3 keys to taking ownership of your condition


, , , , , , , , ,

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

Several weeks ago, I started doing research for a blog entry on bell curves in health care and how these bell curves impact those of us with TLE and autoimmune diseases. I continue to try to share information this information because we are more at risk than the non-epilepsy population for developing one or more autoimmune diseases.

Doctors often overlook them in epilepsy because health care, in general, tends to be siloed. Many doctors concentrate on their specialty and do not consider complementary and alternative medicine.

I had this great idea that I would explain the statistical foundation for a lot of medical treatment and decision making, and include all these cool graphs and numbers. However, I fell down a rabbit hole during my information foraging. Information is my “jam” as the younger members of the family refer to it. There is always an attempt to connect dots, to explain everything in the simplest, clearest way. A little is never enough.

I wanted to talk about the bell curve of patient symptoms and corresponding care, and why those with autoimmune and epilepsy are on the tails of the curve. I wanted talk about my experience collecting and using data for hospital systems, not realizing the potential harm in the calculation and interpretation of the mathematical information. And finally, I wanted to summarize some of the issues resulting from being on the outside curve of that bell graph and what it means to many of us attempting to get treatment.

I wanted to do all of the above, but several things kept getting in the way, not the least of which was keeping my exposure to the computer to under five minutes to avoid triggering a seizure. I could feel myself start to spiral as I tried to piece together information to justify my thoughts.

That was my problem right there. Coming up with an idea and then trying to support that idea with facts. Sometimes there is a connection, but it is often a bit messy.

My solution is to ignore the various links and simply talk about what I think. Here is where I say I am not a doctor and this is my opinion, what I have observed.

I studied healthcare statistics in college and then used them every day in hospitals to create statistical “pictures” for the physicians. You use this “picture” for a comprehensive comparison of industry standards with a physician’s best practices or the hospital’s protocols.

The accompanying graph is a bell curve with the highest point at the center. When a bell curve represents a patient population, the majority of the patients fall under the middle of the bell curve, with a few patients on either end.

So, stick with me here. If you look at a bell curve of epilepsy patients, the ones in the center represent those whose condition is identifiable, possibly easier for the neurologist to treat, and certainly more responsive to treatment. That’s where the most effort goes. The ones on the ends could represent patients with conditions that do not respond to treatment, or who have complicating conditions such as autoimmune diseases, or who have symptoms such as migraines and nerve pain that make treatment options more difficult.

Some doctors even think these patients are crazy or, as in my case, hysterical. Difficult patients. Patients who challenge the physician. Patients who need longer time in the exam. I could go on and on.

Those of us who fall in this category believe, rightly so in many cases, that our doctors are not giving us their full consideration.

Here is where my preaching starts and it’s an old sermon.

#1. Respect yourself and do not let anyone make you feel ashamed, worthless, stupid, or somehow guilty because you have this disease.

#2. Know what you want from your doctor visit before you go into the exam room. Practice your questions in your head or, better yet, write them down.

#3. Be ready to walk away and find someone else when you feel like your doctor does not respect you or does not provide the best care.

I know that some of us do not have choices, but you can still request referrals to other physicians who may provide positive results for your condition. If you are on the outside of that bell curve, own your condition and use your knowledge to get what you need.

Do I always get what I want? No. But if I try, I sometimes find I get what I need.



, , , , , , ,

Look after the senses and the sounds will look after themselves. ― Alice in Wonderland by Lewis Carroll

I have been thinking of writing this post for a while, but each time I end up frustrated when I try to find the science to match my experience. Apparently, the effect I am reaching for is not well documented. It has to do with noise, sound, seizures, and pain. It wasn’t until I read a rather good article from the American Kennel Club on undiagnosed pain in dogs that I decided to just throw my experience out there.

The study looks at how dogs with musculoskeletal pain are more broadly sensitive to noise than those in the control group without pain.

The paragraph that got my attention was this:

“The researchers hypothesize that when a dog suffering from pain gets startled or tenses up from a loud or sudden noise, it aggravates their pain. This causes a learned association between loud sounds and pain to develop, which can easily generalize to all kinds of situations where the dog has experienced noise.”

