Wrong flight

Tags

airport, autoimmune diseases, epilepsy, southwest airlines, temporal lobe epilepsy, travel

I like receiving information best when in arrives in the form of a similar story. One in which you can clearly get the intended idea in an interesting way. That said, I am making my point by telling a story (so maybe it doesn’t sound like I am preaching, when in fact I am).

Before I my condition forced my retirement, I worked for the medical/health information section of a large software company. I traveled a lot, sometimes weekly, to work with customers on the best way to use the company’s product, or more importantly, how we could improve it. When you are in a major airport weekly, you see just about everything: people in pajamas, bomb threats, animals of all kinds, missionaries, sports teams, and family reunions. I was rarely bored.

After 9/11, airport security became very tight and added to the adventure. At first, it seemed like you had to show your ticket and license at every stop. This one time, though, security was looking the other way.

I was at my gate, in a business suit and probably sitting on my computer case near the boarding door. This was still during the days before you boarded Southwest planes by number. If you wanted a seat up front, which I did, you had to forget the chairs at the gate and line up along the wall, waiting for as long as an hour before boarding.

You had to make friends with the people around you, because if you needed to leave the line for water or a bathroom visit, they would save your place in line. And you had to have all your information in your hand to get aboard the plane.

So, here I am at the gate making friends with the people around me. This time it was mostly businessmen flying out to Salt Lake City, Utah, same as I was that day. The man next to me talked to me about his business. I don’t honestly remember what it was, but I have had a lot of these conversations, so I am reasonably sure he was in some sort of sales position. As the boarding process started, this guy continued to talk about his projects. We walked onto the plane together. I sat up front and so did he, still talking to me.

I am sure I asked questions, because I am usually curious about how others view their jobs. So, the conversation continued. It went on through the entire flight. Then as the plane started to descend, the flight attendant announced we were preparing to land in Salt Lake City. My talkative companion, who was finally not talking, turned pale. “I am going to Phoenix,” he said. Not on this plane, I told him.

Even though this man got through several layers of security and several announcements concerning Salt Lake City, he got on the wrong plane. And they let him do it! He wasn’t paying attention for whatever reason and they allowed him to get on the wrong plane, despite his documents clearly showing he was headed to Phoenix.

So, here is the deal with that story. When I thought of it the other day, in an airport actually, I saw how it describes us trying to deal with our TLE. You can be in the right place, sort of, but if you are not paying attention at all times to your condition, it can send you to the wrong destination. And like the businessman who slipped by airport security, you can’t count on doctors and other caregivers to pay attention for you, to stop you or redirect you.

I am not saying that all doctors don’t pay attention to the needs of their patients. I am saying that it is your health and you should manage it and take responsibility, as well. In the United States, TLE patients have few options outside medication and surgery. In addition, the doctors treating the TLE may not spot or take into consideration other issues, such as developing autoimmune diseases that ultimately impact the seizures and the individual’s treatment choices.

You have to show your information at every turn. Don’t let your frustrations or feelings of being overwhelmed interfere with your ability to keep an eye on what is happening. And more importantly, where you want to end up.

Make sure you are headed in the direction you want to go. Some of those detours can be costly.

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The Hidden Drug

Tags

adrenaline, epilepsy, epinephrine, hormone, johns hopkins, seizures, temporal lobe epilepsy

In the last several weeks I have been in and out of a frustrating cycle with my seizures. Just when it seemed that things had calmed down, and I was no longer struggling with my body, another cycle would start. Ever the detective when it comes to hunting down the causes of seizures, I looked hard at what was happening in my day-to-day life.

Issues have come up, as they do in every business and every family, issues that require attention, concentration and thought. While I believe my thought process is actually more refined than it was when I was working in the corporate world, I have noticed that often these periods of intense problem-solving result in seizure cycles that take time to break. As a result, I have to work at calming my body. Like the merry-go-round on a playground, the spinning has to wind down. It doesn’t just stop. I can’t jump off.

I always look for the source of the problem with the ever present hope that I can eliminate it from my life. And, in this situation, Adrenaline was the one issue that came up over and over.

