In the night

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“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

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

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

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

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

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

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

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

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

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

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

“Drink it.”

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

That is not exactly what happened.

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

Nothing happened.

At first.

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

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

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

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

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

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

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

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

Armor and Observation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Waiting Around for Normal

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There is always a temptation to write in the “we” so it sounds less pointed or personal, but I am afraid it’s just me saying the things I intend to say today.

There is no “we” in this case, only me outlining my weaknesses with the hope that someone out there will find my words useful.

I see what people write on Facebook sites all the time. Their entries run from ridiculous to frightening. Most of the time they ask questions, wanting answers about doctors, medications, their own seizures, and, finally, what is normal.

My sister says normal is merely a dryer setting and not a true barometer for one’s life. I tend to agree with her on that; but, for just this moment I would like to look at “normal” as the way the rest of the population perceives the world without distortion or filters of fear, anxiety, pain, self-loathing, and a kaleidoscope of memories and impressions that sometimes pours in.

I am talking about looking out the window, seeing a blue sky and green grass, neighborhood buildings, and perhaps hearing the sounds of children playing or neighbors leaving for work. Along with these sights and sounds are thoughts centered on a busy day, planning a meal, or feeding the dog. Nothing more. This is normal for me, and I wait for it, cherish it, and wonder at it when it happens.

I begin my day looking out the back window into the world outside, but I never know what my brain will tell me. Many times my thoughts are overlaid with feelings or impressions of the past. I look outside and I see a neighborhood in Houston, but my mind, my emotions, tell me it’s a cotton field in Arkansas, a parking lot in Louisiana, or a dorm in Indiana.

Until my diagnosis, I thought other people lived like this. After my diagnosis, I realized there is a difference between remembering something and experiencing something mentally that is out of your control. I now know this experience is part of the seizure cycle. For those of us with TLE, the seizure is only part of the disease.

I have a theory based on no medical information, just observations from my experiences. My theory is that when temporal lobe seizures strike, in an area of the brain that stores memories and emotions, they irritate surrounding tissue, and that is what we see, feel or think following our seizure.

Once, while I was still working, I went through a horrific meeting filled with a lot of yelling and nastiness that would have been more suited to a day care than a healthcare corporation. I got up and left the meeting, aware that I was going to have a seizure. I went into a stall in the women’s restroom looking for a measure of privacy so I could pull myself back together. It was there that I had the seizure, the electricity flowing over me for a moment, along with the nausea and the pain.

But it was what happened afterword that I found really interesting. While still in the stall, I was mentally transported to a job I held right out of college. I could hear the music that was on the 8-track player, smell the dyes in the clothing, and I see the face of a woman I hadn’t thought about in years.

Her name was Alice, and she had these really long eyelashes. At that point I saw her so vividly I could have counted each lash. Clearly, this memory had something to do with the seizure because it had nothing to do with my day or the experience of the meeting. It was completely random.

And so it has always been for me with these emotions and impressions that I cannot control. I have learned to talk to myself about this when I am in the cycle so I am not carried away with what I feel or sometimes see. Policing my thought, as as it were.

It is the “normal” that I use to gauge where I am in the seizure cycle. An absence of uncalled memories has become a beautiful thing. It’s the normal I wait for each day, hoping it will stay awhile. The normal outside of the seizure cycle allows me to be in control and not the other way around.

So I wait. The music of Ben Fold’s Annie Waits running through my head: Annie waits for the last time / Just the same as the last time. / Annie says “You see this is why I’d rather be alone.”

A News Year’s Resolution

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

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

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

That said I want to add a twist to it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s a Paradox

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

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

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

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

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

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

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

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

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

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

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

I can’t be the only one.

Fear and Loathing in the Seizure Cycle

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A couple of weeks ago I learned a severe lesson. It was valuable and interesting, but difficult to appreciate while I was living through it. I wanted to put it out into the blog world because I can’t believe that I am the only one struggling with these outcomes.