I started thinking about the problems that I encounter with sound. I truly believe TLE often affects all senses. Some of my triggers include light issues involving strobing, computer generated effects on television and movies, strong light and dark contrasts, you name it. The exposure to strong sensory experiences almost always causes a seizure or trigger a cycle in me that requires rest and separation.

Sound is particularly troublesome. My sensitivity has taken away my ability to hear live music in a crowd, attend a high school musical, or enjoy a large family gathering without risk. This sound problem is constant and it is painful. It is not dependent on my mood or any other surrounding factors.

At this point, I suggest you stop all conversation with neurologists when they dismiss your reactions as being “in your head”. Actually, it is in your head, but not in the way they mean. It does not have to result from emotional illness, hysteria, or weakness. It’s part of the neurological picture of some individuals. And somehow for me, pain, sensory overload, and seizures are braided together so that when I experience one, I experience the others.

I recently turned up a federally funded study on autosomal dominant partial epilepsy with auditory features, or ADPEAF. It is an uncontrollable epilepsy that runs in families, set off by specific voices, music, and other sounds of various volume. It can cause loss of consciousness, stiffening, rhythmic jerking, or, as in my case, pain. I believe my late father had the same condition, which resulted in his desire for social separation, or, as some people would say, being a recluse.

I was told by a neurologist some time ago that there is no pain with seizures. Needless to say, I did not stay with him long. If I experience pain, then that is my experience. It’s in my brain and possibly linked to the migraine response. And sadly, it often comes at a time when I am happy and enjoying what is going on around me.

As I mentioned before, it is hard to find information on the things I experience with sound, pain, and seizures, but I did run across another interesting article, this one by Sara Adaes, PhD, on music and its ability to trigger seizures in those who are resistant to anticonvulsants.

Adaes mentions the focal seizures of TLE and music can be a trigger. She mentions that there is a complex relationship between epilepsy and music. These seizures are called musicogenic and are considered weird by the experts, according to Adaes. Again, for the maybe five thousandth time, I am not a neurologist, but there are a few logical things here that jump out at me.

Just for the sake of argument, if focal seizures occur in the temporal lobe that houses your memory, auditory, sensory processing, why wouldn’t a particular sound or piece of music or style of music cause a seizure every time. Maybe that is where the damage exists. Who know? It’s the brain and trust me, they don’t know everything about it. They are not really even close.

So, OK, we have researchers admitting that sound can cause seizures, that music can cause seizures, even though they find it weird. What about the pain? I believe pain accompanies seizures for more of us that doctors know or will admit. It is a hard thing to measure, this pain. And if you tell a doctor that music causes pain as well as seizures, that a door slamming can be a painful trigger, that the electricity in your body turns into a Taser during a television laugh track, you might be disappointed with the response. But don’t give up, each day more and more information is coming to the surface and at some point, all this won’t be weird, it will be an accepted symptom.

Finally, in the article about the dogs, I thought this sentence was interesting, “It should be noted that dogs don’t understand pain. They do not comprehend why their life is different than it was before, hence the anxiety and shivering associated with pain.” Well . . .dogs are not the only ones.


Two people


, , , ,

“But it’s no use now,” thought poor Alice, “to pretend to be two people! Why, there’s hardly enough of me left to make one respectable person!” —Chapter 1, Down the Rabbit-Hole, Alice in Wonderland by Lewis Carroll

The whole purpose, I once thought, in writing these blog entries was to provide a small amount of direction toward “surviving” this condition we all live with in one way or another. We are either individuals with Temporal Lobe Epilepsy or caretakers, family members, or friends of those with the condition. I can’t imagine anyone else reading, much less caring about, what is written here otherwise. Sometimes I get messages with questions or directions–I had an experience and someone else wants to know how it was handled.

Lately though, it’s not so much the help as it is identification of an issue. I see this theme run through other blogs and social media posts. A person is not so much telling you what could be done about an issue as simply identifying it. And there is a comfort in that. We are all reaching for information and a measure of understanding.

Here I would like to point out that to be honest in this space, sometimes you move into uncomfortable territory. That applies to the subject today. Uncomfortable all the way to potentially heartbreaking.

Social media seem full of this issue and those surrounding it, issues of being who you are regardless of the illness. At least that is what it boils down to for me. And here is where I explain my experience, with the understanding that I cannot speak for others.

