About this time last year I started having seizures, which I talked about in a previous post. It took several months, but we found the right pharmaceutical cocktail to terminate the seizures. In the state of Florida, once you have a seizure you lose your driving privileges for six months. Six months and two weeks from the day of my last seizure, I have another. So after a whopping two weeks of driving, I am once again without a license. Since then I have been having seizures on a regular basis. These are not as intense as the ones I had previously, although they do take me longer to recover from.
Not knowing what is causing this new activity my oncologist Dr. Nick decides it is time to get an epilepsy specialist involved.
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| 3D rendering I created as reference for a new painting about pharmaceuticals. |
Enter Dr. Ania, who orders several tests and doubles the dose of Vimpat, one of the anti-seizure medications that I am on. The next day I am home alone when the pins and needles feeling starts creeping down my arm again. I call Rhonda who drops everything and races home from work. She gets in touch with my doctors who after hearing my symptoms tell her “call 911”. She says, okay “I’ll take him to the hospital”, and they tell her “no, call 911”. The house quickly fills up with the local paramedics. Eight hours and several tests later, the ER doctor comes in and tells me they are doubling the dose of Vimpat. I say, “We just did that” and to my disgust hear, “Yes, but we need to double it again”. Vimpat has a long list of side effects and unfortunately I am affected by many of them. In 48 hours I go from a daily dose of 100mg to 400mg of this “wonderful” drug. The very next day I start feeling that dreaded sensation again. Luckily I am not home alone and it is small enough that I am able to ride it out.
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| Rhonda enjoying a moment when she doesn't have to drop everything to help me out. |
Now I have seizures regularly; an average of 15 a day. The good news is that the new dose of medications is kind of working. Although I still have seizures they rarely feel like more than a slight pressure or tingling of my left arm. We continue to search for the right combination of drugs to completely suppress the seizures. It will be a slow, uncomfortable process, but we will get there.
Doctor Ania’s diagnosis is “drug resistant epilepsy” which if he is correct means that I will not only continue to have seizures the rest of my life, but they will proceed to get worse over time.
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| Me working on a new painting. |
When I was diagnosed with cancer I thought, if I can survive this, my life will go back to normal. I was also familiar with the saying, “If the disease doesn’t kill you the cure will”. Fortunately neither the cancer nor the treatments have killed me. So far I have been very fortunate with the cancer. My bi-monthly MRIs continue to be stable which is much better than expected. With that said, I can handle a life with seizures much easier than life with cancer. Best of all, I have been able to work on my art way more than I was ever able to in the past. Who knows, maybe that is the “silver lining” to this whole freakin’ predicament.
