KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Epilepsy and what it meant to my life
First, let's start of with some real facts regarding epilepsy and what we mean about seizures and epilepsy. For our first bit of facts, lets start with this site
Epilepsy is a neurological condition, which affects the nervous system. Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar. Sometimes, according to the International League Against Epilepsy, epilepsy can be diagnosed after one seizure, if a person has a condition that places them at high risk for having another.
The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown. The word "epilepsy" does not indicate anything about the cause of the person's seizures, what type they are, or how severe they are.
A seizure is a sudden surge of electrical activity in the brain that usually affects how a person feels or acts for a short time. Seizures are not a disease in themselves. Instead, they are a symptom of many different disorders that can affect the brain. Some seizures can hardly be noticed, while others are totally disabling.
The seizures in epilepsy may be related to a brain injury or a family tendency, but often the cause is completely unknown. The word "epilepsy" does not indicate anything about the cause or severity of the person's seizures.
If I have one seizure, does that mean I will get epilepsy?
About half of the people who have one seizure without a clear cause will have another one, usually within 6 months. You are twice as likely to have another seizure if you have a known brain injury or other type of brain abnormality. If you do have two seizures, there's about an 80% chance that you'll have more.
If your first seizure occurred at the time of an injury or infection in the brain, you are more likely to develop epilepsy than if you had not had a seizure in that situation.
More seizures are also likely if your doctor finds abnormalities on a neurological examination; a set of tests of the functioning of your nervous system that is performed in the doctor's office.
Another thing that can help your doctor predict whether you will have more seizures is an EEG, electroencephalogram (e-LEK-tro-en-SEF-uh-LOG-ram), a test in which wires attached to your scalp record your brain waves. Certain patterns on the EEG are typical of epilepsy. If your brain waves show patterns of that type, you are about twice as likely to develop epilepsy as someone who does not have those patterns.
I had my first seizure after a day of heat exhaustion in 1993 when my mother was desperate for cigarettes and she informed me that I needed to either get her cigarettes before I went to work (I was supposed to be on the bus 15 minutes after this conversation) or I need not come home after work. I ran uphill to the nearest grocery store (she had a coupon that they would take) and back within 10 minutes. According to google maps, it is a 15 minute walk one way and is a mile each way. I got home from there, ended up calling out of work. Philadelphia was in the middle of a really bad heatwave (the kind where it was 100 degrees by 9AM), so we just thought that the heat took all my energy. We had central air, so we turned that up and I slept on the sofa all day. I do not remember anything at all from that day, particularly going in to bed, but apparently I did. I had my first seizure that night.
A seizure is usually defined as a sudden alteration of behavior due to a temporary change in the electrical functioning of the brain, in particular the outside rim of the brain called the cortex. Below you will find some of the symptoms people with epilepsy may experience before, during and after a seizure. Seizures can take on many different forms and seizures affect different people in different ways. It is not implied that every person with seizures will experience every symptom described below.
Seizures have a beginning, middle, and end
When an individual is aware of the beginning, it may be thought of as a warning or aura. On the other hand, an individual may not be aware of the beginning and therefore have no warning. Sometimes, the warning or aura is not followed by any other symptoms. It may be considered a simple partial seizure by the doctor.
The middle of the seizure may take several different forms. For people who have warnings, the aura may simply continue or it may turn into a complex partial seizure or a convulsion. For those who do not have a warning, the seizure may continue as a complex partial seizure or it may evolve into a convulsion.
The end to a seizure represents a transition from the seizure back to the individual’s normal state. This period is referred to as the “post-ictal period” (an ictus is a seizure) and signifies the recovery period for the brain. It may last from seconds to minutes to hours, depending on several factors including which part(s) of the brain were affected by the seizure and whether the individual was on anti-seizure medication. If a person has a complex partial seizure or a convulsion, their level of awareness gradually improves during the post-ictal period, much like a person waking up from anesthesia after an operation. There are other symptoms that occur during the post-ictal period and are detailed below.
Please note: Below is only a partial list, some people may experience other symptoms not listed below. These lists are meant to help patients communicate with their physicians.
