My Song?

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Last night my husband and I were playing cards and listening to a classic rock station. As we sat rearranging our hands for a new game, the Pink Floyd song, Comfortably Numb began to play. As much as I love Pink Floyd, I was only half listening. I had a good hand and I was thinking of ways to maximize the cards I was holding.

“That’s your song,” my husband said as he shifted cards in his hand.

“My song? What do you mean?” I asked him.

I didn’t remember this one very well. It was from their album The Wall. My favorite album was Wish You Were Here. I went through biofeedback training in my twenties to deal with my out-of-control migraines. Music was part of the process, and that was the album I used. The process became so ingrained in my head that to this day, my body starts to relax and I feel peaceful when I hear the opening chords of Shine On You Crazy Diamond.

“That’s your song,” my husband repeated. “Listen to the words.”

The lyrics described someone talking to another person going through some kind of psychological event. The more I listened, the more I knew just what my husband meant. It describes an individual emotionally and physically distanced from others. Someone who sees things out of the corner of the eye, who knows others are talking, but cannot hear their words, someone who feels numb.

I experienced the things described in the song when my epilepsy began to accelerate, moving from what some people would think as mere eccentricities to the level of the deeply disturbed. My husband was unable to reach me. I can still remember times when I felt like I was encased in something and unable to connect with him or other members of my family. I would look at him and he at me as if we were looking through soundproof glass. I knew I wasn’t making a lot of sense. I knew I wasn’t saying what was in my thoughts or even in my heart, but somehow I couldn’t. I had momentarily forgotten how. My seizures were robbing me of my closeness with others, as well as my self-awareness.

I felt so alone. I felt as if I would die from this disconnect.

But I didn’t die. I got better. My husband and my family continued to try to reach me, to rebuild the connection. The glass is gone these days and I don’t feel numb. I still see things out of the corner of my eye, but that doesn’t worry me. What I know from that experience is that I never want to be numb again.

While others may not feel or see the connection between my experiences and the story of the song, I want to point out here that art, in its purest sense, allows the viewer/listener/watcher to participate, to relate. Finding something that you relate to on a deep level, that describes to you the experiences you feel with your illness, is a gift. Cherish it.

Comfortably Numb
(Gilmour, Waters)

Hello?
Is there anybody in there?
Just nod if you can hear me.
Is there anyone at home?
Come on, now,
I hear you’re feeling down.
Well I can ease your pain
Get you on your feet again.
Relax.
I’ll need some information first.
Just the basic facts.
Can you show me where it hurts?

There is no pain you are receding.
A distant ship, smoke on the horizon.
You are only coming through in waves.
Your lips move but I can’t hear what you’re saying.
When I was a child I had a fever.
My hands felt just like two balloons.
Now I’ve got that feeling once again.
I can’t explain, you would not understand.
This is not how I am.
I have become comfortably numb.

O.K.
Just a little pinprick.
There’ll be no more aaaaaaaaah!
But you may feel a little sick.
Can you stand up?
I do believe it’s working, good.
That’ll keep you going through the show.
Come on, it’s time to go.

There is no pain you are receding.
A distant ship, smoke on the horizon.
You are only coming through in waves.
Your lips move but I can’t hear what you’re saying.
When I was a child
I caught a fleeting glimpse
Out of the corner of my eye.
I turned to look but it was gone.
I cannot put my finger on it now.
The child is grown,
The dream is gone.
I have become comfortably numb.

Social Stigma and the Shame We Inflict On Ourselves

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For whatever reason, my thoughts about shame and stigma are never far from the surface these days. And, a recent post on Facebook triggered another long and involved look into what those of us with epilepsy experience and what we sometimes inflict on ourselves.

The post was from someone with epilepsy who had just received an ice bucket challenge to raise money for ALS. For those of you not in the States, the ALS Ice Bucket Challenge is an activity to raise money and awareness for amyotrophic lateral sclerosis, known as ALS, or Lou Gehrig’s Disease. The nominated person has 24 hours to make a video getting dumped with ice water, or make a $100 donation to ALS research. The person on Facebook was concerned about the challenge, rightly assuming that a bucket of ice water dumped over the head might induce a seizure. The poster was looking for advice.

OK, I thought, here is an odd situation. A person has a condition that is relatively unstable and potentially dangerous. Someone challenges this person to put himself or herself in harm’s way to raise money and awareness for another condition.

Ugh. Well, the obvious answer would have been a simple “no”.

Here is where I began to obsess on the situation. Those of us with epilepsy probably would do it; but, we would try to manipulate the circumstances, as the FB person was doing, to appear normal.

