Monday, April 25, 2016

Spring Fever

     Now that the weather is warm, I'm beginning to really miss having my driver's license. This is causing me to rethink my tendency to be totally honest with my doctors. "What good has it done for me?" I wondered to myself this morning as I got up to face another day of being dependent on other people to take me places.
     It's a question that goes around and around in my head more often these days. I feel betrayed by all of them except Dr. S, who had to move away to Wisconsin (too far to stalk him).
     Then, I remembered how the same doctors who expected me to surrender up to four days of freedom so they could videotape me with wires on my head readily dismissed my one recorded seizure as a mere "spell" before I left Walter Reed Medical Center last month.
     That's when I came up with an even better idea than lying to future physicians. I could use their own words against them and maybe shed myself of this epileptic label once and for all.
     After all these years of being on medication for seizures and even fretting over having a broken hippocampus, I can again embrace that original description my mother and I gave to my bizarre episodes when they began in the 1980s.
     If we called them spells then and a doctor at Walter Reed called it a spell last month, why not return to the past and redefine myself as NOT having epilepsy at all?
     The Virginia Department of Motor Vehicles cannot take someone's license away for having a "spell," now can they?
     I'm going to email my neurologist now and see what he says.
     It's boring having to stay here at the house all the time due to a strange type of seizure no one else seems to have or understand or even want to admit exists. Now that I'm not experiencing the ecstasy any longer, I'm ready to get out and about where things are actually happening in the world.
     Once I rid myself of this epilepsy label, I can officially break up with these cold-hearted neurologists once and for all. Someone would need to keep prescribing my Depakote sprinkles, however, as those pills sure do the trick for keeping my "spells" at bay.
     It shouldn't be a problem because Depakote is a very popular drug and doesn't need to advertise on daytime T.V. Like so many other anticonvulsants, it's a mood regulator.
     My "spells" certainly respond to it well, as does my chronic insomnia. I could more than likely get my primary care doc to prescribe it and do the necessary blood tests to make sure my liver isn't being destroyed.
     Then, I could get my driver's license back and not wait around until fall.
     I'll let you know what my neurologist says. Maybe he'll tell me I'm cured.

Wednesday, April 20, 2016

Some Powerful Mojo

     Last night, I rode with a new friend to hear one of the bravest men on the planet speak in Rockville. I was expecting a large crowd, like the ones I've made my way through to see one of my favorite authors, Jodi Picoult, but was surprised to find a more intimate setting.
     I started reading two of his books at once over the weekend. The first one made him famous, and now his new one really has my interests piqued.
     A few years back, I also read his little brother's book, but this brother is my favorite. His brother's book left a bad taste in my mouth and bothered me afterward, like a meal with raw garlic in it.
     At some point a couple of months ago, I communicated with this author, Johnn Elder Robison, via Twitter, I think. It's hard to remember the details, but it was one of those moments that gave me hope in the midst of what was definitely one of the strangest winters of my life.
     I'm about halfway through his first book, look me in the eye, and amazed at the adventures he is taking me on. Not realizing he was on the autism spectrum until the age of 40, Robison used his smarts to figure out how to fit in enough to survive the harsh judgments of others.
     Still, it bothered him. He told us last night that people with autism feel everything despite not showing it the way we expect. We feel it even more, and things bother us longer, too, he said.
     I could relate to that statement 100 percent.
     Until last night, I was having a hard time reading the early chapters of look me in the eye, waking up early in the morning with those bad memories from being a special ed teacher coming back to me. Now that I have seen the grown man and felt his strength in person, I can finish it with the anticipation of knowing the best is yet to come.
     The reason I consider Robison to be so brave goes beyond his list of successful endeavors in life, both before and after being diagnosed with Asperger's syndrome. Six years ago, he agreed to be a guinea pig for transcranial magnetic stimulation (TMS) so scientists could figure out how to help people with autism increase their ability to read social cues.
     My Flowers for Algernon comparison of what I am like when seizing or on various anticonvulsant meds pales in light of what he went through. Last night, he was adamant about referring to TMS as an experimental investigation rather than a treatment; the neuroscientists attempted to alter his emotional intelligence with magnetic stimulation in certain areas of his brain.
     The woman who introduced him at Ivymount School was careful to mention that the school promotes "evidence-based methods" of helping people with autism. Hearing that brought back a little hiccup of bad memories, too, but I know educators have to talk the talk in order to keep their jobs.
     The autism community has had some pretty nasty tricks played on it, as charlatans of the worst kind try to convince parents they can cure their children in various ways. Robison was there to share his experience rather than peddle TMS as a treatment.
     He did say that in the six years since his experimental sessions, it has become an accepted method for treating depression and will likely be used in the future to treat epilepsy. Yes, the E-word was mentioned at least three times during his talk last night, which filled me with hope and apprehension at the same time.
     What I someday consider fine-tuning my own brain in a way that could alter my emotional intelligence?
     To me, it sounds like TMS turned up the part of his brain that is already cranked at such a high volume in myself that I don't always fit in with my own kind. The prologue of his new book, Switched On, literally gave me goosebumps in describing an experience that sounds very much like my everyday relationship to music.
     After his first TMS session, as he was driving home, he played a favorite tune on his iPod that suddenly took him back in time 24 years. He was 50 years old at the time and had spent much of his youth traveling with rock bands who hired him for his technical engineering expertise to design exquisite sound systems and smoking guitars...not local yokels but big names like Black Sabbath and Kiss.
     Although Robison had heard the song on his car stereo system many, many times before, this was the first time he felt the music. In the book, he describes it as being like an out-of-body experience in which he could remember every last detail of the smoky nightclub in which he heard the song more than two decades earlier. Last night, he called it a musical hallucination.
     "I listened to music until dawn" he said. "It made me cry."
     Robison contacted his doctor and said, "That's some powerful mojo you got there!"
     He said, "After that moment, I heard music with greater intensity than I had in years. For the first time, I felt the emotions of the songs."
      To me, it was reminiscent of what happens when I listen to certain songs and feel as if I am in three different time periods at once. It also reminded me of the deja vu feeling that forces me to switch the radio in my car if I hear a song that starts to take me too far away, like I am about to have a seizure.
     That's part of the reason his new book fascinates me more and more as I turn the pages. It's almost as if his doctors experimented on the same part of his brain that is a little bit "off" in me.
     "A tsunami of emotion washed over me," he continued, eloquently describing that first night of being emotionally in tune with his favorite songs.
     I held back the tears when he told us this; my own tsunamis of emotions happen in the worst places possible, like when the congregation sings an old hymn, and I can feel myself back in the pews of my hometown church...a little girl with lemon drops on her breath.
     Sitting there on the third row at Ivymount, I used my self-taught emotional regulation to hold in the tsunami of tears inside me. Nobody likes a crybaby, the little girl reminded me.
     Robison said that first TMS session and the ones that followed sensitized him to emotions to the point that is was debilitating at times and changed his life in painful ways. He lost friends and divorced his wife as a result of the sudden increased ability to read the emotions of others.
     People who previously seemed to be laughing with him at work were also laughing at him, he realized.
     Robison's emotional wakening made him aware of the true value of being autistic as he became vulnerable to criticisms apparent in social cues he previously missed. "I lost the shield of autistic oblivion that protected me," he said.
     Prior to TMS, he was skeptical of people who react to faraway disasters that do not really affect their own lives in any way; it didn't mesh with his logical, Asperger's way of thinking. However, now he is more like me, bothered so much that he cannot watch the news without feeling pain for others.
     "Twenty years of therapy could never touch what 30 minutes of this did for me," he said. "We are on the cusp of being able to reach into the mind and change things that have never been able to be touched."
     After his diagnosis of Asperger's syndrome, Robison accepted the "God made you this way" of thinking, but now that has changed. TMS may not be a new treatment for people with autism, he said, but it is a metaphor for how medical technology can help all of us.
     Now, despite the disruption and pain caused by his sudden emotional awareness, Robison embraces his new identity as an advocate for the growing field of neurodiversity. "The whole point of this is learning to stand up for yourself," he said.
     Although he was already successful in several career fields prior to TMS, he volunteered for the study because all of his successes were solitary pursuits. "I wasn't a team player," he said. "I either believed I had failed or was told I had failed. Now, I'm doing things that are based on engaging large numbers of people."
     One of his new roles is that of teaching courses in neurodiversity at the College of William and Mary. "We're teaching every student that comes to William and Mary the value of neurodiversity," he said, comparing it to the civil rights movement of the 1960s.
     Referring to himself and a young man from the audience who had asked a question earlier, Robison said, "We could never qualify for admission at William and Mary, yet now I teach there." That statement was enough to convince me he realizes what a tough job he is taking on as an advocate for people whose brains are different from the norm.
      The final question was from someone asking if Robison considers the TMS experience to be worth it despite the painful journey and broken relationships. "Yes," he said, "This advocacy is the most important work of my life."
     Hearing those words come from his mouth and then shaking his hand was some awfully powerful mojo for me, still recovering from my own painful journey.

