Living with it – some awareness about Visual Snow Syndrome

visual snow syndrome

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:

  1. Give you more awareness about Visual Snow Syndrome
  2. Show you how I Live with it
  3. Hopefully Inspire you to overcome any challenge that life throws at you

When I cracked and the damage was done

My wife and I in 2012

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.

stress from diseaseBy 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.

what is visual snow syndrome
Example of what Visual Snow Sufferers see everyday.
Picture Credit to Wikimedia

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:

http://neuronresearch.net/vision/clinical/snowyvision.htm

http://visualsnowsyndrome.com/

https://www.facebook.com/groups/visualsnowsupport/

https://www.gofundme.com/visual-snow


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.

why does visual snow effect meAccept 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 A glass jug of extra virgin olive oil next to some fruit on a tableconditions, 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.pinhole glasses to improve vision

-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

You can achieve with visual Snow
My lovely family and I at the present

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?

42 Comments on Living with it – some awareness about Visual Snow Syndrome

  1. What a beautifully honest and inspiring account of your journey, I have to say I have never heard of visual snow syndrome before, but I definitely feel a lot more informed now, you are a definite inspiration for anyone who is going through a tough time.
    You are so right when you say that you needed to learn to live with it or you wouldn’t live at all, many of us feel stuck and like we can’t live our lives properly until a certain event or circumstance, but really our lives are happening right now, and if we don’t take advantage of it we will end up looking back and wishing we had done more.
    You are an inspiration and I am so happy to hear that you are living your life uninhibited and accomplishing amazing things!
    p.s. your family is just gorgeous!

    • Appreciate your comment Colleen. I hope this read can help other get out of their rut that their stuck in. When you stuck in it, it feels like an impossible feat. But just know that amazing things are possible if you change your mindset.

  2. WoW! I never even heard of “Visual Snow Syndrome.” Your story is touches people. I’m sorry you had to endure that, but it looks like the found away to adapt and overcome, that is what’s amazing. Best of Wishes

  3. Wow, I have never heard of visual snow syndrome but it is very brave and inspiring for you to share your story. I have epilepsy and sometimes I have symptoms that my doctors do not understand and if it wasn’t for forums with others sharing their stories I would feel all alone. So I am sure others who read your story will feel empowered. I am so sorry you had to experience what you did but I thank you for sharing!

    • Thanks for your comment Melissa. I know, its frustrating when doctors don’t understand or care about your condition.
      If this post can change one persons mindset to a better future, that would be amazing.
      All the best.

  4. Hi Vince,
    I have never heard of visual snow until now. I can only imagine how hard it must have been for you in the beginning. You have inspired me to never give up no matter what obstacles may come my way. You did a great job on your post. Congratulations on all that you have accomplished.
    Marylou

    • Thanks for your feedback Marylou. You words have given me a lot of confidence for sharing this personal story. I will continue to keep accomplishing.

  5. Hi Vince! What an inspiring story you have. I feel so sorry for your condition, but I’m also glad that you find a way to live with it. I wish they will find what’s causing that and then can find a way to heal it.
    I wish you the best, and take care of yourself and your family.
    Caro

    • Thanks for your comment Caro. I’m sort of stop hoping for a cure and keep striving for a great life.
      All the best.

  6. I am so sorry that you are going through this. I have never heard of visual snow. But I can’t imagine myself going through this. This is such an inspiring story that you share with all of us. I agree with you that it is important to learn how to live with it than ask the question why that it is happening to me. There are things that we can take in our hands to change our life for the better, and there are also things we don’t have control over it, and we have to learn how to adapt.

    • Thanks Hong for your comment.
      I think adapting is very useful way to look at difficult situations. Once we accept and adapt, we can tackle obstacles from a different angles.

      • Vince bro ur blog is motivated me so much.. I had visual snow for last 4 months and I felt my life stopped on that point and will. Never be happy again. Try to cope with it but still pushing my self and keep trying ..thx for ur great story it really helped me to focuse more in important things in life ..

        • Great attitude moving forward Adam. Remind yourself every morning about the important things to focus on as Visual Snow will fade away to the background.

          • Hello bro I would like to ask you please do u still drinking alcohol? If u still do. Visual snow getting worse alwyes after u drinking alcohol like other people said? U still doing work out and exercise? Statics become more during the jogging or working out or not ? Thx in advance and looking forward to hear from u about it

          • So sorry for the delayed response. I only drink about once a month but don’t notice a major change in my VS.Only bery slight.
            On the other hand, when I exercise, my VS goes crazy when I’m pushing myself. If I do high intensity aerobic exercises, the static is heavy….that’s when I know I’m getting a good workout in.

