Wrong flight

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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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Weathering Changes

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“How puzzling all these changes are! I’m never sure what I’m going to be, from one minute to another.” – Alice in Wonderland

The list of things to avoid if you have a “sensitive brain” is long, and getting longer each day as technology keeps coming up with new and horrible ways to trigger seizures. There is, however, an old enemy that rarely shows up on the seizure trigger lists. It’s weather.

At this point, some of you are nodding your head. Weather has always been a huge issue with those suffering from migraines. As one of those individuals who has migraines and seizures, I noticed from an early age that weather often affects migraines. When I worked at the University of Texas Medical Branch at Galveston, I was surprised to find a rather large number of co-workers with migraine issues. I soon discovered that the fluctuating barometric pressure of the Gulf leads to hard days at work, stunned expressions on the faces of many of my co-workers, and the abundant use of Imitrex.

Studies conducted on weather fluctuations can measure the range of change that is responsible for triggering neurological problems, but that information is fairly useless in a practical sense. If changes in weather and barometric pressure affect you, you are going to feel it, regardless of what the studies say. And worst still, there is apparently nothing you can do to prevent the changes in either the weather or your brain.

My most recent experience with this issue included a tropical depression, bands of storms, and a nasty change in my personality that left me feeling like a misunderstood adolescent whenever I spoke to a family member. The lesson learned here is the same as what occurs when you have seizures all day, every day: be vigilant and aware of personality changes.

Many of us have poor seizure control for one reason or another. But that doesn’t stop the need to exercise some control over the emotional changes so characteristic of TLE, which are the result of seizure cycles, unrelenting pain, or simply the seizure being in that area of the brain.

Before I experienced my meltdown and all around bad behavior, I saw the warning signs and ignored them. CBD oil does a fairly good job controlling my seizures, so experiencing visual and audible hallucinations, false memories, and skin sensations were discounted. I chalk that up to the ever-present denial of the condition. Let things move to normal for a short time and I still try to convince myself that I was wrong, that it was all in my head. It is, yes, but not in the way I want to believe.

So the result of all of this was that I ignored the signs and experienced a whole round of seizures, had an emotional meltdown, and struggled, yet again, with the issue of whether this was really happening to me.  In retrospect, there are a few things I could have prevented.

When I saw my husband sitting on the couch looking at his computer and walking to the bedroom from the shower at the same time, I should have pulled back and eliminated any potential stress or exposure to other known triggers until things calmed down.

When I sat on the couch reading a book and realized I just had a false, but very detailed, memory, I should have stopped what I was doing and protected myself.

When feeling the electricity crawled up my skin like an army of ants, I should have taken it seriously.

I didn’t respond correctly to any of these signs and symptoms, and since I also could not control the weather and other parts of my environment, I had the mother of all meltdowns. I didn’t see it coming because I had thought I was beyond it. Next time will be better. I have to believe that and allow myself to make the mistakes and start again, because, yes, it is really happening to me . . . and the thing is, you can’t control the weather.

Talking Heads

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“You’re nothing but a pack of cards!” Alice in Wonderland

I have two thoughts I want to write about in this post. The first is a reminder that if you are similar to me in dealing with seizures triggered by technology, you may need to make sure the resolution on your computer and phone are turned down. While it makes the page harder to see, it may keep you from having a seizure.

Yesterday, I sat down in front of the computer to do some research after my computer updated. I wasn’t thinking about what happens in an update. As I began to work, I felt that internal “seizure” snake within my gut and chest begin to twist around my spine. Kind of like a Kundalini event gone very badly.

I left the computer when I figured out what was happening and ran to the bathroom where I looked in the mirror. I saw my seizure face: one eye huge, the other squinted, the right side of my face seemed to be melting. It’s not a good look for me.

I hurried into the living room and hit the control button on my television remote to turn on the yoga DVD. Please, please, please CALM DOWN is not really a good mantra, but it was what was happening anyway. I pushed myself through the yoga until I felt like I was slowly uncoiling that snake from within my chest. I can’t actually avert a seizure, but I can try to deal with my body when I’m having one.

And all of that was triggered by an update on the computer. The update returned the settings to the factory recommendations. You may need to monitored these settings if you think you might have any problem. Resolution and brightness should be as low as you can comfortably go. The blue light filter that is supposed to help with vision issues should be turned on. If you have Windows 10, you can find the blue light filter by running a search for “night light”.

The second incident was not triggered. It snuck up on me and became so braided into my thinking that I almost missed it. People without TLE will read this and think, “What the Hell!” but those of you with this particular expression of the disease will understand. I am sharing it because we need to share these things so they don’t become bigger than they actually are.