Sunday, April 17, 2016

Ecstatically Alone

     In my lap is an article from a journal called Epilepsy & Behavior, dated 2009. It isn't my kind of journal, with scraps of paper and purple scribbles and pictures all mixed together, but rather a medical journal with big, fancy words and lots of notations.
     Professors and doctors can be extremely protective of their words, constantly making sure no one takes credit for their original ideas. You may notice I don't write that way; it's because I'm a journalist.
     Feel free to steal my words and ideas to reuse in any way you please. I don't care if you give me credit; it's a big enough compliment to have someone take the time to see things from my point of view.
     When I was a volunteer in the art classroom at my sons' elementary school, my friend, the art teacher, gave me advice for students who became angry when their classmates tried to imitate their drawings or pottery or other projects. She said to remind them that imitation is the greatest form of flattery.
     Sometimes, I had to further explain to students what those big words actually meant, which was fun because I love talking about words and what they really mean.
     I learned how to quickly get through and understand articles from professional journals while getting my master's degree in Special Education at UVA. Other students who were much younger than me provided insight on how to skim through the annotations and find the good stuff, while the professors taught me which types of articles to trust.
     It's a valuable tool for someone who is looking for the truth but not always sure where to find it.
     A woman from the Epilepsy Foundation emailed the article to me, page-by-page, after I called and asked for information about ecstatic seizures. It's old but one of the best articles I have been able to obtain on the subject.
     The authors interviewed five patients with ecstatic seizures and came up with a theory involving another part of the brain, not the temporal lobe. Dr. S tried to explain a similar idea to me last summer, when he pointed to an area of my MRI pic that is near the broken part my brain.
     In this particular article, the authors concluded that hyperactivation of the anterior insular cortex is responsible for the "intense feelings and heightened self-awareness" reported by ecstatic epileptics. If you look up "insular cortex" on Wikipedia, there is a section titled "Subjective certainty in ecstatic seizures" that may be easier to read than the journal article by F. Picard and A.D. Craig, which is resting on my knees.
     Now that I have given proper credit, it's time to talk about what the five people in their study had to say, hopefully in a way that won't anger the authors enough to file a lawsuit against me. I'm selecting the parts most relevant to me, the ones similar to the feelings I have during my own seizures.
      One woman said her body fills with warmth from her feet to her head and then she is overcome with a feeling that it surreal, as if she is at total peace, with no worries. "It felt beautiful; everything was great," she reported.
     She described the sensation as almost like an orgasm but not at all sexual, and although not a religious person, she said the experience itself felt almost religious in nature.
     The seizures have taken away her fear of death and left her with more detailed perceptions, especially when listening to music. "It's a big happening in your life, to have these seizures," she said.
     Amen to that, sister.
     The next person felt a sense of deja vu, like me, during his aura. He reported a sense of well-being with a pleasant feeling that wraps his entire body, like velvet, sheltering him from anything negative. "I feel light inside, but far from being empty, I feel really present," he said.
     Also similar to me, the second epileptic maintained his sense of awareness to his surroundings and some control over his conscious thoughts. "I feel a stronger consciousness of the body and mind, but do not forget what is around me," he said. "My inner body rises from an unalterable bliss. I escape into the time space of my body. It is a moment of fullness in the loophole of time, a return to myself."
     He experienced anxiety, the way I do, about how he would appear to others during the seizures, but that anxiety was overcome by the mounting sense of bliss.
     The third person described feelings of pleasure that become stronger and stronger until they are unbearable and lead to a complete loss of consciousness. He went on to say the intense feeling of fullness and pleasure was "a physical overload" that is "certainly more intense than could be achieved with any drug."
      The fourth person described a head that is filled with emotions and a sense of being more conscious of herself in a pleasurable way that builds to a crescendo of intense cerebral thought. "Being very conscious of myself, I feel discharged from anything else, although I do not lose consciousness," she said.
     Like me, she also felt a sense of being relaxed and having warmth rise up through her body.
     The final person in Picard and Craig's study earned purple lines on the page beside her descriptions, which means they spoke to me loudest. She, too, has a sense of well-being that is almost spiritual in nature.
     "The immense joy that fills me is above physical sensations," she said. "It is a feeling of total presence, an absolute integration of myself, a feeling of unbelievable harmony of my whole body and myself with life, with the world, with the 'All.' Entirely wrapped up in the bliss, I am in a radiant sphere without any notion of time or space," she said.
     "My relatives tell me it lasts two to three minutes, but for me, these moments are without beginning and without end. These experiences brought me confidence. They confirm that there is something that surpasses us."
     Last week, before taking the time to read this article I had already printed out, I described similar feelings in a much less eloquent way, with my Fyodor and Simba post. When I finally took the time to read it, I could hear that Meat Loaf song playing in my head, the one that says, "You took the words right out of my mouth."
     According to the authors, an altered sense of time during ecstatic seizures can be explained by the involvement of anterior region of the insular cortex, which is crucial to human time perceptions. While reading that info, I remembered telling my sons last summer as I sat on my front porch that time doesn't really exist but is something made up by humans so we can keep our lives organized.
     The authors try to distinguish these five people from those with temporal lobe epilepsy by certain differences in their behavior and symptom reports. I'm not going to get into all that because I think the two are connected and cannot be so easily separated.
     Dr. S was very persuasive when he pointed out different areas on my MRI and showed how they are all connected and nestled right up against one another in my head. He's the one who told me about how my hippocampus is part of my limbic system, which regulates such things as emotion, behavior, motivation, memory and sense of smell.
     I wish more neurologists thought the way he seemed to think, about how everything in the brain connects.
     Picard and Craig were on the right track at first, with their in-depth reports of what people actually feel during ecstatic seizures. I also agree with their theory that patients are less likely to talk about pleasant symptoms during seizures out of a sense of embarrassment or limited ability to describe in words what is happening in their own minds.
     But I'm not completely comfortable with their idea of separating people with ecstatic seizures from those with complex partial seizures originating in the temporal lobe. Instead, I wish they had listened to Patient #5 and followed her lead about there being a greater connection to "the All."
     People with epilepsy seem to be divided into enough seizure types anyway. I think the figure is around 120, but would hafta look it up to be sure.
     However, I do appreciate their taking the time to study and write about ecstatic seizures. I carried the article in my pocketbook yesterday because I knew there would be lots of people with more common types of seizures all around me, types that show up more easily on EEGs and cannot be hidden when they happen in public places.
     I didn't show it to anyone but wanted to have it on hand just to prove that people like me really do exist.