Adrenaline is rarely listed as a seizure trigger. When looking at the usual lists, you are more likely to see “Mood” or “Stress” listed. But, is it really stress or is it Adrenaline brought on by a stressful situation? This distinction is never made on the lists and articles I see, and I believe this is a huge problem the medical community is overlooking.

When you start to read about Adrenaline, you will see why this may be a hidden issue. Meriam Webster defines Adrenaline as epinephrine.

Adrenaline is used in both technical and nontechnical contexts. It is commonly used to describe the physiological symptoms (such as increased heart rate and respiration) that occur not only as part of the body’s fight-or-flight response to stress—as when someone is in a dangerous, frightening, or highly competitive situation—but as also with feelings of heightened energy, excitement, strength, and alertness associated with those symptoms.

In figurative use, it suggests a drug that provides something with a jolt of useful energy and stimulation.

Below is a description from the hormone.org site of what Adrenaline/Epinephrine does to the body.

“Adrenaline is produced in the medulla in the adrenal glands as well as some of the central nervous system’s neurons. Within a couple of minutes during a stressful situation, adrenaline is quickly released into the blood, sending impulses to organs to create a specific response. Adrenaline triggers the body’s fight-or-flight response. This reaction causes air passages to dilate to provide the muscles with the oxygen they need to either fight danger or flee. Adrenaline also triggers the blood vessels to contract to re-direct blood toward major muscle groups, including the heart and lungs. The body’s ability to feel pain also decreases as a result of adrenaline, which is why you can continue running from or fighting danger even when injured. Adrenaline causes a noticeable increase in strength and performance, as well as heightened awareness, in stressful times. After the stress has subsided, adrenaline’s effect can last for up to an hour.”

OK, so stay with me here. Adrenaline is a hormone and a drug that is released in the body during stressful situations. It impacts the muscles, the heart and blood vessels, lungs and other major organs, and brain. Picture that and think if it would trigger a seizure.

Here’s another example from Epilepsy Talk:

“Adrenaline is released and the liver begins to emit stored blood sugar. Insulin is then released, and blood sugar drops below normal—a common seizure trigger.”

At this point in my reading, I am sure Adrenaline is a problem for me, but I can’t quite figure out why it’s not right up there on the list with sleep deprivation and illegal drug use. So I dig further and find that the last publication exploring Adrenaline and seizures was a paper by Jerome Fabricant in 1954. In “The Role of Adrenaline in Epilepsy“, Fabricant clearly believed Adrenaline played a major role in seizures. He was frustrated back then with the lack of work being done concerning this topic.

“This paper suggests that adrenaline may well have a central role in generating and determining the characteristics of epileptic seizures. Since little work, however, has been done with the view of establishing the precise role of adrenaline in epilepsy, the discussion to follow must necessarily and in large part be based upon adrenaline research outside the field of epilepsy.”

Recap time: Adrenaline is a drug as well as a hormone. It is strong enough to impact all the major organs of the body along with the circulatory system and the brain. It is released with an individual in a stressful situation. The person in question may not even be aware that it is flooding through his or her system. There is speculation that Adrenaline plays a “major role” in seizures, but with the exception of a study in Russian, all I came up with were questions on the Epilepsy Forum.

Then I ran across this April 10, 2012, gem from Johns Hopkins, picked up by multiple sources:

“Based on their clinical experience and observations, a team of Johns Hopkins physicians and psychologists say that more than one-third of the patients admitted to The Johns Hopkins Hospital’s inpatient epilepsy monitoring unit for treatment of intractable seizures have been discovered to have stress-triggered symptoms rather than a true seizure disorder. These patients — returning war veterans, mothers in child-custody battles and over-extended professionals alike — have what doctors are calling psychogenic non-epileptic seizures (PNES).”

I almost have no words to express the level of anger I felt at reading that article. There are so many problems with the definition of psychogenic non-epileptic seizures that it is too much to go into here, but I truly believe that one day the medical community will understand that if it walks like a duck and quacks like a duck it most certainly is a duck. And given that, the seizures these individuals were experiencing could be linked to an Adrenaline problem. But the doctors in question couldn’t get a recording on them, so they dismissed them as “poor coping skills”. And honestly, things like this—and I have been through similar ones myself—make many of us feel that the professionals who should be giving us the most help and hope are, in fact, causing the worse pain and difficulty in our lives

Since Adrenaline comes from within our bodies and is a hormone there is a reasonable assumption that it could malfunction, just like other hormones such as thyroid and estrogen. If you have ever had professional burnout, sleep problems, weight issues or premenopausal anger attacks, you may have experienced a hormone malfunction. So what about Adrenaline and how might it impact seizures?