While each of us is different, in as much as our brains and personalities are different, some responses have to be similar. Knowing that others experience and survive the same things often soothes the loneliness and fear that accompany my condition.

For me, this episode began with good things, as my problems often do, with too much family, too much laughter, too much noise, too much movement, and just a bit of confusion. I feel my adrenaline level rising. Why not? I am happy, and I am responding like any other human being to happiness.

But adrenaline is a trigger for me.

I went to bed tired after a satisfying day of food, baths for dirty grandchildren, and the hilarity that sometimes arises from combining kids, water, and a dog. I woke up to a starburst of intense pain and fear. Although I had not opened my eyes, I couldn’t see anything but the inside of a star.

I needed several heartbeats to recognize the intense pain that came from within and radiated out of my body in electric waves as if I were some type of electrical conductor. Intense fear followed. I was mindlessly afraid, but I didn’t know why or of what.

The pain and the fear took my breath away, literally, and I started choking. At this point, my body’s survival mode kicked in and I pulled my attention away from the star and moved my body.

Electricity washed over me again and I opened my eyes.

I took a deep breath and told myself I had a seizure and I needed to calm down, that absolutely nothing I was thinking or experiencing was real.

Talking to myself usually helps. It didn’t this time. A new wave of electricity hit men. Then the waves came quickly as if someone was using a Taser on me. My chest and head began to hurt even though the earlier pain was receding.

I began to argue with myself. One side wanted me to wake up my husband in case I was dying; the other side was calling me stupid and accusing me of overreacting. You have temporal lobe epilepsy, I told myself, so this is what it is.

Pretty soon, my inner dialogue became strange, or stranger, so I did the responsible thing: I got up, stumbled to the bathroom and took a tiny dose of Valium, my “rescue medication.”

The electrical shocks hit me another couple of times before I felt my body relax, my breathing become regular, and the pain lessen. The Valium had saved me from a series of seizures, but the problems had just started.

I no longer take drugs for my seizures, prescription or otherwise. The Valium is strictly for emergencies. The reason is both simple and complicated. I have Celiac, an autoimmune condition secondary to the TLE. This is relatively common. I read somewhere the other day that as many as 30 percent of epileptics may have Celiac, and that neurologists should automatically order Celiac tests for new patients.

As I understand it, Celiac affects the way the body absorbs or reacts to medications. In addition, untreated Celiac can cause seizures. I noticed that I had a reduction in a certain type of seizure once I started treating the Celiac. It doesn’t return unless I am exposed to gluten. That’s the simple part.

What is not so simple is that in addition to, or probably because of, the Celiac, I have a autoimmune reaction to all drugs. My body reacts badly, treating the medication as a poison and sending me into a seizure. Even anti-seizure drugs cause them. Anticonvulsants will stop the initial seizure, but they will cause rebound seizures with very nasty side effects.

I took Valium a couple of times a week for several years. I cut my pills into fourths thinking I was keeping the dosage low enough that I wouldn’t get hurt. But recently I began to question its effectiveness. I thought I should probably take it only in an absolute emergency, that way I would preserve its ability to help me when I needed it the most. It was really the last option left to me other than cannabidiol (CBD) oil, which is still not available in Texas.

I saw a change during the three months without Valium. I recovered quickly from seizures, even though I was more uncomfortable around the seizure episodes. I was no longer depressed and in constant pain. I began to take for granted not experiencing pain in the evenings, not feeling the weight of fatigue or the hopeless that often accompanied the seizure cycles.

Back to the nightmare.

Once I took the Valium, I knew the situation would be prolonged. I just did not know what would happen. I found out the next morning. I felt like I had been hit by a truck or had someone take a baseball bat to me, or both. And, worse, I felt hopeless, seeing images of death weave their way into my thoughts.

But typically, I did not catch on. I was ill-tempered and tired, but clueless. The depression deepened. I began to play solitaire, which should have been a signal. But that went unnoticed, too.

