What is it like to live with someone with Epilepsy?
As many of you know I am the mother of a 28 year old son who for the past 15 years has lived with Epilepsy one of the most difficult things we have ever had to experience.
Through the last 15 years we have never had a day free of this if there is no seizures they are the side effects from either the seizures or the pills which include anger, frustration, sadness, delusions, suicide, non coherent and what I call zombie state, there is the pills, special fool, special light and of course the other medication.
Do you know what the different types of seizures are?
Here are the most common Seizures
absence seizures
tonic-clonic or convulsive seizures ( I still call them grand mal)
atonic seizures ( I still call drop seizures)
clonic seizures.
tonic seizures.
myoclonic seizures.
These are just a few that are not spock of much but some one might have these
Atypical Absence Seizures
Benign Rolandic Epilepsy
Childhood Absence Epilepsy
Complex Partial Seizures
Frontal Lobe Epilepsy
Febrile Seizures
Complex Febrile
Symptomatic Febrile
Hypothalamic Hamartoma
Infantile Spasms
Juvenile Myoclonic Epilepsy
Juvenile Absence Epilepsy
Lennox-Gastaut Syndrome
Landau-Kleffner Syndrome
Mitochondrial Disorders
Progressive Myoclonic Epilepsies
Psychogenic Seizures
Reflex Epilepsies
Rasmussen's Syndrome
Simple Partial Seizures
Secondarily Generalized Seizures
Temporaral Lobe Epilepsy
Do you know what they look like?
This information I borrowed from The Epilepsy Foundation
Absence Seizures: Absence seizures are brief episodes of staring.During the seizure, awareness and responsiveness are impaired. People who have them usually don't realize when they've had one. There is no warning before a seizure, and the person is completely alert immediately afterward...
Atypical Absence Seizures: The person will stare (as they would in any absence seizure) but often is somewhat responsive. Eye blinking or slight jerking movements of the lips may occur...
Atonic Seizures: Muscle "tone" is the muscle's normal tension. "Atonic" (a-TON-ik) means "without tone," so in an atonic seizure, an epileptic seizure characterized by sudden loss of muscle tone; may cause the head to drop suddenly, objects to fall from the hands, or the legs to lose strength, with falling and potential injury; usually not associated with loss of consciousness.Close muscles suddenly lose strength. The eyelids may droop, the head may nod, and the person may drop things and often falls to the ground. These seizures are also called "drop attacks" or "drop seizures." The person usually remains conscious...
Another name for this type of seizure is "akinetic" (a-kin-ET-ik), which means "without movement."
Benign Rolandic Epilepsy: A typical attack involves twitching, numbness, or tingling of the child's face or tongue (a partial seizure), which often interferes with speech and may cause drooling...
Childhood Absence Epilepsy: The seizures of childhood absence epilepsy (CAE) are usually staring spells during which the child is not aware or responsive...
Clonic Seizures :Clonic seizures consist of rhythmic jerking movements of the arms and legs, sometimes on both sides of the body...
Complex Partial Seizures:These seizures usually start in a small area of the temporal lobe or frontal lobe of the brain. They quickly involve other areas of the brain that affect alertness and awareness...
Frontal Lobe Epilepsy: When areas that control movement (called motor areas) are affected, abnormal movements occur on the opposite side of the body. Seizures beginning in motor areas can cause weakness or the inability to use certain muscles, such as the muscles that allow someone to speak...
Febrile Seizures: Children aged 3 months to 5 years may have tonic-clonic seizures when they have a high fever. These are called febrile seizures (usually pronounced FEB-rile) and occur in 2% to 5% of all children... - Complex Febrile: * Age, neurological status before the illness, and fever are the same as for simple febrile seizure. * This seizure is either focal or prolonged (ie, >15 min), or multiple seizures occur in close succession. - Symptomatic Febrile: * Age and fever are the same as for simple febrile seizure. * The child has a preexisting neurological abnormality or acute illness.
Hypothalamic Hamartoma:This syndrome consists of * abnormally early puberty * partial seizures with laughing as a frequent feature * increased irritability and aggression between the seizures. *The partial seizures may be simple or complex and there may be secondarily generalized tonic-clonic seizures...
*Infantile Spasms :Infantile spasms consist of a sudden jerk followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward ("jackknife seizures")...
Juvenile Myoclonic Epilepsy: People with JME have myoclonic seizures (quick little jerks of the arms, shoulder, or occasionally the legs), usually in the early morning, soon after awakening. The myoclonic jerks sometimes are followed by a tonic-clonic seizure. Absence seizures also may occur...