(Disclaimer: Here is where I stress I am not a doctor and just relaying my own experience.) I think that for whatever reason, my issues with Adrenaline are more pronounced than they were before the seizures broke free. I can feel it flood my body. I can taste it in my mouth during situations where, mentally, I feel completely controllable. But once the Adrenaline hits my body, I feel pulled underwater, fighting to save myself from the effects that include frighteningly painful headaches, chest pain, muscle pain, and electrical-type seizures. None of the quiet hallucinations and altered perceptions, but BAM, pain and the feeling that I have been hit with a cattle prod.

In finally recognizing I am not “stressed” and practicing “poor coping skills”, but fighting an actual drug or drug overdose produced by my own body, helps me deal with the aftermath. Knowledge is everything to me and knowing the “what” is sometimes more useful than anything else I have available at the time. That said, I still have to let the merry-go-round wind down. But each piece of information I gather helps me take back my self-respect and my self-esteem that I felt the original diagnosis took from me—not because of the diagnosis, but because of the way the medical community and others reacted to the age old stigma.

Knowledge is everything my friend, start reading.

Writer’s Block

Tags

depression, seizure disorder, seizures, temporal lobe epilepsy, TLE

I occasionally arrive at a point where I reach for a concept and draw a blank instead. I have been feeling that way for a while. Perhaps I am tired or struggling with mild depression or simply feeling uncreative and unable to express myself.  Whatever the case, it includes my thoughts about TLE.

That said, I decided that someone else could express my feeling better today. Maybe not in the future but today, definitely.

Before I add the link to this truly great TED Talk, I want to explain something that I feel is fundamental: I don’t want to use the space I have to express extreme anger or disgust. We all have it and we all know the source of our own anger, whether it’s the relative who just doesn’t believe it or in believing doesn’t get it; the doctor that doesn’t listen or actively harms us; the strangers that in knowing, chip away at our dignity or self-esteem.

Like I said, we all have anger and we all know its source. Social media is full of this anger and the reasons for it. And while this is providing a service on some level, I chose to believe that what I have to say to the people that read this, and to whom I am grateful for giving me a voice, need to be somewhat positive. Without the will to find positive outlooks to my issues, I would not have made it to a healthier place. If I had believed all the negative things doctors or well-meaning laymen told me, I might not have had the courage to make my own decisions, I might not have survived.

Sitawa Wafula expresses some of these thoughts in an elegant and insightful way. So, for today she is my voice, my thoughts and some of my experiences. I hope you find a connection as well.

Safari

Tags

florescent lights, light sensativity, seizures, temporal lobe epilepsy, TLE

I have never been on safari. I have read a lot of books on what ‘going on safari’ is like. I have seen movies, too. I imagine that these are poor substitutes for the actual experience. Kind of like “reading” about the impact of TLE is not exactly like “living” through it. I still imagine sometimes what it would be like to actually go on a safari, riding in a Jeep or Scout and armed with the best cameras I  could afford. And when I think about the excitement and beauty of it I also laugh at myself for not really factoring in all the effort and discomfort.

The amazing painting below is by John and Suzy Seerey-Lester. It shows all too well some of the pitfalls of a trip like that. Danger hiding just outside the door. But we all know how that feels. That impending feeling that danger of some sort associated with TLE is right outside the door.

Last weekend I had a lot of time to think about that danger. I was flying from one part of the South to another, coming home from a trip to see family. The trip was expected to take most of the day with me changing planes in Dallas. I was confident that things would be OK even though I was flying alone, because I had added time into my schedule in case of weather delays. I was sure I would make it through the trip and not have any cause for panic.

Panic in an airport was an entirely new feeling for me when I first started dealing with TLE. As early as 6 years of age, I was flying alone between parents. When my sister, three years my junior, began to fly with me, it was no big deal. I simply took her by the hand and set off. If I got lost, I would look for someone in a uniform, such as a stewardess or priest. This was during the 60s. I was safe and had remarkable freedom and no trouble at all, even when required to change planes. And I so loved the beauty I saw out the window of the plane. It calmed and awed me.

