Epilepsy. So Now What?!

Epilepsy is the fourth most common neurological disorder in the U.S. after migraine, stroke, and Alzheimer's disease. Its prevalence is greater than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson's disease combined. Despite how common it is and major advances in diagnosis and treatment, epilepsy is among the least understood of major chronic medical conditions, even though one in three adults knows someone with the disorder.

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."

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."

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....

Holding On, Letting Go...

I realize that I never fully understood my epilepsy I didn't want to I just wanted to keep going, nothing had to change. Right? Just take the meds and keep going doing my thing my life was finally falling into place financial security was right there, I wasn't planning European family vacations but if something broke we could fix it without trouble. I didn't need to life large just to live without panicking about getting into debit with creditors. But epilepsy threatened all of that. I had a job without health insurance, I relied on my husbands which had a high deductable and co-pays. I had never taken medications and now relied on two to get through my day and two more as needed for my headaches/migraines. Stress is not good for Epilepsy I was told time and time again but the more I realized about how my life was changing the more stressed I became.
 B R E A T H E
I kept working until one day I was standing picking up my boys from school and the next I was being helped up from these nice two ladies who told me I slipped on some ice. I couldn't recall where I was, what I was doing, that I was even outside or with my boys until I hear my younger son speak up "don't help mom up she has epilepsy you have to wait til her brain reboots!" The first thing that came clear through all the fog was and  what my young son would call the F-bomb. Everything was going to change now....

I'm going to be wearing more purple.

I would run into something, like a door and I thought my biggest issue was that I would apologize to the door. With two kids, I seemed to s l o w down. Perhaps I wasn't adjusting that well to having two kids 22 months apart but I loved being a mom and all the play dough adventures that went with it. It just started to get harder and more tiring to do things that used to be less complex. Halloween I talked my boys into wearing their everyday play costumes instead of taking them out to buy something new, not because I was being efficient but it was less work. Christmas I fumbled a glass snowman, smashing my favorite family heirloom. New Years arrived and I consistently got the year wrong months later no matter how many times I had written it down. Spring arrived and yard work became so exhausting when before I counted down the days that I would be getting my hands dirty in my gardens. Then I started tripping over my own feet, dropping things with alarming frequency and messed up the details in daily living like when I had scheduled my son's well child visit at the doctor (well child visits are yearly physicals done on or near your child's birthday so it's pretty much a 'duh' appointment).  But I kept moving forward ignoring all these little things, one day went past, then a week turns into a month, until I wake up on the bathroom floor. I made it downstairs into a chair watching in a daze as the phone hits the floor, then I realize that after telling everyone who asked (and I am a lucky girl because I can say that a lot of people cared enough to ask) that I was 'fine' that, I really wasn't.

The ER checked my heart, so thoroughly that I didn't get to leave the observation room I was placed in shortly after arriving for three days. All they found out was that I had a strong heart. After handing me countless trays of meat meals they realized I wasn't objecting to the hospital food it was more the fact that even though my info board had big block letters saying NO MEAT they kept bringing me trays that would make a hungry vegetarian cry. At one point I was quite worried about my husband launching the hospital tray of food at the orderly if it arrived again with meat on it. But I digress, in the end they let me walk out of the hospital with no answers because well I wasn't an emergency case anymore. Can't argue with that and I could move my arms again, knew who was president and could walk without falling down so it was back to life.

Your B12 is low, please come in for an injection is the message my doctor left on my voice mail, um hello?! HIPA much? (I am of course referring to my privacy being violated on my home voice mail machine for anyone to hear)  One 'ouch' later I went back to work and was on my way to recovery... until I started falling down again, dropping things, forgetting the word I wanted to use like cat when I saw, a cat and I knew that being a vegetarian who let her B12 get too low wasn't my problem or rather it wasn't my biggest problem.