The desire to be or appear to be normal is so strong in us that many times it puts us in harm’s way. We don’t get proper treatment in time. We don’t consider the condition in how we go about our lives. We watch, eat, and smoke things we definitely shouldn’t. And it’s all because we are afraid of appearing to be different.

I spent years developing coping mechanisms to deal with my condition. And this was before my diagnosis.

Despite the fact that my temporal lobe epilepsy was nameless to me, I did things that I knew would harm me just so that I would fit in. Things didn’t get much better when I finally learned what I had. The condition had a name, and with the name came all kinds of explanations for what had been happening!

That should have thrilled me, relieved me, and given me peace. Instead, it accelerated my level of shame and self-hatred. Self-hatred to the extent that I nearly threw up when the doctor told me I had TLE. I will never forget the shock or the reaction. It kept coming in nauseating, mind-numbing waves for a long time. It changed the way I saw myself, and it introduced images that I struggled with daily.

In my search for an explanation, a pattern, or even a clue, I looked for the reason why. Not why I had epilepsy, but why I felt like I did about a condition I knew next to nothing about. I, who had been in health care for years researching diseases and conditions, and viewing them dispassionately.

I came to the conclusion that my impression of epilepsy had been built long before I left grade school, incorporating those twin life-changing elements of fear and ignorance. Here are a few interesting facts about the past and present that might be affecting you without your knowledge.

In Nervous System Mysteries: The Social Stigma Surrounding Epilepsy, Paulomi Bhattacharya looks at the stigma that has emotionally crippled sufferers and limited funding for research.

“Along with the slow rate of development of epileptic research, victims of this ailment remain as ostracized from society as they did ten, twenty, even thirty years ago,” she says.

She goes on to talk about the patient’s identity crisis, saying “Because the brain is such a vital part of the human body, one major challenge for epileptic patients is definitely coming to terms with the fact that their brains work differently. Patients have a deeply altered perception of themselves and struggle with accepting their condition, especially in relation to everyone else around them.”

In reference to the social stigma, Bhattacharya says, “Humans have an inherent habit of distinguishing and labeling differences amongst themselves, and this automatic categorization alienates epileptic patients to the point where they face extreme discrimination. In a society so heavily plagued by predetermined views and quick judgment, epileptic patients are often singled out to be ‘abnormal’ and are not guaranteed various fundamental rights.”

She points out that not until the late 1980s and early 1990s was it legal for people with epilepsy to marry in the United States and Great Britain. Until the late 1970s, epileptics in the US could not go into public buildings, such as restaurants, shopping centers, and theaters. Sure, all that’s changed, but the underlying social stigmas still exist.

Finally, Bhattacharya says that in the US, China, and Great Britain, a high percentage of the population wants to deny epileptics the ability to work, requiring them to stay home and out of sight. This view is nearly 100-percent in developing countries.

After reading this article, I realized that no matter what I think of myself on good days, I am still compliant with how other people view my situation and restrictions. Exposure to fluorescent lights causes seizures, as do large crowds, loud noise, and lots of movement that is out of my control.

So where am I in this? I am at home. I can’t figure out how to have a life and not expose my condition on a regular basis. I break out in a cold sweat going to the doctor, because I will have to tell the staff about the lights and they will have to turn them off in the examining room. If I don’t, I will have a seizure, or two.

I am afraid and embarrassed, because I have a brain condition that cannot tolerate many kinds of light and movement. I can’t take medication for it for several reasons, including the fact that most of them cause seizures. Does any of this make me less than a person, or are they just physical issues that should be accommodated by society the way we accommodate people who use wheelchairs or need handicapped parking?

A 2008 article in The New York Times (Easing the Seizures, and Stigma, of Epilepsy) quotes Dr. Orrin Devinsky, director of the Epilepsy Center at New York University, as saying epilepsy carries a significant level of embarrassment “The feeling, for a lot of people, is that it does carry a lot worse stigma than a cancer or an HIV even. At some level, it’s society that needs to wake up and realize it’s just another neurologic disorder.”

In the same article, Warren Lammert talks about public perceptions of the disorder. “(E)ven among well-educated people, people don’t like to talk about epilepsy,” he writes. Lammert runs a financial firm in Boston. In 2002, he founded an epilepsy organization with Dr. Devinsky. But, more important, his daughter has epilepsy.

No, we as a society do not often talk about epilepsy, and those of us with epilepsy do not talk about the condition without a measure of shame and embarrassment. This needs to change, and the only way it can change is for those of us with the condition to start feeling more charitable about our own issues and to be “kinder to ourselves” as my yoga teacher would instruct.

