Epilepsy Friday

Hi everyone, my Friday started with a complex Partial seizure shortly after I got up this morning.

Later that morning at eleven o’clock I was due to have a video call with my epilepsy nurse. This never transpired as I was sent the wrong link by text.

I ended up having to contact my local hospital and be put through to neurology who put me through to the nurse but as she was still unavailable I left a message.

The nurse wasn’t long in getting back to me where we discussed a minor change to my medication.

What are Invisible Disabilities?

Invisible Disability, or hidden disability, is an umbrella term that captures a whole spectrum of hidden disabilities or challenges that are primarily neurological in nature. Invisible disability, or hidden disability, are defined as disabilities that are not immediately apparent. Some people with visual or auditory disabilities who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contacts.

A sitting disability is another category of invisible impairments; sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on some days, or at all. Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognize or acknowledge. Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way.

People with some kinds of invisible disabilities, such as chronic pain or some kind of sleep disorder, are often accused of faking or imagining their disabilities. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc. and are not always obvious to the onlooker.

Invisible Disabilities are certain kinds of disabilities that are not immediately apparent to others. It is estimated that 10% of people in the U.S. have a medical condition which could be considered a type of invisible disability.

Nearly one in two people in the U.S. has a chronic medical condition of one kind or another, but most of these people are not considered to be disabled, as their medical conditions do not impair their normal everyday activities. These people do not use an assistive device and most look and act perfectly healthy.

According to the Americans with Disabilities Act of 1990 (ADA) an individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.

Woman with migraine sitting on a bed holding a white mug with her head resting on her hands and knees.
Woman with migraine sitting on a bed holding a white mug with her head resting on her hands and knees.

Generally seeing a person in a wheelchair, wearing a hearing aid, or carrying a white cane tells us a person may be disabled. But what about invisible disabilities that make daily living a bit more difficult for many people worldwide?

Invisible disabilities can include chronic illnesses such as renal failure, diabetes, and sleep disorders if those diseases significantly impair normal activities of daily living.

For example there are people with visual or auditory impairments who do not wear hearing aids or eye glasses so they may not seem to be obviously impaired. Those with joint conditions or problems who suffer chronic pain may not use any type of mobility aids on good days, or ever.

Another example is Fibromyalgia which is now understood to be the most common cause of chronic musculoskeletal pain. Sources estimate between 3 and 26 million Americans suffer from this hidden condition.

Other Types of Invisible Disabilities

  • Chronic Pain: A variety of conditions may cause chronic pain. A few of those reasons may be back problems, bone disease, physical injuries, and any number of other reasons. Chronic pain may not be noticeable to people who do not understand the victims specific medical condition.
  • Chronic Fatigue: This type of disability refers to an individual who constantly feels tired. This can be extremely debilitating and affect every aspect of a persons every day life.
  • Mental Illness: There are many mental illnesses that do qualify for disability benefits. Some examples are depression, attention deficit disorder, schizophrenia, agoraphobia, and many others. These diseases can also be completely debilitating to the victim, and can make performing everyday tasks extremely difficult, if not impossible.
  • Chronic Dizziness: Often associated with problems of the inner ear, chronic dizziness can lead to impairment when walking, driving, working, sleeping, and other common tasks.

People with psychiatric disabilities make up a large segment of the invisibly-disabled population covered under the Americans with Disabilities Act of 1990.

Invisible disabilities can also include chronic illnesses such as renal failure, diabetes, and sleep disorders if those diseases significantly impair normal activities of daily living. If a medical condition does not impair normal activities, then it is not considered a disability.

96% of people with chronic medical conditions live with an illness that is invisible.

Many people living with a hidden physical disability or mental challenge are still able to be active in their hobbies, work and be active in sports. On the other hand, some struggle just to get through their day at work and some cannot work at all.

List of SOME Invisible Disabilities

U.S. Invisible Disability Statistics

About 10% of Americans have a medical condition which could be considered an invisible disability. 96% of people with chronic medical conditions live with a condition that is invisible. These people do not use a cane or any assistive device and act as if they didn’t have a medical condition. About 25% of them have some type of activity limitation, ranging from mild to severe; the remaining 75% are not disabled by their chronic conditions. Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognize or acknowledge. Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way.

Invisible Disability in Society

Invisible disabilities are the most common type of disability among college students. For example, students with learning disabilities, Attention Deficit Hyperactivity Disorder and/or psychiatric disabilities may request accommodations even though they do not appear to have a disability. There are numerous other hidden or invisible disabilities such as heart condition, Chronic Fatigue Syndrome, Fibromyalgia, and Seizure Disorder.

A recent scheme known as the Sunflower Lanyard Program has been launched in th U.K. The Hidden Disabilities Sunflower purpose aims to help others identify when support may be needed for those with disabilities such as autism, dementia, anxiety, or other conditions that may not be immediately obvious to other people.