I believe I slowly became two people with the onset of the illness. There is the person that I allow others to see and the one I live with inside myself. People without TLE may get away with this, but it can get very unhealthy for those of us with it.

My outside person lies about her condition when asked, frequently accepting situations where she is expected to be quiet about her condition so she doesn’t embarrass others with the word epilepsy, so that she doesn’t make a big issue about an issue that is a big deal to her. In other words, my outside person feels pressured, rightly or wrongly, by family members and friends to act as if she is completely healthy.

In my mind, they seem to think that just the knowledge that I have this condition is enough and should end all communication about the issue. Talking about it, referring to it, even cautioning about it seems to make some people uncomfortable and, in my opinion, puts me in a bad light with others. So I don’t talk about it around others. I am not proud of that. And that silence also is a trigger.

My inner person is frequently angry, hurt, and distrustful. She experiences a lot of physical pain on a daily basis, but she is afraid to “burden” others with this fact. She cannot express her concern over potential triggers without feeling shame. She cannot let go of the idea that if she keeps it in, it will go away, maybe. Everything is a balancing act. Everything is a tradeoff. When that information, or let’s put it another way, her truth, escapes, crushing guilt and fear follow. And frequently accompanied by her worst expectations.

Why do many of us do this? Why can’t we be completely open about our condition and comfortable with the way we have to navigate life? The only reason here, on this page, is mine. Here’s why I started down an unhealthy road despite a therapist and a saint of a husband.

First, when my epilepsy came forward, exploded, or was triggered (it doesn’t matter how you put it, it was still like dropping an atomic bomb on my life), I lost most of the things that defined me at that time.

I lost my job. Actually, I quit my job when I started going out of control and saying all the things out loud that everyone else keeps in their head. I was smart enough to know I could not continue in that state, that my condition had me spiraling. Recently, I saw an amazing interview with Linda Ronstadt. She spoke of knowing about her vocal limitations and then finally ceasing to perform as a result of the way Parkinson’s had affected her voice. That interview was heartrending for me because I associated so strongly with her words. I was never a Linda Ronstadt at work, but I had my achievements, my creativity, my hard work. And then I didn’t. So I lost the work.

I lost money when I lost the work. I lost freedom to travel and make an array of decisions when I lost the money. I lost my identity of self-worth with the loss of money and work. Not very noble, but there it is.

And then I lost people. I had all kinds of friends that I enjoyed, connected with work. These people left my life when I stopped working because I made them uncomfortable with this newly emerging and weird condition, or because my limitations were too hard to deal with, or all of the above. I experienced co-workers who stepped back, physically recoiling at the word epilepsy. And they never came near me again.

And then there were the complicated family issues. My condition had raged out of control and damaged close relationships. When people are hurt, they often ignore the causes, even if those causes might be medical. Some of these people will never forgive me. No matter how hard I work, that time will always be a millstone around my neck.

Finally, my experiences with neurologists were complicated and sometimes harmful. After working around them for years, I discovered that being a patient was a nightmare. In my experience with at least six neurologists, no doctor, no matter how brilliant, can give you good and humane treatment in 5 to 7 minutes twice a year. Each time I saw a new neurologist, I had to to start all over again, because each doctor wanted his or her own CT scans. Each new doctor refusing to look at my medical information from previous treatment courses. Refuse. Refuse. Refuse. Order new tests. Repeat the same ones clearly listed in my medical records. Treat me as less than a person. Add in autoimmune conditions and the inability to take medication and you have a recipe for disaster. I got mad and frustrated and continued to change doctors until one almost killed me. That stopped the whole unhealthy cycle. In the interest of honestly here, I was probably their worst patient.

When I finally got some balance back into my life, I looked at all the devastation that my illness brought on and decided, subconsciously apparently, to minimize the damage by pretending everything was the same as before with a few restrictions such as fluorescent lights. That’s how I split myself in two. I got so used to lying that I lied to my husband, the one person in all this mess that knew what was happening, that knew all the back stories, all the frustrations and humiliations, that knew me. He set up a rule forcing me to be honest with him about how I felt whenever he asked, which was many times throughout the day.

And I am ashamed to say this, but being honest is hard. It brings on guilt and shame, as ridiculous as that sounds.