It started when I was listening to a phone conversation. It was early morning and I had my earpiece in, listening to a person on the other end of the line talk about a car repair. I was feeling some nerve pain that morning. Not a lot, but enough to put my teeth a bit on edge. I have nerve damage on the right side of my body. Whether the nerve damage is from seizures or from the drugs doctors prescribed to stop them is not clear. But I frequently have some level of pain, so I have learned how to distract my mind by doing two things at once. Most of the time it works.

This particular morning, I decided to look at silver US Peace dollars on Etsy while I was on the phone. Peace dollars were designed by Anthony de Francisci. They were minted between 1921 and 1928 and then again in 1934 and 1935. The face on a Peace dollar is that of the Goddess of Liberty (also depicted on the Statue of Liberty in New York harbor). She is the personification of the concept of liberty. She is beautiful, doubly so since I appreciate the beauty of the art and because I am a coin collector and often associate the mint dates with particular events in world history.

So here I was, on the phone listening through my earpiece to someone telling me about car repairs, I had some pain and I was looking at these Peace dollars on Etsy. As I listened and looked I began to feel something emotional going on within me. The coins–no correction, the women on the coins–were reaching out to me emotionally, telepathically, and visually, imploring me to buy them and, therefore, save them. Some looked sad, others looked undernourished, and still others looked trapped. The face of each dollar looked different at that point.

They each looked different, which is what you would expect from a coin, and they were talking to me while I was still on the phone in this conversation about fixing a car. At that point I realized what was happening, but the pull of the dollars was pretty strong. I knew they were just minted silver, but I didn’t FEEL that they were inanimate. They were communicating with me, I argued. My clearer self said, No, you are going to have a seizure. Too bad, I rather liked the thought of helping them. Although I doubt I would have been so happy when the bill came for “saving” all these graded coins.

Still there it is. It did indeed sneak up on me. I could carry on a moderately normal conversation while having delusions that the coins were in some kind of coin slavery situation.

You have to be alert. No matter how long you’ve felt great, no matter what you are using to control your seizures, no matter how confident you are that it is all behind you. Your internal watchdog should always be on alert, but at the same time it shouldn’t bite.

Awareness and kindness. A better mantra, don’t you think?

 

Thin Ice

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Inspirational messages often depict life as a series of valleys and mountaintops. The struggles that come in each life are somewhere in the middle of those green valleys and rocky slopes. We describe individuals as reaching grassy plateaus or climbing dangerous paths because of their life experiences. A wonderful example of this imagery is Psalm 23 in which the Psalmist (presumably King David) talks about these mountain paths and beautiful areas as they relate to his daily experience with God.

I love the 23rd Psalm. I think of it each day and I understand the value of the images. Images carry power in a sense. They are a little like math in that you convert your experiences into images to understand them and perhaps improve your outcomes. Creative common denominators. The images I carry in my life, while different, are nonetheless powerful and act as tools for me to understand my circumstances, particularly TLE.

I have never been able to relate to the mountaineer view of living.  For me, life is like, has always been like, walking on the surface of a frozen lake. Some places are easy to move over. Maybe it snowed a bit, and while that is cold and uncomfortable, it also helps to ease the difficulty of the journey, both physically and mentally. After all, snow is beautiful, you can walk on it and, as someone else observed, it works. Other paths are slick and the ice is thick and clear, making me slip, slide, and struggle to keep my balance. I am often on my ass during these periods. This time represents the frustrations and struggles with practical issues, the “one step forward, three steps back” periods of life.  Everyone has them and yet they still deserve some thought, if not work, in overcoming the falls.

And then there are those dark times when, as I move forward with eyes on the goal of the horizon, I suddenly plunge into a nightmare of cold dark water, after falling through the thin ice above. It is precisely when I am concentrating on the horizon, the goal, the useless dream, the outrageous hope, or the ridiculous wish, that this happens.

Struggling beneath the water, I can’t think, reason, or plan. I am angry, confused, and good to no one, particularly myself. I must let go of the struggle and the fear if I am to rise through the water to the surface. To save myself, I must let go of the need to control. The same is true about all aspects of the seizure cycle. For me, struggling, fighting, giving into anger, guilt, and the whole host of emotions that surround a TLE seizure only serve to keep me underwater.