In my last two jobs, I flew often and dealt with all kinds of problems and reversals associated with the frequent flyer. I always felt confident and calm, having no fear that things would be sorted out as quickly as possible.  I was on the last plane to land in Houston as Tropical Storm Allison hit the city hard. The plane tried the approach to the only runway open three times before the winds and rain allowed a moderately safe landing. Still no panic on my part.

After 9/11 (and I was scheduled to fly across country on that day) I got used to all the extra twists and turns with air travel. I calmly exited Las Vegas airport during a bomb threat and once entered a deserted Banger, Maine, terminal during sub-zero temperatures without a clue as to how I would get to a hotel. I flew without fear, and a problem solved during the journey was a gift. This ability evaporated with the onset of TLE and light sensitivity.

After I began to struggle with TLE, I became more and more light sensitive. No one really understands what or how this began, or even where in my brain the problem exists, only that it causes extreme nerve pain and seizures. The seizures from this are simple seizures. I am conscious during them, but they alter my thinking. Quite a bit. I start to feel threatened, paranoid, confused and panicky. I cross boundaries, too. When I am fine, I would never think of butting to the front of a line and grabbing the arm of an attendant, but I have actually done that after a few hours under the lights.

To be honest, I don’t trust myself after a prolonged exposure. But there is no safe place to go in an airport to avoid the lights. And there are so many people, so much noise. I imagine the danger, like the picture above, so close and so intense.

The last weekend when I was traveling, I ran into extreme delays due to weather. I sat in very crowded gates, feeling myself react under the glare of the fluorescent lights and the sound of all those people waiting for their delayed planes along with me. As I sat sandwiched between some very large travelers, I felt the nerve crawl up the right side of my face and the tingling all over signaling the beginning of a major problem. Sit still, I told myself, and you will live through this.

Travel for me must be a bit like I imagine a safari. You must carry your own food, deal with being desperately uncomfortable, learn to avoid stampeding mammals and crowded watering holes, and above all else be aware the threat of danger that is ever present. But like the safari in my mind, the run-of-the-mill air travel can display moments of breathtaking beauty and awe.

I doubt if things will ever be easy again when it comes to travel. The key for me is control and achieving a panic-free experience. The danger is always lurking, but if you are quiet and careful, it might not get you that day.

Pandora’s Box

Tags

complex partial seizures, depression, epilepsy, living with temporal lobe epilepsy, living with TLE, seizures, temporal lobe epilepsy, temporal lobe seizures, TLE, what is temporal lobe epilepsy, what is TLE

I love reading the Greeks myths and thinking about how they relate to things in the present day. One of my favorites is the story of Pandora and her Box, believed to have been written in the 7^th century BC. While rereading it the other day, I realized again the Greeks were on target with their explanations of life. The Pandora story has been analyzed and given many meanings, but I will add yet another for those of us with TLE.

Pandora, according to some of the oldest myths, was the first woman. She was made by Hephaestus at the request of his father Zeus, king of all the Gods. Hephaestus was the god of metal, fire, artisans, and craftsmen. He crafted all sorts of wonderful things for the gods—beautiful and powerful things—but Pandora was a different sort of creation. She was made to be a punishment to man for Prometheus’s gift of fire to mankind. Hephaestus endowed her with all sorts of talents, intellect, and beauty and when she was complete, Zeus gave her a box.

Actually it was a jar, and we can blame the box reference to a botched interpretation in the 16^th century, but for purposes of clarity we will call it a box. All sorts of the world’s evils were in that box: death, disease, famine, and so forth. It also contained Hope.

Up to that time, the newly made mankind had not experienced anything but paradise. Then Zeus put a ticking time bomb into the world, a woman who has been imbued with an intelligent curiosity and a closed box containing the seeds of all bad things. How long would it take for her to open it and change life?

At this point you probably have a good idea of what the ancient Greeks thought of Zeus. And frankly, there are some elements similar to the Christian and Jewish version of the Garden of Eden. But we will move on.

For me, the story is a little confusing as it appears that since she is the first woman, all these newly minted men had been running around enjoying life to the fullest. Here the story of How and Why is less important than What.

