Fear and Loathing in the Seizure Cycle


, , , , , , , , , , , , ,

A couple of weeks ago I learned a severe lesson. It was valuable and interesting, but difficult to appreciate while I was living through it. I wanted to put it out into the blog world because I can’t believe that I am the only one struggling with these outcomes.

While each of us is different, in as much as our brains and personalities are different, some responses have to be similar. Knowing that others experience and survive the same things often soothes the loneliness and fear that accompany my condition.

For me, this episode began with good things, as my problems often do, with too much family, too much laughter, too much noise, too much movement, and just a bit of confusion. I feel my adrenaline level rising. Why not? I am happy, and I am responding like any other human being to happiness.

But adrenaline is a trigger for me.

I went to bed tired after a satisfying day of food, baths for dirty grandchildren, and the hilarity that sometimes arises from combining kids, water, and a dog. I woke up to a starburst of intense pain and fear. Although I had not opened my eyes, I couldn’t see anything but the inside of a star.

I needed several heartbeats to recognize the intense pain that came from within and radiated out of my body in electric waves as if I were some type of electrical conductor. Intense fear followed. I was mindlessly afraid, but I didn’t know why or of what.

The pain and the fear took my breath away, literally, and I started choking. At this point, my body’s survival mode kicked in and I pulled my attention away from the star and moved my body.

Electricity washed over me again and I opened my eyes.

I took a deep breath and told myself I had a seizure and I needed to calm down, that absolutely nothing I was thinking or experiencing was real.

Talking to myself usually helps. It didn’t this time. A new wave of electricity hit men. Then the waves came quickly as if someone was using a Taser on me. My chest and head began to hurt even though the earlier pain was receding.

I began to argue with myself. One side wanted me to wake up my husband in case I was dying; the other side was calling me stupid and accusing me of overreacting. You have temporal lobe epilepsy, I told myself, so this is what it is.

Pretty soon, my inner dialogue became strange, or stranger, so I did the responsible thing: I got up, stumbled to the bathroom and took a tiny dose of Valium, my “rescue medication.”

The electrical shocks hit me another couple of times before I felt my body relax, my breathing become regular, and the pain lessen. The Valium had saved me from a series of seizures, but the problems had just started.

I no longer take drugs for my seizures, prescription or otherwise. The Valium is strictly for emergencies. The reason is both simple and complicated. I have Celiac, an autoimmune condition secondary to the TLE. This is relatively common. I read somewhere the other day that as many as 30 percent of epileptics may have Celiac, and that neurologists should automatically order Celiac tests for new patients.

As I understand it, Celiac affects the way the body absorbs or reacts to medications. In addition, untreated Celiac can cause seizures. I noticed that I had a reduction in a certain type of seizure once I started treating the Celiac. It doesn’t return unless I am exposed to gluten. That’s the simple part.

What is not so simple is that in addition to, or probably because of, the Celiac, I have a autoimmune reaction to all drugs. My body reacts badly, treating the medication as a poison and sending me into a seizure. Even anti-seizure drugs cause them. Anticonvulsants will stop the initial seizure, but they will cause rebound seizures with very nasty side effects.

I took Valium a couple of times a week for several years. I cut my pills into fourths thinking I was keeping the dosage low enough that I wouldn’t get hurt. But recently I began to question its effectiveness. I thought I should probably take it only in an absolute emergency, that way I would preserve its ability to help me when I needed it the most. It was really the last option left to me other than cannabidiol (CBD) oil, which is still not available in Texas.

I saw a change during the three months without Valium. I recovered quickly from seizures, even though I was more uncomfortable around the seizure episodes. I was no longer depressed and in constant pain. I began to take for granted not experiencing pain in the evenings, not feeling the weight of fatigue or the hopeless that often accompanied the seizure cycles.

Back to the nightmare.

Once I took the Valium, I knew the situation would be prolonged. I just did not know what would happen. I found out the next morning. I felt like I had been hit by a truck or had someone take a baseball bat to me, or both. And, worse, I felt hopeless, seeing images of death weave their way into my thoughts.

But typically, I did not catch on. I was ill-tempered and tired, but clueless. The depression deepened. I began to play solitaire, which should have been a signal. But that went unnoticed, too.

