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Talking publicly about drugs and their impact on me is hard. There is the concern that someone will use the information without understanding that each individual reacts uniquely to pharmaceuticals. I have chosen to do so, carefully, because without explaining my reaction to drugs of any kind, I would be leaving out a lot about the impact of my condition.
Six years ago I had a “crisis” in which the TLE came forward from the background of my life and took control. One of my neurologists told me that my TLE could have remained as “unexplained but harmless” occurrences attributed to my personal makeup had I not subjected myself to extreme levels of professional stress, alcohol, and tobacco for such a long time.
With my first diagnosis, I received an anticonvulsant (AED), a tranquilizer, and a hefty dose of narcotic painkillers. The doctor also wanted to give me Lithium, but I refused. I was referred to a specialist for additional AEDs and drugs for post-traumatic stress disorder (PTSD). All these drugs were supposed to stop the pain and the seizures and to allow me to work as I had before the crisis.
This plan didn’t last long. My seizures and pain increased, and my ability to concentrate slipped away. The neurologist changed the AEDs several times before I found one that seemed to be the magic bullet. Topomax worked for a year before major problems began to surface, which permanently affected my bone marrow and temporarily attacked my muscles and memory. All the while, my seizures increased and the pain rose to an unbelievably difficult level.
A new neurologist told me right off the bat that I probably had ALS or lupus because I was in such bad shape. She ran a battery of 25 tests costing thousands of dollars before the she agreed with me that Topomax might be the problem. My condition improved immediately when I switched to Keppra, my final AED.
I call Keppra the final AED because by this time I has researched every AED on the market and found that I could not take any of them. Each one included an ingredient that caused an allergic reaction. Most of the AEDs treat multiple conditions; they’re akin to a buffet line that offers up an assortment of food to satisfy your hunger. They cover epilepsy (such as partial seizures), bipolar disorder, restless leg syndrome and fibromyalgia to name a few. Most contain antidepressants and some contain sulfa among other things. And those are the name-brand drugs. Who knows what’s in the generics?
Frustrated by the list of drugs I was unable to take and by the lack of clear information available, I looked closer at the drug situation. I had felt very helpless and frightened when I first heard my diagnosis in 2005. The idea that I would have problem with the drugs was one I intentionally did not address at the time out of fear. I convinced myself the drugs would clear everything up. What I did not consider, and what I was not told, was the possibility that I might never be able to take them.
I began to look at the first group of problem drugs. All my life I have had violent reactions to antidepressants and antipsychotics. The general reaction is pain with initial use, increased seizures, and eventually suicidal thoughts and impulses. I found nothing about this reaction through medical websites or papers, but I did find an interesting reference in Seized by Eve LaPlante. In her book, she states that the intolerance to these drugs is now considered a clue that the patient has epilepsy rather than a psychiatric disease.
Really? None of my doctors read that important piece of information. LaPlante also goes on to say that two-thirds of TLE patients did not feel that their seizures responded well to drugs. That’s a pretty high number. And the interesting question is this: if the number is actually that high, why don’t neurologists tell their patients? I’ve seen six doctors during the last six years, but the possibility of complete drug intolerance was never mentioned.