So, why am I telling you all this about what I have lost. After all, everyone who reads this blog, who struggles with this condition, has lost so much more than can be stated here. I am trying to point out that all of us are prone to this unhealthy behavior. This condition boasts a high percentage of individuals with autoimmune conditions, with depression, with complicating illnesses, more loss than can be measured in a simple paragraph. We all lie to protect ourselves, but we need to stop and accept ourselves for who we are and what we struggle with day after day.

And we must love ourselves and respect ourselves because others won’t. They may never understand, and I say that in the most compassionate way possible. They may never understand because they can’t experience it.

Years ago, a family member I loved very much told me that she was developing fibromyalgia. It took her job, her energy and her freedom. And I didn’t understand it then. I tried, but I just couldn’t wrap my head around what was happening to her. I wondered if she was overreacting, which a common reaction from others. She was extremely successful at work and very active and then she wasn’t. I didn’t get it then. I do now. But probably only because I have a similar condition, Sjogren’s Syndrome along with my seizures. I now get the brain fog, depression, severe muscle aches and so forth. I get the devastation.

We can’t expect others to live in our world, to understand and sympathize. But what we expect is respect. We should be who we are and not a split person out of fear. And we should understand that as sad as it is, sometimes things can’t be put back together.

Now, more than any other time, we can know that there are others who have made the same mistakes, who have had their lives blown up, who have broken things and lost people. And who have come back from it to see their lives in a new light. We can all have this.

Love yourself for what you have been through. Love yourself for who you are.



The Jinn and Epilepsy


, , ,

A really interesting thing happened the other day as I skimmed through a Temporal Lobe Epilepsy group on Facebook. This closed group is protective of their privacy. I have seen them kick out writers trying to get information for books or articles. I never repeat anything I see posted there for that reason, until now.

Usually the posts have to do with medication questions or memes about how this person or that one hates having epilepsy. On occasion, I will answer a question about my past medication use. Mostly, though, I look at what people are discussing and move on. But this time I saw a bold statement on a colored background informing the group that seizures were actually caused by Jinn.

I have rarely read as much vitriol expressed on Facebook as I did in some of the responses to that statement. People had their hair on fire. They assumed the person, a member of the group with what appeared to be Middle Eastern name, was mocking them. Up to that point, the posts were mostly about Keppra or questions about side effects. And then this statement. Wow.

The response to him was so intense that I became curious and decided to do a little research. The statement about the Jinn means nothing unless you know the definition. I started with Wikipedia. (Hey, no judgement here, we all check it from time to time.)

Jinn (Arabic: الجن‎, al-jinn), also romanized as djinn or anglicized as genies (with the more broad meaning of spirits or demons, depending on source) are supernatural creatures in early Arabian and later Islamic mythology and theology. 

Modern belief in the Jinn persists to this day in places such as Egypt, Iceland, Arabia, Western Europe, etc. There are Youtube videos of Jinn possession in Moslem countries. According to a common belief, soothsayers and poets got their inspirations from the jinn. However, jinn were also feared and thought to be responsible for various diseases and mental illnesses.  

A scientific study found that as many as 48 percent of those who experience sleep paralysis in Egypt believe it to be an assault by the Jinn. Almost all of these sleep paralysis sufferers (95%) would recite verses from the Quran during sleep paralysis to prevent future “Jinn attacks”. In addition, some (9%) would increase their daily Islamic prayer (salah) to get rid of these attacks by Jinn. Sleep paralysis is generally associated with great fear in Egypt, especially if believed to be supernatural in origin.” 

The more I looked, the more I found on the relationship between the Jinn and neurological disease in the countries and religions mentioned above. These entities, described as smokeless fire, are usually portrayed as monsters or scary creatures that drive men mad. People in Muslim societies have traditionally associated mental illness and neurological disease, particularly epilepsy, with an attack from the Jinn.

The paper Possession by ‘Jinn’ as a cause of epilepsy (Saraa): A study from Saudi Arabia, published by Live Science, explains the relationship between neurology and demonic attacks. “Jinn possession is still believed to be a cause of epilepsy in Saudi society, even among fairly well-educated people”.

My curiosity had me following associated links to demonic causes of illness in Christianity, Budhhism, and Judaism. But it doesn’t stop there. The ancient Romans and Greeks had their beliefs on the nature of epilepsy, its causes, and its cures.