Then my phone dinged with a notice from Facebook. I checked my account to see a handful of people had “liked” a picture I had posted the previous day. I became unreasonably angry and suspicious. And confused. I was really mad, but I didn’t understand why. I believed my Facebook contacts were the cause of my anger, suspicion, and confusion. It was at this point that I realized I was in another seizure cycle. The Valium was creating auras and I was ramping up for another seizure or series of seizures.

The Valium removed the immediate problem the night before, but it restarted the process, this time with a really negative aura. The only thing to do at this point was to shut down and wait, remove myself as much as possible from others, and let my family know what was happening.

I reminded myself that I could not trust any perceptions or feelings. I did not bother trying to draw, because I knew it would result in a distortion. I colored in an adult coloring book, trying to allow the slow movements and the colors to work their soothing magic on my brain. I listened to audiobooks and did yoga.

Eventually, I had another seizure similar to the one that started the whole thing. It was less painful and resulted in only one episode. This time I didn’t take the drug.

The next morning I woke up and took a physical and mental inventory. I felt hope, I felt creativity, and I felt happiness. There was some pain, but I believed it could be worked out.

Lesson learned.

The next time I will know the price of trying to stop a seizure. Like Alice when she leaves the Mad Hatter’s Tea Party and says to herself, “I will manage better next time.”

Relax, I’ve Got Your Head


, , ,

Last week I went to the hairdresser. This outing with my husband is always a diversion for me since I am rarely able to leave the house. I enjoy interacting with people other than family members for a change, so I tolerate the trip into the city. I also like Trey and her shop in an old house.

While I was leaning back over the shampoo sink, Trey said “Relax, I’ve got your head.”

It was one of those things that immediately started up my brain. It sounded like the common saying, “I’ve got your back” that we are used to hearing, whether it’s in the workplace or at home. I think we would all agree that it means the other person is willing to protect you or stand up for you in a particular situation.

That said, the thought came to me that “I’ve got your head” could mean quite a bit more to someone with our particular seizure issues.

Think about it for a minute. It could mean that the other person understands and supports your personal struggle with seizures. The person has your head, is there to look out for you when you can’t always be alert enough to look out for yourself.

So as Trey washed my hair, I thought of who had my head.

The first thought was one of regret and resignation that I did not have someone like that in the medical field. I have not been able to find a doctor recently who did not want to write a “script” and have me move on after my seven minutes were up. This has always puzzled me since issues with the brain seem to me to be much more complex than other issues with other organs simply because our consciousness is encased within our brain. Maybe the fault lies with the fact that there seems to be little specialization within the field of Neurology, when one would assume that there would be more specialization due to the complexities encountered.

After putting that unhappy thought aside, I thought about who does have my head. The image of my husband came to mind. His thoughts are always for me first, and how events and surroundings will affect me. I feel sometimes as if I live within a snow globe, encased in glass. Something will occur to shake up my world, turning it upside down, but I am still in it. I never get out. And he is probably the only person who truly knows this since he lives with me from day to day. He can see how even the smallest things impact me. He sees what I hide from others.

Then there’s my family. This condition has brought home strongly how close a family can be. I see all the things they do to bring me into the group or help me live my life productively. Each person has contributed to my struggle with expressions of love and help. Each has given me some valuable personal talent to guide me back to a meaningful life.

Along with family, I have a few friends who have been with me over the years and have experienced the frustration of seeing me change from a seemingly normal individual into someone with special needs and an uncertain personality. They have stuck with me through the worst. They have my head, too.

There is the saying that if people see you at your very worst and still love you, then they are true friends. Well, I have true friends. Not a lot of them. There were plenty that ran off when the problems started; but, the ones who stayed are worth everything to me.

So, in thinking on this deal about who has my head, I have gone through an exercise of gratitude. But who or what is the most important point of the exercise? I realize that it is my belief in a personal God. I believe that God has my head and has helped me through the changes that this condition inflicted on me and my family. Every time I reached a point of giving up, I got a message or sign pointing the way out. These signs were things like research papers posted on the Internet, something someone said that started a productive thought process, an intuition about a situation that led to an answer, and so forth.