The creative use of imagery has helped me to deal with the unexpected and always-feared seizure cycles by converting the emotions and the physical challenges into an understandable picture. I began to use imagery early with the use of bio-feedback for untreatable migraines. Combined with the music of Pink Floyd, I worked out a process that was pretty usable for years. It worked so well in fact that just hearing the opening guitar on Shine On You Crazy Diamond opens up images and soothes my head, even if I don’t have a migraine. Working with images that have meaning and power is common is sports, business, therapy, education, and religion. All these areas and many more that I have not named have reaped amazing benefits from creative work with images.

In the CIO article “Creative Visualization: A Tool for Business Success”, the author tells us:

Visualization helps people get clearer about aims and objectives,” says social psychologist and author Stephen Kraus, president of Next Level Sciences, a success consultancy. In other words, visualization quite literally fosters people’s ability to develop a clear vision, both in terms of end states and products. “People with clear nonconflicting goals accomplish more and are healthier,” he says. In his book Psychological Foundations of Success, he says vision is a cornerstone of success and points to the words of Harvard marketing guru Ted Levitt, who says, “The future belongs to people who see possibilities before they become obvious.

So, the purpose of writing all of this is to encourage those of us with TLE to add this tool to the box of treatments, behaviors, and research associated to our condition. Why shouldn’t we use a successful and often cathartic device to help us manage our seizure cycle? Why shouldn’t we harness our own creativity to make living with TLE a bit easier?

There are so many other tools that provide improvement but we may not use them because we, and others, may have perceived them as ridiculous, ineffective, or woo-woo. Tools such as yoga, which can yield a higher control rate than some drugs.

In one study detailed in Complementary and Alternative Therapies for Epilepsy, Orrin Devinsky, MD, Steven V. Pacia, MD, Steven C. Shachter, MD, describe the 86-percent improvement in seizure frequency in a yoga control group vs a non-yoga group. That improvement is far better than a lot of drugs on the market for seizures, but I have yet to have a healthcare professional suggest yoga as a control measure in addition to other treatments. Same goes for the creative use of imagery. I am not saying mainstream healthcare providers are against it, just that they are completely uninformed.

Take a clear, slow look at your life. Find those tools that helped you once, whether it was a successful soccer game or a good business proposal and see how you can repurpose them to your best advantage. It’s all our stuff anyway. No one should discourage us from thinking or trying additional things to improve our life. Start with David’s mountain and at some point you will find your own internal landscape. It doesn’t have to be beautiful or safe, it has to be authentic to you. My ice lake is not a happy image to someone else but it is real and true to me. And most important, it is useful.

The Sucker Punch: Autoimmune Diseases accompanying Epilepsy

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It wasn’t long after my initial epilepsy diagnosis that I began showing signs of an autoimmune disease. Actually, I had probably been experiencing the symptoms for a few years, but they were always ignored by whatever doctor I was going to at the time. The symptoms were often assumed to be psychosomatic. Sounds terrible I know but it is the truth. The first autoimmune disease to blossom, shall we say, after the seizures started in earnest was Celiac disease.

My experience with physicians and the Celiac diagnosis went something like this: “I feel like I have knives in my gut whenever I eat. Them: “Oh we can give you Darvocet for that. You just need to calm down and stop babying your system.”  I was actually told to take a narcotic with my meal because my gut hurt. I was not tested for Celiac, I was not questioned as to what exactly might be triggering this. I was not told to modify my diet. Just the opposite.

My breakthrough with this issue came when I had a suicidal response to one of my anticonvulsants. It was at that time that I realized the drugs were a seizure trigger and I needed to get off of them or die. I went to a well-respected general practitioner to slowly and safely withdraw from all my medication (I think there were around 12 at that time). In the course of the examinations and planning, he realized I had Celiac. “It’s a food thing. You can research it and treat yourself. I am focused on the withdrawals.”

That was my first glimmer of hope when it came to working with my body.

Once I knew what I had to do in response to that diagnosis, I could start the long road to healing. Consequently, interesting issues came up. If you aren’t aware of a particular thing, you might not see its connections and its impact on you. In this case, I found that gluten, the thing most harmful to Celiacs, also caused some of my seizures.

I used to have these awful night seizures, fueled by gluten apparently, that had me awake and trapped inside a mental lava lamp. These seizures made me nauseous, gave me terrible headaches, frightened the life out of me, and made me more susceptible to Complex Partial Seizures during the day. Eliminating gluten, or all grain in my case, made a huge difference and stopped a large number of my seizures, making me stronger physically.

I began to see other symptoms emerge as I withdrew from the anticonvulsants and other supporting drugs, and eliminating things in my diet proven to cause seizures. This was a very frustrating time for me, trying to manage my TLE through avoiding triggers and limiting my diet to heal my gut and stop the gluten-driven responses.

