In the night

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antiepilepsy drugs, epilepsy symptoms, living with temporal lobe epilepsy, nerve pain, prescription medication, seizures, temporal lobe, temporal lobe seizures, TLE

“I wonder if I’ve been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different.” Alice’s Adventures in Wonderland, Lewis Carroll

 

Night is an old and familiar foe, one I have fought since childhood. Whenever I have a good night’s sleep I feel as if I have accomplished something wonderful. TLE has made all the difference between falling gently asleep versus wrestling with an imaginary enemy.

As a child, I had always had some difficulty with pain, usually head pain, and a change in perception during the night. I was often uncomfortable without being able to put my finger on why I couldn’t sleep well. Then, in the early days of my diagnosis I would not only feel things, but I would also see them. Just closing my eyes seemed to set in motion a whole series of physical responses such as restlessness, pain, voices, and what I think of as alphabet soup. It’s not really alphabet soup— it’s swirling, disturbing visions of demons or images of numbers that seem to be in lights. Some nights it was one light, either pink or green, that bore down on me like the headlight of an oncoming train moving behind my closed eyelids. I was terrified in the beginning as this developed, but eventually stopped being affected by the show.  In addition to the fireworks and scary images, there was a feeling of being touched. Invisible hands running up and down an arm or leg, or even moving across my cheek.

Oddly, I remember the tactical experiences from childhood more than anything else. The sensation of touch on my legs made me kick them in the night until I fell asleep, worn out from the constant movement. In college, things escalated due to the stressors I had added to my life. I was now staying up very late with my boyfriend (now my husband) drinking coffee, smoking cigarettes and discussing everything you can imagine. I did not want to give up these late night conversations and at the time had no clue what they were doing to the condition I did not even know I had. When the violent, visual, and tactical hallucinations started, I was at a loss.

All of this night stuff presented a problem. Try telling your doctor that you see the morphing face of Satan and an oncoming train when you close your eyes. So yeah, I kept that whole thing to myself. I cannot even imagine having a doctor not want to refer me to a psychiatrist as many suggested doing. The latest unfortunately was last year when I complained to my GP that I was feeling a lot of fatigue, depression, and no appetite. She immediately suggested I head down the hall to be evaluated by the resident psychiatrist. I resisted, then went home to call a healthcare professional in another state and explained my problem. After some probing of the details, she determined I was unable to process cyanocobalamin, a synthetic form of Vitamin B12. It was in six products I was taking at the time. I stopped taking it and I was fine a few weeks later.

The morphing demons and the oncoming train responded in much the same way when I was treated for seizures. Though I would not be able to continue on the medication very long, it did stop the night stuff. To me this is proof positive that all these things were manufactured by the TLE. They were not residue of childhood fear or emotional instability. They are somehow part of the epilepsy. They are never very far away, and the frequency of their visits depends on how well I am managing my seizures that particular day.I tried to explain to several of my neurologists how medication impacted my experiences and issues, such as hallucinations and perception changes, but I was immediately sorry. One doctor declared I must be schizophrenic (despite the fact that I was rational and far too old a person to be an undiagnosed schizophrenic). At the time, I was going to a good therapist who was helping me deal with the crisis that my TLE had caused. The fact that she knew it was the illness when a neurologist could not understand it just floored me.

The question becomes, as William F. Buckley Jr. used to say, how much you tell your doctor, at what point do you do it, and what should you expect?  I guess all of us needs to be thoughtful about symptoms, observant about what changes them, and aware of how strong or fragile we are feeling.

When my demon alphabet soup and runaway train show up at night, I am no longer frustrated and discouraged by their arrival. Now this event serves as a reminder of how far I have come with the TLE. I only wish the medical field had made as much progress in actually looking at the events in an individual’s life and understanding that not everything that is seemingly bizarre is a product of the mind—it might be a product of the brain.

It’s a Paradox

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anticonvulsants, antiepilepsy drugs, complex partial seizures, living with temporal lobe epilepsy, paradoxical response, prescription medication, prescription medicine, seizure triggers, seizures, temporal lobe, TLE

“That’s the reason they’re called lessons,” the Gryphon remarked: “because they lessen from day to day.”
― Lewis Carroll, Alice’s Adventures in Wonderland

Discovering I had Temporal Lobe Epilepsy was a huge event in my life. It was that watershed moment that changed everything from “before” the discovery to “after” it. I did not experience the next all-important discovery in a single event. It snuck up on me leaving me confused, angry, and eventually distrustful of my doctors. I suspected there was something, but I didn’t know how to frame it or describe it. It was my husband who was quantified the issue one day as he made up a chart.

