Do you know the above person? If so then there is your one in three. Epilepsy however just messed with the wrong girl and you know what they say about payback...
I hate 3-D and strobe lights, certain patterns annoy me and sometimes if an object is sitting at an angle I have to move it cause it can make my head hurt. I learned this is called Photosensitivity and seizures. If i am luck (HA!) I just get a migraine not actually a seizure. I keep trying like when I went to Cranbrook with my sons class field trip forgetting that the plantarium can difficult on anyone but I wore my sunglasses and closed my eyes which helped a bit but my 9 year old son holding my hand was the best medicine that day. Legoland the boys wanted to watch a 4-D (where they actually make it rain or use fog machines in the theatre) 20 minute Lego Clutch Powers movie and after telling the audience that you cannot exit they announce that if you have problems with flashing lights or laser beams, loud noises and strobe effects you shouldn't watch the film (um hello? you just made it pitch black in the auditorium and asked us for our safety to not get up from our seats and move!) My husband texts my phone "someone needs a refresher on the persons with disabilities act" then of course the man behind me kicks my seat cause my phone lit up. Yea pal it could get much more interesting if my brain freaks out during Clutch Powers race to the finish line on planet Mars. It didn't but again I missed a lot with my eyes closed, head down and my seven year old sons hand in mine. While this is annoying this is child's play compared to what comes next....
Simple Partial Seizures
"People who have simple partial seizures do not lose consciousness. However, movement, emotions, sensations and feelings can be affected.
However, some people, although fully aware of what's going on, find they can't speak or move until the seizure is over. They remain awake and aware throughout. Sometimes they can talk quite normally to other people during the seizure. And they can usually remember exactly what happened to them while it was going on. However, simple partial seizures can affect movement, emotion, sensations and feelings in unusual and sometimes even frightening ways.
Some simple partial seizures start out with shaking of a hand or foot which then spreads to involve an arm or a leg or even one whole side of the body.
Emotions: A sudden feeling of fear or a sense that something terrible is about to happen may be caused by a simple partial seizure in the part of the brain which controls those emotions.
In rare cases, partial seizures can produce feelings of anger and rage, or even sudden joy and happiness.
Sensations: All five senses—touch, hearing, taste, smell and sight—are controlled by various areas of the brain. Remember that an episodic feeling of fear or other feelings is usually not caused by a seizure.
Simple partial seizures in these areas can produce odd sensations such as a sense of a breeze on the skin; unusual hissing, buzzing or ringing sounds; voices that are not really there; unpleasant tastes; strange smells (also usually unpleasant); and, perhaps most upsetting of all, distortions in the way things look.
For example, a room may suddenly seem narrower or wider than it really is. Objects may seem to move closer or get farther away. Part of the body may appear to change in size or shape.
If the area of the brain involved with memory is affected, there may be disturbing visions of people and places from the past.
Sudden nausea or an odd, rising feeling in the stomach is quite common. Stomach pain also may, in some cases, be caused by simple partial seizures.
Episodes of sudden sweating, flushing, becoming pale or having the sensation of goosebumps are also possible.
Some people even report having out of body experiences during this type of seizure. Time may seem distorted as well.
In many ways, our usual, comfortable sense of familiar things and places may be disrupted by a simple partial seizure.
Well-known places may suddenly look unfamiliar. On the other hand, new places and events may seem familiar or as if they've happened before, a feeling called déjà vu.
Simple partial seizures can also produce sudden, uncontrolled bursts of laughter or crying."
From Epilepsyfoundation.org
Now. I am not trying to freak you out. I am the same person I have always been. According to my neurologist I have likely had this since childhood and it was never discovered. Though my wonderful mother took me to several doctors and keep yelling "Hello! Something is wrong she is staring there is a biological history here." Another billionth point for my mom and losing point for idiot doctors I saw in my youth. Moving on... Well I couldn't move on right away, we had to wait cause I had a seizure. Now since I never do things the easy way I also have these type of seizures as well....
Complex Partial Seizures
"First Aid
- Do not restrain the person.
- Remove dangerous objects from the person's path.
- Calmly direct the person to sit down and guide him or her from dangerous situations. Use force only in an emergency to protect the person from immediate harm, such as walking in front of an oncoming car.
- Observe, but do not approach, a person who appears angry or combative.
- Remain with the person until he or she is fully alert.
"During a complex partial seizure, a person cannot interact normally with other people."
Complex partial seizures affect a larger area of the brain than simple partial seizures and they affect consciousness.
During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions; doesn't know what he or she is doing; and cannot remember afterwards what happened during the seizure.
Although someone may appear to be conscious because he or she remains standing with their eyes open and moving about, it will be an altered consciousness—a dreamlike, almost trancelike state.
Often accompanied by movements called automatisms. These may include chewing movements of the mouth, picking at clothes or fumbling.
A person may even be able to speak, but the words are unlikely to make sense and he or she will not be able to respond to others in an appropriate way.
Although complex partial seizures can affect any area of the brain, they often take place in one of the brain's two temporal lobes. Because of this, the condition is sometimes called "temporal lobe epilepsy."
"Psychomotor epilepsy" is another term doctors may use to describe complex partial seizures.
Typically, a complex partial seizure starts with a blank stare and loss of contact with surroundings.
This is often followed by chewing movements with the mouth, picking at or fumbling with clothing, mumbling and performing simple, unorganized movements over and over again.