I went from roaring right up to the threshold of a mental breakdown to a logical understanding of what is happening, what it affects, what other conditions I have developed as a result, what to take and what not to take to work toward a more normal and peaceful life, and most days an acceptance of the situation.

I didn’t do it alone; I had to develop an inner peace and self-confidence that would allow me to accept the answers I find. Could I have done this on my own? In a word: No. Without my belief in God, I would be still locked within the breakdown.

Recently, I saw a post from Byrn Mawr, apparently by a person who doesn’t have TLE:

“It’s instructive to observe the people who have Temporal Lobe epilepsy and related brain damage. Despite their awareness that this damage causes hyper-religiosity, they persist in religious behavior. They are so controlled by their damaged brains that they rationalize that they continue their religious beliefs because they choose to, and claim that the brain damage has nothing to do with it.”

Wow. My first thought is that this person’s karma is going to be rough. But, as for me, I am OK. I have an abundance of love from people who “have my head.”

I also have my belief that God is with me and will use this situation for good. So He has my head, too.



Hero of Your Own Story


, , , , , ,

Ten years ago today I was suffering from terrible pain. I thought I had developed intractable migraines, which I probably had, but with a twist: seizures.

I experienced various types of simple seizures throughout my life without understanding them. I was told by a psychiatrist, without the benefit of a neurological exam or even an in-depth psychological evaluation, that I was hysterical. Because of this pronouncement, I experienced a great deal of shame and did not offer a full medical history when seeing doctors about my migraines. I kept things under wraps until ten years ago when the dam broke and all the pain, hallucinations and partial seizures took hold of my life with a vengeance.

It’s been a long ten years in many respects, and now I choose, because each of us can, to see myself as the hero of my own story.

When I think of heroes, I think of Odysseus, the Greek hero of the Trojan War who experienced a fantastic ten year journey when he left Troy to return to his native Ithaca, Greece. I was raised on the Odyssey so I know him. I like him. Odysseus is not your average superhero. His success comes not from being powerful or brave, unlike the superheroes of today, but from being clever and resourceful.

If I were to compare my ten year journey to his, I would start with the resourceful bit. I have a lot of resources, particularly the Internet. Am I clever? Well, my college classes taught me to evaluate and understand statistical studies and to separate opinions from facts. So yes, I would consider myself somewhat clever and certainly resourceful, like Odysseus.

He and I have a lot in common. The initial emergence of epilepsy into my life was like being attacked from all sides. It was my Trojan War. There was a great deal of pain; hallucinations that I recognized as hallucinations; hallucinations that I thought were real; partial seizures where I lost consciousness for a moment; nausea; muscle pain; fear; a lot more fear; anxiety; insomnia; generalized seizures; personality changes.

This was a war my mind perpetrated on my body.

I felt like I was at war with myself.

At first I thought my war ended with the diagnosis and the administration of medication. I was like Odysseus in this misunderstanding. We thought we had won and it was downhill coasting from there. Neither of us realized the most challenging parts of our lives were coming.

As Odysseus attempted to sail home with his full complement of soldiers, he encounters situation after situation that test him and his resourcefulness. His first stop was on the island of the Lotus Eaters who gave a drug, the lotus leaves, to his men, leaving them stoned and unwilling to move or work to get home.

Once he got them out of drug haze and back on the boat, he stopped on the island of the Cyclops for water where the single-eyed monster took him captive, ate a few of his men, and caused a lot of problems as the group escaped.

Aeolus gave Odysseus a bag of winds to blow them home, but his men opened the bag at the wrong time and blew them all off course.

On the island of Aeaea he met the dangerous goddess Circe who gave his men a potion that turned them into beasts, literally. It took Odysseus a year to work that one around to his advantage before he returned his men into human form and got back on the boats.

Next comes the land of the Laestrygonians, who happen to be cannibals. Only Odysseus and the men in his boat escape them.

His fighting force from Ithaca is now reduced to a single boat. He journeys to the land of the dead and has a few heart-to-hearts with various key individuals in his life before the gods allow him to move on.