So here’s the point to all of this. First, the man who wrote that message was not making fun of those of us with epilepsy. He probably believed what he wrote. He may even have epilepsy. We don’t know. And the point of that is we all should be a little less condemning and a little more open to the fact that not everyone has the same spiritual or scientific orientation.

The second point is that I found the information fascinating. Do I believe in the Jinn? No. But, I find it interesting that we all have this disease that has inspired so much mythology and misinformation for the past five or six thousand years.

Who knows, at some point all this myth and history may come in handy. Nothing is ever lost. To borrow a quote from Ben Hur, open your mind because “the world is more than we know.”

Light Pollution and Faith


, , , , ,

“Now faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1

Light pollution is the brightening of the night sky caused by streetlights and other manmade sources. It disrupts natural cycles and inhibits the observation of stars and planets.

The other morning I went to my upstairs window to look out. It was 6:00 am. This is something I do every day at that time. I see the seasons change, the neighbors put up and take down Christmas lights, the birds starting their day, all sorts of things. I always look for a particular star that’s near a pine tree. It’s more visible in the fall and winter. Someone said it is Venus. It could be a satellite, for all I know. I count myself lucky if I look up and see three stars in the morning sky.

I live in Houston, but I frequently visit family in the Arkansas Ozarks. Last spring I flew into Memphis rather than Little Rock for a change. My sister and brother-in-law picked me up, and after our usual trips to Graceland and Bass Pro Shop, we headed over the Mississippi River bridge and into the dark night through the Arkansas delta farmland. As the car moved through the nearly deserted area, I looked up. And gasped.

In Houston, I felt lucky to see even three stars. Here there were billions. They fanned out over the night sky like glitter tossed on a kitchen floor. It was spectacular. And it made me think about the light pollution in Houston. All that light that never dims was covering up this breathtaking sight.

So, hold that thought in the back of your mind for a moment. This Christmas, I am sending out cards that I drew. I used to do this for years prior to the explosion of TLE in my life. Making a special card is a gift I gave myself. I can’t remember a time in my life when I didn’t draw. It was my compulsion, my joy, and my personal thing. I was an art student in college for a while, but quickly learned that I saw my drawing as something that was mine alone. I realized trying to make a living off it would not work for me. So, I continued to draw as I moved on to other fields. I drew each day on my lunch hours and after work. It was a peaceful and rewarding practice.

Then the epilepsy broke through one summer. It filled me with thoughts and compulsions, but unlike Van Gogh, my work did not get better; it looked distorted. Some part of me realized the distortion was in my brain and I was unable to change the way I made the images. This continued for several years until I began the CBD oil that eventually brought me back to a form of normalcy. During those difficult years, I still drew and I kept the bad sketches as a sort of diary of what I was experiencing.

As I got better on the CBD, the joy in drawing returned and I sort of pick up where I left off before the break. I felt rusty and unsure, but it was there, intact, waiting for me.

In my mind, the drawing and its problems remind me of the stars. Once it was abundant and then the disease obscured it for a time. But, just because I couldn’t see it didn’t mean it wasn’t there, kind of like light pollution that prevents us from seeing the stars. The stars are there, I just had to get to a place where I could see them. The drawing was always there in my brain, I just had to get to the place where I could access those brain cells that remembered, not the ones affected by the disease. I had to keep reaching for them. I had to have faith that they were still there for me.

It is my personal belief that in this society that is so quick to move, judge, ignore, and discard that we do ourselves a disservice when it comes to dealing with what we have lost to epilepsy. We should take a page from the stroke survivors who struggle to regain and rebuild brain cells. I believe we should have more faith in ourselves and in our own brains. We can recapture some things that seemed lost forever, while we can use others as a springboard for finding new ways to dealing with the disease.

In this season of Faith, I wish you all success and joy.




Wrong flight


, , , , ,

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

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

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

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

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

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

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

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

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

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

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

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

Weathering Changes


, , , , ,

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

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

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

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

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

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

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

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

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

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

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

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

Talking Heads


, , , , , , , ,

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Thin Ice


, , , , ,

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

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

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

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

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

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

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

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

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

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

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

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

The Sucker Punch: Autoimmune Diseases accompanying Epilepsy


, , , , , , , ,

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.