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Pam Zich Epilepsy Advocate

How I met Pam Zich

Like many other fellow epilepsy advocates, I met Pam via my blog. This is why MyGlitch has been great for me. It has provided me with connections to many I would have never met. Pam was willing to share her personal journey to spread epilepsy awareness.

Like so many others it took years to be diagnosed correctly and for her even wanting to admit she had epilepsy. Please take time to read in Pam's own words on her journey starting at the age of 16, through marriage, having kids until present. I am happy to report she has been seizure free for four months now. That's something to celebrate!!

You can go follow Pam on Twitter @RebelSpeducator Thank you Pam for sharing.

My first seizure occurred when I was out for my daily run at the age of 16. Just as I returned to my driveway, I was overcome with a feeling that stopped me in my tracks and caused me to walk the rest of the way. I immediately told my mother because it felt medical bult like nothing I had experienced before. This continued to happen several times a month, so we went to our doctor. He checked my blood sugar and iron levels but didn't find anything wrong. For the next five and a half years, my "spells," as we began to call them, were a mystery the two of us tried to figure out.

I kept track of them on my calendars and could find no connection to my periods, eating/drinking habits, exercise even phases of the moon. Typically, I had three to five every month. I began studying psychology in addition to my declared major of journalism because I was convinced that I must be headed for some type of mental breakdown. However, my "spells" didn't fit the description of any disorder in the latest diagnostic manual, DSM-III. Only my immediate family and friends knew about my bizarre "spells." If I happened to be driving, I would alert the passengers. Sometimes, I pulled over to the side of the road if I had a particularly intense "spell." I remained aware of my environment and the traffic around me and was able to tell if the light had change color.

It wasn't until 1989, the summer after I graduated from college, that I found out my "spells" are a form of epilepsy then known as complex partial seizures. My older sister figured it out when she was in medical school. The MRI and EEG tests were normal, but my deja vu followed by staring and a surreal feeling convinced the neurologist at Duke my big sis was correct. He prescribed Tegretol, and the seizures immediately stopped. Unfortunately, I had a serious reaction to the drug; that's when Depakote gave me the freedom to live seizure-free for the next 26 years, except when I stopped it to have children.

The next year, I married a Marine named Ron and began the adventure of calling a new place home every few years. I worked as a reporter, copywriter, editor, columnist and even got my master's in special education and taught for a few years, rarely telling anyone about my condition unless it was necessary.

The first time that happened was when Ron and I decided it was time for a baby. I was warned about the risks of Depakote harming a developing fetus and the need for family planning by my first neurologist and many to follow. I kept my birth control pills beside my Depakote. At some point, folic acid supplements were added. I remember telling my coworkers about taking medicine for seizures and how I needed to stop before getting pregnant. Then, I did what I always do and assured them there was nothing to be afraid of, that I stare silently into space for several seconds and then return to normal. Even now with more severe symptoms, I feel the need to do this: explain that people shouldn't be afraid of me.

Being treated at various military hospitals means it is impossible to estimate how many neurologists have treated me, as either we were on the move, or they were. I'm sure most would say I'm an easy patient because they treated me when my seizures were under control. Even when pregnant with my oldest son, Jimi, and having seizures soon after stopping the Depakote, everything went smoothly.

That changed in 1995 when we were living in Okinawa, and I was four months pregnant with my middle son. For the first time ever, I completely lost consciousness during a seizure and drove into a house with Jimi in his car seat in the back. The ambulance was already there by the time I came to. Jimi was fine and chatting with the paramedics. But what about the baby inside me? Ron and I didn't know the answer to that until a thorough examination, complete with ultrasound, showed no injuries to the baby we had already named Tommy. The neurologist thought I was insane when I refused to restart Depakote at that point. He ordered a psych evaluation, which showed that I was competent to make my own decisions. I can be quite stubborn and have read in my medical records what the doctors think of such behavior.

One big rule change occurred from that moment forward; if my seizures aren't controlled, I can't have a driver's license.

It took a fall in my kitchen the following month to convince me it was time to take the neurologist's advice. One minute I was getting something from the refrigerator, and the next I was on the floor looking up at Jimi as he pleaded with me to get up.