Saturday, April 16, 2016

The Others


     No, I didn't find another ecstatic person in the crowd but neither did I try very hard by mingling and chatting people up about whether they enjoy their seizures or not.
     It didn't feel right to do so while standing there next to the SUDEP booth or the one where people posted remembrance notes to family members and friends who haven't lived to tell their own stories.
     In typical Rebel fashion, I arrived late and slipped into the crowd. It may sound like an easy thing to do, but for me, it's work to arrive places early or late.
      My best explanation for today's tardiness is my ongoing battle with insomnia. It wakes me up too early, and my mind/body are then slowed down to the point that it takes forever to get ready, regardless of how much planning I do beforehand.
     It was the same way in my last few months as an autism teacher. To my principal, it was a sign of disrespect, like showing up late for church. (Guilty as charged on that one, too!)
     I wasn't sure by the time I Ubered to the Metro if I would have enough energy to do even the shorter "fun walk," so I wasn't that concerned about being late.
     Nor did it matter to me that I had probably missed the big celebrity, one of the guys from "Pawn Stars." I was there to stalk the experts if necessary, scheduled to speak at the very end of the event.
     Like a true reporter, I wanted answers and was willing to give up the chance to meet other "ecstatics" if I could have a few moments of the epileptologists' time.
     The Uber diver was originally from Somalia, which delighted me because that's a new place to add to my collection of places where "nice" people come from. I asked him about the weather there, and he asked me about the weather in my part of North Carolina.
     Before getting out, I told him the same thing I told my last driver, about how going for an Uber ride is better therapy than the doctors provide for me. "It's the human connection," he said. I gave him five stars and a tip for being human, like me.
     The excitement of traveling on a packed Metro into D.C. on the same day as the cherry blossom parade is contagious. There were kids everywhere, and one little boy kept me entertained by asking questions the entire ride.
     "That's a smart one, asking so many questions," I commented to his mother as she handed his baby brother off to dad for the departure.
      She answered with some big word meant to  impress me that didn't mesh with the rest of her sentence. The little boy must've gotten his smarts from dad, the one who patiently answered all those questions and pointed out things to read along the way.
     The first thing I did once I reached my destination was find the registration/tee-shirt tent. Then, I flipped my shirt around and spotted what I was hoping not to see, the name of the drug company that makes Fycompa.
     There is no way I would wear a shirt promoting that company, but I had expected as much and came prepared. Making my way over to a tree, I took out my purple markers and defaced their label. When the company logo still showed through purple, I brought out black, and that took care of the problem nicely.
     Then, I changed shirts right there in the shadow of the Washington Monument, but did so in the most modest way possible, putting the large white shirt over my purple and white tie-dye, then removing the colorful one underneath.
     Anyone watching me might have thought I was having some sort of "fit," but in reality, I was making myself comfortable. No one was paying any attention, which is how it usually goes.
     I contacted one of my Instagram friends then but had problems with my phone that delayed our messages. We never managed to connect in person; he was heading off to the airport as I was getting settled in.
     My wandering took me to the VNS Therapy tent, and I took their free bag and info. It sounds like a creepy procedure but not as bad as having part of my brain cut out.
     There was a tent for making videos about our epilepsy experiences, where I waited in line reminding myself to breathe and not talk too much while a woman discussed losing a child to epilepsy.
     She was a lot older than me and today was her 9th epilepsy walk, which is almost perfect attendance, as today's walk was the 10th.
     I liked the reporter, ChattyPattyDC, which is probably why I was relaxed enough to talk about feeling like "the only one out there" with ecstatic seizures. It wasn't until the end of the interview that I realized she was letting me talk without prompting and really listening to what I had to say.
     That made me like her even more. She was a smart enough reporter to listen, and her compassionate reaction raised  my hopes that the video might actually get air-time and reach the eyes and ears of another "ecstatic" person out there somewhere.
     Bluegrass music and giant bubbles greeted me as I left the videotaping area and headed over to the stage, angling for a seat near the front. The "Ask the Experts" grand finale was about to start, and I had no intention of going home without at least one answer.
     The format wasn't my favorite type but one I should've expected. We had to write our questions down on cards so the Epilepsy Foundation person could select them and ask for us. The reporter in me was shaking her head, saying, "You wimps, screening our questions for appropriate content."
     The two male experts were local, with connections to the University of Virginia, and the woman was from USC, which she pointed out to be the University of Southern California, not South Carolina. I wondered if there were any offended Gamecocks in the crowd.
     The pediatrician pissed me off fairly quickly, as he began telling people things they should never do alone, like swim. I wanted to interrupt him with stories of all the things I've done alone, both before and after discovering my little spells were actually seizures.
     Before today, I never realized epileptics aren't supposed to take baths, ever, just showers. I almost always take showers unless I'm stressed out and need to relax or after having multiple seizures in one morning. That info would have blown his mind or convinced him I like do dance with danger.
     The reality of it is much less ominous.
     This past winter, one of my favorite things to do after seizing a few times in one morning was to float around in a  half-filled tub of water, letting my own Spotify songs blend in with my son, Ronnie's, rap tunes.
     It was extremely comforting and made me think of the squeeze machine Dr. Temple Grandin designed for herself in college. Something about floating around in the warm water with one rapper blending into the next gave me a brief sense that everything was going to be okay.
     My first question made it through the Epilepsy Foundation person without a hitch. I simply asked why there was so little communication between neurologists and behaviorists/psychiatrists about such issues as insomnia, anxiety and behaviors. The experts said things are getting better in that area, with neuropsychologists and sleep specialists now involved.