We want you to see a neurologist. Ok I have an appointment in a month and upon hearing this my doctor informs me that I need to see someone earlier, that she made me an appointment for tomorrow. Yea that's going to register with me as panic, why the urgency? I'm tired of being exhausted just living, of snapping at my boys and dropping things while I try to make meals so I go to the appointment. I answer her questions, I take her little in-house test and I see the look on her face when I start failing to respond in an unremarkable way. I am becoming remarkable and in medical terms that is possibly a life changing event. I have several tests that I have to schedule with the receptionist, there is someone in front of me scheduling some of the same tests I need and I hear them tell her that the earliest she can get the tests done is October. When it is my turn I am scheduled for the MRI on Sunday morning (2 days later and on a Sunday morning!), the EEG and other tests are next week, October is never mentioned and once again I remind myself to
B R E A T H E.

"Are you claustrophobic?" I didn't think so but upon arriving I am immediately asked to change into a gown and escorted to the MRI room where a long narrow cylinder full of magnets waits for me. I want to run back out of the room to the front desk and say "Yes!" but I need to get better so I plan to suck it up. Besides, many people have had this test done. The tech places big old school headphones on me and takes my Ipod which is queued up to play Steve Carlson's music while I hang out in the coffin like chamber. When I think about my family I panic, it's like a switch (what if something is wrong with me? How will I tell my boys, my husband, my friends, loved ones and I need to move but I'm entombed up to my hips so I can't, which kicks off more intense panic) and I must hold still and ignore the fact that I cannot move my arms or head, the tingling in my body from the magnets doing their work and the loud noises the machine is making during the test. So instead, I think about media, say what you will about the entertainment industry but focusing on the premiere airing that night of AMC's Hell On Wheels and my favorite 'ships' kept me calm and still for the almost hour duration of the scans. Of course it didn't hurt that Steve Carlson was singing in my ear. It was a quick answer to the questions of MS and Lesions which was negative on both counts.

I saw the techs face after the EEG and the fact that she was now treating me like I was fragile. I heard her answer someone with a 'NO' and hand my file off so I drove home to build Lego cities with my boys while I waited a few weeks for the next scheduled test. I forgot about worrying that it seemed to physically hurt when someone in the doctors office ripped a piece of paper and that the tech started ripping paper as I lay next to her with my eyes closed and my head wired up. Then before I had made tea the next morning the phone rang. "The doctor would like to meet with you before your next scheduled appointment. How far away from the office are you? Can you be here within a half hour we will page the doctor." Oh damn, I am no longer unremarkable. I think I am going to miss that. I remember moving as if there was this black cloud over my head, I believe I might have even looked up once to check if it was there but then I got dizzy and almost fell over. My friend took my boys who sadly at this point know that mommy is sick and promised to behave while wishing me good luck and running off to play with their friends. So me and my black cloud went off to meet the doctor.

"Hi Sweetie here come right in and sit in the exam room." My black cloud is thundering now and I'm waiting for the lightening to strike. B R E A T H E   The doctor leaves a patient to enter my room and quickly informs me that while it's serious, it is treatable. She informs me that I completely failed my EEG, that my left frontal lobe was misfiring, then the right frontal lobe and then the temporal lobe joined in the light show going on in my brain. "You mentioned you had an EEG before and that you have recently been informed of a family history with epilepsy from your biological mother?And no other doctor ever saw anything on your EEG?" Umm. No or they failed to tell me about it, because according to my neurologist (wow I have a neurologist) she is looking at likely 3 decades of untreated epilepsy. One little misfire leads to another then before you know it or if you don't treat it for thirty years it's the Christmas light effect; one goes off they all do. Damn, that's defiantly remarkable. I'm reminded that it's treatable that recent advances in medicine have enabled neurology to have a greater comprehension of the human brain. B R E A T H E. Has it only be 5 minutes since I entered this room? I am informed that I was called in to begin treatment immediately to attempt to calm down the misfires. She keeps using that word and I am not understanding exactly what that means but there's a patient next door and my always present consideration let's the word slide because I do have another appointment scheduled in a few weeks.  I am told that I cannot work for a while and I am to call if I have any questions or concerns. Before I leave I am scheduled for another test a 72hour EEG, I am set to get hooked up in 5 days. As I leave a man in the office is complaining about how he has to wait weeks for his, the office assistant tells him "that's a good thing" (translation I'm likely screwed if I am scheduled within a week).  B R E A T H E

