Do you consider yourself a lucky person? Well I do, but, it wasn’t that way many years ago. You see, I found out about 6 years ago that I have a rare and incurable disease called Visual Snow Syndrome. What made it worse was the first couple of years, I spent thousands of dollars seeing more doctors that I can have ever imagine in a lifetime to find misdiagnosis or people who had no freaking idea.
Why Do I consider myself lucky? I found a way to live with it and not let this get in the way of my life as much as it does for others. Hearing stories of so many people with incurable diseases is heartfelt and sometimes they can’t just get on with their lives as the disease is truly disabling. In a way I’m grateful for my disease as I can do just about anything in life.
The reason I’ve decided to share with you is for 3 reasons:
- Give you more awareness about Visual Snow Syndrome
- Show you how I Live with it
- Hopefully Inspire you to overcome any challenge that life throws at you
When I cracked and the damage was done
In 2012, I was newly married, lived in a lovely apartment with my lovely wife and life was good. With news of possible child on the way, a secure job and great social life, things couldn’t have been better.
In previous years, I didn’t live the healthiest life. I ate a lot of junk food, smoked cigarettes and ingested many damaging things into my body. I also suffered from an intermittent anxiety in these years which was from a combination of life style and heredity factors.
One day, an unknown fear had struck me. I thought, well the old anxiety disorder is just playing up. I took a week off work to try and rest it off but this amped up feeling of absolute fear would not turn off.
My fight or flight was on 24/7. Adrenaline from when I woke up till when I went to sleep. After a week of feeling like this and taking too many Xanax to keep calm, I went to the doctors and they prescribed me a round of Antidepressants which I had taken previously 2 years ago.
I proceeded to take these so called magic pills which had worked for me previously 2 times before. Unfortunately, this time, this prescription made awfully ill. When I thought things couldn’t get worse I had months of nausea and worsen anxiety along with every other anxious symptom in the book.
Doctors had me cycle through different types of antidepressants but nothing would work. After months off work, I feared the worse, I wouldn’t even be able to support my wife and my new child on the way.
My job as a consultant required me to meet clients all over the city and engineer solutions for them. The problem was I couldn’t leave my place without being in 5 minutes proximity of a toilet and couldn’t even concentrate on a page of text if I tried. Yep…I was doomed and would surely lose my job.
Well, thank my lucky stars that I have a supportive family and supporting boss that understood the difficulty I was going through. But even with all the support, I still couldn’t find the the solution to my constant shaking body that was weak and rapidly deteriorating. Now up to doctor number 5, I was seriously shitting myself as no-one could tell me what was going on.
I had never had so many tests. There were blood tests, urine test, stool tests, MRI scans, X-rays, Electrocardiogram and many consultations. I had really lost faith in what modern day medicine could offer.
How I got back to feeling half normal
In my quest to just feel normal I met a lot of doctors, quacks and healers. I tried many things from hypnotism, Chinese medicine to spiritual healers. One of the doctors I met was not a typical practioner. He was looking at things that other doctors weren’t looking at. He had me try some unusual diets, extreme supplement plans, gave me intravenous Vitamin C and had me shooting up Vitamin B shots daily.
By this time, I had stopped smoking cigarettes, was walking every day, meditating every day and eating a very high nutrient diet. Entering my fourth month of this terrify journey, I started to feel, a little better. Feeling a little better was freaking amazing. This means I wasn’t shaking, could leave my place more often and get back to work.
My anxiety got progressively better without antidepressants and I was also increasing exercise and doing some acupuncture. But I was still not the same. I had a constant cloudy head known as Brain Fog. This wasn’t just something in my mind, this was a development of a fog in my vision. Like everything I looked at had a haze.
This haze would be better on some days but would mostly hang around. I could barely do my job but managed to scrape by and considered changing careers to something that didn’t require too much concentration.
At this stage, most doctors and specialists put this down to my long ranging anxiety disorder. They all wanted to prescribe but not even consider the cause. I knew that anxiety may have caused this, but I was no longer anxious and feeling better. Why did I have a constant Brain Fog?
Fog to Snow – The weather has turned
About 6 months in, my brain fog had not dissipated. It felt like I was living in a dream constantly and I was stressing that this was not going away.
Well the Brain fog did settle but then a constant fuzz entered my vision. Now this was not a blurry fuzz. In fact I had 20/20 vision, but an overlay of what looked like TV static in my vision. This coupled with a constant buzzing in my ears and high sensitivity to light.
The medical tests continued which all showed a healthy human being. ‘How the hell is this happening?’ I would say.
I started to do deep research and Dr Googled my symptoms to ever weird bloody disease I could find on the web. What a terrible thing to search for. I learned about so many debilitating diseases and listen to the stories of how many lived their sad life.
After digging for about 2 months, I found a community of people that all had the same experiences, the same great medical results and similar symptom. These were all the people that suffered from Visual Snow.
It was amazing to find others that had been through these same pain staking processes to hit a dead end. But unfortunately, this was a dead end. Now with a label for my issue, it was only newly recognised in modern day medicine without treatment or cure available.
The thousands of people that all suffered from this are on a mission to fund research and find a cure. I’m hopeful that one day someone may be able to crack this code but I can’t wait. There is a life to live.