     Someone asked a better question than the one I came up with about CBD oil, so it's okay with me that mine was overlooked. I mentioned the F-word on my card (Fycompa) and its black box warning, something a non-epileptic reporter would have only done in a more open forum.
     The CBD question asked whether someone whose epilepsy is being controlled by meds could benefit from its use. I wanted to raise my hand and say, "That's me," but didn't.
     The pediatrician responded by citing a study that claimed people who smoke marijuana habitually become stupid over the course of their lifetimes. I wanted to interrupt and ask what study, where it was published and whether there were any meta-analyses on the same topic.
     I also wanted to ask why he was talking about smoking marijuana to a crowd of people with epilepsy who want to know whether CBD oil can help with seizures and related symptoms.
     And yet another question right at the end of my chocolate mint-coated tongue is how many studies have been done to determine whether  Phenobarbitol, Depakote, Keppra, Topamax, Tegretol, Trileptal, Lamictal, Dilantin, Klonapin or Fycompa make people stupider over the course of a lifetime. (Remember, I have been taking a drug that could've made me fat and "mentally slower" for most of my adult life.)
     He said CBD must be used at a high concentration to be effective in controlling epilepsy, and there are too few studies to know whether it is safe or not at such levels (as opposed to Fycompa, with its very limited but scary human studies and tendency to make rats and monkeys do weird enough things to earn it a Black Box Warning from the FDA.)
     "So, the answer is no, for someone whose seizures are controlled by other meds," he said before explaining that laser surgery and other new procedures are continuing to provide better options than ripping someone's hippocampus out to prevent further seizures.
     Someone asked a question about women and epilepsy, so the female took over to discuss connections to hormones and periods and such. I decided to take a break at that point and stand beside another cherry blossom tree, where I could suck down a cigarette, my own quick fix and the easiest "bad" drug to purchase anywhere on the planet.
     My mother and I figured out long ago, before we even made our first visit to the general practitioner's office in 1980-something that there was no connection between my seizures and periods, so I simply listened from afar.
     I sat back down next to a little girl with a painted face who was playing with a mermaid doll. A couple of months ago, it would have been dangerous to let my mind wander back in time to my own mermaid doll, Shelly Sea Wee.
Shelly
     Doing so could have sent my brain on a trip into the past that it didn't want to return from, but it was safe to do it today. I thought back to how I liked to pretend to be a mermaid when I was a little girl, swimming underwater like my Aunt Gaylene taught me to do at the city pool.
     When those mermaid dolls came out, I was a bit old for them but insisted on having the one with brown hair, which was harder to find than Sandy, the blonde, who starred in the T.V. commercials.
     Remembering how the mermaid friends played underwater with their seahorses caused me to realize the irony of a little girl with real horses in her back yard pretending to be under the sea with Shelly and her fishy ones.
     The Depakoted, grown-up me started paying attention when the pediatrician began to talk about
temporal lobe epilepsy versus "every other kind" of epilepsy. It came up often when he talked about surgery and isolating which parts of the brain need to be zapped with lasers or obliterated completely.
     When he described the hippocampus as being shaped like a hot dog, I stopped considering him to be such an epilepsy expert. My research online verified the description Dr. S gave me last summer of the hippocampus as indeed being very similar to a seahorse in its shape.
     If I had a broken hot dog in my head, I would be walking around with an Oscar Mayer wiener necklace and not a silver seahorse.
     The female expert was my favorite of the three because she talked about auras and how not all seizures can be detected on EEGs. She told about listening to patients describe bubbles rising in their stomachs, panic or funny smells, and that tells her what part of the brain the seizures are coming from.
     That's what my best neurologists have done. They simply ask me how it feels when I know a seizure is about to happen and keep listening until I reach the point of saying the seizure itself feels like something that is too intense to adequately describe in words.
     The other expert didn't get as much time to talk but had some interesting numbers to offer, which was the only moment I reached for my purple pen and diary/journal/reporter's notebook. Names and numbers must be written down if I want to get them right.
      He emphasized the importance of genetics and knowing as much as you can about not only your seizure type but where the epilepsy originated in your family tree. According to him, the old way of thinking only attributed five percent of epilepsy cases to genetics but now doctors believe the actual piece of the pie is closer to 40 percent.
     "It's important to know your genetics so you can make the right medication choices," he said, adding that he expects the role of genetics will be considered even greater in three to five years and more so by the end of the next decade.
     The example he gave used my beloved Depakote and stuck in my mind with only purple scribbles for notes. He said Depakote can do great harm to people with a certain type of epilepsy but is given to children as the drug of choice for another. The answers can be found in one's genetic makeup.
     He also was the one who most encouraged everyone to try and participate in research studies, not only those of us desperate enough to try anything to improve our quality of life. That bit of information came at the very beginning, where it belonged, before people catching flights out of town or exhausted from walking had time to make an early exit.
     After the experts finished and left the stage, I headed toward them, like the reporter I am, always peeking behind the scenes for one last glimpse before the final curtain closes. I made my way to the female doctor and shook her hand, thanking her for taking the time to travel across the country to speak.
     I also asked her to continue her important work in educating women on how epilepsy can affect our lives, and she said, of course she would. Of the three, I hope that maybe I made a connection with the one who seemed most likely to listen.
     That's all any of us want, really. A doctor who knows what she's talking about but is willing to listen before offering advice or reaching for a prescription pad. When that happens, there is always the possibility than the experts might learn something from us for a change, perhaps even get a new perspective on what it's like to experience epilepsy from the inside.