Juvenile Absence Epilepsy: All children with juvenile absence epilepsy (JAE) have absence seizures but usually they are limited to a few episodes per day. Tonic-clonic (grand mal) seizures are usually the symptom that brings the patient to the doctor...
Lennox-Gastaut Syndrome:The Lennox-Gastaut syndrome is very serious but uncommon. Three basic features define it: * Generalized seizures of more than one type, which are difficult to control * Slowness of intellectual growth and associated personality difficulties * A specific EEG abnormality called a slow spike-and-wave pattern, found when the child is awake, and generalized fast rhythms during sleep...
Landau-Kleffner Syndrome: In the typical case, a child between 3 and 7 years of age experiences language problems, with or without seizures. The language disorder may start suddenly or slowly. It usually affects the child's understanding of spoken language the most...
Myoclonic Seizures: brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle...
Mitochondrial Disorders :The metabolic disorders involving the mitochondria affect different parts of the body, including muscle and brain...
Progressive Myoclonic Epilepsies: Progressive myoclonic epilepsies feature a combination of myoclonic and tonic-clonic seizures. Unsteadiness, muscle rigidity, and mental deterioration are often also present...
Psychogenic Seizures :Events that look like seizures but are not due to epilepsy...
Reflex Epilepsies :Reflex epilepsies are a group of epilepsy syndromes in which a certain stimulus brings on seizures...
Rasmussen's Syndrome: is associated with slowly progressive neurologic deterioration and seizures in children. Seizures are often the first problem to appear...
Simple Partial Seizures:They are remarkably different from person to person, depending on the part of the brain where they begin. The one thing they all have in common is that the person remains alert and can remember what happens...
Secondarily Generalized Seizures: Seizures of this kind start as a partial seizure, that is, they start in one limited area of the brain. The forms they take vary as much as other partial seizures...
Temporaral Lobe Epilepsy:The features of seizures beginning in the temporal lobe can be extremely varied, but certain patterns are common...
Tonic-clonic Seizures: This type is what most people think of when they hear the word "seizure." An older term for them is "grand mal...
Tonic Seizures: Muscle "tone" is the muscle's normal tension at rest. In a "tonic" seizure, the tone is greatly increased and the body, arms, or legs make sudden stiffening movements. Consciousness is usually preserved...
And remember there could be many more.
What is is like to live with someone to care for someone with epilepsy?
You never know when a seizure is going to come on NO there is no warning, no signs, no clue that one is about to happen, sure sometimes something may happen that we might pick up on and realize something different is about to happen and yes there has been times when I knew something was up and got Matt to sit down and rest and then he had a seizure but usually there is no sign, clues or warning. You just have to be prepared and ready at all moments.
You have to learn to not take anything personally, not that out breaks of anger frustration or sadness, not the suicide talk or thoughts, not the wanting to leave the family or the fine I am leaving the family talk and so many more things like you dont love me, you dont want to help me, I hate my life, DONT TAKE IT PERSONALLY.
You have to become grateful for every good day and for every bad day you made it through, sometimes it feels you will never make it through some days feel like they last for ever because there is so much going on, seizures after effects and treatments that when you get through them we forget to be grateful that we made it, that we are in a brand new day in a brand new moment. Celebrate these moments you made it.
Every morning is a morning to celebrate the awakening of the person with epilepsy do you know that so many people die because of this illness? Do you know that Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP?
Do you know that there is probably even more deaths due to SUDEP but due to the unknown about it, it isnt researched enough, so some deaths are not counted.
Here is a video that speaks of this
YES Death can happen due to seizure and there is nothing you can do about it.
It can happen due to drug over does, it can happen due to a fall, it can happen by creating other illness like over weight, drowning can happen, and yes SUDEP can happen where they just dont wake up, so celebrate every morning, YES YES YES They woke up.
You never know what your day will bring so allow it to happen, in our case we never know what Matt will wake up, frustrated, groggy, zombie or happy, loving, we have no idea idea if we can take him out due to a sore he might have gotten from a seizure, if he will have a seizure during the day or if we will need to take him to the hospital, we have no idea what our day will be like so allowing is the best way for us.
Life with someone with epilepsy Is a lot of things it is caring, kind, it is learning patience, it is having courage, it is being brave and being grateful, it is loving unconditionally.
This is my son Matt he has epilepsy and he is amazing, courageous, brave and always trying his very best, this is all we all can do.
<3 Joan Nielsen
