The Sucker Punch: Autoimmune Diseases accompanying Epilepsy

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autoimmune diseases, celiac disease, complex partial seizures, epilepsy, gluten, lyme disease, pseudoseizures, refractory epilepsy, sjogren's disease

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.

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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.

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.

 

 

It’s a Paradox

Tags

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

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

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

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

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

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

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

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

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

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

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

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

I can’t be the only one.

Medical Wilderness

Tags

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

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

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

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

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

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

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

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

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

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

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

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

Because it is in our brains…

Happiness and Cheer (or is that Fear?)

Tags

complex partial seizures, fluorescent lights, living with temporal lobe epilepsy, living with TLE, seizure triggers, temporal lobe, temporal lobe seizures, TLE

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

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

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

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

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

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

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

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

Shower of golden light

Tags

complex partial seizures, depression, drugs, epilepsy symptoms, living with temporal lobe epilepsy, living with TLE, prescription medication, prescription medicine, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE

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

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

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

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

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

My Song?

Tags

biofeedback, Comfortably Numb, complex partial seizures, drug resistant epilepsy, epilepsy symptoms, hallucinations, living with temporal lobe epilepsy, migraines, Pink Floyd, seizures, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE, what is temporal lobe epilepsy, what is TLE

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

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

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

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

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

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

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

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

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

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

Comfortably Numb
(Gilmour, Waters)

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

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

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

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

Social Stigma and the Shame We Inflict On Ourselves

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stuck in the mud

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complex partial seizures, depression, drug resistant epilepsy, epilepsy symptoms, living with temporal lobe epilepsy, living with TLE, nerve pain, seizure triggers, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE

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

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

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

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

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

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

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

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

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

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

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

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