Friday, April 15, 2016

Drift Away

     This is the song I was listening to when I wondered if I really am going to find anyone like me tomorrow among the crowd of people participating in the National Epilepsy Foundation's 10th Annual Walk.
     By that, I mean someone who would rather take drugs every day than be cured. It shouldn't be too hard to find other people with temporal lobe epilepsy/complex partial seizures.
     I was delighted this week to make yet another new Instagram friend, this one sounds like she could be my twin sister, separated at birth but living in Philly.
     Still, we didn't chat long enough to find out how good or bad her seizures may be compared to mine, how they make her feel..in her head.
     She wasn't born this way, as my doctors have suggested about me, based upon how mine suddenly appeared at the age of 16 with no traumatic brain injury or high fever beforehand.
     Also, I have at least one close relative who had seizures that are gone forever I hope, and my great-grandfather had a really funky brain. He could write his first name and his last name at the same time, holding one pencil in his left hand and another one in his right.
     Go ahead and spend a few hours trying to do that one. I'm guessing my trance-like seizure/spells come from his genes, but what do I know? I'm not a doctor, just the person who has been experiencing them since 1980-something.
     I could go look it up in one of the diaries I've kept since I was seven years old. One of my neurologists said my journal-writing habit is a symptom of the syndrome that may or may not exist.
     My own theory is that it's a skill learned long ago by someone whose short-term memory wasn't so great, perhaps someone who discovered she could communicate much better in writing than out loud, where people made fun of her when she became too emotional.
     The same thing happens with other children who can't communicate well out loud; they write it instead or find another way. I learned this when I was teaching children with autism. There was something wonderful inside them that I saw immediately and then spent my days trying to make sure everyone else could see it, too.
     If I find others with similar personality traits, we could have a grand old time, hassling the drug companies for their continued efforts to keep us under control. "Good luck with that!" we could say, but they will be the ones laughing all the way to the bank.
     I wasn't laughing as I listened to this song, knowing I will never get in line for a cure, unless my seizures become debilitating.
     That's because I can't imagine not being able to go to that wonderful place again, if I wanted. It's impossible to describe how it feels to go there unless you have been, too.
     It has to be what heaven is like, for those of us who believe it exists, a place beyond this world.
     I'm not sure why I was picked to be lucky enough to get a taste of it in this lifetime the way I have, but it's a much better place than here and now.
     Some drug trips are euphoric but they don't really take people "away" like my seizures take me when I have them.
     The proper word to describe them is "ecstatic," I know that, but it's very hard to find people who have epilepsy and feel a sense of bliss and magic from the experience. Maybe tomorrow, that will change. I'm going to try not to get my hopes up, though.
     It's hard enough to sleep at night already.