A growing number of organizations, governments, and institutions are implementing policies and regulations to accommodate persons with invisible disabilities. Governments and school boards have implemented screening tests to identify students with learning disabilities, as well as other invisible disabilities, such as vision or hearing difficulties, or problems in cognitive ability, motor skills, or social or emotional development. If a hidden disability is identified, resources can be used to place a child in a special education program that will help them progress in school.

Epilepsy Drugs Clobazam

Generic name: Clobazam

Available as: Clobazam, Frisium, Perizam, Tapclob, Zacco.

Anti-epileptic drugs (AEDs) are the main form of treatment for people with epilepsy. And up to 70% (7 in 10) people with epilepsy could have their seizures completely controlled with AEDs. There are around 25 AEDs used to treat seizures, and different AEDs work for different seizures. 

Find out more about Clobazam

Please note:

  • This information is a guide only. For information on doses and side effects click on the generic name above and this will take you to the electronic Medicines Compendium (eMC) where you can view the patient information leaflet (PIL).
  • A first line AED is an AED that is tried first. Some AEDs added to a first line AED are called second line AEDs.
  • AEDs are not split into first and second line for treating children age 12 and under.
  • Treatment of neonatal seizures (from birth to 28 days of age) is not covered.
  • ‘Effective’ means the seizures it works for. ‘Monotherapy’ means the AED is taken on its own. ‘Add-on therapy’ means the AED is taken alongside other AEDs. ‘Tolerance’ means that a drug becomes less effective the longer you take it.

Epilepsy and Faith

There Are No Ifs

14-16 When they came back down the mountain to the other disciples, they saw a huge crowd around them, and the religion scholars cross-examining them. As soon as the people in the crowd saw Jesus, admiring excitement stirred them. They ran and greeted him. He asked, “What’s going on? What’s all the commotion?”

17-18 A man out of the crowd answered, “Teacher, I brought my mute son, made speechless by a demon, to you. Whenever it seizes him, it throws him to the ground. He foams at the mouth, grinds his teeth, and goes stiff as a board. I told your disciples, hoping they could deliver him, but they couldn’t.”

19-20 Jesus said, “What a generation! No sense of God! How many times do I have to go over these things? How much longer do I have to put up with this? Bring the boy here.” They brought him. When the demon saw Jesus, it threw the boy into a seizure, causing him to writhe on the ground and foam at the mouth.

21-22 He asked the boy’s father, “How long has this been going on?”

“Ever since he was a little boy. Many times it pitches him into fire or the river to do away with him. If you can do anything, do it. Have a heart and help us!”

23 Jesus said, “If? There are no ‘ifs’ among believers. Anything can happen.”

24 No sooner were the words out of his mouth than the father cried, “Then I believe. Help me with my doubts!”

25-27 Seeing that the crowd was forming fast, Jesus gave the vile spirit its marching orders: “Dumb and deaf spirit, I command you—Out of him, and stay out!” Screaming, and with much thrashing about, it left. The boy was pale as a corpse, so people started saying, “He’s dead.” But Jesus, taking his hand, raised him. The boy stood up.

28 After arriving back home, his disciples cornered Jesus and asked, “Why couldn’t we throw the demon out?”

29 He answered, “There is no way to get rid of this kind of demon except by prayer.”

I came across this reading in an Epilepsy blog I was reading the other day and decided It was time I let you know I suffer from the condition.

I won’t telling you to much at the moment as I plan to make a video blog telling you all about my life with Epilepsy later this year (I hope).

What I will tell you at the moment is I wasn’t born with it, I developed it around the ages of 11 – 12yrs old. Apart from my late teens/early twenties I went about seven years without a seizure, as I was driving for four years and in those days you had to be seizure free for three years. Then one day they suddenly returned and naturally I gave up driving though I loved it.

Since that day I have had controlled epileptic seizures by medication.

Occasionally my epilepsy will get me down but I am a positive person, therefore most times when I have a seizure or turn as I call them they generally don’t bother me.

You may be asking where does my faith come into all of this.Well first of all I believe in Jesus ‘The Great Physician’, I also have a very supportive group of family and friends who understand my condition and lastly I have a great Neurologist and Epilepsy Nurse.

I’ll finish off by asking myself the question, “looking at verse 29 have I been praying hard enough?”

Coping with Disability

Probably everyone reading this will have or know someone with a disabilty of some kind. The list of disabilities is endless.

I myself was born with slight Cerebral Palsy which later in life contributed to me developing Epilepsy. Although my seizures are controlled by medication I sltill suffer the odd Focal or Partial seizure (though i haven’t had any for weeks).

My Cerebral Palsy is giving me more cause for concern at the moment as I keep loosing my balance.

Fortunately because of my positive mind I think I try not to let my disabilities get me down .