After this, he is immediately put in the path of the Sirens, creatures who sing sailors to their death on rocky shores because their pull is so irresistible. Here he plugs up the ears of his crew with wax, but ties himself to the mast so he can hear their song. His intellectual curiosity is satisfied, he’s a little crazy by this time, but he is safe.

Still losing men along the way, Odysseus must sail between Scylla, a six headed monster who swallows sailors as they attempt to sail past, and Charybdis, a tremendous whirlpool.

Then his boat stops at the Island of Thrinacia, the land of the sun god Hellos. It is Hellos’ cattle that graze there and everyone is forbidden to touch them. Of course our hero cannot control his men, who all die after eating steak for dinner.

With his men dead and ship destroyed by Hellos, Odysseus is stranded on an island with Calypso, a witch, although an attractive one, for seven years. Calypso is eventually convinced to release him to the King of Phaeacia who equips him to return home.

When Odysseus gets to Ithaca ,he finds his palace overrun with slimy suiters trying to marry his wife and murder his son. He is a stranger in his own home and at first no good to his family. He must once again use his resources to break free of the bad, confining situations and to reunite with his beloved wife and son. His wife Penelope has been waiting for him all these years and is ready to resume their life together. We leave Odysseus successful at last after his ten year journey.

So if you have stuck with me this long, you may have some idea why I compare my odyssey with Odysseus’s.

I start my journey after the “war” on my body with doctors who prescribed a variety of drugs. And like Odysseus’s crew on the Island of the Lotus Eaters, I soon fall into addiction. I had to forcefully withdraw from most of the drugs to move on, to improve.

The Cyclops reminds me of some of my medical treatment. I felt like my doctors were not really seeing me or understanding my condition. I barely escaped with my life a few times, quite literally.

Often well-meaning research has “blown” me completely off the path and made my journey more difficult. I encountered the dangerous goddess Circe and was turned into a beast with some of the anticonvulsants that triggered rage and suicidal impulses.

Along the way I have lost men. By this I mean the soldiers we all have that shore us up and keep us going. They are personal and professional successes, talents, abilities, income, friends, family, job, self-esteem and self-worth (those wonderful twins), and anything else you can name that truly impacts your life.

I have been to the land of the dead to have conversations with those I lost in an attempt to understand where my life was going. Yes, technically I was having seizures at the time, but that doesn’t change the need for the answers.

I continually heard the Siren’s song. It told me that if I were to take the drugs and the painkillers I would be better, happier and all problems would cease. Oh, and they said I could smoke and drink Vodka too.

I sailed between the monster of lapsing into permanent illness and the whirlpool of becoming so caught up in my research that I lost sight of myself as a person.

I have had doctors destroy all that I built up as they act like the sun god Hellos, not wanting me to wander into their territory no matter how hungry I was for answers.

I have felt the stalemate of life passing with no purpose, no matter how easy it looked from the outside. Calypso seduced me into a level of numbness for a while.

Like Odysseus, I finally made it home to find my palace in confusion and realizing I must fight my way back into my family’s life and heart. Odysseus does this with a giant bow, a weapon associated with the heart. He also took the disguise of a beggar. I did as well. I had to humble myself to understand how I was going to weave my family back into a whole piece after my illness had almost destroyed it.

In the end, Odysseus found his way back to Penelope. Here, the character actually means two things to me. First, I see my husband as Penelope, never giving up despite falling into depression. When I finally came home I was accepted as was Odysseus. I also see Penelope as the healthy part of me that has been waiting through the last ten years to surface. “I was here all along” she says, “waiting to step back into you with the knowledge that you will be OK”.

And I am. I am the hero of my own story. So are all of you.

Jamais Vu


, , , , , , , ,

Not long ago, I was talking to a physician in the hospital about my temporal lobe epilepsy. He would not admit it, but he did not know much about TLE because he kept trying to convince me that I did not have epilepsy.

As a matter of fact, he refused to believe my MRI. He wanted me to believe I was the victim of some unremembered sexual assault (which was purely “grab at any straw” speculation because we had not discussed anything about my past not directly related to my TLE and treatments). To this doctor, I couldn’t have TLE because he didn’t know anything about it.