Charlotte's Web

     It was almost too easy to figure out, once I gave myself enough time to calm down and think straight. That's what special educators call "processing time." You allow the student to have a little bit more time to figure things out and catch up with her peers.
     Like I said before, the trip to D.C. was mostly for fun and to gather information. I knew before the guy handed me his card that there were legal ways to smoke marijuana there, but I hadn't realized there are actual dispensaries, like in Colorado.
     I made a trip to Denver for a meeting of other rebel educators in 2014, soon after it became legal. The medical dispensaries were located directly across from the recreational ones, neither in the best part of town.
     It's the only place I've traveled where I became aware of someone on the street, scoping out whether or not my purse contained something they wanted. My oldest son pointed it out to me, so we took precautions to make sure the two guys circling us like buzzards knew we were not something they wanted to taste.
     They quickly got the message and left us alone to figure our own way out of the mile-high city.
     There is a lot of confusion about medical marijuana for epilepsy. It has CBD oil and not the ingredients that get you high, so there really is no reason for people to freak out so much about it.
     Neither is there any reason to work hard to get it because the regular type of weed is much easier to purchase, anywhere in the United States. It's been like that since I was a teenager in the 1980s.
     So, anyone who figures out how to get CBD oil the way I did will be disappointed if getting high is the objective. It won't do the trick, and you will pay more money for it than for recreational weed, as you would for real medicine, with a prescription but no insurance.
     I've been following the recommended dosage on the bottle, three times a day, to see if it helps with my persistent insomnia or anything else that my Depakote might be missing. There are no immediate results when the drops are in me and have had time to digest.
     It isn't like taking a benzodiazepine, where the relaxing effect washes over fairly quickly, nor does it make me sleepy, like Trazodone or Benadryl. Because it comes in the form of oily drops, I can taste the mint chocolate on my lips later, a little reminder that something else may be helping out in a more natural way than the chemicals already circulating in my system.
     I looked at an Instagram follower for help on my quest for which type to try. She's one one of my new friends, a person I will probably never meet in person, who  manages her seizures by taking CBD oil and following a strict ketogenic diet.
     Although we have corresponded via Instagram, I didn't even need to do that. She has a post that shows which brand she uses. The rest was so easy, it was hard for me to believe I would actually be able to do it until I held the bottle in my hand.
     I started following her after my favorite neurologist, Dr. S, recommended I go on the ketogenic diet last summer. "Stop that late-night snacking on Goldfish crackers!" he said, in an accent I had not heard before but will never forget.
     Doctors usually have very little time for giving extra directions, but I have a note in one of my diaries from last summer in which he wrote how I was to take my new medicine, Lamictal. At the bottom, it says to eat four tablespoons of coconut oil every day.
     Because I had so much faith in the new medicine he was prescribing last July, I never thought to ask about CBD oil. The possibility of having to do something like that was for desperate people, not people like me with mild seizures that responded to aniconvulsants.
     As you know, I became one of those desperate people when I realized in December that Lamictal was doing nothing to slow down my brain. Ironically, it was that moment when I became epileptic enough to have CBD oil in Virginia and not get prosecuted.
     Now that it's in my kitchen, I don't expect to hear a knock at my door from someone in uniform, demanding answers. It would be kinda silly at this point anyway, don't you think?

Sunday, April 10, 2016

Field Tripping

     Last week, after I gave my speech and before the giant doobie was reinflated in front of The White House, someone came up to me and slipped a business card into my hand. He said, "These people might be able to help you."
     When I looked down, I wasn't surprised to see it was from a medicinal marijuana dispensary in D.C.
     As I have said before, CBD oil or some form of medicinal marijuana will be my next step if the Depakote Sprinkles stop working. I don't want to try the anticonvulsant that can make me angry/angrier nor do I want to try the one that can cause kidney stones...or any of the others.
     Instead, I will stick with my beloved Depakote, the one that can cause liver damage but hasn't yet and possibly thinning hair, but hasn't done that yet, either...after more than 26 years in my system. The sprinkle formula is still working, but I need something extra to help me sleep at night, just as I have for years.
     My brain just keeps going and going, like the rabbit in that battery commercial, even when my body is exhausted and doesn't want to even climb the stairs to my bedroom.
     The anxiety is still there, but I'm relying on tobacco for relief, as I have for three years now, which concerns both medical doctors and therapists much less than the possibility of me taking Klonopin on a regular basis.
     Benzodiazepines are a bigger threat to my health than smoking cigarettes. Someone should probably tell the Surgeon General to ease up with that warning label.
     After breaking up with my therapist on Friday, I pulled out the business card and took a closer look. Stapled to it was a white piece of paper with an address on it for a surgery clinic, a doctor's name and a phone number. The paper said not to go to a certain wellness clinic because it is "way overpriced," and I would regret my decision in the long-run.
     It also promised a free gram for first-time patients, any house strain.
     A Google search gave me information on how to get almost to the surgery clinic from the nearest Metro station, but I called the number to make sure. The woman who answered the phone explained that it was within walking distance but suggested taking a bus from the Metro.
     "I can't believe I'm actually going somewhere with a big bud of reefer on its business card," I commented to my husband, who didn't get what I was even talking about until I showed him the actual picture.
     When I gave him the address of the surgery clinic, he said, "That's not in the best part of town. How about if I drive you tomorrow?"
     I explained it was mostly a fact-finding mission I was about to embark on, to relieve the stress of dumping yet another therapist. Then, I added,  "I'm not sure someone who works at the Pentagon should be seen hanging out around a medical marijuana dispensary."
     That's when Tommy offered to be my chauffeur. As we headed out the door, I told Ron I didn't think I was even eligible for medicinal marijuana from a clinic in D.C. because we live in Virginia.
     Still, I gathered up some of my medical records in case I needed to prove to someone that I actually do have epilepsy.
     According to the dispensary's website, D.C. is one of a few places in the United States that allows  medical marijuana to be recommended for any condition or ailment a physician deems fit.
     In Virginia, the laws are a bit trickier. Epilepsy is the only condition that can be treated with medicinal marijuana, but there are no dispensaries. There's a form for people like me so we won't be punished if caught with medicinal MJ.
     As I noted in previous posts, my neurologists work for Uncle Sam and cannot even discuss medicinal marijuana with me nor fill out the form that would keep me from being punished. The room goes ominously silent if I bring up the subject; I might as well be asking for a needle and a spoon.
     Our venture was unsuccessful in terms of even getting through the first door, but it was gloriously stress-relieving. The not-so-great part of town wasn't bad at all. There were houses, older ones with small but nice yards.
     It was nothing like the time I got off  a Metro station in a different part of town and saw a guy peeing at the top of the escalator, in broad daylight. (Even then, the people were nice, and nobody tried to hurt or threaten me in any way.)
     The most obvious way to tell we were out of the touristy part of town was being able to find a parking spot at the clinic. When we took the elevator up, the door was locked, so I called the number and talked to the same woman who gave me directions.
     That's when she told me they were closed and only saw medical marijuana patients on Mondays and Thursdays, between 10:30 a.m. and 2 p.m. "You didn't tell me you were coming today," she said, in that tone of voice, the one that could get her hired as a school secretary on the spot.
     I told her I had epilepsy and could she please repeat the days and times for me to write them down, then hung up and said some bad words, apologizing to the woman sitting next to me, who didn't seem to notice.
     Tommy and I decided to check out the dispensary anyway, even though you cannot enter one without first presenting a medical marijuana card. Ironically, it was located much closer to the part of town where there is never parking and plenty of cherry blossoms mingling with the tourists.
     When we couldn't find a parking space anywhere near the address of the dispensary, we decided to put the top down on the Mustang and call the trip a bust. It was such a beautiful day and becoming obvious that I was not going to get any information about medicinal marijuana in D.C. that day, at least not in person.
      By that time, it didn't matter any longer because I had already come up with a better idea, one I'm not going to share quite yet. To find out what it is, you'll just hafta keep reading, won't you?
     I haven't taken any more of those Klonopin, by the way, not since walking out of my therapist's office. Guess I wasn't so addicted to them after all.
   