When I was pregnant with my third and final baby boy, I was less afraid to restart my medication because Tommy was healthy. We lived in San Antonio then, with an obstetrician for high-risk pregnancies following my progress. I woke up halfway into my fifth month having my first nocturnal seizure. This new form of seizure was enough for me to decide to restart my medicine. I was spending my days trying to keep up with Jimi and Tommy and did not want to relive the experience of totally losing consciousness, risking the safety of all three of my sons. Any change in the way my seizures present themselves is frightening after so many years of the same, brief staring "spells." Baby Ronnie was born in January of 1999, healthy like his two older brothers.

After restarting Depakote in 1998, I was seizure-free and thought little about my condition. If epilepsy happened to come up in conversation, I explained that mine was under control by taking medicine. Then, I had my first breakthrough seizure in December of 2013 while coming down with the flu. I was running a fever and had driven Jimi home from having his wisdom teeth out when that familiar feeling hit, and I dropped to the floor. Again, the ambulance was already there by the time I regained consciousness after more than 20 minutes. I experienced the euphoria that often follows more intense seizures, and slowly recognized the grown man standing over me with the long curls was the same toddler from 20 years before. It took me a moment to find my place in time. Luckily, it was an isolated seizure, and I did not have to surrender my driver's license. By this time, we lived in Springfield, Virginia. My husband retired from the Marine Corps in 2011, and we remained there for many reasons until 2021.

My epilepsy remained something I rarely talked about until June of 2015. It was a term I wasn't even sure I should use to describe my condition, despite crashing into a house and having to take medication during two pregnancies. I didn't think I should use the word because I don't have convulsions, and my seizures don't even feel bad. I usually am aware of my surroundings while being pulled into another place that feels different, maybe even better than here. Often, my seizures are triggered by comforting memories from childhood or songs that were popular when I was very young. Luckily, I almost always have my deja vu aura that has saved me from injuries and from harming other people when driving.

My first seizure that June came out of nowhere. I was in my backyard, listening to Stevie Wonder, even though his voice sometimes gives me that weird "seizure feeling." I wasn't driving so didn't even think about it; the next thing I knew, my face was resting on the sidewalk with my dog licking me awake. Making the mistake of assuming it was another breakthrough seizure, I continued with life as usual.

Exactly one week later, I was driving to Richmond on Interstate 95-South to visit Jimi in college when I felt an aura coming on and fought to stay conscious with every bit of my being. But that's not how seizures work; they are always in control. Everything in my field of vision became distorted as my car headed for a guardrail. When I opened my eyes, I thought I was dead and the hand on my arm was that of my first-grade teacher, an angel returned to take me to heaven. She even had the right accent to match my hometown. I asked if I had hurt anyone, and she said no, that the other cars had somehow managed to avoid me without hitting each other. When an off-duty policeman stopped to help, she left and gave me her phone number. It also matched my hometown area code. As the policeman approached, I was able to say one word: seizure. He understood immediately and stayed with me while I called Ron, only leaving when the tow truck driver showed up. I felt guilty when I told Ron what happened and heard the worry in his voice. It's always that way when I tell him or my mother that the seizures are back. The rational part of me knows it isn't my fault, but I still feel like I'm letting them down. I was still in a confused, post-ictal state after being with the angelic woman who stopped to help and the policeman who stayed by my side even though it was his day off that I wasn't sure if I was alive or on my way to heaven. Then, the tow truck driver came, and I knew we were either back on earth or maybe in purgatory because he shared his hateful opinions with me the entire ride to Quantico. I was so happy to see Ron and return to reality again. The off-duty policeman had already told me to report my seizures to a neurologist as soon as my husband picked me up, and that's what I did. "Well, you know this means you won't be driving for at least six months," he said. My situation finally hit me, and I burst into tears.

When my seizures returned, I had no doubt it would be a temporary thing, as so many new drugs had been developed since I was prescribed Depakote in 1989. However, since my car wreck, I have only been seizure-free long enough to drive for three months, from October 2016 until January 2017. Here's the rest of the story.

The summer of 2015 was unbelievable in terms of how my seizures had worsened from earlier years. Many times, I completely lost consciousness, I had multiple seizures a day, and sometimes I threw up afterward. I still had my deja vu aura that warned me of what was coming but could not stop myself from staying in my safe place on the couch. Instead, I usually wandered around or went to look out the window. When I DID remain in one place, Ronnie said I looked like a zombie. I could now time and film my seizures using an App on my phone and was shocked to see that they lasted much longer than my "spells" from the early days. What felt like 30 seconds could be as long as five minutes; one was even seven minutes long. I stared into space, my eyes fixed, before slowly returning to reality by looking around at my surroundings. My memory was horrible in terms of walking upstairs and forgetting why I had gone up there, and I was constantly misplacing my phone. Sometimes, I forgot having a seizure earlier in the day until I noticed a minor bruise or broken fingernail from grabbing hold of something on my way down. A typical seizure from this time can be found on my YouTube channel’s Rebel Speducator (@RebelSpeducator) with the description, “Yes, this really is a Seizure.”