He said something else that caught my attention when I stopped reeling from his response. “Well, you know, most people experience déjà vu. It doesn’t mean that you have epilepsy.”

(Quick note. Déjà vu, from the French for already seen, is the strong sensation that you have already done or seen what you are doing or seeing at the moment, which may not be true.)

I laughed and said that I didn’t have many déjà vu experiences as a rule, but I often had jamais vu. As he looked at me with a puzzled expression, I realized he didn’t know about jamias vu. That’s when I began to think about what jamais vu meant to me and how often it was recognized in other people.

The best definition I have seen of jamais vu comes from the Merriam-Webster Medical Dictionary, “a disorder of memory characterized by the illusion that the familiar is being encountered for the first time.”

When I look back at my jamais vu experiences before my TLE diagnosis, I remember a great deal of shame and embarrassment.

I did not have incidents where I failed to recognize a person I knew, which is often the example you find when looking up the term. Instead, it was always an act or a process that completely caught me off-guard, like the time I went to dial the phone (in the days of a rotary dial) and just looked at it, having forgotten how to use it. I felt frozen in the moment as if something had gone terribly wrong, but I didn’t know what.

The fact that I remember that incident all these years later is probably an indication that it resulted from something other than stress, which happens to all of us at some time. I have looked out at an audience of 500 individuals waiting for me start my presentation, only to forget what I was going to say. That is a stress-related incident, which is probably not what we are talking about here.

I am not sure how you can really separate a stress reaction from jamais vu in some circumstances. I’m not a doctor, remember?

Other events are easier to label jamais vu:

  • Hearing words, as a child, and not recognizing them;
  • Forgetting how to put a key in the lock on my door; and
  • Leaving out the main ingredients of a recipe, such as eggs in deviled eggs.

The deviled-eggs incident happened after church when I was supposed to fix the eggs for lunch. I had all the ingredients except the eggs. I was staring at the bowl when everyone came home from church, trying to figure out why my eggs didn’t look my mother’s eggs.

So, people labeled me as acting dumb or being dopey. And honestly, I believed them.

My anti-seizure drugs, or anti-epilepsy drugs (AEDs), actually caused me to have more seizures, which caused me to have more jamais vu when it came to recognizing and identifying common objects like a table. I knew what the table was, but I couldn’t reach far enough into my memory to grasp the name.

These days, my jamais vu usually involves seeing something that I have looked at every day, sometimes for 20 years, and thinking it is new, having no recollection of having seen it before.

A small area of chipped paint on the bathroom wall is visible only when I’m taking a bath. This chip has been there since we moved into the house 18 years ago, but more than once I have looked at it and gotten upset about it. And I would be upset for about 30 minutes before I remembered it was not new.

I look at books and wonder when they showed up. I see a picture on the wall, one I pass by several times a day, and go into near hysteria trying to find the old one that should be there, only to realize I gave it to my daughter years ago, which I had forgotten during the better part of the hour I spent tearing up the house looking for it.

Needless to say, I try to stay as quiet as possible about my “discoveries” until I can figure out if they are true or the result of a seizure. Thankfully, my husband has some indication of the distress on my part and will patiently help me reconstruct an event when it seems that I am not going to pull it back in myself.

It is because these episodes bring distress and confusion that I think it’s important to recognize they are happening. It’s my opinion that jamais vu slips through the cracks when we’re looking at all the other aspects of TLE.

If jamais vu is a simple seizure, you should be aware that you are having one. If you are like me, it’s also good to know you are not just being ridiculous.

You can read about jamais vu if you search online long enough. And when you do, you’ll find many theories on what is happening, some of which are ridiculous, in my opinion.

But, more important, if it is happening to you, look at it, remember everything you can about the events surrounding it, and come to your own conclusions about what it means for you. Don’t let people label you as being dumb or dopey or any other label that makes you feel badly about yourself and your condition.

TLE is difficult enough without having to deal with the belittlement from others.

Medical Wilderness


, , , , , , , , , , , ,

Every major religion tells the stories about individuals who travel through the wilderness in search of guidance. Whether you are Christian, Jewish, Buddhist, Moslem, Native American or any of the countless other faiths that populate the globe, you have a story about a spiritual wilderness journey that provides answers to the individual with the strength and patience to withstand the trials, the physical adversities.

