Meet Our

Warrior of the Week

These inspiring individuals with Visual Snow Syndrome are sharing their experiences living with this condition and how they try their best to overcome its symptoms everyday.

Spotlight on:

Maria Luiza de Castro Silva

Meet our #Warrioroftheweek, Maria Luiza de Castro Silva 💙

Spotlight on: Maria Luiza de Castro Silva

Hi! My name is Malu, I’m 21 years old, and I’m from Brazil, specifically from Natal – Rio Grande do Norte. My story began in 2019 when I woke up for school and noticed something wrong with my vision. I was seeing flickering dots everywhere. Initially, I didn’t realize it, but then I started paying attention and noticed difficulties with afterimages and an abundance of floaters in my field of view. I decided to search on Google to find information about it. Although I didn’t find much, I read that it was a rare syndrome, which scared me a little.

At first, the symptoms were mild, and I got used to them. However, in 2020, I spent three months alone at home due to my mom and stepdad traveling and the extended lockdown due to the pandemic. My anxiety was greatly triggered, and my symptoms became more intense. I started experiencing the blue field entoptic phenomena, nyctalopia, and my tinnitus became louder (I have had tinnitus since 2018, possibly due to TMJ disorders and stress, but it only affects my right ear). With high levels of anxiety and fear of having multiple sclerosis or something more serious, I began to experience paresthesia on the right side of my body. I panicked, thinking I was dying and felt tingling in my hands, feet, and tongue. I also lost my sense of taste and smell. I cried all night and then started to feel numbness throughout my body. I also had a diminished perception of things. I didn’t feel hungry, even though my stomach was growling, and I didn’t feel the urgency to urinate, even with a full bladder. I experienced anxiety attacks and symptoms of depression.

I started treatment with antidepressants and anxiolytics, and the numbness disappeared. My sense of smell and taste returned, but I continued to deal with visual symptoms such as dots in my vision and persistent tinnitus, although they became milder, and I managed okay. However, last year, after a night of poor sleep, wearing contact lenses, consuming alcohol, and drinking more coffee than usual, in addition to being around people using weed, I woke up with more pronounced visual symptoms and a strange feeling on the right side of my body. My anxiety worsened, and I felt afraid. However, as I relaxed in the following days, the feeling subsided.

My most recent crisis occurred yesterday. I became more anxious because I was in quarantine due to contracting COVID-19 (for the third time), and my sense of taste and smell disappeared again (due to the illness). I believe this triggered a recurrence of the symptoms I experienced in 2020. I spent two days crying and had negative thoughts constantly. However, I managed to calm down and took a tranquilizer (alprazolam), which helped reduce my anxiety. I still feel some unusual sensations in my body, but the numbness has improved. However, my tinnitus remains very loud (even louder than before), and my perception of things feels strange again. I believe these symptoms become more pronounced during times of high anxiety.

I haven’t mustered the courage to see a neurologist yet because I’m afraid they might think I’m crazy and won’t believe me, so I still haven’t received a proper diagnosis.

Maria Luiza de Castro Silva
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