My neurologist increased my Depakote, but that didn't help. I was then placed on Lamictal, which only made me sweaty. For some reason, I delayed getting another appointment until December, when the new neurologist made the mistake of mentioning invasive techniques, such as VNS and RNS. I walked out without any new prescription; stubborn Pam had returned, as noted in my medical records. I didn't expect what the next couple of months had in store for me. With no antiseizure medication in my system, my timeclock was all out of synch. I woke up in the middle of the night and felt like it was noon, getting to know the red foxes, deer and other nocturnal creatures in our suburban neighborhood.

I scheduled an appointment with my first epileptologist, and he decided to try me on a brand-new drug, Fycompa. The black box warning made me a bit nervous, but I have been good in the past about realizing early when a drug is having negative effects on me. From what I read on the internet, this drug is currently helping many people, but it was not the drug for me. After a little over a month, I was voluntarily admitted to the hospital in what I assumed was a manic state. I did not want my husband and sons to see the symptoms I was desperately trying to hide as I experienced delusions, paranoia and a feeling that my thoughts were spinning faster and faster with every passing moment. I spoke to my big sister when I was in this state, and she later said it sounded like temporary psychosis. The only positive thing I can report from my stay is that the social worker who stayed by my side taught me some quite effective grounding techniques. Also, I now feel like I can better relate to people with serious mental health issues.

Upon returning home, I went back to my regular routine too soon and experienced my third ride in an ambulance. It began with visual hallucinations, then progressed to talking nonstop and a feeling of electricity traveling from my feet up through my head. This was like no seizure I had experienced before or since, so my son called 911 while Ron administered the emergency medication. Once the paramedics arrived, I was calmer but still having some hallucinations, as I thought one of them was my big sister. On the way to the hospital, another appeared to be Ron, and I started stroking his face. Then, I noticed they were looking at a clock and was convinced they were noting the time of death. The rest of the ride, I wondered what heaven would be like and how walking on streets of gold and floating around on clouds must be made up because it didn't sound like a heavenly way to spend eternity. I returned to earth again when the ambulance doors opened, and I recognized the familiar emergency room.

My epileptologist had put me back on Depakote Sprinkles before my release from Walter Reed. He also prescribed a limited supply of mild benzodiazepine for Ron to give me as my body adjusted to the change in medications. For several nights, I woke up having panic attacks until the benzodiazepine melted under my tongue. Depakote Sprinkles controlled my seizures for nine glorious months, and I was able to once again sleep at night and get behind the wheel of my Mustang after six. Then, in the midst of watching a rerun of Bewitched in January, I lost consciousness on the couch and had to break the news to Ron. He tried to hide the surprise and disappointment in his voice, but it was there. We both thought Depakote Sprinkles was the answer. I was frustrated and embarrassed by my Fycompa-induced behavior at Walter Reed, so I returned to the closer Army hospital, where a neurologist increased my dosage of Depakote Sprinkles. My seizure count for 2017 was 145.They were shorter with hardly any wandering, but that is a lot for me. In February, my doctor switched me to Keppra, but I couldn't tell any difference besides rapid weight loss and depression.

I decided it was time to return to my epileptologist, who didn't seem surprised at my return. He replaced Keppra with a similar drug, Briviact, that has fewer side-effects. The new drug brought my seizure count to 97 and then 89 the following year. Almost all were nocturnal, just before I woke up, when my drug level was at its lowest.

2020 was a stressful year for most people. Despite increasing my Briviact and adding Depakote Sprinkles into the mix, I had 135 seizures. My insomnia worsened, and my epileptologist moved to California. It was hard finding a civilian epileptologist in the midst of a pandemic, and neurologists had deemed me "too complicated" to treat. I sort of like that label despite the implications.

