As an adolescent, I suffered a head injury during a middle school basketball practice. Knocked out cold after slamming my head against a wall the days and months that followed altered my life, and my family’s from that day forward.
Luckily, as an adult, I’ve arrived at a regimen that has worked better than anything has in my life. Although the pregnancy was a bumpy journey, through five years as a mom our family has finally found some normalcy – a journey I’ve been on for more than half my life now. Along the long path to seizure control, I’ve discovered that just like being a parent, everyone’s approach to it is very personal and by nature must be individualized. God knows, it takes quite a bit of trial and error to find the right methods for either one of those. In sharing my story, my hope is to help others understand what options are out there.
THE GRAND MAL & GRADE SCHOOL
Though I didn’t seize during the first black-out that we later found resulted in traumatic brain injury, the grand mal seizures started almost a year after. That was right as I entered high school.
Going to school became an anxiety-inducing endeavor. My mother began monitoring me at the direction of my pediatrician. Eventually, when the episodes continued un-checked he referred me to my first of many neurologists. The endless testing cycle began.
Queue the pharmaceutical cocktails, followed by textbook teenage angst, and serious depressive episodes. I tried Tegretol, various barbiturates, and Topomax all with horrible effects. Then, on top of those, my pediatrician threw in Zoloft for good measure.
Not fun. Not sustainable. The worst part, as a semi-responsible teenager, many of the pharmaceuticals required multiple, specifically-timed doses to maintain their efficacy. I was, and still am, horrible at that. The lack of ‘urgency’ in taking these doses was especially inhibited considering the miserable side-effects I had to endure.
While struggling to find a sustainable treatment regimen my mother and I partnered on a few initiatives to restore some normalcy to my teenage years.
First, we navigated the ADA and accommodation options. This is never a one size fits all approach, we worked with my neurologist, pediatrician, school nurse, and principals to find the right fit for my case.
Second, we were sure to notify all my teachers and select classmates of the situation. Education was the next step – helping them to understand the signs and symptoms and how to administer basic first aid, pulling resources and print-outs from the National Epilepsy Foundation.
Finally, to help dispel the stigma and misinformation floating around, we worked some form of education into ‘getting to know you’ talks at the beginning of each semester. By the time I was a senior, my besties already knew the drill and more students than I care to admit had witnessed the convulsions.
Believe it or not, the hardest part was establishing a universal understanding of the appropriate time to call an ambulance. To the average person, any seizure appears to be a significant emergency but the paramedics making a fuss and the embarrassment factor of coming to that environment, particularly in a classroom of peers, was hellish.
EPILEPSY AND MY COLLEGE YEARS
A period of endless trial and error and lack of independence followed. As I entered college, I was unable to drive and my confidence levels were nill. I chose to stay close to home for my post-secondary education as a result. There I navigated ADA accommodations in a university setting. For four years more, I struggled with taking an approach to treatment exclusively focused on western methods.
This era was a repeat performance of my high-school years with tuition involved. The most notable event of these few years came my freshman year when I had been cast in Hardin-Simmons University’s production of Brecht on Brecht. After fighting off a case of shingles and taking drugs that interfered with my medication, I fell out and had a seizure in rehearsal one day. The dean of the program decided I was incapable and cut my part in two effectively leaving me feeling defeated, and devalued. It was that day I discovered I was severely allergic to the number one pharmaceutical drug used to treat status epilepticus, Dilantin. I think witnessing the anaphylaxis after paramedics administered it in front of everyone is what led to this decision.
The decision they made for me, the “you can’t” mentality colored my four years there in a way I never expected. The university backed up the decision to relieve me of my part in the play. Thus began the trail of paperwork every semester thereafter to assure I had some written understanding among my educators of the nature of my still uncontrolled condition.
It was after the age of 21 that I had toyed with the idea of exploring cannabis products as a supplemental therapy for my epilepsy. I had used it recreationally and found the marijuana I’d tried to have some therapeutic effects. I confided in another student, I was drug tested shortly after on an ‘anonymous tip’ from a peer. This would continue each semester after that – each time my academic scholarships were on the line. With those stakes I put off any non-traditional treatments I had considered, kept my head down, withdrew from university social activities, and finished my degree in an isolated ‘bubble’ of my own making while putting a ‘pin in it’ as far as discussing the idea while attending the university.
FINDING HOLISTIC TREATMENT IN AUSTIN, TX
The day I graduated college, I packed my things and high-tailed it to Austin, Texas. Those four years of adapting gave me the confidence needed to finally strike out on my own. It was Austin’s world-class team at Seton Brain and Spine Institute Neurology Center that changed my life.
