Happy New Year! This is the second year of Visual Snow Man and this is the first ever annual review.
In part 1 of this annual review I take a look back on 2018 and my personal progress.
When I Got Visual Snow
When I got Visual Snow just over ten years ago as a teenager I didn’t have a particularly healthy reaction. I worried constantly, obsessing over the sudden changes to my vision, for which there was so much unknown.
I felt nobody could understand what I was going through, and I didn’t know what to do about having Visual Snow. It alienated me from my friends and I shut myself off.
Wherever I went, Visual Snow followed. So I’d zone out at school, only to come home and try to escape reality by looking at a computer screen. In this way I spent what could have been some of the best years of my life. I limply let Visual Snow take over control of who I was.
At the time, the confusion around Visual Snow was greater than it is now. The consensus from research was unclear, nor was there much clinical knowledge or acceptance. This left matters wide open for wild and desperate speculation among those with Visual Snow (and even medical professionals). A dangerous set of circumstances, yet one that unfortunately still persists to some degree.
Like many others, I’d lazily hoped for a magic pill where there was none, and had started to speculate that I myself was to blame for having this condition. I came to think that it was actually impossible to positively affect my symptoms based on what I’d read of research and the scattered suggestions I’d tried off internet forums.
Before The Website
Before I started with this website I had turned to look at earlier health problems from my childhood, because they were at least what I thought I could handle.
Aside from the Visual Snow I’d been very conscious of having periodic eczema, allergy-like symptoms, and breathing problems, all worse than could be considered normal and without satisfying solutions.
When I started to see positive changes from this relating to my Visual Snow, it came as a surprise and motivated me to create this website.
I set out to make further positive changes and try to help others to do so.
For three things in particular I have now experienced a full or significant improvement:
- My light sensitivity has greatly decreased.
- My nose started breathing much more freely
- (later during Ketogenic diet), my body temperature regulation improved.
Either directly or as a consequence of some of these other changes I also believe I notice my Visual Snow less. I certainly have less anxiety about it and what I imagine was derealisation/depersonalisation. Both my vision and mental state seem calmer and sharper.
Those things are more subjective, but ultimately if you notice something less it is arguably in this case just as effective as an objective reduction. While Visual Snow isn’t all “in your head”, your own subjective perception of the situation, as I’ve learnt is crucially important.
Based on my experience I believed when I created this website that it was possible to further improve my associated symptoms and quality of life with Visual Snow. I still believe this to be true, for myself and others.
I initially attributed everything to being dairy-free, and specifically beta-casomorphin 7, on the basis of my personal history and the potential epidemiology of Visual Snow that I uncovered. After some time however I no longer believed that this alone could be so significant*. I got caught up in writing about ongoing research for the website, and in my lengthy Ketogenic diet experiment.
It’s recently, when I came off that Ketogenic diet that I started to think over the early changes and my other symptoms, to return to the universal ideas I was following at the very start, such as aiming to reduce chronic inflammation and oxidative stress in a safe way.
I’ll stop short of saying it’s obvious because I wouldn’t have grasped this at one stage. However to me it seems very likely that such things would negatively affect one’s perception of Visual Snow and other symptoms. For example I fully expect some inflammatory markers may be heightened as a result of the underlying etiology or pathophysiology in Visual Snow. It’s a fairly sure thing when this is essentially a feature for every neurological condition.
Inflammation is a universal reaction and it goes hand in hand with things like oxidative stress. At some point in the near future there is a cerebrospinal fluid analysis study planned for Visual Snow patients, and I eagerly await the results to confirm this.
There are also inevitably individual factors. Yes, if you have dysbiosis, Lyme disease, a dysfunctional vagus nerve, migraines, histamine problems, metabolic problems, food sensitivities etc. that is likely to have an interaction but it may not apply to everyone similarly.
The good news is that there have always been simple and productive ways to go about dealing with these issues of how your body reacts or interacts with a neurological condition. Diet, exercise, sleep, mindfulness etc. fundamentally all this requires is learning, understanding, and motivation.
My suggestion is to think on these sorts of changes and consider your individual case, rather than over-complicating matters.
*However BCM7 and opioid peptides are still absolutely things to be aware of, and the key idea that I stressed there remains the same for me: factors such as chronic inflammation or oxidative stress may potentially interact with symptom severity in Visual Snow, these factors may also be food-derived. Going dairy-free or a1 beta-casein free is still something to consider but it may be more helpful for some than others.
The Speculation Bug
Of course it’s easier to speculate on social media or to put your hopes in a single supplement or internet theory for a cure, I followed that approach for a decade and perhaps hadn’t fully weaned off it in the last year.
It’s much harder to commit to a lifestyle change and tackle the reality of individual issues, but it’s ultimately much more worthwhile.
Click here to read Part 2 where I discuss the topic of speculation in greater depth.