Saturday, April 9, 2016

Another One Bites the Dust

     If I was still on Fycompa, I would probably have stayed up all night writing about yesterday because there was so much action. Luckily, I'm not, so instead you'll be getting the Depakoted version.
     It started with another break-up, and I'm glad my husband was there to see it and once again agree with my decision that my old/new therapist is not the right one to help me deal with this trip I've been on for almost a year now.
     We both realized there was no counseling/therapy to come from that office, although my referral from TriCare covers plenty of that. Instead, she wanted to try me on something new, or so she thought it was. Her decision was based on the results of a Q-tip swap they did in my mouth on my last visit plus her impression that I seemed depressed.
     "Have you ever tried Lamictal?" she asked.
     "Yes," I told her. "It's the first drug my neurologist put me on last summer, and I took it until December." It didn't work to control the seizures, and I didn't like the way it made me feel, I said. Every time I was in a social situation, I started to sweat and wanted to peel off a layer of clothes.
      So, I do not want to try that drug again. Plus, I'm not adding another anticonvulsant now that my seizures are finally under control again with Depakote.
     "But it's also a mood regulator, a great drug for depression, and this would be at a different dosage," she persisted.
     Again, I said no. I told her I have a cabinet full of it at home and might use it for an art project because the pills are so colorful. We decided to call Ron in from the lobby, so he could join in the fun.
     She complained that my neurologist's office hadn't responded to her yet, and we wasted at least five minutes of "therapy time" giving her my doctor's exact name and explaining we didn't have the number memorized and would hafta Google it, same as her.
     At one point, she said, "You claim they prescribed Lamictal last fall..." and that's when my trust for her went out the window. I don't lie to my healthcare providers.
     She asked how often I was taking the Klonopin, and I told her only once or twice a day. Now that the Fycompa experience is fading from my mind, I'm less angry but realize it's time to take it when I'm so mad I yell at things (usually appliances) and my dog hides in her cage.
     For the billionth time in my life, I received the Benzo lecture, about how horrible those drugs are because people end up taking them every day rather than as needed. The recommendation is always a newer, "safer" drug that must be taken every day.
     None of it makes sense to me, a 48-year-old woman who has taken anticonvulsants and arthritis medicine twice daily since she was 22, except during the early pregnant and trying-to-get-pregnant months.
      The clincher though, and there is one when I make the decision for a final break-up, one in which I never look back again and say, good riddance, came when she asked, "And who prescribed the Klonopin?'
     I'm so glad Ron was in the room to witness this, to see what I go through in search of finding my way back to being "happy wife" again.
     "You did," I reminded her, pulling the bottle out of my purse.
     It had been exactly two weeks since we sat in that same office and she wrote the prescription. "We'll contact you after I talk to your neurologist for your follow-up appointment," she said.
      I was already out the door.
      It was time for a field trip to D.C.

Sunday, April 3, 2016

Fyodor, politics and Simba

I feel entirely in harmony with myself and the whole world, and this feeling is so strong and so delightful that for a few seconds of such bliss one would gladly give up 10 years of one's life, if not one's whole life. --Fyodor Dostoevsky








     

     By this point in any Presidential election year, it's almost painful for me to watch the news. This election is the ugliest one I've witnessed in my lifetime.
     The negative campaign ads will reach their peak in late October, when I won't even be able to go out shopping or to the bank or the doctor's office without seeing and hearing nasty accusations candidates will be throwing at one another.
     In my own personal opinion, there is one king of nasty in this year's election, and I'm not going to mention his name because he feeds on attention, like all bullies. The funny thing is, when I was actively seizing almost every day, he annoyed me as much as usual before I had a seizure.
     However, after experiencing one of my little "trips to the other side," I could watch him rant and rave without seeing anything but an over-sized boy, having public temper-tantrums because he doesn't want to share the toys in his sandbox.
     My theory is that whatever happens inside my head during my seizures takes me to a place where no one is a bully. The best comparison I have been able to come up with is from a movie my son, Jimi, insisted we watch over and over again, all those years ago in Okinawa.
     After experiencing a seizure, I get that Lion King feeling, the way Simba must have felt at the end of the movie, when he already climbed that mountain in the darkness, let out his roar and watched the clouds break up over his head. The sun shines through and everything is connected.

