. The ictal part is when the seizure is actually happening, up until the end of the symptoms; the post-ictal phase is what happens afterwards (some people immediately fall asleep, others are groggy, others can get on with their day immediately). For some, though, there’s a distinctly obvious “beginning” phase too, with what the Epilepsy Foundation describes as either “prodrome” or “aura” phases. Prodromes are alterations in feeling or behavior leading up to a seizure that can warn that one’s on the horizon in the next day or so, while auras happen just before the seizure actually happens and can actually be seizures on their own.

6. Cannabis Is Providing New Hope For Seizure Sufferers

For some, the experience of epilepsy is utterly debilitating. Seizures are, however, seeing an interesting new possible targeted medication: one derived from cannabis. Before you get worried, the new meds emphasize the cannabidiol in cannabis, not the THC, which is what gets people high. And they’re causing a stir: a 2015 piece in WIRED by Fred Vogelstein about the rapid improvement of his son, who at one point was having up to 68 absent seizures a day, on a cannabidiol was a sensation.

It’s not all hype, either. Scientific American reported in January 2016 that a new study of 162 seizure patients given cannabidiol alongside their other meds had shown cannabidiol was at least as effective as current seizure medications, with minor side effects (which are often the big problem for serious seizure sufferers). There’s still a lot of work to be done (the January study didn’t use cannabidiol on its own, which might be the next step), but this might be a promising new treatment.



The diet that could cure epilepsy

London – Of all the miracle diets that are touted, there is perhaps one that lives up to the name.

It doesn’t involve eating a crucial nutrient that a person is lacking, or avoiding one that’s causing an unpleasant reaction. In fact, nobody knows exactly how it works. But for people with epilepsy, there’s a real chance that the ketogenic diet, if followed strictly, can control – even cure – their disease.

“Not everyone responds to the diet – just like medicine – but a good response can be a gamechanger,” says Adam Hartman, a US associate professor of neurology who treats children with epilepsy at Johns Hopkins Hospital in Baltimore, Maryland, and who is working on understanding more about how the diet works.

Though there are variations to the ketogenic diet, essentially it’s low in carbs and high in fat, and contains strictly controlled levels of protein, all of which makes the body think it is fasting. Rather than using glucose, the preferred energy source, the body burns fat. This results in the production of chemicals called ketones – hence the name.
The diet is usually tried on people who have not responded to at least a few anti-epilepsy drugs. Hartman says this is because it’s generally easier to take a pill or a small amount of liquid than stick to such a radical dietary change. If people manage it, though, various research papers provide evidence of potentially profound impacts.

Not everyone responds to the diet – just like medicine – but a good response can be a gamechanger. A randomised controlled trial of the diet, involving 145 children who had seizures at least once a day and who had failed to respond to at least two drugs, found that after three months, 38 percent of the children on the diet were having half as many seizures as before (compared with only six percent of children not on the diet).

Other studies have suggested that the diet can even leave some people seizure-and medication-free – impressive, says Hartman, given that people who start the diet have tried on average six or seven types of medication.

Although no one really knows how the diet works, there are some clues. There is evidence, for example, that metabolites of fatty acids produced in people on the diet affect neurotransmitters and their receptors in the brain. But the diet may also affect gene expression and the function of mitochondria, the tiny powerhouses of our cells, Hartman says.

However, if it works, the results may be worth it: “One mother told me that anyone who thinks sticking to the diet is tough should compare it with watching a child have more than 100 seizures a day,” says Hartman. “It’s all a matter of perspective.”