The Sucker Punch: Autoimmune Diseases accompanying Epilepsy

Tags

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.

The Hidden Drug

Tags

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

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

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

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

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

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

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

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

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

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

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

Here’s another example from Epilepsy Talk:

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

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

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

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

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

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

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

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

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

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

Knowledge is everything my friend, start reading.

My Eyes, My Eyes!

Tags

autoimmune diseases, film production, Sjogren's, temporal lobe seizures, tv production

“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

Tags

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

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

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

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

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

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

Safari

Tags

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

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

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

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

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

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

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

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

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

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

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

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

Pandora’s Box

Tags

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To educate or not to educate

Tags

alternative healing, alternative medicine, drugs, epilepsy, massage, neurologists, seizures, TLE

I went to a massage therapist the other day to deal with a painful back. For me, it seems, when I have a seizure in my sleep, I freeze in painful positions and later have knots within my muscles that need to be worked out by more than yoga twists.

That said, it was a last minute decision and I had to find someone within my driving distance. The amazing therapist that I usually use, but who is often booked and well out of my driving range, requires a great deal of planning from both of us.

The therapist I was assigned to that day was a former nurse who chose to move into the alternative medicine arena.  I assumed she would be open and knowledgeable about alternative treatments. When we got started, I was disappointed in her point of view about the body in general and, in particular, her attitude about alternative treatments. But it was during the session that she said something that nearly had me get up from the table and walk out.

We were discussing the chemicals that caused muscles to knot. I said that with respect to my condition, I had done some research … and that was as far as I got.

She interrupted me to say I had no business doing research and that I did not know what I was doing. She continued by telling me people needed to stay off the Internet and listen only to their doctors because they could start imagining symptoms and cause everyone problems. They should only read “patient support” sites, she went on to say. The doctor knew everything, she said, adding that I didn’t know what I was doing.

“Well,” I said in a restrained manner, “I have a degree in health information, so I guess I have a degree in ‘I guess I know what I’m doing.’” At that point I was so angry I wasn’t going to discuss my condition or anyone else’s with her. Years of dealing with seizures, bad diagnoses, related autoimmune conditions, and other people’s ignorance have left me a bit touchy.

I left, throwing her card in the trash as I went out to the car. But the conversation started me thinking.

If you have read the About page on this blog, you know I have a degree in Health Information Administration, which requires understanding, researching and codifying health information, disease information and treatment information. Does this degree mean that only people in my previous profession have the right to read information, reports and studies on the Internet, but others don’t? Hell no.

I’m alive because of the degree, because I have experienced some pretty wrong, inappropriate, and dangerous diagnoses over the years and had to overcome them through my own research, which showed me that things have changed in the health care industry with respect to autoimmune diseases and especially with Temporal Lobe Epilepsy.

Anyone who has a condition, disease or concern for a family member should learn how to discover the available information about the actual disease process, treatment, and surrounding issues. The people who survive and can work with or overcome problems and setbacks are those who purposefully educate themselves. In other words, they give a shit about what is happening to them and they don’t hand the responsibility over to someone else, like a neurologist who doesn’t see them for more than a few minutes each six months or so—a neurologist who may not have been trained in epilepsy and doesn’t understand the patient’s particular brand of TLE (been there lots).  Or my personal favorite, a neurologist who is distracted about a failed real estate deal when your life just might be on the line. And yes, that last one happened to me when I went in for an emergency visit because of extreme rage and thoughts of suicide caused by the use of Keppra. That neurologist couldn’t seem to get the fact that if I was having a life-threatening reaction to a drug, I probably shouldn’t be using the drug. If you are in tears wondering if you will survive this next year of your life, you aren’t interested in their problems with their business partner.

So how do you handle stuff like this? You read all you can manage.

Understanding where you are, who you are, and what you are experiencing gives you a voice and a level of self-respect when it comes to the most important treatments in your life. Having a realistic expectation of your care-giver is important as well.  And, an interesting outcome to self-education is that these days the doctors that I go to are much better at helping me because I am choosing them using different criteria and trying to work with them by providing as much detailed information as possible.

