34 posts tagged “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.

 

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“I am working on all of it slowly” — Member David opens up about his experience with PTS

Posted April 13th, 2016 by

Meet member David (david61060), a United States Air Force veteran who’s living with multiple conditions including PTS, sleep apnea, and epilepsy. When we caught up with him, David shared what it was like to grow up as a “navy brat,” his experience in the military, and how It took him more than nine years to admit to himself that he had PTS.

Below, see what he has to say about triggers, coping with more than one condition, and the value of connecting with others on PatientsLikeMe.

Tell us a little about yourself.

To tell you about myself … well I was a navy brat and grew up mostly around just military kids and people connected with the military, every 3 to 4 years moving to a new base. Except in the 70s we stayed in the Republic of Panama for 6 years, leaving there in 1976. I was 16 — that was the hardest move. First year of high school … leaving behind a lot of friends that I knew I would never see again. Moving to California and graduating high school, I went into the Air Force. In my 15 years I saw a lot and did a lot but my last tour was the worst: Desert Shield and Desert Storm.

I came home with so many problems – depression, seizures, nightmares, waking up in a different room than where I went to sleep … then the divorce and losing the house. The car we had broke down and I had to walk or take the bus to the base (fortunately we did not live far from the base).

Most of the military doctors at Kelly Air Force Base did not seem very sympathetic to my problems including weight gain because of the drugs … blackouts at work THEN the notification that I was being discharged because of my weight gain. The next thing I knew I was in a true padded cell with the bed bolted to the floor.

If not for my older brother (a fighter pilot in the USAF) and my father (a retired USN Officer) stepping in and having multiple conferences, I would have been discharged with out a hope of help from the VA or the US government.

You wrote in a forum post, “Some people … did not want to even hear or listen to me.” How did you find the courage to open up about your PTS?

Opening up about my disorders — PTS and my seizures — I was originally very quiet about my problems. I do not even know if my parents who I lived with even knew. An assistant at the VA in Martinez, CA recommended that I go to a meeting at the mental health unit, and I did. I met one of the best doctors I have known, Dr. Kotun.  She recommended that I go into one-on-one therapy, so I did.

It took me more than nine years to admit to not only myself but to my therapist that I was suffering from PTS.

In your profile, you list epilepsy, depression, and sleep apnea as some of the other conditions you live with. How has it been managing these in addition to PTS?

Managing and just attempting to live with them are not really that different. Being sure that I take my pills three times a day is a real trial for me. In the morning there are 12 pills (including vitamins and other OTC pills). Getting my sleep is and can be the hardest part. Sometimes the nightmares and the sweats can be the hardest part of the day. Putting the mask on for the sleep apnea at times seems like putting on that gas mask … just dozing off and I hear a car horn that sounds like the warning siren. The mask suddenly feels constricting … I end up awake for hours afraid to have to put it back on. Usually I do not until the next night.

As I said before I think living with all I have can be really trying for me and my new wife but I have to go on — I have to — the other choice is not an option.

Some people have shared their PTS “triggers.” Do you know your triggers, or do symptoms happen unexpectedly?

My triggers for my PTS seem to happen when anything military is close— the helicopters flying overhead. Hearing munitions going off, and sometimes it could just be a memory that that was triggered — walking in a park and we come to a fence line and the area suddenly looks like the area close to one of the bases I was at, then a car backfires and I drop to the ground and reach for my weapon. In the long run it can be embarrassing to react like that in public. This had stopped me from even going out the park or into the city but I am working on all of it slowly.

And then there are times that I just have that feeling for no reason and the fear comes over me again like a wave. It makes no sense.

What has it been like connecting with other vets on PatientsLikeMe?

Connecting with others and talking to others about my problems and seeing theirs has been a remarkable window to work with … to realize that if we all open up we could help each other. Being that there are others on the site that are not veterans but have a lot of the same problems has been very helpful to me, and I hope to others that I have written to as well.

 

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