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In 2011, I returned from an international trip and within 24 hours found myself in the hospital with a severe allergic reaction. Large regions of my skin were swollen and ranged in color from red to purple. I was exhausted and scared when I arrived in the emergency room. I was rapidly put under the care of an infectious disease specialist, which was appropriate given my travel history and the nature of my symptoms. Being scared rapidly gave way to confusion and uncertainty about what was happening. Numerous doctors and medical students crowded into my cubicle and tried to figure out what was happening. I lapsed in and out of sleep and was just happy to be at the hospital.  

I think I was tested for about every disease there is for which tests are available. For days, new test results were coming in.  

I later learned that there was real worry about my mental status. At one point, the infectious disease doctor expressed her concern that because of my confused state, I might have meningitis. As a consequence, I needed a spinal tap to take some of my spinal fluid for tests. This got my attention and I became fully alert for the first time in hours. I insisted (and was probably a little obnoxious) that they were not going to give me a spinal tap until I had seen the Chair of Neurology. The hospital, Tufts Medical Center (TMC) is associated with the Tufts University School of Medicine (TUSM) where I work as Chair of Neuroscience. Luckily I knew the Chair of Neurology, Anish Bhardwaj, who also knew my history of epilepsy. I insisted that I see him, called for him by name. Within 30 minutes he was at my bedside. He looked at my records, inspected me and told me “Phil, you have a textbook case of an allergic reaction to your medication, to phenytoin.” (This reaction can cause Steven’s Johnson syndrome, which is a very dangerous condition with ~40% fatality rate.) “We are immediately taking you off of that medicine and putting you onto Keppra.” He then followed, “But I am concerned that you might also have meningitis and you do need a spinal tap.”   

Anish took me away and together with a resident they attempted a spinal tap. Unfortunately there was difficulty and so I ultimately was taken down to have high speed x-ray to help with the needle insertion. As a scientist I insisted on watching the needle go into my spine on the TV monitor. For me, it was fascinating, but at the same time, surreal. 

For several days thereafter I was in an isolated room just in case I had an infectious disease. Slowly my symptoms stabilized and I began to improve. Over the course of a few months I recovered.

I also felt that I had returned to a period in my life decades before. I was on a new medication, were the levels correct? Would I start having seizures again? The old anxieties and constant fear of the next seizure returned. I had an internal mental battle between the Anxiety and Logical parts of my brain. Fortunately, after a few weeks without a seizure the anxiety dampened, and I got on with my life.   

I learned long ago from having my medications discontinued before going to University (which resulted in a seizure) that I needed to take more control of my condition. I had to be a better advocate for myself. I needed to respect medical authority but also to understand that there is a reason that physicians “practice” medicine. It’s not an exact science and they don’t have all of the answers. I have moved several times during my career and even to this day, when I get a new Primary Care Physician, they want to take me off medications. They say something like – “Given that you haven’t had a seizure in over 40 years you have a 90% chance of not needing your medications anymore.”  

I answer, “So I have a 10% chance of having a seizure if I come off my medications? My blood levels of medications aren’t high, I am not having side effects since we regularly check my liver enzyme levels, and I am not having a seizure.” (I hesitate to even write that statement.) If it isn’t broke, let’s not fix it. I appreciate that they are trying to help. But I also feel medicine is a team practice, we need to educate ourselves and take an active role in our own care, along with the physician.  

When I had my allergic reaction, I was fortunate to be in a medical setting where I was able to call for someone’s help by name. During my first years with epilepsy, as my medicine was adjusted and I found ways to live my life, I learned the importance of being one’s own best advocate. I challenged information and did not sit back passively. I educated myself and came to understand that my journey with epilepsy was unique to me. Being your own advocate is critically important in helping you guide your own path and your own medical treatment. Learn as much as you can, document your own experience (make a log book that you can refer to when you see your physician), and believe in yourself.

You have the right to ask questions, to be heard, and to make the choices that will result in the best quality of life you can have. 

2 thoughts on “Be Your Own Best Advocate

  1. I am excited about your sailing. I have not sailed in 2 years. I certainly miss it. This past January, I implanted the neuropase. My doc is Joel Oster MD at Tufts. Have little to no success with meds. I had some success with Dilantin for a few years but developed some difficulties.
    I love sailing. I started in my 30’s, and got on a crew and sail out of Tiverton yacht Club. I truly miss ⛵️
    Good luck, I am certainly interested on how things are and how you finish.
    Randy

    1. You’ll get good treatment at Tufts! Sorry to hear that you’ve had to give up sailing for now. I hope that you’re able to find an activity that adds similar value to your life. Have you heard of Blokarts? I’ve never tried them but they look like fun, that thrill of sailing without some of the risks of being on a boat or on the ocean.

      Please keep in contact – I’d like to know how you’re doing. I also invite you to take our One More Step Challenge and/or add yourself to our map of Virtual Shipmates.

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