It would be nice if the public awareness level was higher, if different attitudes existed, if society were less fearful and better informed. But, all the goodwill in the world won’t matter if, at the end of the day, we are still ashamed of ourselves.

Stuck in the mud

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Today was one of those days when everything seemed to be going sideways.

I started the day with good intentions, but everything I touched broke, metaphorically speaking.

Last week, everything I “physically” touched broke, like the disposal, which tossed a piece of metal at me in its last throws of life.

I should have noticed that things were getting somewhat better today. But I didn’t, and I bitterly complained on the phone to my husband about the problems I had encountered all morning.

“You are like a pickup truck stuck in a muddy hole,” he said. He pointed out that I raced the engine and spun the wheels, getting more and more frustrated, but not making any progress.

I thought about what he was saying. I did feel like that truck. I could imagine the sound of the spinning tires and the straining of the engine as I tried to move out of the hole. And then it got out, only for about five minutes before it hit another mud hole and got stuck again.

Managing seizures seems to be a lot like driving that truck. I fight and strain against the problems, both physical and emotional, seemingly going nowhere. Then all of a sudden I will buck in the air and move out of the mud hole, bumping along on a dry, flat road for a while.

This is when I begin to doubt that I have seizures.

Yes, we have been through that wild phenomenon in this blog before. There is a sense of disbelief that I have temporal lobe epilepsy and have experienced all the things that I obviously have experienced. I feel quite normal mentally and physically. I have come to believe this magical thinking is actually, you guessed it, part of the seizure cycle.

It is the last bit of dry, flat road before I hit another mud hole.

Why spin the tires? Why push the truck to the limits? Why try? Because the urge to survive, to get past the problem, to figure out the one thing that helps or, better yet, will take it all away are so woven into my personality that I don’t think I could stop even if I thought I should.

So, to all you trucks out there stuck in the mud, this one’s for you.

What Just Happened?

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Do you ever have the feeling that you don’t understand what just happened? I seem to encounter this confusion a lot. I know now, but for years I was in the dark about the sudden change. Even today it is startling and I have to reassure myself that I am OK and it is just another TLE trait.

Here is what happened a few days ago. I wonder if any of you will find this remotely familiar.

I wake up happy. My birthday will be on the next day and I am excited about the arrival of my younger daughter and her boyfriend. They live in Louisiana and cannot come home as often as I would like. My older daughter, husband and two children live in town, and despite seeing them often, I am still excited about the family gathering as if it has been years since we were all together.

We are planning to go to Galveston and eat at a harbor restaurant that has a gluten free menu (yeah for me!). There is nothing I love more than being with my family for a celebration. This is probably why Christmas is my favorite day of the year. It is family in spades.

So here I am, happy, excited, drying my hair, putting on makeup and thinking about last minute things that need doing before the arrivals begin. In that moment I am looking in the mirror and feeling good, thinking everything is fine. The next moment everything is not fine, not by a long shot.

I am still looking in the mirror, but my face has morphed into something else. I look like I have had a stroke, turned into a demon or possibly started to melt.

This change always confuses me. I am never able to adjust or to reassure my brain in those first few minutes that it is all OK. A sick feeling in the pit of my stomach accompanies the demon morphing, along with a black buzzing sensation in my head and an awareness of other dimensions forming in the world around me.

My first words are “What the F@#$%!” and I make my way into the bedroom to sit on the side of the bed, hair partially dried and makeup unfinished. The muscles in my legs are already beginning to spasm as if I had just finished a marathon, so I force myself up from the bed and hobble into the kitchen to take potassium washed down by a sports drink.

I go back into the bathroom and look into the mirror. The scary changes are still there. I begin “the dialogue” with myself over the changes and what I should do.

Is this a seizure or am I just anxious (except I don’t get anxious if I am not having a seizure or afraid of a seizure)? OK, if it is a seizure, then when did it happen because I don’t remember it? Did I somehow lose time?

Moreover, if it is a seizure, then what caused it?

All these questions rattle around in my head on one level as I try to assess how I am feeling on another and calculate if I need to take my rescue medication. I am one of the 30-percent of epileptics who are unable to take medication to relieve or prevent seizures. I do have, however, medication I take once in a great while that will help with the aftermath. There is a cost. The medication will calm for 24 hours and then I will be in major pain for the next day or so as it wears off. My body doesn’t make anything easy.