By spring of 2021, my insomnia was as out of control as my seizures. Then, something happened that doctors had tried unsuccessfully to do for years; my new epileptologist at Walter Reed captured two seizures during an inpatient EEG. Her report on which area of my brain the seizures occur says it matches my symptoms. She prescribed a third drug, Onfi, to control my seizures and help me sleep. Although my seizure count for that year was the highest recorded at 163, things were about to get much better.

We moved to North Carolina in August, and I began treatment at a Level 4 epilepsy center. It's located at Duke University, the place where my "spells" were first given a name.

At my first appointment, I told my epileptologist I want to keep pursuing drug therapy rather than invasive techniques. He said patients like me worry him because we don't take our condition seriously enough. He increased the Onfi and added a fourth drug, Vimpat. For the first time, he used the term, drug-resistant epilepsy to describe me and encouraged me to consider having more testing done so he could present my case at an upcoming epilepsy conference.

I declined at first but then changed my mind, which was a mistake.

It was more of a misunderstanding because I thought he wanted to do the tests for information purposes to share at the conference with other experts. Instead, he planned to only discuss the cases of patients who might be considered as good candidates for brain surgery. I agreed to have a PET scan, neuropsych exam and inpatient EEG but insisted they obtain the MRI images from 2021. I dreaded June as the EEG date approached and didn't realize until I was already hooked up to the wires that they wanted to capture several "events" before sending me home. I was there for almost a week, feeling less like myself with each passing day. It took two days to completely wean me off my meds. I became overtalkative, anxious and then unable to sleep for 48 hours. My right shoulder began twitching, but the nurses assured me it was from lack of sleep rather than seizure related. Sunday morning, Father's Day, is when everything got crazy. I decided to have pancakes, thinking the syrup might prompt the seizures needed to be released. Up to that point, I had only experienced one.

It worked, and I began having back-to-back seizures. Everything I thought about prompted a memory that would start another one. The doctor was paged but hadn't shown up after an hour. My aunt called Ron to give him an update; by the time he arrived, it had been almost two hours since the doctor was paged. I was stuttering as I talked during these seizures and can best describe them as feeling like Moses on the mountain in the presence of God. During one of them, I started to return to my normal self and then faded back out again. It lasted 11 minutes. The questions asked to see if I knew where I was or could name objects in the room were annoying, as I wanted to stay on the mountain and not come back down.

Ron had arrived by the time I had my final one that day, and I was scared by my lack of control and because I knew the dangers of back-to-back seizures. The doctor on call soon appeared. I later discovered Ron had visited the nurses' station upon arrival and reasoned with them in what I refer to as his "Marine voice." The doctor believed my final "event" was likely a panic attack and suggested I take Benadryl to calm me down. The nurse would bring more at bedtime so I could finally sleep. They still needed one more "event" before I could go home. Benadryl had been my favorite sleeping aid before I was placed on drugs that would make it dangerous for me. I was delighted to see the familiar pink pills and began singing The Sound of Silence to them, altering the words to celebrate our reunion. Every conversation and T.V. show had triggered seizures that day, so for the first time ever, I asked Ron NOT to change the channel when he turned it to golf. He spent the afternoon explaining the rules to me, and this new information combined with the Benadryl prevented further seizures. After some rest that night, I was told that one more seizure would be my ticket to freedom. My dear friend, Donna, delivered it to me when I called to explain why we didn't need her to sit with me that day. She started talking about what our old classmates were up to, and there I went. When that one was immediately followed by another, Ron asked for the doctor, reminding the nurses that my third one the day before was intense and lengthy. Within minutes, a new doctor appeared and asked if I was ready to go home. My medications were restarted, I went the required 24 hours without seizing, and we headed for home.

My seizure count for last year was down to 57, with many of those occurring during the inpatient EEG. At my next appointment, my epileptologist told me the doctors wanted to do more tests to locate exactly where my seizure activity occurs. This would require a longer hospital stay, unmedicated, with electrodes attached directly to my skull through small holes in my scalp. I politely declined, knowing someday it may be the best option, depending on how my brain behaves or misbehaves in the future.

For now, my doctor and I have agreed to disagree about my treatment. He has adjusted my meds to the point that I have only had 13 seizures this year and am currently four months seizure-free. By my next appointment, I hope to have made it beyond six months, and it will be his decision whether I'm ready to get behind the wheel again or not. Whatever he says, I will accept because he is the expert, and I want to live up to my promise when I tell people that I have epilepsy. There really is no reason to be afraid of me.

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