“Look at this” he said as he showed me the very long spreadsheet he had been working on. We were getting all my information together for yet another visit to a new neurologist. One column contained all the drugs I had taken over the years. The second one listed my reaction to the drugs.

“You have the opposite reaction to every drug,” he said.

The data showed what I already suspected: Opiates caused severe pain, along with aspirin, Ibuprofen and many of the common migraine medications. Antibiotics had a similar result. Medications that were supposed to calm me actually over-excited me and caused increased heart rates. Sleeping pills kept me awake. And finally, anticonvulsants seemed to increase seizures.

The neurologist ignored the list when we showed it to her. My husband explained the problem, but she wasn’t interested. She ignored us and the data, and she refused to discuss it. She continued to prescribe anti-seizure drugs until a near-suicide scare jerked some sense into me and I left her.

None of the my doctors understood what I was telling them, not my regular internist, not the Urgent Care doctor, and not the cardiologist in the hospital where I ended up when I mistook a seizure for a heart attack. They all looked at me as if I was crazy. . . or making it up.

Then, as a result of this blog, I talked to a pharmacist who also had TLE. When I described the drug reactions, she told me it was called a Paradoxical Reaction. I couldn’t find very much information on it at the time. Today, a search will return more information, mostly dealing with antidepressants.

My pharmacist friend did a huge favor for me that day. She gave me back some confidence in my own observations. She made me feel “not crazy” as opposed to the way the doctors had been making me feel, which was definitely “crazy.”

Once I understood that I could count on this observation, I began to look at the seizures I was documenting each day, and the ones I had documented from the beginning. I was definitely seeing a change in the way I reacted, what I saw, how much pain I experienced, and so forth. I began to wonder how many of the seizures I experienced in the beginning were generated by the anticonvulsants. The number and severity of the complex seizures fell considerably once I got off all medications. While I continued to have seizures almost daily, I rarely lost consciousness.

During the last ten years since my diagnosis, I have stopped eating gluten and started living a rather secluded life. Some issues are worse and seem to be influenced by small things like light sensitivity. Others are definitely better with lifestyle changes. I cannot help but wonder, though, how many other people out there continue to have the Paradoxical Reaction because they’re not receiving informed care from their physician.

I can’t be the only one.

Hero of Your Own Story

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antiepilepsy drugs, epilepsy, odysseus, odyssey, prescription medicine, temporal lobe seizures, trojan war

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

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antiepilepsy drugs, deja vu, epilepsy symptoms, jamais vu, living with temporal lobe epilepsy, seizure disorder, seizures, temporal lobe epilepsy, TLE

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

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antiepilepsy drugs, buddhists, christianity, complex partial seizures, depression, jews, medical wilderness, moslems, native americans, spiritual wilderness, spirituality, temporal lobe epilepsy, TLE

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…

Social Stigma and the Shame We Inflict On Ourselves

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ALS, anticonvulsants, antiepilepsy drugs, complex partial seizures, drug resistant epilepsy, epilepsy symptoms, fluorescent lights, living with temporal lobe epilepsy, living with TLE, Lou Gehrig's Disease, prescription medication, prescription medicine, seizure triggers, seizures, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE, what is temporal lobe epilepsy, what is TLE, yoga

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.

What Just Happened?

Tags

anticonvulsants, antiepilepsy drugs, complex partial seizures, epilepsy symptoms, hallucinations, living with temporal lobe epilepsy, living with TLE, prescription medication, prescription medicine, seizure triggers, seizures, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE, topomax, what is temporal lobe epilepsy, what is TLE

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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anticonvulsants, antiepilepsy drugs, antipsychotic drugs, bipolar disorder, complex partial seizures, depression, drug resistant epilepsy, drug use, epilepsy symptoms, keppra, living with temporal lobe epilepsy, living with TLE, migraines, narcotics, nerve pain, pain killers, prescription medication, prescription medicine, seizures, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE, topomax, what is temporal lobe epilepsy, what is TLE

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.

The Museum

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antiepilepsy drugs, complex partial seizures, epilepsy symptoms, fluorescent lights, living with temporal lobe epilepsy, living with TLE, migraines, pain killers, prescription medication, prescription medicine, seizure triggers, seizures, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE, topamax, yoga

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.