  7. Hey Vince,

    I want to thank you for taking the time in writing this. I’ve suffered with this as well since I was little, however i feel it’s gotten more noticeable lately probably due to anxiety as well. Everything you wrote about fear of not being able to live a normal life, constant worry of having a restroom nearby and everything else resonates with me. I feel like I am at a low point in my life and worry often, but reading your story has given me a little hope that I can work past it mentally and continue to lead a happy and healthy life. Thanks again, this read truly helped.

    • Hi Matt,
      I know the tough times seem long and an absolute feat when you’re in thick of it but when you see that glimmer of hope, ride it to better times.
      I found the VS struggle goes in waves but what I noticed that when the rest of my life was tuned for better times, the VS lows are smaller and quicker.
      Appreciate your comment and glad that this post has bought some positive to your situation.
      What have you incorporated into your life that helps you get by with VS?

  8. Thank you for the inspiration Vince. I’ve had floaters, blue field entoptic phenomena, and after images for a little while now. I’ve been trying to become a dressage horse trainer and an amazing rider for years and my clinging to that goal birthed an enormous emotional eruption in me when I developed these odd eye issues about a year ago. I’m not blinded but there’s something there you know? I’ve just begun to notice visual snow and minor tinnitus as well. I hope I will be a success story… lately I’ve been doing yoga and riding as much as I can. The best part is the eye problems I have are just the icing on the cake. Family, or lack there of, and financial issues make it extra fun. I just hope for the best and prepare for the worst I guess. Much life to you and your family, sir. Finding someone else who has this bs vs is relieving.

    • Thanks for sharing your story Jason and hope you can ride out through the difficult times to a better place.
      It sounds like your doing all the right things. Keep moving in a positive direction and you’ll come out better when life throws all the curve balls that come at you.

      I’ve recently had an increase in tinnitus which cause havoc on my sleep (or lack of). Some interesting things I found that I tested positive to the Epstein barr virus (EBV) which was fully active at the time when my tinnitus had got louder. I’m sure this is connected with my VS as EBV is a virus which lives in the nerves and causes our senses to play up. Have you been tested for EBV?

      I’m feeling much better now and sleeping again thanks to an intense high dose supplement treatment.

  9. Vince I’ve had visual snow for 7 years. I too have found out the best way to live with it is to not fight it but accept it. Accepting does not mean giving up it means coexistence. Meditation has been the key for me. Your comments on eye health make sense and I plan on working on my eyes

    Thanks for your inspiration as you know from the Facebook groups there are many people really hurting from this disease and anxiety only makes it worse
    Rick

    • Thanks for your comment and sharing your story Rick.

      I’ve seen all the groups and there are so many people suffering which is happens to all of us when we are trying to find out how fix something that no doctor can help with.

      What I’ve learned is suffering is internal and if you can hit the right mindset, you can be free from suffering and live an extra ordinary life.

      Keep winning.

  10. Hey Vincent. My name is Herbert. Thank you so much for writing this article, I’ve read it so many times. I’m 20 years old and I’ve had visual snow my entire life. I always thought it was normal, that everyone else had it too. It’s only recently that I found out it was a rare disorder and that most people don’t suffer from it. Now, all I can think of is I’m suffering from a disease. And sometimes I feel so anxious and desperate. Right now I’m worrying about fatigue caused by visual snow. Sometimes I feel so easily tired and my eyes get strained. I want to feel energetic again. After you’ve improved your health, did the fatigue go away ? Do meditation, exercise, gratitude, and good nutrition make the fatigue go away and fill you with energy ?
    Thank you so much again. Your articles give me a lot of hope.
    By the way, can you send me your email address so that I can contact you ?

    • Hi Herbert,
      Thanks for sharing your story and glad you enjoyed this post.

      I can definitely say that after I improved all other factors of my health, all fatigue has disappeared and as long as I stay on top of my nutrition, exercise and meditation.

      I have more energy than I every had before and its really strange as I sleep less than I used to. When I was fatigued, I use to sleep 8-10 hours per night and still feel tired but now I only sleep 6-7 hours and fell super energetic.

      I hope you have success moving forward and you can contact me at info@meditsounds.com.

  11. Hey Vin!

    Great post. I completely agree that eye health is forgotten and shouldn’t be. What a story you have and thank you for sharing. I know sharing personal stories about challenges is sometimes hard to do!

  12. Thanks for writing this story.I have had visual snow since 1969. I finally found out in a medical study in 2012 what it was.This is all great advice!

    • Thanks for you comment Tim. Im sure you would of got lots a strange medical diagnosis in the 70s considering today they are General medical still don’t have a clue about it.