Then my phone dinged with a notice from Facebook. I checked my account to see a handful of people had “liked” a picture I had posted the previous day. I became unreasonably angry and suspicious. And confused. I was really mad, but I didn’t understand why. I believed my Facebook contacts were the cause of my anger, suspicion, and confusion. It was at this point that I realized I was in another seizure cycle. The Valium was creating auras and I was ramping up for another seizure or series of seizures.

The Valium removed the immediate problem the night before, but it restarted the process, this time with a really negative aura. The only thing to do at this point was to shut down and wait, remove myself as much as possible from others, and let my family know what was happening.

I reminded myself that I could not trust any perceptions or feelings. I did not bother trying to draw, because I knew it would result in a distortion. I colored in an adult coloring book, trying to allow the slow movements and the colors to work their soothing magic on my brain. I listened to audiobooks and did yoga.

Eventually, I had another seizure similar to the one that started the whole thing. It was less painful and resulted in only one episode. This time I didn’t take the drug.

The next morning I woke up and took a physical and mental inventory. I felt hope, I felt creativity, and I felt happiness. There was some pain, but I believed it could be worked out.

Lesson learned.

The next time I will know the price of trying to stop a seizure. Like Alice when she leaves the Mad Hatter’s Tea Party and says to herself, “I will manage better next time.”

Relax, I’ve Got Your Head

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Last week I went to the hairdresser. This outing with my husband is always a diversion for me since I am rarely able to leave the house. I enjoy interacting with people other than family members for a change, so I tolerate the trip into the city. I also like Trey and her shop in an old house.

While I was leaning back over the shampoo sink, Trey said “Relax, I’ve got your head.”

It was one of those things that immediately started up my brain. It sounded like the common saying, “I’ve got your back” that we are used to hearing, whether it’s in the workplace or at home. I think we would all agree that it means the other person is willing to protect you or stand up for you in a particular situation.

That said, the thought came to me that “I’ve got your head” could mean quite a bit more to someone with our particular seizure issues.

Think about it for a minute. It could mean that the other person understands and supports your personal struggle with seizures. The person has your head, is there to look out for you when you can’t always be alert enough to look out for yourself.

So as Trey washed my hair, I thought of who had my head.

The first thought was one of regret and resignation that I did not have someone like that in the medical field. I have not been able to find a doctor recently who did not want to write a “script” and have me move on after my seven minutes were up. This has always puzzled me since issues with the brain seem to me to be much more complex than other issues with other organs simply because our consciousness is encased within our brain. Maybe the fault lies with the fact that there seems to be little specialization within the field of Neurology, when one would assume that there would be more specialization due to the complexities encountered.

After putting that unhappy thought aside, I thought about who does have my head. The image of my husband came to mind. His thoughts are always for me first, and how events and surroundings will affect me. I feel sometimes as if I live within a snow globe, encased in glass. Something will occur to shake up my world, turning it upside down, but I am still in it. I never get out. And he is probably the only person who truly knows this since he lives with me from day to day. He can see how even the smallest things impact me. He sees what I hide from others.

Then there’s my family. This condition has brought home strongly how close a family can be. I see all the things they do to bring me into the group or help me live my life productively. Each person has contributed to my struggle with expressions of love and help. Each has given me some valuable personal talent to guide me back to a meaningful life.

Along with family, I have a few friends who have been with me over the years and have experienced the frustration of seeing me change from a seemingly normal individual into someone with special needs and an uncertain personality. They have stuck with me through the worst. They have my head, too.

There is the saying that if people see you at your very worst and still love you, then they are true friends. Well, I have true friends. Not a lot of them. There were plenty that ran off when the problems started; but, the ones who stayed are worth everything to me.

So, in thinking on this deal about who has my head, I have gone through an exercise of gratitude. But who or what is the most important point of the exercise? I realize that it is my belief in a personal God. I believe that God has my head and has helped me through the changes that this condition inflicted on me and my family. Every time I reached a point of giving up, I got a message or sign pointing the way out. These signs were things like research papers posted on the Internet, something someone said that started a productive thought process, an intuition about a situation that led to an answer, and so forth.