So, going back to the assessment. Do I take the rescue medication and have it wear off during my dinner? Or, do I muscle through and keep my options open? I look at the demon in the mirror for an answer. She says wait and see what happens. So I do. And the fun continues.

I try to distract myself by cleaning. This is something that doesn’t require major decisions, only concentration. I move into the Zen of housecleaning in hopes the demon will move on and I will be the one in the mirror next time I look.

As I clean, I begin to feel odd, odd beyond the face morphing and the upset stomach, the black feeling and the extra stuff that I cannot describe. I feel as if I am somewhere else from my childhood and if I look out the window I won’t see the semi-tropical backyard in Houston, Texas but the hot, bright cotton fields of the Arkansas delta.

We all have intense memories and strong feelings about our past, but after my diagnosis, I began to understand that sometimes I have more than just a feeling and a strong memory. My brain tricks me into believing I am actually there, reliving a moment in time as if it were the first time, only on major drugs.

I don’t just feel that I am in the Arkansas delta, remembering the heat, the sound of the insects, the angle of the sun and the colors of the fields and sky, but I also have emotions attached to the experience.

The nearest I can come to figuring what happens during these episodes is to assume that the seizure, which is happening in the temporal lobe, is touching an area that stores a memory, because the impressions it brings to my consciousness are intense. This is just a guess, but it is as good as any.

I now have reassessed my situation. I am a morphed, demonic-looking woman trapped in a childhood memory of the Arkansas delta with a headache, an upset stomach and company due to arrive in Houston in a few hours.

What caused it? Probably the joy of the moment and the anticipation of a happy event.

Adrenaline may be my enemy here. Good experiences or bad ones will cause a rise in adrenaline and this possibly triggers a seizure, for me. This may explain why, as a small child, I would get up on Christmas morning and race to the tree to see what Santa left me, stand there, throw up and spend the next few hours trying to get back to that lovely moment.

As for my situation, I worked to control my physical responses. My company arrived and it was a difficult evening. The next day I took the rescue medication before my dinner. I had a great time with my family and felt normal during the outing.

I paid for it later but it was worth it.

Controlling the Black Dog

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The expression “black dog” has been used to describe a state of depression since Roman times. Apparently the Romans felt about dogs the way some feel about black cats with regard to luck and the outcome of future events. Winston Churchill revived the popularity of the term in World War II and it’s been bouncing around in the artistic and literary world ever since.

I happen to like black dogs, and I own black cats, so my use of the term has nothing to do with a dislike for the animal or color. I like the term because it puts a form on depression, making it separate from one’s self. The implication here is that the ‘black dog’ or depression can either overwhelm or be controlled. There is comfort in that, at least for me.

Here is where I tell you that I am not a doctor and I am not recommending any form of treatment to anyone for depression. I am acutely aware of its serious nature and how missteps can lead to permanent damage and death. What I am doing here is telling you what happens to me and how I attempt to work with it. If there are no dialogues about depression and TLE, if no one shares their experiences or thoughts, how will others know how to evaluate their own struggles? You can’t wait for a doctor to tell you how you feel. You must understand it yourself so you can explain it in a way that will help get you the best possible care.

I am assuming that anyone reading this knows what depression is, whether it is from first-hand knowledge or second-hand observation. If you don’t trust your definition, here is a simple description on the NYU site:

Depression is a constellation or set of symptoms including:

• Changes in sleep, mood and appetite
• Decreased interests
• Suicidal thinking
• Poor concentration/attention
• Change in thoughts, movement and speed
• Pains in various parts of the body

I struggle with depression on a regular basis. I consider it manufactured and not a part of my individual makeup. Seizures and the medication that I use for the them are two things that trigger the appearance of depression in my life, and here is how I deal with it on a day-to-day basis.

I have both simple and complex partial seizures that are uncontrolled because no medication has been successful in reducing them. For me, some medications decrease one type of seizure while increasing another, along with causing additional problems such as suicidal thinking and severe nerve pain. My best guess after years of looking at medical research and reading everything I can on this subject is that my body has an autoimmune reaction to the drugs.

Valium is my only rescue drug, as I call it. I use the brand name not the generic, because I am sensitive to even the slightest change in the chemical formula. I can use very tiny amounts when needed to stop muscle contractions caused by the seizure and to quiet some of the other symptoms, but this has its down side as well. Valium causes depression for me. So, I know when I take it that I will be pulled by the dog for at least the next 24 to 48 hours.