When I think about what the nurse/massage therapist said, it still makes me angry, but I know the world is changing and we all have power. And that power starts with the written word. It’s all there for us to unravel, it just takes a little technology and some time.

In the night

Tags

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

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

 

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

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

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

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

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

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

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

The Cake marked Eat Me

“Soon her eye fell upon a little glass box lying underneath the table. She opened it and found in it a very small cake, on which the words ‘EAT ME’ were beautifully marked in currants.” -Alice’s Adventures in Wonderland

It has been awhile since I wrote about the GARD diet for Epilepsy. This is probably because it is so much a part of my daily life that I do not think about sharing it with others.  I have a secondary condition of Celiac disease, so when I think of food issues, I do not always think of seizures. But seizures are very much the reason I sought out this diet years ago.

The GARD diet was developed by a veterinarian named John B. Symes.  It stands for Glutamate Aspartate Restricted Diet. This is an elimination diet, requiring the individual to eliminate gluten (and grains) aspartate (found in the artificial sweeter Aspertame), diary, corn (including high fructose corn syrup) and soy from their diet permanently. He also suggests elimination of legumes and nuts. His reasoning behind this approach is very sound and much more informed about the anatomy of the human body than any physician I have talked with over the years.

On the Website, Doctor J, as he calls himself, gives the reader clear, detailed reasons for the elimination of these foods and offers insight into expected improvement. Because his Website is so complete, I see no reason to repeat it, only to offer up my own testimony as to the results of years of application.

When I began to search out information on a diet for epilepsy, I did not know I would be diagnosed with Celiac a short time later. Finding Doctor J’s site turned out to be a gold mine for me. It covered both conditions and it was easy to do, or so I thought. To eliminate gluten, soy, diary and corn completely from my diet turned out to be somewhat like falling down a rabbit hole. I had no idea that I would eventually give up processed food altogether.

Let me give you an example of why.

I want to eat tuna, but to do so I must get canned tuna from one local store because the vast majority of brands have gluten and/or soy added to the tuna, even when packaged in water.   Check your carton of orange juice. In the US, it often has soy added. The vegetable oil you cook with is actually soybean oil. The olive oil you just picked up at the grocery is adulterated with soybean oil unless you buy a brand that states it single sources the olives, which of course costs more.

To avoid the problem ingredients, I special order my chocolate bars, a huge treat. They are made in Peru of cocoa without added dairy and soy. They also are so potent that eating a whole bar is like taking speed.

Yes, the GARD diet can get rather wild, but the results are worth far more than the required effort.

Once I eliminated gluten from my diet, I noticed that the number of my daily seizures declined considerably, and that a particular type of seizure disappeared altogether. This seizure often occurred when I was trying to fall asleep. I would wake up, feel nausea and see a swirling of colors. The closest I can come to describing it is like being locked inside a lava lamp. In addition to the nausea, I would often have head pain and chest pain. I hated going to sleep. Seemingly overnight, these seizures were there one day and gone the next.

Being me, I wondered what it changed and began to pay close attention— looking at the type of yoga I was doing, the level of my isolation, the time of year and temperature, etc. I got my definitive answer one day when I accidently ate something I thought was gluten free and it wasn’t. The seizures came back full force making me very sick and very sure that the diet was working.

Perhaps not everyone is this sensitive or will be this successful with the diet, but research into the nature of gluten and soy lead me to believe that the elimination of them for those of us with seizures is as important as it is for those with gut conditions.

So how is life without ice cream, pizzas and pasta? It’s just fine. I am nearly 30 pounds lighter, I am stronger and healthier and, oh, yeah, having fewer seizures.

Drink me

Tags

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

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

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

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

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

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

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

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

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

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

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

“Drink it.”

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

That is not exactly what happened.

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

Nothing happened.

At first.

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

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

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

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

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

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

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

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