128 posts in the category “Epilepsy”

In her own words: Letitia shares about her new brain for Epilepsy Awareness Month

Posted November 16th, 2016 by

Have you met Letitia (Letitia81) from the epilepsy community? Four years ago, her research on PatientsLikeMe led her to the brain surgery that forever changed her life — she’s now seizure-free after three decades.

Things are much different now for Letitia, and she’s written all about her before and after in a recent article for WBUR (Boston’s NPR news). And as it’s National Epilepsy Awareness Month, we’re passing along her firsthand account of her new normal below. Check it out.

After 3 Decades of Seizures, Life with My New Brain

By Letitia Browne-James

I was 31 when I began to think with my new brain.

I’d been diagnosed with epilepsy when I was 11 and struggled with forgetfulness, interruptions in my thoughts and a lack of focus my entire life. I didn’t know that these were classic signs of brain fog, a symptom of epilepsy. I knew that my classmates seemed to grasp math and history more quickly than I did. Sometimes, I felt like I couldn’t understand things completely, no matter how many times I read or listened to my teachers’ explanations. It was a terrible feeling.

I had seizures, too, and they worsened as I grew older, appearing more frequently, always without warning. I had them at church, in class, at work, parties, weddings and while walking around the lake in my neighborhood. I often injured myself during these episodes. About four years ago, my doctor suggested that I would be an excellent candidate for brain surgery to treat my epilepsy. In August 2012, a surgeon removed a piece of my left temporal lobe the size of a sugar cube.

I didn’t know I had brain fog until it disappeared. Then I began to discover what I could do.

I was an infant when I had my first seizure, according to my parents. I had been hospitalized for asthma. After that medical crisis, life was normal until my parents noticed that sometimes I stared into space, didn’t respond verbally, and occasionally drooled. This behavior became more frequent when I was about 10. At 11, I was diagnosed with grand mal seizures and I started taking epilepsy medicine. It did not control the seizures, even when my neurologists increased the dosage and switched me to other anti-epileptic drugs such as Tegretol and phenobarbital — I had allergic reactions to both — and Dilantin.

In college, I still struggled academically and physically because of the seizures. I fell and hurt myself, bit my tongue and other parts of my mouth. I have permanent marks from injuries, including a chipped front tooth from a fall. The aftereffects lasted for days or weeks. I sometimes needed to sleep for a day and a half to recuperate. These side effects, combined with the rigor of college courses, proved challenging. I was also hospitalized several times, missed many days of classes, and was not always fully alert in school. But I have always been a fighter who succeeds in spite of obstacles. My academic performance improved during the last two years of college and my professors introduced me to scholarly research. Earning a doctorate became my long-term goal. I graduated with a bachelor’s of science in psychology with a B average.

Two years after college, I took the Graduate Record Examination because I planned to complete a master’s degree in counseling. I struggled mentally and physically while preparing for — and taking — the test, and earned low GRE scores. Still, I received contingency acceptance into a top graduate program. I had to pass my first-semester classes to end my contingency status. I not only passed, but had a 4.0 GPA by the end of that semester. I was ecstatic. But the challenges of living with epilepsy continued throughout graduate school. The seizures were becoming more violent and frequent, even though I took my medication regularly. I was desperate to control them.

Throughout my childhood, my MRI and electroencephalogram, or EEG, exams indicated that the seizures occurred in the left temporal lobe of my brain. But in my early 20s, they stopped appearing on those tests. I later learned that I had developed refractory epilepsy, a type of epilepsy that is particularly hard to diagnose and treat. Unless the patient has a seizure during an exam, test results and brain anatomy appear normal. In my professional training, I learned a lot about somatoform disorders: physical symptoms that mimic illnesses such as seizures, heart attacks, strokes but do not have physical explanations. I wondered if my seizures were psychosomatic.

 

“Since my surgery, I’ve started experiencing mental, spiritual, emotional and physical clarity unlike any I’d ever known.”

