Happy New Year! This is the second year of Visual Snow Man. Here in part 3 of this annual review I discuss the mental aspect related to Visual Snow. I also mention what I would like to achieve with the website in 2019.
In case you missed it, in Part 1 I took a look back on 2018 and my personal progress. In Part 2 I discussed the issue of speculation over Visual Snow.
The Toll Of Having Visual Snow
A related issue to the topic of speculation that I mentioned in part 2 is that of mental health problems arising from having Visual Snow. It shouldn’t be avoided just because it is at the moment somehow taboo. From my knowledge this is a serious and underappreciated issue.
Parents, family members, friends should be aware of your situation. Ultimately these are the people who can help you if you are going through a tough spot. Whereas the tempting lure of social media may not always be the best solution.
Schools, colleges, universities all also need to have some awareness – I see not much difference practically from something like Dyslexia, with Visual Snow potentially exercising a much broader impact. It is a problem if a child or a student not only may be challenged to read but also finds it fundamentally unpleasant to study or to be in certain environments.
In the mainstream people are starting to talk about how bad depression and anxiety is nowadays (which is great) but really such issues are commonplace, and far worse if you add on top troubling visual symptoms. The average person would not even be able to imagine what it is like to deal with such a thing as Visual Snow – so don’t keep it to yourself.
Mindset
There’s no escaping the fact however that much is still down to you yourself.
It’s not a particularly remarkable idea that how you live your life and your mindset could impact your happiness with Visual Snow.
My symptoms interfered with how I saw, which consequently muddled how I thought and perceived/was perceived; for me that is much improved, I now feel more natural and part of my environment. Perhaps as well therefore I have a decreased sense of detachment, or derealisation, and anxiety. Without light sensitivity there is also I feel better contrast, depth-perception, and less afterimages. That is a significant difference and there’s no rocket science behind what I did. Everyone is different, but everyone can do something.
You shouldn’t be living your life for your Visual Snow but you have to be aware of it – it’s a part of you but it doesn’t define you. Is it better to lead a sensible lifestyle – yes. Will you feel worse about having Visual Snow if you are living a chaotic existence – probably. The decision is yours.
Like others, I can help inform that decision but I can’t force you to do anything, nor can I play a personal role in your life and replace your friends, family, doctor etc.
Everything Takes Time
If you have wondered why I haven’t been posting much in the past couple of months. It’s because I myself am yet to overcome all the consequences of not being in control for so many years.
Contrary to what some people may believe: I am not a superhero and don’t pretend to be. If I spent all my time on the website I would be a hypocrite for not aiming to do what I discuss on here.
The aim for me was always to create a website that I would have liked to have had access to back when I was a teenager and didn’t know how to go about living with Visual Snow.
If I’d had the same attitude, knowledge, and self-awareness that I have now – ten years ago or even a few years ago, I would be in a much better position. That’s a regret I don’t want others to have.
This website was created without knowing that there would be a good organised and well-funded effort such as the Visual Snow Initiative. I am confident now that the path towards a cure will carry on looking more and more promising, and that the problems I mentioned in this annual review will gradually dissipate.
Please do make full use of the resources you now have available – they have not always been a given and shouldn’t be taken for granted.
My Mission For 2019
Overall I am satisfied that with the arrival of the Visual Snow Initiative the understanding from research will growth at an increased rate.
However currently with what is accepted to be known about Visual Snow the suggestions on what you can do about it remain fairly vague. Doing lots of different things to get “healthier” may help but it’s a trial and error approach that’s not for everyone: it requires lots of patience, will-power, and ideally money. Otherwise different people have subjective interpretations based on their existing knowledge and beliefs, which still leaves much open to speculation and potentially dangerous “short-cut” experiments.
My mission remains the same in 2019: I want to help that state of affairs change and help people make well-informed positive changes and decisions.
