 personal story

Managing and : A New Kind of Normal

By Matthew Renze

On February 7, 2014, I went to sleep with a mild headache, but otherwise was in good health. When I woke up the next day, I experienced the first set of strange symptoms that would change my life forever. It started with brain fog. I had difficulty thinking, reasoning, and concentrating. I also felt a tingling sensation, like pins and needles, all over my body. The following day, I woke up to a constant ringing in both ears. In addi- tion, I now had a strange static across my entire field of vision, similar to the static of a slightly out-of-tune analog television. Over the next few days, I began to experience a series of other unusual visual, auditory, and tactile symp- “The article described visual snow as toms, including seeing and other visual artifacts, difficulty ‘continuous tiny dots in the entire , with loud noises, and fine tremors in similar to the noise of an analog television.’” my hands and feet. All of these symptoms persisted, except for the brain fog, which fortu- nately went away after a week or so. I spent two weeks at the Mayo they suggested I learn how to man- Clinic getting a wide variety of tests age my symptoms, wait it out, and Searching for Answers from some of the top specialists see if things improved over time. They On the third day, I scheduled an in the world. However, all my tests also provided a temporary prescrip- appointment with my general prac- came back normal. Without an official tion for anti-anxiety medication to titioner. He ran the standard battery diagnosis, they concluded that I was help with managing the stress that I of tests, but everything came back most likely experiencing something was under until I could learn how to normal. Out of options, and unsure of they referred to as a Central Sensitiza- manage the symptoms on my own. where to send me next, he referred tion Disorder (CSD). I began researching CSD to help me to the Mayo Clinic in Rochester, They didn’t know what caused it, my recovery plan. While researching, Minnesota. and there was no known cure. So, I discovered a recently published ar-

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snow patients also reported continu- these factors as much as reasonably ous bilateral non-pulsatile tinnitus. possible to keep my symptoms in The description of the symptoms check. almost perfectly described what I had Next, I started eating a much been experiencing over the past sev- healthier diet. I noticed that foods eral months. I finally had an explana- with a lot of salt or sugar seemed tion for my cluster of unusual symp- to make my symptoms temporarily toms. In addition, I now understood worse. So, I eliminated these foods why my doctors had never heard of from my diet. In addition, I ate more the condition. of the foods known to improve overall health. I did this to give my body and Learning to Manage brain the nutrition they needed to Symptoms repair and stay healthy. I began exercising more. This

H eather Wilde As you can imagine, this combina- helped tremendously with managing tion of symptoms would be quite dif- stress, anxiety, and . I Credit: Matthew Renze celebrates his finish of ficult to manage. Dealing with both- RAGBRAI 2017, an annual 450-mile bike ride ersome tinnitus on its own is difficult across Iowa. enough. However, just imagine having “I was able to ticle on a rare neurological condition, this same annoying noise in both referred to as visual snow. The article your vision and of touch all day identify factors that described visual snow as “contin- long. You essentially have a recipe for uous tiny dots in the entire visual disaster on your hands. made my symptoms field, similar to the noise of an analog My struggle to cope with the sen- television.”1 sory noise led to considerable stress, worse.” The article went on to describe anxiety, sleep issues, difficulties Visual Snow Syndrome as a collection concentrating at work, and eventu- of symptoms, including ally depression. However, the Mayo also began practicing yoga to learn (seeing afterimages), entopic phe- Clinic provided me with the tools that to manage my response to stress. nomena (excessive , blue-field I needed to learn to manage these Yoga teaches you how to calm your entoptic phenomena, and sponta- symptoms. body and mind when confronted with neous ), (sen- First, I was able to identify factors stressful stimuli. sitivity to bright light), and that made my symptoms worse. My What helped me the most with (impaired night vision). symptoms always are present to managing my symptoms, however, In addition, one of the most inter- some degree every day. However, was meditation. Like yoga, meditation esting findings reported in this article, certain things make them noticeably teaches you how to calm your sym- and in subsequent studies2,3, was that worse, including stress, lack of sleep, pathetic nervous system in the face approximately 63 percent of visual having a cold or the flu, and excessive of painful or pleasurable thoughts, computer use. So, I tried to minimize emotions, and physical sensations. This is done through focused awareness of breath and monitoring “What helped me the most with managing of thoughts, emotions, and bodily sensations. Over time, you learn to my symptoms, however, was meditation.” minimize your emotional response to these sensations. In addition, it helps

