In Canada, March is Epilepsy Awareness Month. Alright, you might say, but what does that have to do with cancer....your usual topic on your website? Why should I care? What is the connection?
I am one of the connections.
I have epilepsy and I experienced some additional challenges when I added breast cancer to the mix. Friends, family, and co-workers, struggle to understand what they have never experienced. Add chemotherapy to the mix and even oncologists are in foreign territory. In fact, I was told by an oncologist that the change in my epilepsy had nothing to do with my treatments. I was told that no one else with a seizure disorder had had a problem with chemotherapy. There wasn’t a connection. From my perspective, it appeared that I wasn’t the only one whose head was not working correctly. Enough said.
For this reason, among many, I’ve chosen to do my part to raise epilepsy awareness. I want to help remove some of the stigma.
Facts about epilepsy
World-wide, 1 in 100 people have epilepsy...about 65 million people.
"Seizures involve sudden, temporary, bursts of electrical activity in the brain that change or disrupt the way messages are sent between brain cells." (Epilepsy Foundation)
1 in 10 people will have seizures in their lifetime; however, there are certain criteria that must be met. For example, epilepsy could be a possible diagnosis in someone who has more than one seizure that is more than 24 hours apart. The seizures must be unprovoked (for example, were not triggered by an illness or high fever).
Three major factors are considered when determining the type of epilepsy: where the seizure starts in the brain, the awareness of the person during the seizure (some people are fully aware of what is happening), and whether movement is part of the seizure (not all seizures are like the ones in medical dramas).
If the location where the seizure starts is known, there are two major seizure categories (generalized – both halves/spheres of the brain are impacted and focal – a specific area in one sphere of the brain). Within those categories, there are many other types of seizures with an even greater breakdown of seizure types based on common characteristics called syndromes. The more specific the classification, the more likely it is to find a treatment that will work.
Approximately 70% of people who have epilepsy have their seizures under control through medications. Unfortunately, for 30% of individuals, seizure medication alone will not control their seizures. Other treatment options could potentially be special diets, surgery, the implanting of a pacemaker-like device that regularly sends electrical impulses to the vagus nerve to help calm the brain.
People can die from epilepsy. 1 in 1,000 people with epilepsy will die from SUDEP (sudden unexpected death in epilepsy). There is little known about SUDEP including the reason the person died. 1.9% of people with epilepsy will die after a continuous series of seizures.
There is a stigma associated with epilepsy because of preconceived ideas, a lack of awareness, and fear.
My experiences with epilepsy
As you read some of my story, keep in mind that my journey with epilepsy started over 50 years ago. There was even less known about it then, even by doctors.
When I was a child, I was admitted to a small-town hospital and not allowed to have visitors (including my parents) because the doctor thought I was staring into space, rolling my eyes backwards, and making gurgling sounds in my throat to get attention. It took about a week, and some emotional scarring on my part, before the doctor was convinced it wasn’t psychological.
I was sent to see a specialist and diagnosed with epilepsy (absence seizures) when I was 10.
I was admitted to another hospital to determine the best medications to take. When I entered the hospital, I was having approximately 200 absence seizures a day. I was allowed to go home when I was down to 30. This took three weeks. During that time, my mother visited me on weekends because I was about an hour away from where I lived. There were no places for my mother to stay near-by like there is now. My brothers lived on peanut butter and jam sandwiches each weekend. Dad was not a cook. My brothers were not happy.
I participated in sports without any problems and drove a car for many years before I started having more frequent tonic-clonic seizures. I still renew my license every year and hope to drive again because my seizures have improved dramatically.
I demonstrated, as an adult, that I can feel a difference in my brain activity when I have an absence seizure. To test me, when I was having an electroencephalogram (EEG), I put my hand up whenever I could feel my brain misfiring and I was told I only missed one. I was also told that it is unusual to be able to feel the changes in electrical activity.
One neurologist wanted to do brain surgery even though no one has been able to pinpoint the problem area(s) of my brain. When I asked another neurologist about surgery, he told me I had generalized seizures and would have to have my entire brain removed. It wasn’t an option.
I was never told that I could have any other type of seizure than my absence seizures so when I had my first tonic-clonic seizure (like the ones you see on medical dramas), it was during delivery of my first child. It was an unwelcome surprise and major complication. Fortunately, my son and I survived it, and I had no problem when I had my second child.
I expanded my collection of seizure types to include one that lasts an entire day. My neurologist referred to it as being like a day long seizure. During that time, I struggle to read, write, and speak. Sometimes I struggle to even understand what others are saying. I am totally fine again the next day. This is infrequent, but it happens.
Over the years, I have heard some very bad comments about my epilepsy, for example:
Thank God you didn’t have a seizure in the back of my car.
I don’t want to be responsible for you when you are flopping around like a fish.
I am lucky to have great family and friends who are supportive. Ironically, many of them have never seen me have a tonic-clonic seizure including one of my sons.
My connection to breast cancer
I was diagnosed with two types of breast cancer in 2011.
I had the trifecta of treatments (surgery, chemo and radiation).
I worked while going through chemo and radiation treatments.
I was lucky to have a workplace that would allow me to bank hours when I felt well and use those banked ours when I need to recover from some of the chemo and epilepsy side-effects. In the end, I banked more hours than I used.
I struggled to get my oncologists to understand and accept that my chemotherapy was impacting my epilepsy. I could not convince either of my oncologists to talk to my neurologist to see if a solution could be found. I was so mad at my oncologist that I couldn’t sleep that night. On the bright side, I slept for 5 hours through my chemo treatment the next day.
I didn’t have any tonic-clonic seizures during treatment, but I had more absence seizures than usual and got to experience an all-day one.
I was able to finish my treatments on schedule without having to postpone anything because my white blood cell count was too low or my head was too fried to add more fuel to the fire.
In conclusion
While epilepsy and cancer have brought huge changes to my life, I have learned the following:
The stigma associated with epilepsy applies to everyone with this diagnosis. For example, well-known people will announce they have cancer and share their stories to help others who might be going through the same thing. With epilepsy, we often hear about a celebrity’s epilepsy only after that person dies. However, there are some celebrities who have taken the time to participate in videos to talk about it (epilepsy).
Epilepsy awareness, including much needed education, is critical to removing its stigma.
An epilepsy diagnosis is life changing, but it does not mean that you can’t live a happy and productive life.
Secondary illnesses are not taken into consideration as much as they should when determining treatment options. Specialists like oncologists and neurologists need to recognize that their knowledge is restricted to a specific field and they should be willing to work together for the benefit of their patients.
For some people, it’s fear that keeps them from trying things that they can probably do. I have seen so many people post in Facebook groups asking others with epilepsy if they are able to work and what types of jobs they have. The list of careers is limitless.
There are many nuances to epilepsy and it's physical and emotional impact on the people who have it can be just as diverse.
With every new diagnosis, I have more topics for my blog posts. 😊
Resources
While you wait for my next post, take some time to look at these resources to do your part in raising your own awareness of epilepsy. Here is a short list: