Spotlight on: Victoria Halliden 🤍 @blondie_runs

“Hi, I’m Victoria – a 41 year old mum of two kids and a massive running fan. I started suffering from Visual Snow exactly two years ago. I was out running when I remember the low winter sun being really strong and distracting, this was coupled with floaters and within 15 minutes I was stumbling trying to get home, experiencing a ‘drop attack’ before reaching my door. I vomited all day but put it down to migraines (which I never had before) and shrugged it off. Only for the same symptoms to appear three days later but, when they subsided, I was left with visual snow, photophobia, palinsopsia, nyctalopia, tinnitus and vertigo. I remember turning to my husband and asking him if he could also see that the walls were all made up of tiny dots.

I have seen ENTs, Neurologists and Ophthalmologists (including 3 MRIs) and have been diagnosed with Meniere’s disease, Visual Snow and Migraines (which I think are all interlinked). No one has any idea what caused it – I am fit, healthy, and vegetarian!

It was hard navigating it in the beginning, I would really dwell on the fact that I could only see the world in ‘fuzz’ and would never hear silence again thanks to the ear ringing. I felt like a stranger in my own body and it was really scary. I haven’t taken on any big challenges since my diagnosis but I am ready to try the 100km race again next May. It will have many obstacles (especially as a portion of this is at night and I have no night time visibility) but the bigger challenge for me would be giving in and allowing it to take over my life. So, if you are reading this because you have just been diagnosed, or suspect Visual Snow, I want you to know that you WILL get through this (especially with the help of this community). Keep fighting!”

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“Ten years ago, in 2012, we presented work at a neurology meeting systematically describing why Visual Snow was not simply migraine aura and was a distinct disease entity. This was not received with universal acclaim, to say the least. In the intervening period, visual snow has come in from the medical ‘cold’ and is being studied actively by a number of groups on three continents. The recognition of the condition, broadening education, and funding research would not have happened were it not for the Visual Snow Initiative. I realize to the many with this often very disabling condition that it seems nothing has or is being done. Progress to treatment is never fast enough nor advances to recognition and understanding. With that said, visual snow research would be idling in a backwater where it not the Initiative. Going forward, we need to double, re-double, and re-double again our efforts for the search for effective treatments and, one day, a cure. Thank you for the Visual Snow Initiative for all you have done and continue to do.”

— Peter Goadsby, MD, PhD, DSc, Professor of Neurology, UCLA, Awarded 2021 Brain Prize

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