    You may not understand this post; I'm not sure it makes much sense and is probably a "rough draft" that will need to be edited and re-edited.
     But I do think at least one person would understand it, my beloved Fyodor. I hope he is watching from the other side, wherever it is, and smiling...or laughing, either one would make me smile, too. In fact, I already am.

Saturday, April 2, 2016

Hanging with the Marijuana Activists in front of The White House

Cutest activist in the crowd
     This is the speech I gave today at the Emergency National Mobilization to Deshedule Cannabis, an event organized by Adam Eidinger. When I read about this act of civil disobedience in The Washington Post, I contacted Adam and offered to speak as someone with epilepsy, even though I am a much better writer than public speaker.
      My hands and voice get all shaky, and I hafta read straight from the words so carefully written and rewritten. It was quite an experience, and I'm glad I went.
     Here it is:

Take a very close look at me because I am a Freak, even among my own kind. I want a cure for others with my disease but not for me. All I want is control, on my terms. No brain surgery; no more scary new drugs.
Ecstatic Fyodor
I have Epilepsy, but not convulsions. I stare into space and sometimes walk around. My seizures are NOT painful at all, but rather mystical, like dreaming with my eyes open and traveling to a place that is beyond Heaven. Famous people who also had this type of seizures include this man, who is described as having Ecstatic Epilepsy, and this one.
Angry Vincent 
Although I’ve had hundreds of seizures since my first one in the early1980s, I’ve lost consciousness only about 20 times. There have been two car crashes, the most recent was last June, when my miracle drug of 26 years stopped working and I hit a guardrail on 95 South.
I was hopeful when my doctor prescribed a new drug, sure there were better ones for controlling my disease by now. This particular drug came with a warning about a rash that could make my skin fall off…on my face. I took it for a couple of months, but it didn’t control the seizures nor the insomnia that goes hand-in-hand with epilepsy. Doctors say I probably have seizures in my sleep without realizing it, yet another reason to keep me medicated, 24/7.
Besides insomnia, epileptics also must deal with anxiety, mood swings and problems with concentration and short-term memory. This means that in addition to anticonvulsants, we have medicine cabinets filled with sleeping pills, antidepressants, benzodiazepines, and stimulants, prescribed by behaviorists with limited knowledge of how epilepsy affects the brain.
When brain surgery was mentioned as an option after the new med didn’t work, I walked out on my doctor in early December and went around seizing up to three times a day for two months.
I went to an epileptologist next, ready to try the next new pill because I was beginning to feel like a zombie.
None of the drugs available for epilepsy are pretty, but I just survived one of the dirtiest, most expensive ones on the market. It was approved just three years ago and has a black box warning for life-threatening psychiatric reactions, including aggression, hostility, irritability, paranoia, suicidal behavior and….here’s the real kicker…Homicidal ideation.
Please get a clue, DEA
The company marketing the new drug became impatient when the DEA took “too much time” in deciding how to classify it and filed a lawsuit to speed things up. Their complaint was the millions of dollars being lost for every month doctors in the United States could not yet prescribe the drug to people like me.
So, the DEA slapped a Schedule III controlled substance label on it, comparing the abuse potential to that of Ketamine. Part of their reasoning for taking so long was having so few human studies to analyze.
I took the first dose on February 8 and admitted myself to Walter Reed Medical Center 22 days later in a state of extreme mania, with paranoid delusions. My behavior was scaring my family, and they didn’t even know the crazy thoughts going through my head, gaining speed with every passing moment.
Never in the past had I experienced those symptoms, not while sober nor under the influence of any drug, legal or illegal. And, by the way, it still didn’t control my seizures.
I was released after two nights and three days in which my doctors forced me to go cold turkey off the drug while being confined to a small room with EEG wires attached to my head. Someone was with me at all times, watching, and the EEG monitor had a video camera running the entire time. The bathroom door wouldn’t close all the way due to the wires. I couldn’t bathe nor could I have any medication to relieve the severe anxiety I experienced, nothing to help me sleep.
To someone already experiencing paranoid delusions, I felt like they were hurting me on purpose, punishing me for the crime of being me.
Ironically, there was another alternative available the entire time, a more easily digestible formula of my beloved Depakote. I’ve been seizure-free for almost a month but still take something to help me stay asleep at night and now, a benzodiazepine to relieve the anxiety from being put through hell by people who take a vow to Do No Harm.
Trust me when I say, they DID.
The reason I’m here is to let you know epileptics are all around you, and pharmacy companies make billions of dollars off the medicines that treat our disease and the many symptoms that go with it. To most of you, we are invisible, because having epilepsy isn’t a secret you share unless absolutely necessary.
I don’t know if CBD oil could control my seizures, but it will be my next step if Depakote Sprinkles stop working. I qualify for the exception allowed in the state of Virginia because so many drugs have failed me.
For now, I’ll go home to Springfield and hope to remain seizure-free for another five months so I can get my driver's license back.
The way our federal government and the DEA are handling medical marijuana is beyond ignorant. In my opinion, it’s criminal, and the connection to pharmacy companies and big business is pathetically obvious.
One more thing before I say goodbye. Please remember, I went through this entire ordeal over a condition that doesn’t even hurt me when it happens.
To be totally honest with you, my seizures make me feel incredibly…high.