For more information check the link below

How to Emotionally Cope With Having Disabilities: 14 Steps (wikihow.com)

Epilepsy & Memory problems

Memory is commonly reported as a big area of concern for people with epilepsy. If you have epilepsy, your memory can be affected in several ways. In each case, the end result will be that you cannot recall an event or a piece of information when you need it.

Problems Of Attention And Encoding

Memory disturbance often can be traced to a problem with some other function. For example, attention is commonly affected in people with epilepsy. Epilepsy can reduce your attentional speed or rate of information processing. Years of research also have shown that many forms of epilepsy are associated with impairments in sustaining attention over time. Other studies have demonstrated a reduction in attention span, defined as the amount of information you can process at any given moment. All of these deficits ultimately affect your ability to encode information into some form of memory.

Many call this the “information age.” Computers and other forms of media have given us access to levels of information that were never dreamed of before. Unfortunately, the amount of available information can be overwhelming to many. People with conditions such as epilepsy have problems processing information when it is presented at a rapid rate or over extended periods. You may find yourself unable to follow the dialogue when actors in movies or plays are speaking. You may miss out on key elements when people quickly give you directions, addresses, or phone numbers. If you are a student, you may have trouble keeping up with lectures. You may “space out” when required to sit and listen to something that lasts for a long time.

In many cases, people with epilepsy are able to process the required information, but not at the rate at which it is presented. If your processing speed is reduced, you can miss out on critical facts. When faced with a message that has three major points, you might fully absorb numbers one and two but fail to process number three. In many cases, you cannot succeed with just two out of three. In other situations, you may fail to absorb information because you can’t keep focused over time. Some people have their attention “burn out” on them. Others tend to be very distractible and are prone to shifting their attention to details other than the topic at hand. Some can attend only to a very specific amount of information before becoming overwhelmed. To use an analogy, the funnel they use to obtain information is narrower than the one that others use.

The person in each of these examples will report a failure of memory. But what might appear to be a difficulty with remembering is actually the result of never getting the information in the first place-not only details that they intend to remember, but also background information that may be needed in certain situations. At times, seemingly irrelevant information might become critical. For example, someone may ask you, “Did you meet the guy with the blue shirt?” You might remember meeting a man, but because your ability to focus on incidental details is restricted, you may be unable to remember anything about his clothing. Problems with attention cause many people with epilepsy to have difficulty absorbing information in general. If you are unable to recall and retain information, it may be because you have this kind of problem with memory encoding. You cannot remember what you never got to begin with.

Problems Of Storage

Unfortunately, even if you successfully encode a bit of information, you might not be guaranteed to remember it. The epilepsy may cause difficulties with being able to store memories.  

Research has shown that people with epilepsy are prone to forget things more quickly than others. In some situations, it may seem that information “goes in one ear and out the other.” This rapid rate of forgetting is thought to be the result of impairment in the ability to store or consolidate new information. This storage problem is ultimately linked to a defect in the “hardware” required for normal memory functioning. Difficulty with this stage of memory processing is no accident; epilepsy directly affects many of the brain structures involved in memory processing.

Problems Of Retrieval

Sometimes you may know that the information is in there, but you just can’t get it out. In this case, it has been encoded properly and it also has been stored adequately. The problem is in gaining immediate access to it. This kind of difficulty in “retrieval” is a common cause of memory failure in people with epilepsy and many other neurological conditions.

Some retrieval problems might result from deficits in speed of access. If you are asked to remember something “on the spot” you may not be able to come up with it, but a few minutes later it comes to you. It is clear that the information was always there, but access to it was delayed. At times, access might become blocked altogether. Some form of distraction, like another piece of similar information, might get in the way of remembering.

Some people have trouble recalling things out of context. For example, you might not remember attending a certain party until you hear more details about it. Then you say, “Oh, you mean that party!” This shows that it is often difficult to retrieve episodes in isolation. Similar things can happen with words. You might not be able to come up with the word until you think about it in another form or meaning. A large part of successful memory functioning involves being able to generate a context for retrieval. Unfortunately, many people with epilepsy have subtle difficulties with problem-solving that might affect the ability to generate these contexts. In some cases, these people can’t initiate a plan for remembering. In other cases, they might not be able to see the relationship between various contexts.

Epilepsy has significant effects on retrieval from declarative memory, the kind that we process consciously. You may have difficulty in retrieving episodes or events that happened to you, and also have difficult in retrieving what scientists call “semantic information”-words or facts in general knowledge. Just as problems with encoding are often the result of a problem with attention, this kind of failure in retrieval also may actually be due to a difficulty with attention or can be due to higher-order cognitive deficits in areas such as organization and sequencing. The kind of problems with word retrieval (also called “word finding”) that many people with epilepsy report may occur because of memory impairment, or they may occur because of a disturbance in language functions.

The important thing to remember is that what we commonly refer to as a problem with memory often is the result of problems with a number of underlying processes that can be affected by factors associated with epilepsy.