www.ATA.org Tinnitus Today spring 2018 39  personal story

with concentration, maintaining non- every day, I am very happy judgment, and minimizing cravings to report that I am no longer and aversions. suffering from my symp- However, learning these valuable toms. skills took the right instruction and a The path from where lot of practice. To learn how to medi- I started to where I am tate properly, I took at 10-day course today was not an easy on Vipassana meditation.4 This helped path to walk. We imagine enormously to get me on the right our recovery will be like a path with my daily practice. gradual staircase, leading In addition, I watched a 12-hour from where we currently video lecture series on The Science are to where we need to be. of Mindfulness.5 The lectures are It seems deceptively simple Matthew Renze at Yoga in the Park, Ankeny, IA. taught by Ron Siegel, professor of — just keep climbing step- Psychology at Harvard University. This by-step each day until you’re ist with them as just another part of helped me to understand scientifically at the top again. my day-to-day life. how meditation was changing my However, the reality is that the While it may seem counterintui- response to stress. path to recovery is a very jagged tive, in some ways, this very difficult I also record biofeedback and mountain range with more ups and experience has been one of the best neurofeedback data from each of my downs than we could ever imagine. things to ever happen to me, because daily meditation sessions. This has Over time, though, you begin to real- I’ve applied the lessons it taught me allowed me to track the progress of ize that you are having progressively to my daily life. my meditation practice over time. As more good days than bad days. Final- First, the experience taught me a result, I can objectively see how ly, you look back to see where you to appreciate what is truly essential meditation has created a significant once were and realize how far you’ve in life and to make the most of it. As difference in my ability to respond to actually climbed in the process. a result, I’ve taken several personal stressful stimuli. and professional risks, that prior to For me, a healthy diet, exercise, A New Kind of Normal this experience, I would have been and mindfulness practices have al- Today, my life has returned to a too afraid to take. This has led to a lowed me to turn bothersome symp- new kind normal. I still have all of my new relationship, rapid career growth, toms into manageable symptoms. As symptoms; however, they are now spending more time doing what I a result, I have been able to manage much more manageable. In addition, love, and getting to travel the world. my symptoms without medications my symptoms no longer cause me Second, I now have significantly for several years now. So, while I stress or anxiety like they did in the more empathy for those who are may have to deal with my symptoms past. Essentially, I’ve learned to coex- suffering in their own lives. Prior to this experience, it was hard for me to relate to people who were going through difficult situations with their “For me, a healthy diet, exercise, and physical and mental health. However, mindfulness practices have allowed me I now am better able to empathize and help others who are currently to turn bothersome symptoms into struggling, like I once was. Third, this experience taught me manageable symptoms.” how to leverage mindfulness prac- tices, like meditation, to better cope

40 Tinnitus Today Spring 2018 www.ATA.org personal story 

with the stress of day-to-day life. This has had an enormous impact on my ability to deal with difficult situations, “First, the experience taught me to appreciate meet tight deadlines, and speak to large audiences. what is truly essential in life and to make However, the most important les- son I learned is easy to say out loud, the most of it. As a result, I’ve taken several but much more difficult to under- personal and professional risks, that prior to this stand. I now know it is possible to be in mental, physical, or emotional , experience, I would have been too afraid to take. but to not be suffering from that pain. This has led to a new relationship, rapid career This is because suffering is how we respond to pain. growth, spending more time doing what I love,

Matthew Renze is a and getting to travel the world.” data science consultant, author, and international public speaker. To raise awareness of Visual Snow Syndrome, he’s presented on the topic at medical conferences, written articles in peer-re- viewed journals, and created online videos providing information to help others with the condition. For more information, visit his web- site at: http://www.matthewrenze.com To view Matthew’s presentation on his story and the relationship between tinnitus and visual snow, see: https://youtu.be/jUnMBd0zySo Matthew will be presenting on this topic at the first-ever Visual Snow Conference in San Francisco on May 5, 2018: https://visualsnowconference.com

1 Schankin CJ, Maniyar FH, Digre KB, & Goadsby PJ. ‘Visual snow’ — a disorder distinct from persistent . Brain. 2014; 137 (5): 1419-1428. https://doi.org/10.1093/brain/awu050 2 Schankin CJ, Maniyar FH, Sprenger T, Chou DE, Eller M, & Goadsby PJ. The Relation Between Migraine, Typical Migraine Aura and “Visual Snow”. Headache: The Journal of Head and Face Pain. 2014; 54(6):957-966. https://www.ncbi.nlm.nih.gov/ pubmed/24816400 3 lauschke J, Plant G, & Fraser C. Visual snow: A thalamocortical dysrhythmia of the visual pathway? Journal of Clinical Neuroscience. 2016; 28:123-127. https://www.ncbi.nlm.nih.gov/pubmed/26791474 4 https://www.dhamma.org/en/index 5 https://www.thegreatcourses.com/courses/ the-positive-mind-mindfulness-and-the-science-of- happiness.html

Information provided by the National Institute on Deafness and Other Communication Disorders (NIDCD), part of the National Institutes of Health.

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