The wilderness is where the individual seeks to connect with others on a higher level, to benefit from their knowledge, to reveal the sojourner’s highest and best self.

In a spiritual wilderness, the individual has stepped out of the comfort zone, the preferred environment, and will experience physical and spiritual discomfort, loneliness, impatience, frustration, and doubt.

Since I am a Christian, I am most familiar with the Exodus stories of the Jews during their 40 years in the wilderness; and of Christ in the wilderness gathering strength for the ministry to come. But there are many other wilderness accounts, such as Buddha under the Bodhi tree waiting for answers, and of Native Americans alone in the desert seeking direction for their lives.

I believe that those of us with Temporal Lobe Epilepsy will make a journey through a medical wilderness at some point in our life. We may have different reasons, but the goals are the same: enlightenment and revelation.

When I began to think of the concept that a spiritual wilderness and a medical wilderness have a lot in common, I looked for a definition for medical wilderness, but I only found links to wilderness medicine. Not the same thing. How odd that this concept is not common.

If you take the criteria for a spiritual wilderness that I mentioned earlier and apply them to a personal medical crisis, they fit. How many of us knowingly walk into the unknown wilderness when looking for answers to questions that go beyond medication lists and physical limitations? We are alone in this and it’s up to us to move through it. We wait, we research, we read, we think it through thousands of times trying to reach a logical conclusion. We reach out to others in an attempt to gather information from those who have done this before, hoping someone will understand and give us the information that fits our personal challenges.

Many of us see each day as a physically challenging event and work to find the patience to fight bitterness and anger. We seek, all of us, at one time or another, to understand how TLE fits into who we are and how we are to live the rest of our life.

We all want to rise above the stigma and accept the gifts.

In simpler terms, we are often lonely, in pain, depressed, ashamed, and in the dark (mentally, emotionally, and spiritually). We are often reaching out for more information, more understanding, more self-awareness and more compassion from other and from ourselves.

TLE is not just a chronic illness that a pill can modify or cure. It is a condition in our brains that impacts not only who we are as individuals, but also the way we see and understand the world. Even when seizures stop, the TLE personality continues to exist.

Because it is in our brains…

The Colors I See


, , , , , , , , , , ,

LOG“at any rate, there’s no harm in trying.”
Lewis Carroll, Alice’s Adventures in Wonderland

This last week I embarked on a journey of sorts to fix, once and for all, the problem I have with light. That sounds like such a tall order, and it is probably unrealistic to expect to find a quick solution. But I wanted this solved and as so often happens when I set out to solve a problem, it usually gets bigger, more complicated and more convoluted. My problems with light are no exception.

If you drink much from a bottle marked ‘poison’ it is certain to disagree with you sooner or later.”
Lewis Carroll

In the beginning, as a five-year-old-child, I had terrible headaches. I didn’t know I had headaches exactly, I just knew that I was feeling bad when others were feeling good. I also noticed that direct sunlight made things worse. My grandmother used to call me a “a child of gloom” because I loved cloudy or rainy days. I also loved to swim and, oddly enough, found that under the water the harsh South Arkansas sunlight was filtered and softened in a way that always comforted me.

My grandparents took me on a cross-country car trip when I was twelve. All I remember about Arizona was pain. Some thirty-five years later, traveling on business, I felt the same way.

Migraines became my way of life. I tried everything to stop them. At one point, a doctor prescribed belladonna, a potent poison, and even that didn’t work. I was unable to respond to any drug that helped migraines. In time, my doctors moved on to narcotics to treat the pain and I found out quickly that this was a bad idea.

Finally, after a two-month period of continual pain, my doctor suggested Botox injections and washed her hands of me, my frantic calls, and my unsolvable medication problem. At the time, Botox was new to migraine prevention. I got a good doctor who actually knew something about the face and had experience with the medication so I wouldn’t look like a stroke victim.

In the 15 years that I have been going to her for the shots I have done a number of experiments with positioning, learning my own lessons about what works and what makes them worse. Overall, I have been very relieved. Relieved of pain.