In 2019 I intend to carry on offering practical advice where I feel it is appropriate, helping to highlight and discuss research, but also taking a closer and more detailed look at individual symptoms, problems, and possible solutions.
Hi Neil,
I’ve just discovered your website. Thank you so much for devoting a great deal of time and energy toward trying to help others. You mention in the article that your light sensitivity went away? Can you point to what helped that? That is one of my words symptoms, and the most frustrating part is when things randomly seem worse, and I have no idea what I might have done differently.
Thank you for your time,
Mary
Hi Mary,
Thank you for your comment. I can’t point to what has helped the light sensitivity for sure or say that what worked for me will work for you. I also don’t know how much you know on this topic already or what your medical profile is. So I will try to give you an answer as best I can but fairly generally, and this isn’t medical advice, just my opinion.
It’s known that light sensitivity is a common symptom in those with Visual Snow, but it’s also not uncommon in people without Visual Snow. Therefore what’s known about light sensitivity in general may also apply to those with Visual Snow and it may be that those with Visual Snow are more susceptible.
It is probably also the case that there are different causes of Visual Snow and depending on each cause there is more or less prominent light sensitivity. Some of the supposed causes for Visual Snow are also considered to cause light sensitivity without Visual Snow. For some of these causes you may be able to do more, some less.
Without knowing specific causes or what makes your light sensitivity randomly worse, some of the general considerations are: inflammation, oxidative stress, mental health, nutrient deficiencies, secondary conditions (e.g. miraine), stress, and medications. Addressing each of those things individually may help something like light sensitivity and other symptoms directly or indirectly.
In terms of what you could do practically is make changes to diet, exercise, supplements and medication, improve secondary conditions, sleep quality and preparation for sleep, use of tinted lenses/sunglasses, reduce eye strain. These are all the things that I do with varying levels of success and that has been my approach which I feel has led to these improvements. It’s not about doing everything at once but rather figuring out where you yourself can realistically improve.
The biggest changes I have specifically made to date and with which I have been consistent in is diet. I currently essentially eat just meat/fish, vegetables, rice, oats, buckwheat and eggs. For the last month I have been entirely sugar free. I very rarely drink alcohol (every few months or so).
Diet is a personal thing and I don’t suggest you copy me, it’s about learning what works for you. I’m stil chopping and changing as we speak.
However common pitfalls to consider I think are eating foods you can’t digest and underestimating the importance of digestion, eating foods you are intolerant to, replacing sugar with Glutamate and aspartame, underestimating the importance of some nutrients while overestimating others and the balance between them, doing a commercial “gym” or “weight-loss” diet.
If you have a secondary condition such as migraine, a viral disease, inflammatory disease etc. you should make sure that you are aware of what might make that condition better or worse. Improvements there may translate into improvements with light sensitivity or other symptoms.
Exercise and diet are the best ways to reduce inflammation, combat oxidative stress, and address dietary deficiencies. Supplements can however help and are particularly helpful when you know you have a specific problem. Supplements such as Quercetin and Resveratrol (or other flavanoids), omega 3, lutein and zeaxanthin are supplements I personally consider beneficial for various specific reasons and perhaps also for light sensitivity.
Certain medications are known to cause light sensitivity, therefore it’s potentially important to understand what side-effects medications may have and look at alternatives if possible.
Not overexciting an already possibly overexcited brain or physically damaging the eyes is also something to bear in mind and probably forgotten about by quite a few. I try (usually not so successfully) to limit screen time for myself. Sleep also suffers in this way when you aren’t prepared to actually go to sleep and it’s really important I feel for subjective perception of symptoms and perhaps objective changes to get good sleep!
I hope there’s some information in that which helps in some small way. Again, the key things for myself was probably improving my diet, adding specific supplements, being more aware of my health in general. There are general changes and more specific changes you might make, but it depends on the individual circumstances. Making holistic improvements is better in my opinion than just half-heartedly doing one thing or another when it’s not known what exactly the cause of a symptom is.
Best wishes,
Neil