The seizures cause depression in me, as well. I realize that this is a bit controversial in the medical world, but this is my reality. The seizures seem to mix an ugly cocktail of chemicals that result in muscle contractions, nerve pain, confusion and depression. Add this dog to the one I grab onto when I take the Valium to eliminate the worst of the physical responses.

Now I have two dogs. Sometimes they have me. They take off running, pulling me in odd directions, taking me to places I had hoped I would never see again. They cause self-loathing, despair and fear where there was none a few hours before. If the anguish is very bad, they can trigger another seizure cycle.

Controlling them requires that I take them on, like I was always told you took on a German shepherd to show who was the master. I look them in the eyes and remind myself of what they are: manufactured responses from electrical circuits in my brain going haywire, remembered pain from taking a drug well-known to cause depression. Then I focus on who I am, on who I have always been, reminding myself that my feelings are really the black dogs.

This does not in any way stop the depression, but it makes it more understandable to me. It helps me realize that at a point in the near future I will no longer feel and react as if there is no hope remaining in my life. I will be myself again. When I am pulled by the dogs, I try to look at where they are taking me instead of allowing them to pull me down that dark road.

Looking at depression as something outside myself is not easy; it requires a constant internal dialogue. I am learning all the time, finding ways to delay responses until I know that the depression has worn off. But, it is hard and it is ugly and my heart goes out to individuals who have depression as a part of their personality, individuals who find no relief.

My stepfather was one of those people. He ended his life with suicide after a particularly hard period. Any depression is serious and deserves a thorough examination to find its source. If you have it, don’t be afraid to really look at, to talk about it, and to determine the best way to protect yourself and those you love and who love you.

Why I Wrote The Book

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I really hate to write. I am sure that sounds strange coming from a person who has a blog and who wrote a book.

I approach a blank page with many of the same feelings of students facing essay questions. I remember a particular test in my college literature class that required an analysis of My Kinsman, Major Molineux by Nathaniel Hawthorne. While I was looking over the questions, I heard a loud groan from behind me and the thud of a head hitting the desk in despair.

Yes, that would be me facing a blank page and trying to write something meaningful about temporal lobe epilepsy. I would rather be analyzing Hawthorne.

All of us have something that drives us to do the things we do, consciously or otherwise. I wrote the book Surviving Wonderland, Living with Temporal Lobe Epilepsy and I attempt to make blog entries because I am always aware of the feelings of aloneness, helplessness and confusion that I experienced when I was first diagnosed.

At the time, I was working as an editor of healthcare manuals. I had a background rich in medical research. Not the kind of research with test tubes, but the kind that describes and links diseases, conditions, symptoms and outcomes. I was an expert on how this information formed the basis for healthcare funding in this country, and I even spoke at conferences, training others on precise classification and collection methods.

Understanding how things fit together in this world of disease was interesting to me until I was the one diagnosed with a disease. Then the research changed from being interesting to being essential.

In those first few years, I found a lot of confusing information on the Web, with very little of it reliable. I felt isolated and frightened a great deal of the time. I also felt tremendous shame as if this disease were some sort of punishment for being a bad person. Karma in spades.

I knew no one else with TLE and often had trouble communicating with my medical doctors. My therapist was the only person that helped me find a sense of equilibrium. Late, my husband and family would take on a huge part of that effort; but in the beginning, when none of us knew what was happening, my therapist offered sensible advice.

“Write a book,” was one of her suggestions. Both my husband and my neurologist echoed this concept at the time. The act of writing was supposed to help me work out my issues while providing a first-hand account of TLE for others to use in looking at their own experiences and challenges.

This seemed to be a doable thing since I was married to a writer and editor. I rationalized that whatever I wrote that was awful, he could perform some sort of magic over it and it would be fixed.

Well, at this point, I should say that writing the book sucked and that I am lucky my husband is still married to me. There were times when I cried at having to relive something that I wanted to share, but also wanted desperately to forget. There were times when my writing was so convoluted that my husband couldn’t fix it and I had to start over. There was many times when he had to work with me on how to say something simply to highlight the information.

The book was finished about the time I had to start getting off the anticonvulsants. My body was rejecting the medication and developing an autoimmune condition in the process. I forgot about the book. There were just too many other things to go through, like drug withdrawals.

When the dust cleared, I started looking for an agent. That’s the last I will say about that process. Luckily for me e-publishing exists and that my husband, who is still speaking to me, was willing to go through the tedious process of conversion, contracts and final edits.

The book exists as Surviving Wonderland, Living with Temporal Lobe Epilepsy . This morning it was #1 on Amazon’s Kindle list for Temporal Lobe Epilepsy. I hope this means that others with TLE at looking at it and realizing, as I finally did, that none of us is really ever alone.