More about Visual Snow Syndrome (VS)
VS seems to be a neurological disorder that primarily effects a person’s vision but can also effect cognition (feeling spaced out) and hearing (constant buzzing in ears – tinnitus).
Additional symptom that most other with VS get as a bonus include:
- Photophobia (light sensitivity)
- Regular visual migraine auras
- Palinopsia (trailing after image like looking into a camera flash, but all the time)
- Entoptic Phenomena (floaters in vision and bluefield entopic phenomena)
- Impaired Night vision
Most VS suffers come back with perfect pass on eye exams and brain MRIs.
Not all suffer from anxiety with VS but in most forums, a lot of people struggle mentally to get by with the symptoms.
All the symptoms are on 24/7 and never go away. So, it’s supper hard to not concentrate on these very annoying constants.
There are some studies being conducted by Professor Peter J Goadsby but I think the pool of people may be too little to get large amounts of funding to get some serious results.
You can find out more Eye on Vision Foundation and you can make donations there.
Some other great resources are:
Plow through the snow and get on with it
So 6 years living with this condition and I have a very full and happy life. I’ve worked out how to live with it and sometime don’t even notice it’s there.
If you’ve just found out you have VS, I can say, the first year can be tough getting used to it. But I want to share with you how I’ve managed to overcome this life hurdle to live with VS and maybe other hurdles that life throws at you.
Below are some of the things that have helped me overcome the challangs of VS and I believe have improved my life with VS.
Accept it and stop asking why me – The day I said to myself, “Vince, you better learn to live with it or you won’t live at all” changed my outlook on the disease. Just the act of accepting took a lot of weight off my shoulders.
I wrote down a list of things that I could not do living with VS. At the time, it was reading and concentration was my biggest struggle. So, the list wasn’t too long but with practice I’ve overcome everything on that list.
Put your focus elsewhere – When all you do is think about something, research it and talk about it, it becomes impossible to avoid it. VS isn’t something that can be avoided, but if I spent less time researching the bad and putting my focus to good things in life, I noticed a difference.
Creating goals and having a quest for something greater in life really masks the VS for me. I’m on constant quests to improve my life and others. Someday I don’t even notice the VS symptoms.
Improve all other factors of health – Working on my general health and fitness has made all other aspect of my life improve. When the average improves, all other symptoms seem to improve a little.
I found diet and regular exercise have helped me cure my anxiety disorder and improve my VS symptoms.
Meditation – This rolls in with the last two points but meditation has helped keep my focus on the important parts of life and improve my overall health. Just 10 minutes a day can have profound effects. Check out all the meditation resources available on this site to start your mediation journey.
Eye Health has been forgotten
Eye health isn’t something that many talk about in the mainstream, but is so important. With VS, your eyes are always straining and feel tired. But even if you don’t have VS, you should take great care of your eyes. I’ve now included more these thing in my health regimen:
Reduce Damage Fats in your diet – The eyes lipid-rich structures and delicate microvasculature of are very sensitive to oxidative stress, which is a major contributing factor in many eye conditions, including macular degeneration. Eating damaged and oxidized fats in your diet can contribute to oxidative stress in your eyes.
Try to eat a lot of healthy non- oxidized fats in your diet for good eye health. This means cook with stable high heat oils like coconut oil and only use freshest virgin cold pressed oils on salads. Also keep high fat foods in the fridge to reduce oxidation.
Bilberry supplements – Bilberry Jam was eaten by WWII pilots to see better at night. The anthocyanins in bilberry can protect the eye from oxidative damage. Include an eye supplement with Bilberry extract daily. I’ve been using Natural Factors, Eye Factor Supplement. Its cost effective and has some other great eye supplements included.
You can buy this from iherb.com and get a 5% discount with this code MKL711 on checkout.
Check out this great article on Eye Health from a nutrition point of view
Work your Eye muscles – I’ve found a few tools and exercise that help my eye stay in tip top shape. These include:
–Pin hole glasses while reading or working on the computer in 5 minute sets.
-Eye Flashing – Close your eyes and squeeze them shut as hard as you can. You’re then going to have your eyes “burst” open. About 10 times a day.
-Pencil Focus – Hold a pencil at arm’s length in front of you and slowly bring it closer to you until you start to lose focus, then slow move it back to arm’s length. 10 times each eye.
-Eye Palming – a Chinese technique of rubbing hands tighter and palming you closed eyes for 2-3 minute sets
An excellent resource if found was this document from Gavin at Natural Vision Pinhole Glasses that explains these exercises in greater detail.
Snow that doesn’t melt in the sun But I still can go to the beach
I live in a climate where there is absolutely no snow and I love hot summer days. I know the snow will be with me for a long time. I’ve accepted it and kind of welcomed into my family.
Since having VS, I’ve accomplished more things than I thought I would of including have 2 beautiful children, building a house, achieving best sales at work for the past 4 years, starting some online businesses and working on this blog.
I guess the message is, that you sometimes must be dragged through crappy times to realize it’s not the end and shift your mindset to get out of the dich. It all start in the mind before you can shift the physical.
I hope this post has bought some awareness to you about Visual Snow and hopefully give you hope if you need to overcome a hurdle that life will throw at you.
Did you have a hurdle that’s come your way? How do you jump over it and keep moving through life?