I went from roaring right up to the threshold of a mental breakdown to a logical understanding of what is happening, what it affects, what other conditions I have developed as a result, what to take and what not to take to work toward a more normal and peaceful life, and most days an acceptance of the situation.

I didn’t do it alone; I had to develop an inner peace and self-confidence that would allow me to accept the answers I find. Could I have done this on my own? In a word: No. Without my belief in God, I would be still locked within the breakdown.

Recently, I saw a post from Byrn Mawr, apparently by a person who doesn’t have TLE:

“It’s instructive to observe the people who have Temporal Lobe epilepsy and related brain damage. Despite their awareness that this damage causes hyper-religiosity, they persist in religious behavior. They are so controlled by their damaged brains that they rationalize that they continue their religious beliefs because they choose to, and claim that the brain damage has nothing to do with it.”

Wow. My first thought is that this person’s karma is going to be rough. But, as for me, I am OK. I have an abundance of love from people who “have my head.”

I also have my belief that God is with me and will use this situation for good. So He has my head, too.

 

 

Hero of Your Own Story

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Ten years ago today I was suffering from terrible pain. I thought I had developed intractable migraines, which I probably had, but with a twist: seizures.

I experienced various types of simple seizures throughout my life without understanding them. I was told by a psychiatrist, without the benefit of a neurological exam or even an in-depth psychological evaluation, that I was hysterical. Because of this pronouncement, I experienced a great deal of shame and did not offer a full medical history when seeing doctors about my migraines. I kept things under wraps until ten years ago when the dam broke and all the pain, hallucinations and partial seizures took hold of my life with a vengeance.

It’s been a long ten years in many respects, and now I choose, because each of us can, to see myself as the hero of my own story.

When I think of heroes, I think of Odysseus, the Greek hero of the Trojan War who experienced a fantastic ten year journey when he left Troy to return to his native Ithaca, Greece. I was raised on the Odyssey so I know him. I like him. Odysseus is not your average superhero. His success comes not from being powerful or brave, unlike the superheroes of today, but from being clever and resourceful.

If I were to compare my ten year journey to his, I would start with the resourceful bit. I have a lot of resources, particularly the Internet. Am I clever? Well, my college classes taught me to evaluate and understand statistical studies and to separate opinions from facts. So yes, I would consider myself somewhat clever and certainly resourceful, like Odysseus.

He and I have a lot in common. The initial emergence of epilepsy into my life was like being attacked from all sides. It was my Trojan War. There was a great deal of pain; hallucinations that I recognized as hallucinations; hallucinations that I thought were real; partial seizures where I lost consciousness for a moment; nausea; muscle pain; fear; a lot more fear; anxiety; insomnia; generalized seizures; personality changes.

This was a war my mind perpetrated on my body.

I felt like I was at war with myself.

At first I thought my war ended with the diagnosis and the administration of medication. I was like Odysseus in this misunderstanding. We thought we had won and it was downhill coasting from there. Neither of us realized the most challenging parts of our lives were coming.

As Odysseus attempted to sail home with his full complement of soldiers, he encounters situation after situation that test him and his resourcefulness. His first stop was on the island of the Lotus Eaters who gave a drug, the lotus leaves, to his men, leaving them stoned and unwilling to move or work to get home.

Once he got them out of drug haze and back on the boat, he stopped on the island of the Cyclops for water where the single-eyed monster took him captive, ate a few of his men, and caused a lot of problems as the group escaped.

Aeolus gave Odysseus a bag of winds to blow them home, but his men opened the bag at the wrong time and blew them all off course.

On the island of Aeaea he met the dangerous goddess Circe who gave his men a potion that turned them into beasts, literally. It took Odysseus a year to work that one around to his advantage before he returned his men into human form and got back on the boats.