Early seizure symptoms (warnings)
Sensory/Thought:
Deja vu
Jamais vu
Smell
Sound
Taste
Visual loss or blurring
Racing thoughts
Stomach feelings
Strange feelings
Tingling feeling
Emotional:
Fear/Panic
Pleasant feeling
Physical:
Dizziness
Headache
Lightheadedness
Nausea
Numbness
No warning:
Sometimes seizures come with no warning
Seizure symptoms
Sensory/Thought:
Black out
Confusion
Deafness/Sounds
Electric Shock Feeling
Loss of consciousness
Smell
Spacing out
Out of body experience
Visual loss or blurring
Emotional:
Fear/Panic
Physical:
Chewing movements
Convulsion
Difficulty talking
Drooling
Eyelid fluttering
Eyes rolling up
Falling down
Foot stomping
Hand waving
Inability to move
Incontinence
Lip smacking
Making sounds
Shaking
Staring
Stiffening
Swallowing
Sweating
Teeth clenching/grinding
Tongue biting
Tremors
Twitching movements
Breathing difficulty
Heart racing
After-seizure symptoms (post-ictal)
Thought:
Memory loss
Writing difficulty
Emotional:
Confusion
Depression and sadness
Fear
Frustration
Shame/Embarrassment
Physical:
Bruising
Difficulty talking
Injuries
Sleeping
Exhaustion
Headache
Nausea
Pain
Thirst
Weakness
Urge to urinate/defecate
When I was pregnant with my daughter, Franki, the summer of 1994, my seizures would be so bad that I would fly across the room in my sleep and hit the opposing wall. Until after 2000 (I think it was in 2001 or 2002) all of my seizures were in my sleep, meaning as long as I was awake, I was fine. Unfortunately, I had my first seizure in either 2001 or 2002 due to work related stress. I had been basically OK before that, I didn't have to worry about a seizure hitting me when I was awake and so forth. That fell to the wayside after that particular seizure. Now, I can have a seizure at any point and for any reason.
How serious are seizures?
The overall life expectancy of people who have epilepsy is the same as for anybody else if they are otherwise pretty healthy. Some people whose epilepsy is caused by things like a stroke or a brain tumor may die sooner from those conditions, of course.
A long-lasting convulsive seizure (called "tonic-clonic status epilepticus") is a medical emergency. If not stopped within about 30 minutes, it may cause permanent injury or death. In addition, people with epilepsy can also die from inhaling vomit during or just after a seizure. This can be prevented if someone will turn the person onto one side when the seizure begins and ensures that the vomit completely comes out of the mouth. In general, seizures are hardly ever fatal, even if the person loses consciousness.
People who are not seizure-free need to be careful about possible accidents during a seizure. Death from drowning is more common among people with epilepsy. It can even occur in a tub with only a few inches of water, so people who have seizures probably should stick to showers instead of baths. If you have epilepsy, your doctor—and the agency in your state or province responsible for licensing drivers—will help you decide whether it is safe and legal for you to drive. You should also be careful on train or subway platforms and when walking near busy streets. However,with some planning, you should be able to lead a life that is both active and safe.
What about Sudden Unexplained Death in Epilepsy (SUDEP)?
SUDEP is a rare condition in which people with epilepsy die without a clear cause. It accounts for less than 2% of deaths among people with epilepsy. The risk is about 1 in 3,000 per year for all people with epilepsy. It can be as high as 1 in 300 for those who have frequent, uncontrollable seizures and take high doses of seizure medicines. SUDEP is extremely rare in children.
The person is often found dead in bed and doesn't appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down.
No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.
Safety Precautions
The best known way to lessen the risk of SUDEP is to control seizures. Therefore:
Take all seizure medicines regularly, as prescribed.
Avoid heavy alcohol use and recreational drugs.
Get regular sleep and avoid fatigue.
Detailed Seizure Medicine Information
The following drugs are currently approved and marketed for certain kinds of epilepsy in certain countries.
Banzel
Carbamazepine
Carbatrol®
Clobazam
Clonazepam
Depakene®
Depakote®
Depakote ER®
Diastat
Diazepam
Dilantin®
Ethosuximide
Felbatol®
Felbamate
Frisium
Gabapentin
Gabitril®
Inovelon®
Keppra®
Keppra XR™
Klonopin
Lamictal®
Lamotrigine
Levetiracetam
Lorazepam
Luminal
Lyrica
Mysoline®
Neurontin®
Oxcarbazepine
Phenobarbital
Phenytek®
Phenytoin
Primidone
Rufinamide
Sabril
Tegretol®
Tegretol XR®
Tiagabine
Topamax®
Topiramate
Trileptal®
Valproic Acid
Vimpat
Zarontin®
Zonegran®
Zonisamide
I am now, and have been since I was pregnant with Franki, on Tegretol (carbamezapine) of varying doses, which have increased over the years, and just basically trying to take care of myself properly. On occasion, I do mess up (part of being human, I fear) and end up having a seizure, which also means that I have memory lapses and other problems that I can't always describe.
All of my information has come from various pages of this site