So here we are with Pandora and her box. As intended by Zeus, she finally succumbs to curiosity and opens the box, letting all the evils of the world fly out and take over. As these evils leave the box, she attempts to stop it and slams down the lid, trapping the only good thing that it contained: Hope.

It is this action that fascinates me and provides an interesting metaphor to living with TLE. As human beings, we are all created with gifts we can use either for good or evil. We all have curiosity and intelligence (OK, I know what you are thinking, but this is not a political blog, so stop it). And we all have our box, the issues that surround TLE.  We can’t really ignore the TLE issues as that would not be human. When we open our box, we run the risk of releasing only the very worst.

For me, opening the box looked like this: I decided to use my intelligence to understand my condition. In doing so, I learned how devastating this condition is to each individual who has it; I learned all the personal pain others have experienced; I learned of all the negative outcomes to treatment; I learned of all the stigma that surrounds it, not only in my life, but for all who deal with TLE; I learned of the lack of interest many neurologists have in dealing with its special issues; I learned of the lack of funding for research when compared to other diseases and conditions; I learned of the government’s criminal disregard of safe treatment, and on and on.

Stigma, Pain, Loss, and Shame to name a few evils flew out of my box, and in the beginning I, too, slammed down the lid on Hope. I see how wrong I was to lose hope under the burden of all that needs to be addressed.

But here is where I move from ancient Greece to 19^th century Russia. Tolstoy in observing the overwhelming evils of poverty in the world asked the question “What then must we do?”

“In examining the causes of poverty through the ages, Tolstoy developed a vision of a way of life that would deny the possibility of the exploitation of one person by another: a vision of self-discipline and responsibility, of joy, passion, and compassion, in which work for its own sake plays an essential part as a means to a healthy and kindly life.”

So where does that leave me, with the Eve of the Greeks, Tolstoy’s visions on the cure for poverty, and my sadness and frustration surrounding the issues with TLE? I believe that like Pandora, we will and should open the box. In doing so, however, we need to be very careful not to shut in Hope. And that like Tolstoy, we need to deal with the evils that have escaped our box through a vision of self-discipline, joy and compassion, understanding the whole, but dealing with what is actually in front of us at the moment.

I am never going to have the power to change a major issue with TLE. I worried that a blog entry about Hope would be meaningless to most in the face of all that needs to be said. But despite all of this, in the beginning of this new year, I would encourage a sense of Hope over all other issues. Hope opens our mind to the possibilities that have yet to be explored. Maybe someday that sense of Hope will power something so great for us that all our lives will be changed in the process.

Who knows what was intended, but maybe Zeus put the cure to the evils in the bottom of the box. Till then, don’t slam the lid on it.

Drink me

Tags

alternative healing, alternative medicine, drug resistant epilepsy, fluorescent lights, living with temporal lobe epilepsy, nerve pain, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE

“It was all very well to say `Drink me,’ but the wise little Alice was not going to do THAT in a hurry” Alice’s Adventures in Wonderland by Lewis Carroll

The most extraordinary event happened about three weeks ago. Our family was gearing up for the wedding of my younger daughter. The wedding was out of state, outside and, well, large. All three of these things scared the tar out of me. Of late, I had felt so fragile that the idea of a trip out of town, lots of people, noise, emotion, and food I could not eat left me more anxious than eager.

I could take all my own food and store it in the kitchen at the suite. That wasn’t a problem. But what to do about the back-to-back schedule and all the people? I did not even want to think about the reception with a loud, live band.

The week before the wedding, I attended a baby shower with about 30 other women in the home of the honored guest. Women sat around the living room on couches and chairs borrowed from other parts of the house, balancing small plates of chips and carrots on their laps, and quietly catching up on family news. I left the shower in tears. My head had begun to hurt and I could feel the seizure cycle begin as the sounds lost their natural layers  and began to press in on me at one level.

My skin began to crawl and I wanted to run. Run out, run away. Which was kind of funny because my gift was the children’s book The Runaway Bunny. I wanted to get out of there as quickly as possible and hide in shame. Why I felt shame is anyone’s guess since I did not display any of this to anyone inside the house. There is some kind of nasty, automatic response with respect to shame.