  13. HEY’
    4 months ago my life changed.. in 3 weeks i had all the symptoms of vss i went to 13 doctors untill one find out what i have must say i still didnt get use to that and still think my life over.
    im still looking for ways to live with that and not forget theres a good things in life.
    it hard very hard no understand that from now on ill see life different.

    • I know the feeling Shiran. It hard to forget about VS as its always there with your eyes open or closed.

      If you can put your focus on something else, your brain will make the VS disappear for spouts of time. Once I accepted my VS and put my focus on something else, I can hardly notice or remember its there. It may takes some time, but you will get there. Think positive and find that something else to focus on.

      All the best.

  14. Great article.

    I struggle currently. The last 5-6 years has been a struggle with Tinnitus, mostly from noise induced but I’m sure the VS has probably contributed. When earlier this year my tinnitus got a bit better, and I was feeling better for over a week, boom, I was hit with seeing the visual trails again, soreness around my eyes and my static got worse. These were mild for sometime and I almost forgot about them.

    It’s strange to me, how this came back so hard. Do you think it’s possible for anxiety or depression, or even straight up over-use of the eyes, can contribute to making the condition MORE intense. I hate to admit that it just got worse because well, my brain is screwed. I’m hoping my brain has just now focused on this because my Tinnitus was doing better, and I’m stuck in a constant anxious and anxiety state where my mind looks to focus on some issue.

    My static is very noticeable in dim lighting now, but I do not really see it during a bright day. Sometimes I wonder if this is just the natural noise your eyes see in dim lighting or on dark surfaces, and perhaps I’m just more fixated or hypervigillante of it.

    • Thanks for your comment Ryan and hope things improve for you.

      Sounds like we have similar symptoms and my static goes crazy in dim lighting.

      My tinnitus came after my VS and only recently but I do notice it’s louder some days then others. Normally affected by how good my sleep is.

      VS and tinnitus is always there so it’s hard not be fixated on it but sometimes you can become distracted with hopefully better things in life.

      In recent times I’ve been taking Ester C and vitamin B12 and I think it’s been helping with a lot of my symptoms as I believe they are nerve related. Have you tried them before?

  15. Hi Vince. No, I haven’t tried either. I do have a bottle of methylcobalmin b12 from pure I got on amazon, but haven’t tried. How long did taking both before you felt any change?

    Also, I was curious. Does the first .gif VS picture you posted, how you see it in the daytime? I see that in basically moderate lights/low lighting. Also, did you ever develop palinopsia effects like visual trailing (seeing a translucent type extension to anything in motion in your peripheral)?

    I noticed you were also on SSRI’s. I have read from numerous people in VS related sections that some people got their issues from SSRI’s and anti-depression medicines. I’m assuming it triggered something in the receptors in the brain that deal with visual cortex perhaps.

    I really wanted to go on something as I suspect my hyper awareness of my issues, constant state of anxiety over them are leading my brain to see it as a threat and thus, focus on it. But, I’m too scared to try a SSRI or other type, in fear it permanently worsens it. Very unfortunate.

    • Sorry for the delay in response Ryan. My comments were being junked ☹
      As for the B12, I felt results in a few weeks. How are has it been for you?
      My day time visual snow has improved 10 fold since my original symptoms. I think my brain has finally rewired not to notice it. In the dark though, still thick as every.
      I only get trailing in extremely high brightness but I think this is another thing my brain has rewired so its less noticeable.
      As for SSRI’s, they have a place to help. I’m grateful that I no longer need them but when your absolutely crippled from anxiety, they can help you to move in the right direction, which is what they did for me. You just need to have plan to all the other stuff when you start feeling better and continue as you wean off. Just be aware it at least 1.5-2 Year round trip to get on and off SSRI’s safely.
      I hope all is better since you posted this comment.

  16. Thanks a lot for your article. It gives me hope that there is still a life worth having even with VS and that typical problems can be overcome.
    I got tinnitus 3 months ago (moderate, now mild), but also have mild VS since 1,5 months. It has got more noticeable over the past 3 weeks, which might be progression or just my sleep deprivation. I already wanted to change my direction in life before I got tinnitus but now it feels really difficult. My biggest problem isnt so much tinnitus and VS – although bothersome -, but more that I have a lot of difficulty sleeping lately (3 hours on average). After going to the bathroom after 3 hours I just cant sleep again. I worry that my VS is getting worse due to my lack of sleep. I’m pressuring myself a lot. I feel like a wreck, both physically and mentally. I regularly dwell how I am supposed to continue. I find it difficult to practice mindfulness this way.
    Did you have to deal with insomnia when this all started? If yes, what did you do to alleviate that? Did you just push through somehow?