Acceptance

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anticonvulsants, antiepilepsy drugs, antipsychotic drugs, bipolar disorder, complex partial seizures, drug resistant epilepsy, drug use, drugs, epilepsy symptoms, hallucinations, keppra, living with temporal lobe epilepsy, migraines, narcotics, nerve pain, pain killers, Parkinson's disease, prescription medication, seizure triggers, seizures, temporal lobe, temporal lobe epilepsy, TLE, topomax, what is temporal lobe epilepsy

Each of us has an intense longing for others to accept us for who we are, regardless of our health, appearance, talent, education, race, or religion.  That longing, or need, drives much of the daily lives of everyone we know.  The need for acceptance for those of us with temporal lobe epilepsy is a real and almost tangible goal, no less in authenticity or intensity than the goals of others.

And yet, it is not like theirs. Some people look at us and see only the face of the condition. It defines us, and our true identities fade behind that label. On the opposite end of these people are those who either openly doubt the existence of our TLE, or skillfully discount its effect on our daily lives, which requires us to take a defensive position on a regular basis.

The first group robs us of our individuality, while the second turns us into needy liars.

The worst thing about these people is that they move about within our personal boundaries. They are our friends and family, our co-workers, or fellow church attendees. They could be our parents, our children, our friends.

My TLE diagnosis came in 2005 when there was very little information about the condition on the Internet or in readily available medical books. My health information degree required extensive classes in all sorts of conditions, including neurological ones such as Parkinson’s disease, but I had never heard of temporal lobe epilepsy until the day of my diagnosis.

Several of my neurologists were not familiar with its symptoms and were not prepared for the way the condition presented. They tried to treat me as if I had Bipolar Disorder or Schizophrenia, despite the fact that the drugs used to treat those conditions just made my condition worse.

My co-workers did not know what to think.  My friends were just about as confused.

So, why should I complain of not being understood if the condition only recently has been brought into the spotlight and is still relatively unknown? Here’s why. This blog seems to be the only outlet I have, other than complaining to my husband, who, by the way, works hard to get TLE information into the public awareness.  In the past, I have tried to write something uplifting or informational on this site, but after months of being sick and seeing what comes from online sites that seem only to push drugs instead of awareness and information, I am now just pissed.

So, in exercising my freedom to express myself in my blog, I will say here and now that I struggle daily not to let the epilepsy rob me of my identity.  I manage my condition through my lifestyle and the avoidance of triggers, because I am unable to take the medication that is supposed to control seizures and reduce pain.

Oh, they work for a few days, maybe even a few months, then they go bad without warning, causing suicidal impulses or intense pain, advanced muscular weakness, or skin discoloration.  The horrible thing about being drug intolerant is that I have experienced relief from my seizures and my pain just before the drugs go bad, reminding me of what it’s like to be “normal.”

Each day, I management my condition by myself, which is something akin to walking a tightrope.  It seems hard not take the wrong step and fall off.  And it becomes so much a part of my life that it also is difficult to have to hide it from others as a price for social interaction.

Here is what I am hiding, and I am willing to bet there are many others out there hiding the same things.  I have Dante-like visions that give me horrible headaches and make me sick to my stomach. I have no doubt that these visions are related directly to TLE.  I say they are visions because I am awake when they come, and there is nothing “dream like” about them.  It is “the other”, whatever that is.  Many times they are frightening and leave me with a sense of foreboding or downright fear.

I have problems with electronics, all kinds of lights from natural sunlight to fluorescent, loud noises, and crowds of people.  I have frequent migraines, horrible stomach aches, confusion, depression, and irritation at others.  And, finally, I have unrelenting, daily nerve pain throughout my body, making activities often difficult.

Those of you who have pain or live with someone in constant pain, know that it can take over your life to the point that everything you do or even think about is centered on your level of pain at that moment.

With all of these issues, I may be unreasonable in my expectations that others accept me for who I am and not for my condition.  But, I still have hope that one day it will happen.  In my perfect world, I would like to deal openly with my condition and not hide its effects or let them consume me.  There is the thought that if I could simply be what I am to those I know, I could handle everything else better.  Perhaps this is a naïve belief or hope, but someday, whether it is through public awareness or personal triumph, I hope that level of openness and acceptance becomes available to me.

If you are reading this blog, you probably have TLE or are living with someone who has it.  I hope that you are able to gain acceptance in your life.