 

I found a compassionate psychiatrist; she was very personable, patient-centered and a Christian like me. After a few visits, she said, “I cannot explain what is happening neurologically, but I can tell you that those seizures are not psychosomatic.” She noticed that my seizures were causing me great anxiety and prescribed Xanax. She was right. I constantly feared having a seizure. Everyone around me was supportive, but I felt embarrassed, upset and anxious. The Xanax lessened my anxiety, and I am grateful to my former psychiatrist for her help.

I encouraged my counseling clients to become informed patients and play an active role in health care for themselves and their loved ones. I did the same. I researched my condition and found a website called PatientsLikeMe. I read the stories of other people with epilepsy. I learned about other tests and treatments — including brain surgery — that helped patients with epilepsy find relief or cure from seizures. I learned about “patient-centeredness” — working with health care professionals who truly value their patients’ input about their care and help them choose the treatment options that are right for them.

On PatientsLikeMe, I learned about both the 72-hour EEG and epileptologists, neurologists who specialize in epilepsy that is hard to diagnose and treat. None of my neurologists had mentioned this specialized doctor. I made an appointment immediately to see an epileptologist, and that was when my life started to change.

My new doctor ordered a five-day inpatient EEG on the epilepsy monitoring unit in a local hospital, where he and his team induced seizures while a machine recorded the activity in my brain to see precisely where the seizures originated. The epileptologist and his team determined that I could benefit from brain surgery. At the hospital where I would have the operation, I underwent a series of pre-surgical tests and passed them all. I began to count down to my surgery date. I was so excited by the prospect of ending my seizures that my pastor later said, “Letitia was acting like she was going to Disney World or something.”

Research has shown that epilepsy surgery is relatively safe. Most patients no longer have seizures afterwards. Pre-op testing can predict how patients will fare. Temporal resections — where the piece of the brain’s temporal lobe that is causing the seizures is removed — are the most common type of epilepsy surgeries.

I had a left temporal lobectomy on Aug. 16, 2012. My surgeon removed the small part of my brain through a tiny incision. My operation was very successful. I haven’t had a seizure since, and my doctors don’t expect me to have another seizure ever again. After my surgery, I had a severe headache for about a month as my brain and head healed. I felt like I had been hit in the head with a hammer. I had to spend most of that time in bed because of the pain and sleepiness from the pain meds.

I am still getting to know myself post-epilepsy. Not only is my brain free from the misfiring electricity that caused seizures, but my mind and body are free from the long-term effects of anti-epileptic medications.

Since my surgery, I’ve started experiencing mental, spiritual, emotional and physical clarity unlike any I’d ever known. That feeling became more apparent when I went back to school two years ago to pursue my doctorate in counselor education and supervision. For the first time in my academic life, I can learn and study without the fuzziness of brain fog and the challenges of epilepsy and medications. I can read and understand material much faster and with greater depth than before. I am maintaining a 3.9 GPA in my doctoral program and expect to finish in 2018.

I share my story openly and frequently, not just with epilepsy patients and their loved ones, but with all patients. I have learned that some of the physical, emotional and mental agony that I faced with seizures occurs across diseases. In particular, many patients suffer from brain fog and the adverse effects of medicine. Unfortunately, some, like me, may not know if what they are experiencing is specific to the disease — or what their lives could be like without illness or medication.

I told my story to the family of a young girl who also suffered from epilepsy. She and her family eventually decided to seek brain surgery. (She required three operations.) She’s now a seizure-free teenager. Mostly importantly, she is living without seizures at a much younger age than I did.

When I was a child, my parents didn’t let me ride my bike for a few weeks after I had a seizure. As an adult, I didn’t ride much. I had to give up driving when my seizures became more frequent. Now I drive again and I bike regularly for fun and exercise. I’m very grateful for my new brain.

 

Share this post on Twitter and help spread the word.


PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375