Dealing with my epilepsy diagnosis was harder than it should have been because, despite years of work in health care, I felt the attached stigma. I believe many of us with epilepsy, whether Temporal Lobe or another form, have similar feelings and fears. I daily fight feelings of “could this really be right?” or “maybe someone made a mistake and it’s Lyme disease” or my favorite “there is nothing wrong with me; it’s all in my mind”.
I did not like fighting my daily denials with virtually no information coming from my healthcare providers, so I turned immediately to Internet research, using the skills I developed in school and in my jobs. Internet research may be quick, but it is not easy. It requires long periods of drilling down through information sources, a task dangerous to epileptics because of the amount of computer time needed to find correct and useful information.
The benefits are numerous. I found lectures, papers and drug information from around the world, along with comments and advice from people on epilepsy forums. By spending the time, and drilling down into the information, I gained an understanding of the current hierarchy of Antiepileptic Drugs, AEDs, sometimes referred to by the old name of anticonvulsants. I read papers from Canada, Australia and Germany detailing new research on issues from vitamin E to gene therapy. More important, however, I started forming a picture of what my version of TLE looks like in me.
We know epilepsy is an umbrella, so to speak, covering a large number of symptoms. Not everyone with epilepsy has the same reactions, symptoms or triggers. Even those whose condition is in a similar area of the brain, such as the temporal lobe, react differently within a large group of symptoms. I believe doctors misdiagnose TLE because it is shows up in different places, and manifests itself in different ways with each person.
I went for more than 45 years after my symptoms began to appear before I received the correct diagnosis. But getting it required looking at my complete medical history. Even after this definitive diagnosis and after seeing a specialist, potentially harmful mistakes were made with my medication, because I did not understand how my particular brand of TLE portrayed itself.
It is my opinion that reading as much as possible from valid sources is the only way to understand this condition. Even though the Web provides amazing information, problems begin when determining if the information is accurate and reliable to your situation. (A quick note here to appease my writer husband: An outdoor thermometer may be accurate and reliable when determining the morning temperature on the porch, but it is neither accurate nor reliable in determining how much you weigh.)
All information on the Internet will replicate itself over time. Replication results when people copy, without verifying, information to use on their Web sites, blogs, columns, forums, etc. If the information is incorrect, it still multiplies. This is why, when developing a picture of your illness, you need to compare sources and determine what you believe applies directly to you. From that point, use those sources to form a foundation and a means of comparison. In essence, you are building a “straw man” of your condition, one you can observe from a rational point of view to decide what benefits you as a person and you as a patient.
Doing your own research rather than relying on others requires a certain amount of strength or stubbornness. I am not implying that you take over your care from your healthcare provider. I am advocating for the enlightenment of patients with this condition.
My focused (stubborn, if you will) research arose from my almost daily intense muscle cramps I’ve had since childhood, primarily behind my knees and in my arms around the joint of my elbow. Underneath the cramping muscle, my nerves become a hot, electrical current. If I concentrate hard, I can touch that “current” and feel its pain. Many times the muscle cramps and nerve pain occurred in school where I chewed on my pencil to keep from moving in my chair or crying out. At home, I was told that they were “growing pains”. But they kept me awake at night long after I stopped growing.
When I went through the crisis that pushed my TLE to the forefront, the pain got so bad that I paced for hours in hopes of relief. I was on my fourth neurologist before the mention of intense pain got a response other than a prescription for narcotics. This neurologist, while leaving the examination room at the end of our visit, said the muscles are experiencing the same reaction as if I had run a marathon. I was stunned. This comment has so many implications.
As a result, I looked into both the release of lactic acid as a result of seizures, and the need to replace magnesium. I started drinking a sports drink called POWERADE ZERO to replace the electrolytes that my muscles might be losing without taking in sodium and carbohydrates. Despite low/normal ranges on my blood test for magnesium, I started taking extra magnesium chloride recommended by the pharmacist. I did this because a blood test is a snapshot of what is going on in your body at any given moment. To my knowledge, I have never had a blood test before or after a seizure.
For me, the combination of the sports drink and the extra magnesium reduced muscle cramps and nerve pain. This might not work for everyone, though. In the past, I took prescription narcotics to cover the pain, but that short-term solution nearly destroyed me. I spent a year stepping off all the inappropriate medication, peeling back layers at a time so I ended up with a clear picture of the problems and physical responses. In looking for natural ways to deal with these issues, I am not advocating leaving a doctor or turning to herbs. I’m just trying to understand how my brain functions so I can deal with my issues from that angle.
There is also another reason why it is necessary to understand how the body works and what it needs. Many of the medications result in serious medical conditions that show up as side effects. Despite all the precautions I took when I began my treatment on AEDs, narcotics and other companion drugs, I suffered bone loss and was diagnosed with osteoporosis. This is a common side effect of many AEDs.
So, one day in 2009, I realized I had TLE, osteoporosis, suicide ideation, skin discoloration, general depression and an addiction to legally prescribed painkillers. What would be next? I understood that a patient’s total health (my total health) was not the goal of many specialists. They want to specialize in one area (hence the term) and either refer you to a specialist in another area or ignore your condition if it cannot be covered up with drugs.
I knew then that total health was something I had to find on my own. It was my responsibility.
Below are just a few of the easy to read websites I found interesting. Others can be found simply by putting in search terms.