I have to clearly state here that I was doing a lot of this without support of a neurologist or a gastroenterologist. The neurologists I had seen would not take into consideration that I could not tolerate the meds, despite the fact that 30 percent of those with epilepsy can’t get help from medication, and in some cases, these meds are dangerous for them. This number has held fast since it was measured in the 1950s. I have documented it in other blog posts, so I won’t spend a lot of time on the 30 percent except to say that it exists.

Pain began to play a much bigger role in my life.  Pain in my nerves, joints, eyes, and muscles. It would strike after a seizure, or sometimes before, pushing the seizure the way a migraine can trigger a complex partial seizure. At first I had a hard time understanding what was going on with all this pain. It seemed to be getting worse despite all the precautions I took, all the yoga I did, all the chemicals I avoided. There were nights that I would twist back and forth in bed, trying to rock myself to sleep in the presence of all that pain. I had myself tested for Lyme disease . . . yet again.

Nothing made sense until I read an article that linked another autoimmune, Sjogren’s syndrome, with Celiac. This time I wasn’t wasting any time with explanations of symptoms. I simply went to the type of doctor most able to diagnose Sjogren’s effectively and asked for the test. Funny as it may sound, when this doctor confirmed the presence of this disease, I felt hope. Now I knew what I was working with, and like Celiac and TLE, knowledge is everything. Armed with an understanding of what triggers these responses, you have an opportunity to take control.

One of the things I did was to dive into the research again. This concept of autoimmune disease being woven into the epilepsy mix is not a new concept and there is more information out there as more articles and studies come out. If you have TLE and don’t display symptoms of autoimmune diseases, you are blessed, but there is one chance in three you will have one or more before it’s all over.

Here are some of the articles, and quotes that I found most helpful:

Seizures often complicate systemic autoimmune disorders through a variety of mechanisms. These include primary immunological effects on brain tissue (e.g., antineuronal antibodies, immune complexes, cytokines), effects of vascular disease (e.g., prothrombotic state, anticardiolipin antibody, emboli, vasculitis), metabolic disorders, infection, and complications of therapy. Understanding the pathophysiology of epileptogenesis in these patients may help provide therapeutic targets for specific patients and more broadly, for epilepsy patients without systemic autoimmune disorders. American Epilepsy Society 

What I gathered from this article was simply that seizures mess up the autoimmune system in some individuals, causing the failure and path to disease. That is a pretty simple, yet scary implication. In other words, seizures impact the entire body.

Recent research has suggested increased risk for epilepsy with systemic autoimmune disease, and indicated a two-way street in which systemic autoimmune disease may also increase the risk for epilepsy. An underlying proinflammatory milieu and autoantibodies may be involved in increased risk for epilepsy. Conversely, seizures may result in the release of pro-inflammatory cytokines, which may aggravate systemic immune disease, according to background information in the article. 

A meta-analysis suggests that epilepsy and autoimmune disease are linked: epilepsy was linked to 2.5 times increased risk of systemic autoimmune disease, and systemic autoimmune disease was linked to 2.7 times increased risk of epilepsy. Neurology Times

In other words, there is a complicated relationship between epilepsy and autoimmunity. While epilepsy may cause autoimmunity issues, it is also thought to act in reverse with autoimmune disease causing epilepsy. 

Autoimmunity is strongly linked to seizures. We may be overlooking a treatable mechanism in epilepsy patients,” said the study’s lead author Kenneth Mandl, MD, MPH, runs Boston Children’s Informatics Program (CHIP)’s Intelligent Health Laboratory. “We need to change how we think about clinical management of these conditions.” 

According to Mandl and Mark Gorman, MD, a Boston Children’s neurologist involved with the study, the risk association between epilepsy and autoimmunity suggests that both rheumatologists and neurologists should consider screening their patients for signs of the associated condition. Boston Children’s Hospital

And finally we get down to the heart of the issue, which I see as this: if you are diagnosed with epilepsy you should be immediately checked for autoimmunity. Your health should be monitored closely with this as a risk and any and all applicable symptoms should be taken seriously and checked out. If you can’t find a healthcare team that looks out for you on these issues, you will have to take care yourself by yourself.

I find it incredibly sad that individuals who have both TLE and autoimmune diseases are burdened with conditions that are often discounted by healthcare providers and required to “prove” their illnesses are real and not imagined. I won’t launch into the validity of pseudoseizures and how I think that the industry is ignoring what is really going on there, but that much negativity is more than I can handle today.