Next comes the land of the Laestrygonians, who happen to be cannibals. Only Odysseus and the men in his boat escape them.

His fighting force from Ithaca is now reduced to a single boat. He journeys to the land of the dead and has a few heart-to-hearts with various key individuals in his life before the gods allow him to move on.

After this, he is immediately put in the path of the Sirens, creatures who sing sailors to their death on rocky shores because their pull is so irresistible. Here he plugs up the ears of his crew with wax, but ties himself to the mast so he can hear their song. His intellectual curiosity is satisfied, he’s a little crazy by this time, but he is safe.

Still losing men along the way, Odysseus must sail between Scylla, a six headed monster who swallows sailors as they attempt to sail past, and Charybdis, a tremendous whirlpool.

Then his boat stops at the Island of Thrinacia, the land of the sun god Hellos. It is Hellos’ cattle that graze there and everyone is forbidden to touch them. Of course our hero cannot control his men, who all die after eating steak for dinner.

With his men dead and ship destroyed by Hellos, Odysseus is stranded on an island with Calypso, a witch, although an attractive one, for seven years. Calypso is eventually convinced to release him to the King of Phaeacia who equips him to return home.

When Odysseus gets to Ithaca ,he finds his palace overrun with slimy suiters trying to marry his wife and murder his son. He is a stranger in his own home and at first no good to his family. He must once again use his resources to break free of the bad, confining situations and to reunite with his beloved wife and son. His wife Penelope has been waiting for him all these years and is ready to resume their life together. We leave Odysseus successful at last after his ten year journey.

So if you have stuck with me this long, you may have some idea why I compare my odyssey with Odysseus’s.

I start my journey after the “war” on my body with doctors who prescribed a variety of drugs. And like Odysseus’s crew on the Island of the Lotus Eaters, I soon fall into addiction. I had to forcefully withdraw from most of the drugs to move on, to improve.

The Cyclops reminds me of some of my medical treatment. I felt like my doctors were not really seeing me or understanding my condition. I barely escaped with my life a few times, quite literally.

Often well-meaning research has “blown” me completely off the path and made my journey more difficult. I encountered the dangerous goddess Circe and was turned into a beast with some of the anticonvulsants that triggered rage and suicidal impulses.

Along the way I have lost men. By this I mean the soldiers we all have that shore us up and keep us going. They are personal and professional successes, talents, abilities, income, friends, family, job, self-esteem and self-worth (those wonderful twins), and anything else you can name that truly impacts your life.

I have been to the land of the dead to have conversations with those I lost in an attempt to understand where my life was going. Yes, technically I was having seizures at the time, but that doesn’t change the need for the answers.

I continually heard the Siren’s song. It told me that if I were to take the drugs and the painkillers I would be better, happier and all problems would cease. Oh, and they said I could smoke and drink Vodka too.

I sailed between the monster of lapsing into permanent illness and the whirlpool of becoming so caught up in my research that I lost sight of myself as a person.

I have had doctors destroy all that I built up as they act like the sun god Hellos, not wanting me to wander into their territory no matter how hungry I was for answers.

I have felt the stalemate of life passing with no purpose, no matter how easy it looked from the outside. Calypso seduced me into a level of numbness for a while.

Like Odysseus, I finally made it home to find my palace in confusion and realizing I must fight my way back into my family’s life and heart. Odysseus does this with a giant bow, a weapon associated with the heart. He also took the disguise of a beggar. I did as well. I had to humble myself to understand how I was going to weave my family back into a whole piece after my illness had almost destroyed it.

In the end, Odysseus found his way back to Penelope. Here, the character actually means two things to me. First, I see my husband as Penelope, never giving up despite falling into depression. When I finally came home I was accepted as was Odysseus. I also see Penelope as the healthy part of me that has been waiting through the last ten years to surface. “I was here all along” she says, “waiting to step back into you with the knowledge that you will be OK”.

And I am. I am the hero of my own story. So are all of you.