In the car on the way home, my older daughter looked at me and said something to the effect that she was worried: If I couldn’t handle the obviously tame environment of a baby shower, how was I going to make it through the wedding? I was worried, too. The memory of running out of my daughter’s graduation rather blindly into the rain because I was having a seizure and I HAD TO GET OUT OF THERE was still a fresh my mind.

On that occasion, my husband had seen me go by and chased me down, talked to me in the rain and led me back. He also did this a lot in Hobby Lobby until we figured out the fluorescent lights were causing seizures.

During the graduation I had seen the kids lined up in their robes turn into animals, as in giraffes and baboons and pigs. I hadn’t mentioned it to my husband. He seemed busy trying to keep the family group organized. Live and learn.

So on this particular day when the extraordinary thing happened, I had thoughts in the back of my mind about how I was going to deal with my body and how I was going to make it through what should be one of the happiest days of my life.

I was standing at the sink when a car pulled up and my older daughter rushed into the house holding a clear bag containing a plastic bottle of liquid. She handed it to me and said, “Drink it.” The liquid turned out to be a custom blend of oils belonging to a friend of hers who had Lyme disease. This liquid had brought her friend back from the depths of depression and pain. My daughter was sure it would do the same for me.

“Drink it.”

At this point, I would like to say the difficulties of the last eleven years and the love and gratitude to my family for never giving up went through my mind as I gradually poured a tiny amount into a spoon.

That is not exactly what happened.

I was scared of this stuff. After all, I had side effects from everything. This was not even blended with me in mind. What was I thinking? Well, I was thinking of the wedding for one thing. When you are backed up against a wall, you will make unexpected decisions. I looked at the bottle for a couple of days while I justified not taking it because of the ibuprofen I had taken for a sinus headache. Finally, two days after I got the bottle, I drank a tiny bit.

Nothing happened.

At first.

I kept mentally checking everything, worried I would break out in hives, go psychotic, or begin projectile vomiting (that was the clove oil experiment). But nothing happened for several hours. Then I noticed I felt no nerve pain. It was simply gone. OK, well, that was huge. I was excited. I could lie flat in bed and not sway back and forth to deal with the pain. There was no pain. And, I would find out later, there would be no seizures for a week. When I did have a seizure, the impact was reduced and the recovery time was much faster.

I took my tiny bit of oil and got better. When it came time for the wedding and the gauntlet of relatives and friends, of laughter and frustration, of nerves and sound and tears and joy, I made it through just fine. I saw everything, felt everything, and heard everything without losing control of my body or mind. I even made it through the reception with the live band. I danced with my husband. Something I thought I might never do again. I felt normal and whole and incredibly grateful.

The custom blend came from a chemist. I met with him over the course of an hour or two. During that time he was interrupted by other customers who had serious conditions, such as cancer.

He is an expert in plants and has degrees in chemistry and God only knows what else. He showed me the plants he was growing, such as sandalwood and lavender, and explained what he was going to harvest from them. I saw the green house he was building, went through his business and looked at all the oils and soaps. It all looked pretty normal, but it’s not because he knows how to really use these things.

He gave me a lecture about purity and the FDA failings. He held up a bottle of Argan oil bottled in France and explained that the brand I was using was probably tainted, and why.

So much information. But this man knew what to use to heal. Could it really be this simple? Apparently.

I have experienced a major change over the last three to four weeks. I never experience depression anymore, my seizures are manageable (when I have them), my body is strong and relatively free of the nerve pain. The best part is the hope and creativity I feel now, which I once thought were lost to me forever.

I have no idea if this will last, but this time I am not wasting a minute of it.

Armor and Observation

Tags

complex partial seizures, epilepsy, living with temporal lobe epilepsy, living with TLE, temporal lobe, temporal lobe epilepsy, TLE, what is temporal lobe epilepsy, what is TLE

One of my last jobs before the TLE took over was working in the Health Information department of a large, international company.  My section of the company designed software hospitals used to collect information about a patient’s condition and to facilitate billing.  I used my years of experience in the hospital to bridge the gap between the software designers and their targeted market, the hospital users. During this time, I learned two important lessons that have stuck with me ever since: the importance of observation and armor.