A sucker punch is a blow without warning. Autoimmune disease with epilepsy feels like a sucker punch. Don’t let it catch you off guard. Equipped with knowledge, you can avoid the pain and disorientation of that unexpected blow by watching out for it.

The Hidden Drug

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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.

My Eyes, My Eyes!

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“It would be so nice if something made sense for a change.”
Lewis Carroll, Alice in Wonderland

I am setting out today to write about something that is utterly confusing to me, despite the fact that I have been dealing with it for more than ten years. That subject is seizures caused by what I see on television.

Let me start at the beginning and mention that the doctor who diagnosed me years ago told me to stop going to movie theaters and to avoid black and white movies on television. The movie theaters were a common-sense decision. I stopped going not so much because I was told that it was harmful but because it did throw me into a seizure or trigger enough of a problem that I was sure to have one later. Being in a huge room packed with people, sound, and visual movement became so unnerving that I had no trouble giving movies up for good. The last movie I experienced this in was a Pirates of the Caribbean sequel. The nausea, electrical tingling, and feeling of weakness were horrible enough that I still remember it. Holding on to the sides of the seat, I felt as if my body were spinning in space. No, walking away from that was not a problem.

Television, though, turned out to be a different story altogether. In the beginning, I did stay away from black and white movies or movies that had a lot of light and dark contrast. It was this contrast that the doctor warned me against. I was warned about the contrast so early in the diagnosis that I did not think to ask for more information on why this is the case. As it turns out, there is a lot more to go along with it.

So again, let me go back to the beginning when I was just avoiding old black and white movies. The next problem was with seizures triggered from shows originating in the 70s, 80s and 90s. Shows like “Miami Vice”, MTV music videos from that time period and “Masterpiece Theater”, to name a few. Not all the shows from that time period triggered seizures. Some of the slower-moving mysteries such as “Matlock” and “Murder She Wrote” were just fine. But turn on “Upstairs, Downstairs” or the original “Poldark” and I was in trouble quickly.

Gradually I began to test out shows based on our expanded cable services. With the inability to go to a movie theater or live performances (that is another story) of plays or music, my husband decided we needed a more robust package for weekend entertainment. I tried different channels constantly. The confusion grew. There were shows that appeared on the current network lineup that were just not a viable option, too much movement or flashing in the shows to safely view them. For instance “Dancing with the Stars”—uh no. Lights are constantly flashing. “American Music Awards”, hell no with all the explosions on stage and the multiple screens.

At one point, I thought I had it figured out. If the production used a stationary camera and didn’t have a lot of flashing or explosions, I should be fine. And I was until I wasn’t. I began experiencing problems with normal shows that had stationary camera work. Sometimes the problem would come at the beginning of a new season. Sometimes it would occur from one episode to the next. Contemporary shows that became problematic in the middle of a season were especially puzzling.

I finally asked my son-in-law who works for NASA and has a degree in film. What he explained to me about pixels and films, video and timing was beyond my understanding. I simply had no “like” information to tie it to, so it didn’t stick. But it made sense. And it was important in two ways. First, I began to understand that the way the show is made may impact me. I can’t necessarily see it, but my eyes pick up the problem. If I start to tingle, I know I need to get out of it. It’s not a question of my imagination. Second, and perhaps more important, is that I am not crazy in my identification of these problems. There really are differences. For instance, I actually found one on “Masterpiece Theater” with the beginning of “Upstairs, Downstairs”. The producers started out with one type of filming and within a couple of episodes, moved to another. Not only can you see it, or in my case feel it, but if you know what to ask, you can find the change documented.

When I brought these problems to the neurologist I was seeing at the time, I did not get a good response. It was more of a verbal shrug. I don’t fit the profile for photosensitive epilepsy. This experience with the doctor left me feeling extremely insecure. It was as if I have to defend and convince them that I was not lying or simply crazy and imagining all kinds of things associated with my condition. I am no longer seeing this doctor and I do take it seriously. I worry less these days about how someone else will view my triggers and condition and more about taking care of myself. Somehow, I do not believe that what we see rarely triggers us. I think we are all more individual than that. Each of us has a weakness, or maybe several, through which the seizures travel. My weakness could very well be my eyes. Eyes that are affected by the autoimmune Sjogren’s. Where does the epilepsy stop and another condition begin? Or is it all braided together?

While that question won’t be answered anytime soon, the one about what triggers each of us should be. Triggers are everywhere guys, and we have to hunt them down and understand them to gain control.

Writer’s Block

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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

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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.

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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

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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 7th 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 16th 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 19th 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.