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January 17, 2012

Last year in July, the International Epilepsy Congress in Rome explored the question of “What is Epilepsy”. Gordy Slack wrote an article about the findings of the Congress’s second day stating, “What is epilepsy? The most common and obvious definition is the propensity to have seizures. Does that mean that if a doctor can make her patient’s seizures stop, she’s ‘cured’ the patient’s epilepsy? Most neurologists act that way; once seizure-free, a patient is typically sent on their way unless and until they seize again. But there’s a growing consensus that epilepsy goes beyond seizures. In the words of Harvard epileptologist Frances Jensen, ‘Seizures are often just the tip of the iceberg.’”

I read this article feeling as if someone where seeing me and others like me for the first time. I know that temporal lobe epilepsy is a constellation of elements that are separate from the actual seizures, but are connected by the area of the brain in which they occur. I have had the experience of some of the seizures stopping, or in some cases, one type of seizure, and still feeling as if it were all going on behind the scenes. The best example I can give for this sensation is the use of Botox for migraines. I became so crippled by migraine pain that Botox was my last resort. The shots do indeed stop my migraine pain most of the time. They do not stop the other parts of the migraine, though, such as the nausea, paralysis of one side of the face, auras, tearing of the eye, emotional rollercoaster feelings, and so forth.

I’ve learned how to recognize when I am actually having a migraine even though I can’t feel the pain. This is important because I need to alter my behavior and be prepared for other problems. The same was true for me with my anti-seizure meds, the AEDs. When they did stop the seizures, it felt as if the seizures were continuing behind the scenes, behind the veil of the medication. The drugs did nothing to stop the entire cycle, of which the seizures were only a part.Now that I am unable to take AEDs, the temptation is to focus on the seizures. How do I stop the seizures or prevent them and, at the very least, minimize the damage and pain? To confine my focus in this way is to only see and feel the tip of the iceberg.

At this point, I will avoid the obvious Titanic comments and go on to say that to expand the awareness to the entire cycle is extremely healthy and helpful. If you know why you are compelled to feel a certain way at some point in the cycle, it’s far easier to figure out the reason than to beat yourself up about the oddness of the situation.

I guess these statements call for another example. I have had a rough seizure cycle the last three to four days. For me, my body is like a bucket that collects each day’s problem issues. These would include too much, or any, exposure to fluorescent lights, loud noise, certain screen changes on the TV, too much computer work and too much emotional upheaval with family or friends, not to mention food problems. Too much of anything, really, even good things like too much yoga or too much of a family birthday can fill the bucket.

Once the bucket is full, then the seizure cycle begins. The seizures can cause pain, fear and a feeling of unbalance.  And, seizures are not the only things happening to me during the cycle. So if I have the seizure and am dealing with the pain, sleeplessness and so forth, I also have to remember that feelings of withdrawal, fear and other irrational responses are part of the cycle. Ignoring them or trying to stop them may trigger another seizure. I have to allow these feelings to exist, while being aware that they aren’t necessarily real. In some ways it splits me in two as I look at the feeling and acknowledge it while being aware that it is not real and not lasting. And, yes, I know that sounds pretty strange: acknowledging the existence of something that doesn’t exist! It is, however, the kindest way I can deal with the condition and not feel waves of self doubt and anger on a regular basis.

If you haven’t already, read the entire article about the International Epilepsy Congress by clicking this link.