Sometimes people wander around during complex partial seizures. For example, a person might leave a room, go downstairs and out into the street, completely unaware of what he or she was doing.
Actions and movements are typically unorganized, confused and unfocused during a complex partial seizure.
However, if a complex partial seizure suddenly begins while someone is in the middle of a repetitive action—like dealing cards or stirring a cup of coffee—he or she may stare for a moment then continue with the action during the seizure, but in a mechanical, unorganized kind of way."
During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions; doesn't know what he or she is doing; and cannot remember afterwards what happened during the seizure.
Although someone may appear to be conscious because he or she remains standing with their eyes open and moving about, it will be an altered consciousness—a dreamlike, almost trancelike state.
Often accompanied by movements called automatisms. These may include chewing movements of the mouth, picking at clothes or fumbling.
A person may even be able to speak, but the words are unlikely to make sense and he or she will not be able to respond to others in an appropriate way.
Although complex partial seizures can affect any area of the brain, they often take place in one of the brain's two temporal lobes. Because of this, the condition is sometimes called "temporal lobe epilepsy."
"Psychomotor epilepsy" is another term doctors may use to describe complex partial seizures.
Typically, a complex partial seizure starts with a blank stare and loss of contact with surroundings.
This is often followed by chewing movements with the mouth, picking at or fumbling with clothing, mumbling and performing simple, unorganized movements over and over again.
Sometimes people wander around during complex partial seizures. For example, a person might leave a room, go downstairs and out into the street, completely unaware of what he or she was doing.
Actions and movements are typically unorganized, confused and unfocused during a complex partial seizure.
However, if a complex partial seizure suddenly begins while someone is in the middle of a repetitive action—like dealing cards or stirring a cup of coffee—he or she may stare for a moment then continue with the action during the seizure, but in a mechanical, unorganized kind of way."
from epilepsyfoundation.org
So far I tend to do the last one, mechanical actions in unorganized way. Or I have been known to lose consciousness hence my no longer driving for fear i would hurt someone else or my kids. I seem to fall down a lot though which I like more than walking into traffic or playing with my clothes (I keep worrying about that dream you know the one where you are walking naked down the street?)
Now the fun part and the reason I was quiet for so long, we as a society have this need to always show our best face like we must impress all the time. Look at me! How perfect my life is and I tend to find my best moments in life are when the messy times occur. However, right now life feels like someone has taken my snow globe and violently shaken it and each time the snow starts to settle a bit they shake it again. But for now thanks to family and good friends I am able to keep my feet on the ground and when I fall I can get back up and dust off the snow. Ready for the kick in the pants? The part where I get to live with this for the rest of my life. It forever changes my life and everyone in my life? I has affected me throughout my life without my knowing it since childhood but once I learned about it so many puzzle pieces clicked into place. I found the missing piece but now it had time to do so much damage that catching up let alone getting ahead of epilepsy is not going to be easy. One light goes awry they all do and they have had a thirty year head start. But I up for a challenge and I have back up. "I don't think I have met a patient with quite the humorous approach to this situation before", my new primary care physician. What? Am I suppose to sitting in the corner and cry? Believe me I will be fighting just not with my fists.
Public Understanding
"Every day, people living with this type of epilepsy go to work, take care of their children, take part in sports, ride buses, cross busy streets, go on escalators, wait for trains and—perhaps most difficult of all—risk having a seizure in front of a public that too often does not understand.
Dealing with the reactions of others may be the biggest challenge of all for people with complex partial seizures. That's because many people find it hard to believe or accept that behavior which looks deliberate may not be.
Lack of public understanding has led to people with complex partial seizures to be unfairly arrested as drunk or disorderly, accused by others of unlawful activity, indecent exposure or drug abuse—all because of actions produced by seizures.
Such actions may even be misdiagnosed as symptoms of mental illness, leading to inappropriate treatment and, in some cases, commitment to an institution.
The Epilepsy Foundation and its network of affiliates are committed to making the public more aware of this type of epilepsy so that painful misunderstandings can be avoided.
Not uncommonly, simple partial or complex partial may spread to involve the entrie brain will result in a later phase with generalized convulsions this kind of seizure seizure is called partial with secondary generalization."
Dealing with the reactions of others may be the biggest challenge of all for people with complex partial seizures. That's because many people find it hard to believe or accept that behavior which looks deliberate may not be.
Lack of public understanding has led to people with complex partial seizures to be unfairly arrested as drunk or disorderly, accused by others of unlawful activity, indecent exposure or drug abuse—all because of actions produced by seizures.
Such actions may even be misdiagnosed as symptoms of mental illness, leading to inappropriate treatment and, in some cases, commitment to an institution.
The Epilepsy Foundation and its network of affiliates are committed to making the public more aware of this type of epilepsy so that painful misunderstandings can be avoided.
Not uncommonly, simple partial or complex partial may spread to involve the entrie brain will result in a later phase with generalized convulsions this kind of seizure seizure is called partial with secondary generalization."
taken from epilepsyfoundation.org
There's a reason that section is highlighted yellow but that's for another blog entry.
I always wanted to change the world. For over twenty years I have helped others live independently and now I am on the other side of the fence. I think once I have the seizures a bit more stable I will be able to get back to be the change I want to see in the world.
I just didn't realize what that change was until now....