The observation I learned is called Contextual Design. The person practicing this concept learns to become hyper-observant in an effort to see where flaws exist and what changes could benefit the targeted user, in this case a hospital employee using the software.

I recorded and studied each key stroke, every movement, every mistake, every workaround, each  pause for reference to understand and actually see the software from the standpoint of the user.

There is something very Zen-like about this practice, because not only do you have to be calm and peaceful, but you also cannot have opinions or judgment. The observing person becomes yet another tool in the process to improve the user’s productivity.

Here is the part where I tell you why I think this is interesting to someone who has TLE. People with TLE are all different in many ways, alike in others, but ultimately complicated because of where the disease sits in our brains. I know this, and others know this, but the medical profession is still lagging way behind.

I believe neurology centers should hire people to read the angry rants on Facebook to understand what health care is not being providing us. Or maybe they could try their own form of Contextual Design, putting away judgement and opinion to observe minutely and record information about the individuals they are treating. Perhaps then neurologists would stop putting patients on the defensive and begin to truly understand the huge array of symptoms, the incredible variety of seizures, and the complicated emotional responses the accompany them.

Every day I open Facebook to read entries of fear, emotional pain and physical devastation that seem to me to be unnecessary and tragic. I truly believe the field on neurology would benefit from CD after ten years of daily studying and tracking my own disease, while at the same time suffering from fear, a lack of self-esteem and, at times, barely suppressed rage.

The concept of armor is the other issue of importance I took from my former job. When I worked in New Mexico hospitals, I wore whatever I wanted and as long as I had pantyhose on nobody said anything. When I went to work for the “company” I was told in no uncertain terms that I had to make some changes. No more purple zippered jackets, no more Navajo skirts or concho belts, no more Day of the Dead necklaces, and certainly no red go-go boots.

My “artistic” attempts at asserting my personality in the sterile hospital environment were viewed as just plain bad. I was told to wear nice black or navy suits and use silk scarves. My shoes, watch, and purse needed to be good, as in not cheap or trendy. I had 3 seconds I was told, to make an impression and bad clothes would prevent the clients from developing a respect and trust in my abilities.

I absolutely believed this when I listened to the harsh comments of these clients about other consultants or even individuals in another department. One of the smartest women I knew at the time was ridiculed after she left the room because her white shoes were scuffed and her lavender blouse needed pressing. She had just made an impressive presentation that required a lot of work and imaginative thought, but all they could talk about was her choice of outfit for the day.

So when it came to clothes I absolutely followed the rules. These clothes became my armor. They were supposed to save me from that horrible pack ridicule. They were supposed to present a persona of experience and intelligence, of competence. They were supposed to protect me.

When I was diagnosed with epilepsy, I found the armor I was using was worthless. Clothes had no power over epilepsy or its stigma. They could not deflect the problems I would encounter when others found out what I had or help me deal with an uncaring and uniformed physician. No Coach purse or Omega watch was going to change any of it. As a result, I was hit with two sudden revelations: I had epilepsy and I had nothing to protect me.

As I have mentioned before, I am nothing if not resourceful. So, I began to build another suit of armor. This time, though, I did not realize what I was doing. Ten years passed before I was confronted with the evidence of my daily work. I found I had compiled a dedicated computer library of studies, papers, books, and articles about TLE.

The other day I was sorting through my computer bookmarks because they had gotten overwhelming. I decided I would go through the articles to know what to save and what to delete. I wanted my reading time spent to be more organized. The first links were clearly years older and the information in them was well-known, but when I moved to delete I broke out in sweat and felt sick. I had to stop, leave the office, and think about it before continuing. It was then that I realized I had traded the armor of the clothes for the armor of the references. I must have felt that in addition to helping me understand my disease it would also protect me from those elements that are so hard to deal with – indifference, disgust and to a certain extent, ridicule.

Maybe. Maybe the armor did help if only to give me a sense of truth in a very uncertain and complicated situation. I know that observation helped and certainly does any time I need to use it. It gave me the tools to view my own circumstances. My husband always says that nothing is ever wasted, no information that we learn is ever useless. I am finding more and more that this is true, and I believe each of us has unique tools from our past to use to create a better situation for ourselves.