Working with Dr. Jason Shen (now retired) I began taking Lamictal XR. The extended-release tablet freed me from the five doses a day regimen that had beleaguered the effectiveness of my therapy up to that point in life. The catch, a thirty-day supply was well over $1000 per month. With insurance, which I eventually had after I joined the staff at The Austin-American Statesman, it was still a staggering $300 per month out of pocket as a non-formulary.
Where finding the right drug had been the issue before, now a steady supply was the biggest challenge. To be honest, it still is. To this day, even with a PPO insurance plan, I work with my current neurologists at Hill Country Neurology to order this medicine from Online Pharmacy Canada.
From Canada, the medication runs $100 per month out of pocket. Still, as XR is non-formulary I have to meet the deductible of $2000 out of pocket before insurance will cover the drug if I were to purchase it from a US-based pharmacy. God bless you Canada!! Sometimes, with customs, I end up on pins and needles hoping for no lapse in doses but at least I know I can afford to sustain the supply now.
The biggest change …
My neurology team’s approach at Seton Brain & Spine Institute was like night and day from the care I received in West Texas. They encouraged me to look at the big picture. They supported alternative, supplemental therapy and coached me through it.
I eventually found a regimen of sleep, stress management, pharmacology, and counseling that got the condition under control. Then, came another life phase that would challenge me like never before.
PREGNANCY AND CONTROLLING SEIZURES
Talk about ups and downs, my condition had already led me to an alternate journey through pregnancy as a ‘high risk’ patient that didn’t fit within my own plans. (Take a look at my birth story for details on that.)
With the increase in blood volume, the dosage of the Lamictal XR increased substantially. So did the out of pocket cost. So did the correspondence with my friends at Canada Online Pharmacy. However, we all took comfort knowing that Lamictal has the lowest impact on neonates, has virtually no withdrawal for the baby once he would arrive, and only trace amounts transferred to breast milk.
I only experienced one seizure during my entire pregnancy and that was only as s* got real with pre-eclampsia. Before that, my OBGYNs tag-teamed the pregnancy and delivery care-plan flawlessly interweaving a regimen of prenatal massage, diet restrictions, and carefully calculated increased doses of my regular control meds. Together they made this experience as normal as an epileptic could expect. It wasn’t a walk in the park, but I was in good hands.
HOW MY FAMILY AND I COPE WITH EPILEPSY
Bringing home the kiddo we understandably had some hiccups and fears. We worked through them together. As our little boy has grown up, we’ve slowly educated him on my condition – an art I’ve mastered over the years. He has not yet witnessed an attack and I hope he never does. He has been home at one time, but not since he was three years old.
I have had struggles since he’s arrived, but as I’ve aged I’ve found other things to incorporate to help control my seizures.
Here’s how I approach it these days –
- Work with a trustworthy team of practitioners. Establish a healthy one-on-one relationship with them where you collaborate on a holistic approach not singularly focused on western medicine. Having the buy-in and support of your regular practitioner and neurologist makes a world of difference.
- Keep a consistent schedule of medication. I’ve found that mornings are too hectic for me, I take mine at night and I’ve got a reminder call scheduled with my Canadian pharmacy to be sure meds can clear customs before I run out.
- Seek regular chiropractic treatments. Turns out chiropractic treatments can have an impact on nervous system pressure, in my case the Vagus nerve. Periodic adjustments have helped me considerably.
- Self-care and avoiding burnout is key. My stress management techniques include organic CBD Oil(s) for anxiety, bi-monthly acupuncture for depression and anxiety, and semi-regular massage.
- Maintain and appreciate the support network you have and lean into it. This can be a saving grace when you battle the extreme ups and downs and the mood swings that come with them. MyEpilepsyTeam is my favorite online community. It’s a social network for people struggling with the same things I do and I’ve learned a lot from their e-newsletters.
Most recently, I’ve begun to explore options through Texas Originals Compassionate Cultivation. This I will do under the guidance of my neurologist and the neurology teams participating in the clinical use of organic, supplemental therapy to help epilepsy sufferers like me.
I take some comfort in knowing that in recent years, even Texas-based century farmers like The Bingham Family have begun to cultivate organic cannabis close to home. This gives me a great deal of hope that access won’t be an issue as it has been with traditional pharmaceuticals. As this journey unfolds, I’m happy to personally answer any questions you may have.
A FEW THOUGHTS FOR FAMILIES
My best advice, don’t be afraid to try a holistic approach and explore outside the box options. If you’re working with a physician that does not support these goals, save yourself the time and heart-ache and seek a second opinion.
Finally, know you’re not alone in your struggles. Every family faces its own challenges, and every family finds its unique balance in its own way, whatever that may be. Don’t limit yourself to what treatments are ‘normal’ because it takes a healthy mix to truly get it under control.