There is, however, one issue with the shots that I learned the hard way. Botox stops the migraine pain at the point of injection, but it doesn’t stop all the other associated issues. For example, with me, it won’t stop the nausea or the aura. It’s as if the migraine is going on, but you just can’t feel it, so everything that would happen with the migraine is still there.

All of this is old information. Old and taken for granted. So I was surprised when it became relevant again last week.

When the epilepsy broke through in 2005, one of the more extreme symptoms was an inability to tolerate fluorescent light, TV movement, computer screens, etc. I am not even going to talk about video games, movies in a theater, or nightclubs.

Of all the light-related issues, the fluorescent lights are the most serious. A five-minute stay in Hobby Lobby had me moving with a limp, running from my husband in confusion, and suffering a partial seizure. More than once I am a bit ashamed to say, since I like their wrapping paper.

Grocery stores, pharmacies, fast food restaurants, schools, church halls, and retail stores are all out. My husband has to shop for groceries alone each week. I have become dependent on Amazon for things like vitamins, reading materials, art supplies, and birthday gifts. Any trip to the doctor, the optometrist or the dentist will result in seizures unless I take my rescue medication beforehand, and then I’ll suffer later from the effects of the medication.

I assumed that since I had epilepsy AND I was photosensitive that the two conditions were connected. It seemed logical since my light sensitivity got worse after the temporal lobe epilepsy broke through.

So, this week I decided I would solve the problem. It began with my optometrist. He claimed that grey lenses would do the trick, that for years people used them for this purpose until they fell out of fashion or favor. He’s been doing this for many years, so I believed him.

Next, I looked at research from the National Institutes of Health. A paper there listed blue as the best color having beat out grey, amber and brown. That made sense to me since I had brown/amber lenses specifically for fluorescent light problems and they did not protect me.

Onto other research from Utah that said pink or rose colored lenses work best.

Anecdotal information claimed brown worked better.

I literally spent the better part of two days going from one link to another trying to determine what color I should use. During this process, I ordered some fit-overs in grey/blue to help until I could have prescription lenses ground in the color I thought I needed. I thought blue might work since amber didn’t seem to be doing it.

The grey/blue fit-overs worked moderately well. I experienced problems in only one out of three places with fluorescent lights, which afforded me a good measure of freedom. So, I thought I would select the blue color, given my moderate success.

But no, my daughter argued. A pair of glasses would cover about half of my vision field unprotected. She wanted me to stick with the fit-overs that definitely covered almost all of my field of vision. The problem there was that I thought I looked like a bug. I received a withering look when I mentioned it. (I thought of the Rolling Stones song that says “you can’t always get what you want, but if you try sometimes, well ,you might find you get what you need.”)

OK! Blue fit-overs. Then came the next problem.

During all the research on colors and seizures related to light and so forth, I came across a type of migraine called a Hemiplegic Migraine, a migraine that paralyses one side of the body, causing a temporary weakness. It may affect the face, an arm, or a leg. And, it may bring with it numbness or that “pins and needles” feeling.

Along with the physical effects, the hemiplegic migraine causes symptoms similar to those of a stroke, such as speech difficulties, vision problems, or confusion. Doctors say these symptoms usually go away after about 24 hours, but can last as long as several days.

“Who in the world am I? Ah, that’s the great puzzle.”
Lewis Carroll, Alice in Wonderland

I was stunned. This sounded a lot like what I thought was an aura preceding a seizure. I suffered greatly from these symptoms to the extent that I even had right-sided nerve damage in my arm and leg detected by an EMG. At the time the neurologist asked me what had caused the damage. I remember looking at her thinking “aren’t you supposed to know the answer to that one?”

The nerve damage, my substantial history of migraines, my symptoms of weakness, pain, pins and needles, and a fever-like feeling that lasted for hours had gone unidentified with all five of the neurologists who had treated me from the beginning.

So what was happening here? Was I having these Hemiplegic migraines but not aware of them because of the Botox? If that was the case, were these migraines eventually pushing my body into a seizure each time? Was I having a seizure that was the result of the migraine activity and not the epilepsy? Were all the symptoms the result of the epilepsy? Were my migraines just the garden-variety?