 

 

A News Year’s Resolution

Tags

living with temporal lobe epilepsy, prescription medication, seizure triggers, seizures, temporal lobe epilepsy, temporal lobe seizures, TLE

“When I used to read fairy-tales, I fancied that kind of thing never happened, and now here I am in the middle of one! There ought to be a book written about me, that there ought! And when I grow up, I’ll write one― Lewis Carroll, Alice’s Adventures in Wonderland

The holidays are always the best of times and the worst of times for me. I love nothing in the world better than being with family, a lot of family, and dogs and kids and cooking and confusion. But sometimes these are the very things that trigger seizures when my body begins to wind down. So today I want to focus on something that I believe is entirely good about this season: Resolutions for the New Year.

As I hear groans in my head probably coming from several countries, I want to point out that the very act of making a resolution is a positive, hopeful act that is supposed to make one’s life, or someone else’s life, better. What could possibly be dull or unexciting about that act of optimism?

That said I want to add a twist to it.

Recently, I read an article I really liked called “Nine Reasons Why Writing a Journal Should Be Your Only Resolution.” The article starts off with a study from the University of Texas that examines the effects of journal writing on fired computer engineers and their abilities to cope with their job losses and find new jobs. The article goes on to list nine interesting and vital ways writing in a journal can and will change your life.

I think this is a wonderful idea and I wholeheartedly support it. But I would also like to take it another step to illustrate how using a variety of writing approaches can change the life of someone with TLE.

A seizure diary is a good place to start. This is a daily record of your seizures. The obvious importance of a seizure diary or a journal cannot be underestimated.

If you don’t already have one, you could try My Epilepsy Diary from Epilepsy.com. It has convenient apps for smart phones, but as of this writing, they’re revising the diary and aren’t activating new accounts until early 2016. This program lets you determine what you want to track. You can list as many types of seizures as you want. That may sound funny, but it’s been very helpful to me.

For instance, I experience a particular type of Complex Partial Seizure when I’m exposed to gluten. The seizure is a lot like being trapped inside a lava lamp for a few minutes. I am aware, but not really able to respond as I see all the colors moving around.

I also have head pain and nausea associated with that particular seizure. I can describe that particular seizure and track it in My Epilepsy Diary. This type of seizure went away when I changed my diet. I didn’t have to guess about this, it was all recorded. When I saw the drop off, I realized the Celiac/gluten issue is, in my case, related to the TLE.

It’s not a hunch; its usable data. And, to follow that thought down the road a bit, the information collected is essential because you are not necessarily going to hear it from your physician. In terms of treating TLE, the approaches and understanding by the medical community is still relatively new. We need to observe closely what’s going on in our own lives to keep on top of our condition.

The second suggestion is related to the article I mentioned above. I advocate keeping a journal of the events you experience as you navigate your condition. How you feel, what you see, what you dream, what you experience are all essential parts of your ability to understand and to determine for yourself if this is a curse or a blessing.

These experiences can also lead to expanded knowledge and a sense of enlightenment as it relates to TLE. Here’s another one of my experiences to illustrate this point.

I sometimes see a corona surrounding objects. I kept track of these experiences so I could ask the neurologist about them, but all I got was a blank stare and a suggestion of hallucinations. When I asked my optometrist, (because I am nothing if not persistent), I was shocked to get an answer describing this experience, not as a hallucination, but as the optical nerve beginning to vibrate prior to a seizure event. It was a trigger event I didn’t know about and wasn’t giving any attention.

By dating and recording in both a journal and a seizure diary, you sometimes can connect events to drill down and figure out what the hell is happening.

And yes, I am aware I am an information junkie, but self-collected information has saved my life a couple of times. It has helped me get through periods of deep depression when the medical community didn’t seem to know, understand, or care what was happening to me. It has made me aware of how very amazing the human brain truly is.

It has helped me view my condition in a more detached way, allowing me to make changes in my behavior for the better. It has returned some much needed control to my life.

I agree with the writer of the article that recording your life can result in all the things you want and a few unexpected gifts that may improve your life.

Fear and Loathing in the Seizure Cycle

Tags

alternative medicine, anticonvulsants, depression, drug resistant epilepsy, living with temporal lobe epilepsy, living with TLE, prescription medication, seizure triggers, seizures, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE, yoga

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.”

Jamais Vu

Tags

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.