    • Hey Sevv, I ‘ve had the exact same issue with sleep when my tinnitus was getting louder. Waking up after 3 hours sleep then up all night.
      When this first happen to me, I had weeks of no sleep.

      Seriously I didn’t know how I was functioning. It got to the point that I had to take sleeping medication to get my body back into to a sleeping rhythm with whole bunch of sleeping supplements. I was on sleeping meds for a about 3 months with slowly reducing until I was sleeping at least 6 hours per night. I still take a passion flower sleep supplement and use magnesium cream to wind me down before bed.

      I normally wouldn’t recommend medication, but it is really amazing how much better you feel after a full night sleep. You can have a better meditation practice and forward think to improve your sleep.
      I’ve got this post with some sleep tips but my additional tips to help you get better sleep are:

      1. Go to bed later – If you’re only getting 3 hours in. Got to bed at 1am and wake up at 4am. This is closer to starting the day and will get you circadian rhythm back on track

      2. When you wake up, do exercise (at least for 10 minutes). Push ups, star jumps or go for a jog. This will also help circadian rhythm

      3. Read a quote on waking, before you go to sleep or any other time in the day to train your subconscious that you will sleep. I’ve got on my bathroom mirror, dresser and laptop that says ‘I wake every day felling well rested and energetic’.

      4. If you have trouble going to sleep due to tinnitus, listen to a podcast or something that will distract the mind from constant ringing.

      What I noticed that once I was sleeping well again, my tinnitus reduced and wasn’t as loud. Still there though but manageable.

      Hope things improve.

  17. Hi Vince,
    Are you also getting instant palanopsia negative after-images and light streaking. I’m really bothered by it for example I can look at a computer screen or TV for that matter for a micro second and then shift my gaze to the wall, I see a flash of icons on the wall. If I stare at the computer icons for a few seconds,I’ll see a negative after images of the icons on the wall for up to 10-15 seconds. The fluorescent overhead office lights are an instant light streak when I shift my gaze.

    I have also noticed thing that I haven’t heard anyone else complain about and that is when I close my eyes for a few seconds and open while looking at the wall my VS static gets erratic like change in the patter of the snow ihumming and within 10-15 seconds will come down to the usual levels. Also, when I wake up in the morning the snow is thicker and more noticeable for the first 5 minutes or so before coming to its baseline levels.

    Lastly, I want to ask do you also have tintinitus like a shrill whistle in your ears with hissing?

    Thanks,
    Wes

    • Hi Wes,

      I have all those symptoms. The afterimages become manageable and after a while their almost not noticeable unless you have sudden bright light flash you.

      My tinnitus is a high pitch whine which is louder on some days than others. Most noticeable at night.

      All I can say is that I believe most of these symptoms will improve as your brain processing get more used to it or I pray they may just go away as your health improves.

  18. Hi Vince,
    Did you ever had vibration the vision with Visual snow. I see humming and movement when I see complex picture, grid patterns and book lined up in a shelf. Also, I have high sensitivity to light. The reflections from cars, windshields, chrome grills and windows hit me like laser beams and I’ll see after images of it within my eyes.

  19. Yep had all of them which were all worse when I first got VS but has relieved slightly over the years.

    The one which is still strong is the distortion when I look at complex pictures. Stripes make it go crazy and almost like mini hallucination. I would rub my eyes everytime it happen thinking I’m going crazy but now I just stare into the distortion and wonder how the hell is my brain making this happen. Everytime I explain this to someone, they can’t understand what I mean. Wes, I’m glad you understand and I hope your symptoms get better.

  20. Vince,
    Thanks for your reply. I really appreciate you writing your story. What I’ve been bothered the most is that my symptoms have come on gradually over the course of 6 months. Some people say that their symptoms came on like a lightning strike or over a course of a week or two but I have seen anyone complain about VSS coming on slowly over a few months period.

    Vince, I also get this weird sensation all over my body like pins and needles and overall body aches. Even slight pressure will created feelings of numbness and pins and needles sensation and a constant buzzing in my body like a cell phone vibrator. Have you had experienced similar?

    Also, have you tried wearing any color glasses if it had provide any relief?

    Thanks,
    Wes

  21. Hi Wes,

    Yes I did get the constant buzzing feeling when my symptoms started but this went away. At the time my nervous system was on overload and I’m sure it was due to this.
    I’m convinced that mye VS and Tinnitus was caused by a virus in the nervous system like EBV (Glandular Fever virus) which I tested active at the 2 times in my life when symptoms were at their worst.
    The buzzing went away as my nervous system came back to a calm level. B12 supplements help improve my nervous system function.

    I have tried rose coloured glasses, they help with working behind the computer screen but no longer wear them (just became uncomfortable to wear). I still wear blue blockers at night to help my sleep.

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