"This is the pharmacy, your prescriptions are ready to be picked up." I am on my way home from my doctors office. I have NEVER had a script filled that fast. Kids in the car, I swing by the pharmacy and get my three medications and chocolate. One med I am to take immediately, I am actually worried the pharmacy won't let me leave without taking it first. I take the medication but not before calling my family which is a good thing because ten minutes later I cannot keep my eyes open. My always there for me mom and dad have arrived to take my kids and I barley make it to my bed before I crash into unconsciousness. I later learn this is totally expected and will continue for about a week as the medication works its way into my brain chemistry. Oh crap it has just become clear that we are drugging my misfiring brain. "It's going to get worse before it gets better, just take it easy, watch tv, go to bed and your to relax, doctors orders" this is what I am told when I call her office on the third day I take my meds and fade into slumber within a half hour. If I could gather my thoughts but the meds are adding more confusion to my already addled brain because I should be panicking over not getting my boys ready for school; haircuts, new shoes, warmer clothes, does C have a jacket? Instead I am lying in my bed trying to keep my attention on the tv show I am watching but it is too confusing so I fall asleep instead.

Everyone who complained to me about the fact that I have an Iphone 4GS can bite me, because now Siri reminds me to take a pill, to eat lunch, when my next doctor visit is and whose birthday it is today. My husband can send me photos and videos while he is out with our boys and now 'checks in' on Facebook so I know what's happening. I am in love with my technology because it saves me from an expected depression from missing out on enjoying being alive. My latest toy is apple tv which enables me to push anything on my computers to the television screen so click and instant nostalgia or distraction. Now, now relax. I am not saying this is fantastic I'd rather be out with them but for now I am grateful for my technology leash I have on my family, it keeps me connected to them.

I realize my husband is talking to me but I cannot get my thoughts together enough to answer him, the sun is so bright that my head feels like it's gonna pop. There's a perfect vampire reference here but I'm moving past the obvious. I'm trying to order a pizza which shouldn't be this hard. I find myself taking pictures with my aforementioned iphone because looking at the world through it's screen doesn't make my head hurt as much. I can see where that sentence could come back to bite my technology love in the butt later but for now I am out of the house. Dinner is complete and I had two pieces of pizza which unlike before has filled me to bursting, I am enjoying the appetite suppression side affect. I am supposed to walk with L to the ice cream shop which is down a few store fronts and across the street. Seems putting one foot in front of the other is getting more difficult, L is holding me up and while he is proud of himself I am secretly horrified that my barely 7 year old is pretty much holding me upright. We are not crossing the busy road until my husband returns because I am unstable and growing more fuzzy as I try to comprehend when we are clear to cross. Damn that's embarrassing to write. I am feeling a bit better and make sure L avoids the nut ice creams, my husband is humoring me because I have totally stepped in on what he's was doing just fine with but he realizes that right now I need to have control. Fifteen minutes later, there is ice cream dripping down my hand but I cannot seem to move, I am staring at flowers and I hear my son talking but can't make out what he is saying. Then suddenly I can move again and take the napkins my husband is handing me. "Mom your supposed to eat your ice cream before it melts" I want to cry but am now so tired it's all I can do to make it back to the car. Oh joy it's my bed. Glad I finally caved and paid sleep number to have the pump fixed cause I am pretty much living in it now.

I know why I enjoy watching the same movie, tv show or youtube video repeatedly, it calms me. Friday afternoon my father has picked me up and transported me to get hooked up to a mobile EEG which I will wear for 72hours. I am wearing a helmet of gauze and tape which is covering the electrodes on my head. I am constantly bumping the pack on my side that holds the recording box and the wires, well they are colorful and tangled in my hair making me look like a George Clinton wannabe. People like to stare when I step outside my house and I missed out on a trip up North with my boys but this is supposed to give my neurologist the detailed information she needs to treat me effectively. So, I sit here blogging, watching my Vampire Diaries playlist and I am content because five hours ago I sat in this same spot and I couldn't make a grocery list.

The last ER doctor I saw that hospital a month ago told me that I had one of the strongest hearts he had seen in years, which is good  because looks like I'm going to need it.  B R E A T H E

I'm sharing because maybe you have been here too or you asked or because inadvertently you helped. I don't need attention or sympathy, I am happy, loved and so ready to fight for a epileptic free tomorrow. But I will be wearing more purple.