Thanks again to my husband, who has given more to me than any person should be expected to give.

The Museum

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January 23, 2014

Every time I sit at the computer to write about something relating to Temporal Lobe Epilepsy, I wage a small war with myself. I don’t write because I enjoy it. I don’t write because I think I am good at it or because I like the idea of someone reading about my experiences. Quite simply, I know what it is to feel very alone in this illness, and something about that experience compels me to write about it in a place where others who may be suffering in much the same way can discover it. I know from my own search that sometimes the smallest piece of information, something that seems ordinary or even a little odd, can fit a piece of the puzzle into place.

My experiences at the museum seem to be hanging in my mind like pieces of a puzzle which have yet to drop into place.

Our family decided to take a trip into Houston to visit the Museum of Natural History during the Monday holiday. Our group included my husband, older daughter, son-in-law and their children, aged 4 and 2. We went in their van, driving on very busy highways. I sat in the front of the van to avoid as much of the problems with movement and merging as possible, but anyone who drives through Houston realizes there’s always a whole lot of merging going on.

Lately, I had been having a lot of problems while in a car, both as a driver and as a passenger. I know that the movement from outside the car sometimes causes me to go into a seizure cycle. I won’t have a seizure at that moment, but the experience is like adding water to a glass: add enough water to the glass during the day and boom, the seizure will, well, seize me when my body relaxes at night in the process of going to sleep.

There have been other times when I had major problems in the car. Others kept telling me it was an “emotional” thing. I was made to feel childish, broken or incompetent because of my inability (and then reluctance) to drive. I stopped driving around the time that I was 19, and did not resume until I was around 28. It never occurred to me that the size of the car, the streets I went down or the condition of my brain at the time had anything to do with it. I had been branded “hysterical” and the driving was just another symptom.

Only recently did I start to look at the possibility that the driving issues were due to photosensitivity that includes problems with patterns. I recently read a few articles that describe these types of triggers. It is good to find these articles, and to actually know what to look for to understand this type of symptom. My neurologist told me that I was photosensitive as a result of an offhand comment. No conversation about patterns, lights, triggers, etc. Gee. Anyway, I had problems on the way to the museum and not because I am hysterical.

When we arrived at the parking garage, I realized I was off-center. I was angry and didn’t want to be touched. I took a few deep breaths and I told myself everything would be all right.

The museum is huge with lots of dinosaur bones, gem samples and special exhibits. The main hall was filled with people of all ages, all of them talking, it seems. Here is where I began to get a little worried.

Let me try to explain.

Everyone has levels of filters that allow them to move through their day. They hear the radio at work at one level while talking to a co-worker on another. Everyone has had the experience of studying, watching tv and talking on the phone at the same time. People just get used to sorting and sifting sounds. So I was stunned when I realized my ability to do that has gone away.

All the noise in the lobby seemed to be at the same level. I heard the Japanese family standing at the mechanical Tyrannosaurs at the same level that I heard my husband right next to me. The sounds of hundreds of shoes on the stone floor, of children laughing and adults talking overwhelmed me.

My heart started pounding. I became extremely distracted. I fought the urge to run. I kept telling myself that something was wrong with my senses and that I needed to tamp down the fear factor and figure out what I could tolerate.

I found I just couldn’t tolerate people walking close to me or brushing my clothing; the hair on the back of my neck stood up where this happened. I couldn’t tolerate looking up through the skylight because that caused the room to spin as if I were drunk or lifting off the ground. I couldn’t bear any kind of sound.

The Carl Faberge exhibit was fairly empty and quiet. The blessed quiet along with the beauty of the pieces gave me the opportunity to take some deep yoga breaths, sit on a bench and try to determine what triggered inside my brain that caused this reaction. Lots of traffic, but no “bad” lights, the fluorescent lights that guarantee seizure and pain.

I thought of Alice and how it seemed as if I had drunk from a bottle labeled LSD. I remembered what it had been like on Topamax, something I recall frequently. Before the drug almost killed me, it had provided the filter that made me feel completely separate from the rest of the world and perfectly safe.

Just like most people walking around. Only they take it for granted.

GARD (Glutamate/Aspartate Restricted Diet)

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Today I want to share information about GARD that has been growing in popularity with epilepsy patients for several years.

GARD stands for Glutamate/Aspartate Restricted Diet. It was developed by John B. Symes, a licensed veterinarian of 30 years and a sufferer of Celiac Disease.

