Imagine – you’re 15 years old and about to walk through the magical gates of Disneyland in beautiful California. Suddenly, you feel yourself start to lose consciousness amid a large group of fellow mouseketeers. Next thing you realize is your only ride for the day will be in your parents’ car, after you’ve received an explanation from a stranger that you may have just had a seizure. This is how Danielle Watkins, 28, came to discover she had epilepsy. “I had just received my driver’s permit, and then immediately lost it as well as my temporary privilege to drive. It was all just so embarrassing.”
Three years after her official diagnosis, Danielle moved from San Diego to Colorado. She eventually earned her driver’s license and attended Colorado University in Boulder. However, what seemed like a privilege regained, soon turned into a liability as Danielle’s seizures became more frequent, problematic and the cause for two scary car accidents. In one instance she ran into a light pole that fell on her car, but amazingly did not hurt her. On the other occasion, Danielle was driving home and smashed head-on into a barrier on I-25. Again, she was miraculously unharmed. Danielle describes it best, “I count my lucky stars and feel like I have a guardian angel watching over me.” After her second accident, Danielle’s husband, Nate, cajoled her into hanging up the car keys for good, as the two agreed that seizing and driving is a potentially deadly combination.
Condition and Medication
Danielle’s form of epilepsy is called Complex Partial with partial seizures. Recent tests reveal the seizures start in her right temporal lobe and slowly spread into the left lobe. She’s nervous this could one day lead to a grand mal – an unconscious collapse that sends a person (or animal) into convulsions.
Danielle experimented with a number of epilepsy drugs such as Keppra, Lyrica, Phenobarbital, Topamax, and Trileptal, all without positive benefits to her. Doctors have since diagnosed Danielle as drug-resistant. She even tried medical marijuana and felt no effects but paranoia. Aside from the minimal benefits of a ketogenic diet, nothing seemed to work, and thus doctors at the University of Colorado Hospital in Aurora (the Anschutz Campus) recommended surgery as a possible solution.
As a true introvert, Danielle often finds her condition embarrassing. More specifically she finds her public seizures horrifying. She recounts, “I actually had a seizure one time when I was in a yoga class and they had to call the EMT. It was completely embarrassing.”
Danielle has found it hard to obtain a job. She was in the oil and gas industry, which is currently struggling, and as a result lost her job. Due to her condition, she occasionally worked from home. Taking the bus to and from work also posed inconveniences at times, which employers were unable to understand. Given the possibility of surgery, Danielle and her husband determined it was not in her best interest to start a new job where she would likely have to take a lot of leave.
Danielle admits to not always being the most positive person and allowing bitterness about her condition and limitations to poison her perceptions in life. Given what she has experienced and now knows, she chooses to have a positive attitude.
Danielle credits her husband, Nate, as being an amazing support and partner. They’ve known each other for 10 years and met in college at a CU alumni party in San Diego. For a period of time, Danielle was afraid he would run away, but he’s been by her side ever since. Nate helps and monitors her in a number of ways (e.g. when she’s near water, be it the bathroom or a swimming pool). Danielle is also grateful for their financial situation and believes there is no way she could have maintained a job through her whole medical discovery process and surgery.
Though Danielle’s parents and brother still live in San Diego, she is tremendously grateful for them and their support. Specifically, for her surgery last year, they all flew out to Colorado to be with her, and stayed at a hotel across from the hospital she was at.
The word “in-laws” can sometimes have a rattling affect on a spouse. Not in Danielle’s case. Her mother-in-law is especially generous of her time. She often visits Danielle and they enjoy going out for lunch, coffee or a movie. Danielle particularly appreciates this since Danielle is currently a writer that spends a good deal of time alone at home.
Friends and neighbors also offer and provide help. Danielle affirms, “We just had neighbors move in, and one day the husband said he was going to Costco and asked if I needed anything. I feel very blessed to have such loving and supporting people around me.”
Doctors and Treatment
This past year Danielle opted for a thermal ablation surgery over a resection surgery. Thermal ablation surgery is a new procedure aimed at eliminating abnormal brain tissue in a less invasive manner; the University of Colorado Hospital in Aurora approved it in the last year. Danielle was in the first handful of people to have gone through it and credits the doctors as “amazing.” The procedure is laser guided by an MRI machine that enters through the back of the skull. They make a small incision, which is nothing like the resection procedure, where a bone flap is required.
The resection procedure is more thorough, but somewhat riskier because the affected area is dangerously close to the medulla oblongata, which is responsible for human emotions/moods. As Danielle puts it, “I don’t want to become some nasty person as a result.”
During her recent surgery, doctors successfully burned away most of the abnormal tissue, but deemed the surgery unsuccessful overall because they did not remove all of it. Danielle was in the hospital for nine days, but was released only one day after the actual surgery. She maintains that it was less invasive and heals faster, but may require more surgeries, and it’s very painful. She also begrudges how much these procedures affect her loving family as well.
For now, Danielle is taking a cautious approach and gauging how she responds to the aftermath of her surgery. To this point, it has undoubtedly decreased the episode frequency she was experiencing. “ I was having one or two a month. It’s now been six months and I’ve only had three seizures in that time.” She’s very excited about that fact. If and when they are able to eliminate all of the abnormal brain tissue, those seizures may seize to exist altogether.
Tips and Tricks
“Meditating, practicing yoga and trying to calm my mind has been really helpful”, says Danielle. In that same light, she has also found writing to be a beneficial outlet. She has her own blog, Bus Fair – as in life’s not fair, where you can read about her adventures on her daily public transit commutes. If you need a good belly laugh and would like to hear a recent conversation with a woman that thinks humans are mining gold for aliens, check out Danielle’s blog! “You gotta laugh about some of this stuff. Some of the people I run into, are well, they’re just crazy.”
“When I was living in Boulder, it was so helpful to have a bike because then I could go on my terms and wouldn’t have to wait for a bus or ask for a ride.” When riding her bike, she knows when or if she is about to have a seizure by the auras she gets. She can be a little strong-headed when she runs into those scenarios and tries to power through it, but recommends to others that are passionate about biking to not ignore those warning signs and to take appropriate measures prior to seizing.
Danielle also insists that it’s great to have a pet, which she refers to as her little therapy dog. Another inspiring form of therapy has been her participation in various epilepsy support groups. She lauds that it’s very therapeutic to listen and share with those that can identify first hand with her condition.
Danielle would like to volunteer more and actively seeks people to speak with about epilepsy. She offers her email and blog as a way to stay in contact with people that support the cause. As Danielle continues her metamorphosis, both physically and spiritually, she genuinely believes and relies on her mantra, “It’s all about having a positive attitude.”
If you would like to contact Danielle, she invites you to do so at: firstname.lastname@example.org