Was I a hypochondriac? Or, did I just find an important piece of my personal puzzle?

As usual, I don’t know the answers to any of these questions. I only know that the blue/grey lenses are working for me. For now, at least.

Happiness and Cheer (or is that Fear?)


, , , , , , ,

This year’s holiday was great for me. I saw my entire family through a week’s time.

There are no words to express how much I love my family and how seeing them is far more important than any destination vacation or expensive gift. But, there is always a drawback, a problem or a fear. I am not talking about family squabbles over the white meat on the turkey or hurt feelings about that ugly (inappropriate or meaningless, you insert the word) gift you get. I am referring to those times when the games are too loud or everyone else is drinking, going geocaching or to the movies and you suddenly feel the weight of your condition bearing down on you.

If you are anything like I am, the first instinct is to push back out of anger. I used to be able to hang in with the loudest game, eat what I wanted, drink vodka and enjoy it and smoke a cigarette outside in the cold air with other family members. The louder the Christmas, the more family members and dogs, the better I liked it. Those holidays made me really feel connected and happy. The confusion was part of it, just like the liqueur, food and games.

Now, none of this is available to me. The fifteen tins of fudge, buckeyes and sugar cookies are off limits because I developed Celiac Disease as a result of the epilepsy. The noise from the family games echoes through my brain in a very unpleasant way. Just smelling vodka causes pain to shoot through my head. And as for smoking, that is a sure-fire trigger for a bad seizure. In other words, the things that used to provide fun, happiness and a sense of connection are now responsible for physical pain and suffering. I won’t even go into sleep deprivation and holiday shopping under fluorescent lights.

So, how do we (and I am assuming that I am not the only one of us) deal with the substitution of pain for pleasure? I am not sure I know the answer. What I do know is that if you spend the entire holidays feeling sorry for yourself or angry about the change in your body, you will miss some of your life’s most important moments.

I didn’t smoke a cigarette outside with my brother, but I did go for a walk with my husband in the cold night air and watch the stars come out. I didn’t get to drink vodka, but I found I really didn’t need it to appreciate the joy of the moment. And while I did miss out on some of the activities, I found my family was pretty generous about trying to go the extra mile to make me feel included.

I would like to think that at some point I won’t be angry or afraid of what I will miss, how I will appear to others by not participating, or left with a feeling of being left out. The condition is an adjustment in our lives that requires thought, planning and self compassion. It allows us to develop grace in the face of difficulty, embarrassment and just sadness.

This New Year’s resolution will be to live my life with a complete lack of regret or feelings of deprivation. And who knows, perhaps in doing this I will be able to discover more moments, more joys than ever before.

Shower of golden light


, , , , , , , , , , ,

Last night, I got into bed knowing I was showing the warning signs of a seizure on the way: nerve pain, irritability, and a sudden feeling of anxiety. Lately, I have been trying not to run to the Valium bottle when I think I am going to have a seizure. The Valium seldom stops it. It merely helps with the physical aftermath. But it can hide certain signs before, during and after the seizure. I want to know and to separate my feelings from those generated by the electric cocktail in my brain.

I got into bed and moved around a lot, failing to get comfortable. My husband began to read out loud. He does this for me because the sound of a human voice is very soothing to that restless part of my brain.

I closed my eyes and listened to the words until I felt the electricity rising in my body. I tend to think of it as a wave that washes over me. Everything behind my eyelids went yellow, like intense sunlight as the wave passed over. My husband’s voice was in the background, but I was looking into pure sunlight. Gold rain fell on me as the electricity danced across my skin, my eyelids, and my mouth. I felt a tightness in my chest, twisting of my gut, and a lifting of my body.

I was sad when the electricity slowly faded and stopped. Sad, because the beautiful sight was gone, leaving in its place the chemical cocktail in my brain that produced pain, nausea, anxiety, and depression.

It’s sometimes easy to believe God is speaking directly to you during showers of light and other seizure experiences. But, who’s to say he isn’t?

My Song?


, , , , , , , , , , , , , , ,

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)

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.
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.

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


, , , , , , , , , , , , , , , , , , , ,

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.