My experience with this diet has been rather life changing. I was at a point in my struggles with my body that I had almost given up on the idea of eating anything that would not cause intense pain, as well as other symptoms.

I went to a GI doctor to try to find out the cause of this problem. During the years I went to her, she never tested me for Celiac Disease. She merely told me I had problem with nerves, and should eat all the foods that hurt me because I was “babying my system” too much.

She even suggested a narcotic for the pain. Am I the only one that thinks this was probably a stellar example of a poor medical diagnosis?

I limped along, randomly continuing to cut things out of my diet to get relief. Then I read somewhere that a large percentage of people with epilepsy also have Celiac Disease and that researchers are trying to figure out the link. That was enough for me to go on.

I did not bother going to another GI doctor, because I was still angry from the previous experience, and because my primary care doctor did not feel a GI would understand and help me tie the issues to my current condition

With the approval of my PC, I began to systematically cut gluten out of my diet. I got a measure of relief, but soon realized it was not enough.

In the US, there doesn’t seem to be any nutritionists that you can consult on how to configure a diet for your conditions, unless you have diabetes. I looked and looked, thinking that in Houston I would find someone who wasn’t centered on diabetes or weight loss regimes. Even my PC told me such a profession did not really exist in this country.

I started to read all sorts of information on diets and theory. One good book was The Virgin Diet by J.J. Virgin, CNS,CHFS. I found her approach to eliminating problem foods based on potential allergies tremendously helpful. I was still thinking that my issues with gut problems were separate from the seizures.

Then, in my reading about alternative treatments for those of us with drug resistant TLE, I saw GARD listed alongside the Modified Atkins. I tried the Atkins at one point, as well as coconut oil and many other popular treatments, with no success. I knew these approaches worked for others and felt a lot of disappointment when they failed to help me.

It is for this reason that it took me awhile to look at GARD. When I did, I was really surprised to find that I was on the edge of doing a lot of the things he recommends. The benefit was that now I understood why some of these things made such a difference.

The diet is described in 20 numbered sections written for a non-medically oriented person to understand. Each section gives important information and if you are at all interested in trying this you should read each one carefully to get a real picture of the “why” as much as the “how” of it.

The diet eliminates the following:
• Gluten, which comes from wheat, barley and rye
• Casin, which comes from cow’s milk products (but is mostly absent in goat’s milk)
• Soy, which is in nearly everything from chocolate to tuna, and soy’s cousins peanuts and legumes
• Corn, which includes corn syrup
• Aspartame and MSG

Elimination of these foods serves multiple purposes, but it is the one linked to epilepsy that interests me the most.

Dr. Symes maintains glutamic acid (wheat gluten is 25 percent glutamic acid, casin is 20 percent, soy is more than wheat or casin, and corn is less) and aspartic acid (aspartate) can lead to overstimulation of neurons in the form or seizures. He claims it can also reduce pain threshold, sleep disorders and emotional disturbances or neuronal death such as ALS (Lou Gehrig’s Disease).

Dr. Symes states that because the diet is one of elimination of common foods, it is “simple” but not “easy”.

Uh, he has that one right.

I have learned a lot since I started dealing with this issue. For instance, did you know a can of lightly salted mixed nuts contains both milk products as well as wheat? Or that a can of tuna normally contains soy (my husband pointed this out), as does almost any chocolate product at the grocery store.

If you embark on this diet you can expect to learn to live with simple, unprocessed foods and a lot of protein. But here’s the thing: it has reduced some of my seizures and raised the seizure threshold. It also has reduced my chronic pain in damaged nerves, and it certainly has worked toward healing my gut. I feel so much better.

And because of that feeling of increased health, I know I will never be tempted to return to old eating habits again.

In Answer

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Several people have contacted me about options for dealing with fluorescent lights. I am trying these out now. Here are the two Web sites that carry glasses that are supposed to provide a measure of protection.

The first one, TheraSpecs specializes in glasses that protect the wearer from the sun and other forms of light, including fluorescent and computer screens. They are aimed at people with migraines. I think all of us with TLE have migraines, but the concept that the migraines are related to seizures made me think these glasses might help. I will report on their success.

The second Web site features Zeiss Z1 F133 protective lenses. It’s a filtering lens, made by Zeiss in Germany that’s supposed to block 80 percent of light. (F133 is the particular shade of blue found to be most effective for photosensitive patients in clinical trials, according to Zeiss).

These lenses are supposed to prevent seizures. They are expensive. And, they are not easy to get. You can’t just go to the Zeis Web site and order them. Here’s a link to a blog (http://videogameseizures.wordpress.com/2012/03/11/life-with-zeiss-z1-f133-protective-lenses) that has specific instructions about who to contact. It also has responses from others using them. And yes, I plan to get these, too. This blog, by the way, also has very good information about seizures related to video games.

Finally, I discovered an unexpected benefit to the Botox injections I get for my migraines. It appears as if they give me more time under fluorescents. For the last couple of years I had decreased the number of times I went in for injections because of the out-of-pocket costs (We just found out that our insurance carrier will cover them for migraines if my doctor provides the necessary documentation!).

While many aspects of my seizures have improved lately because of my GARD diet and yoga, the photosensitivity has gotten worse. After the injections the other day, I noticed I felt better. My bones still turn to mush and I still feel out of control, but it took longer, giving me time to escape. A few minutes is vital when you have to run into the clinic for a flu shot. There is absolutely no information that I could find proving this, it is simply my personal experience.

What the Lights are Teaching Me

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I sat at the computer and read, “fluorescent lighting is unlikely to present a hazard to photosensitive patients.” This statement was made in the study Fluorescent lighting and epilepsy (www.ncbi.nlm.nih.gov/pubmed/499117). I was having a hard time not feeling anger over the words. What good would that do anyway? I wasn’t face-to-face with the authors and chances were really high none of them has epilepsy, much less the kind triggered by light.

I have this type epilepsy. Heat, hunger, fatigue, anger, medication, and whole groups of other situations can trigger my temporal lobe, but light triggers the worst for me.

Fluorescent light is my evil nemesis. When I go into a room, a store or an office with fluorescent lights, I have about 15 minutes before I am in trouble. I have these glasses my husband found for me that are supposed to help, but they only give me a few more minutes at best.

Here is what happens.

First, I begin to feel weak. I may even stumble or sway if I am walking.

Next, I start to have that “bad feeling” that everything is wrong, and I am desperate to fix the problem. Simply walking out would help, but by now I have convinced myself that I can continue what I’m doing and not have a seizure. (At this point you might think I am not making sense. Well, that is the point, because logical thinking is one of the first things to go.)

As my logical thinking goes downhill, my muscles stiffen. My legs don’t want to bend right. Walking is difficult. My arms hurt. My head hurts. My gut begins to twist. My bone marrow feels like it is melting. I feel a burning pain throughout nervous system. Eventually, I have a Complex Seizure if I don’t take my rescue medication.

Sometimes the seizures come too fast to avoid. Not too long ago, I begged my husband to let me go into Hobby Lobby for “just 15 minutes”. I reasoned that I needed art supplies and wrapping paper that he just was not able to pick out for me.

I was hit before I made it half way to the art supplies. I felt myself swirling. I was aware of others around me, but I couldn’t seem to connect with them. I felt like I was in a glass bubble. My husband walked up and, seeing my distress, said something to me. I turned in the opposite direction and ran from him. He, being the good person that he is most of the time, ran after me, knowing exactly what was happening.

Quite a few people have blogged about similar experiences, even if the scientific community is slow to acknowledge the fluorescent effects. Up until yesterday, I thought I understood what the lights did to me. That’s when I had to go to the doctor. I was at the office for almost two hours, under unrelenting fluorescents. I left at the bone marrow-melting phase and went right home and took the rescue medication.

I felt upset and ashamed of my behavior at the office. These feelings are not new, but this time, thanks to the medication, I was calm enough to look back and try to piece things together. It was then that I realized I became emotional, aggressive and angry about the time that my logic began to fail and I started to stagger.

For me, this revelation was huge. It made perfect sense to me that as the lights began to trigger the seizure function in my brain, given where the epilepsy is located, it would impact my emotional stability.

I wondered if this sense of shame and regret that comes after light exposure is from the effect on my emotions, much like the disruption of my motor abilities.

Knowing that my logical self will be replaced by an angry and emotional one after a given period of exposure gives me some odd sense of control. At least I can warn people around me, and afterwards, allow myself some compassion.

About three percent of us with epilepsy are photosensitive, or have seizures triggered by light. It seems like a small percentage now, but that number could grow if more effort is not made to protect the public from entertainment that is too much to handle, even for a normal brain.

Both Japan and England have reported huge surges in first-time emergency room visits resulting from seizures triggered by graphic-heavy television commercials and video games. Medical emergencies related to seizures may spike unless the entertainment industry and the makers of fluorescent lights figure out what they’re doing to us, and maybe to the “normals.”

Brains are more fragile than you think.

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