Visual Snow Syndrome: My Journey and Cure

Disclaimer: First and foremost I would like to state that I am not a medical professional, but rather somebody who has been officially diagnosed with VSS, a neurological disorder affecting visual and auditory senses, by neurologist Dr. Mark Weatherall. My diagnosis was in April 2019, approximately 4 months after experiencing my first symptoms, and just over 1 year on, I am happy to report that over 90% of my issues have resolved, with marginal improvements month on month. The following is my story, based on my experience: many will read this in the hopes that the changes I made will work for them, and there’s no reason it shouldn’t, but remember that everybody is different, and therefore my recommendations may not necessarily resolve all of your issues. However, several people have now asked for this post and despite it being extremely personal, I thought it would be useful to give others hope that things do have the potential to get better at the very least. Also, please note that the pathology for those with lifelong VS (i.e from birth) and those whom acquired it later in life seem to be vastly different, and as a result, I cannot speak for how my recommendations will affect those experiencing the former. Ultimately, the purpose of this post is for it to be helpful by providing another anecdote: if you have any questions, please do not hesitate to leave a comment and I’ll endeavour to get back to them as soon as I am able.

Also, at the end of my post, I have created a link to a collection of screenshots I collated in relation to improvements and full recoveries made by others. Feel free to check that out too! 🙂

How It Began

After a stressful few weeks in the winter of 2018, I began to experience severe headaches that ranged from aching to stabbing, as well as weird burning sensations that would spread from my head to my face and neck. Around 3 weeks into this, I started to become very anxious – I had never experienced headaches like this before, and as my mother had had a debilitating stroke in her late 20s, I stupidly thought it was my turn. Days filled with little sleep and terrible panic attacks went by, with numerous trips to the hospital, but I was often ignored and sent home with the comment, “It’s just a migraine.” I tried various anti-migrainous medications (propranolol, naproxen, sumitriptan) none of which dulled the pain, and was left to get on with it.

It was in late December that I woke up to what looked like television like static across my entire visual field: everything in sight was covered by a grainy overlay. I felt physically exhausted, dizzy and nauseas constantly, and no amount of rest or medication helped. In early January my symptoms worsened, and I began to experience the following (please note that the dates in brackets refer to how long these symptoms took to resolve completely):

Light and sound sensitivity (3 months)
Static (7 months – gone completely in the day, bit grainy in pitch black)
Strong afterimages (10 months)
BFEP, with excessive floaters (5 months)
Starbursts (10 months, marginally ongoing)
Halos (5 months)
Ghosting (7 months)
Double vision (8 months)
Shaking vision (reduced but ongoing)
Poor night vision (7 months)
2D vision (4 months)
Tinnitus (8 months)

On top of this I experienced non-visual symptoms that included:

Dry eyes (5 months)
Eye pain (4 months)
Muscle spasms and twitches (3 months)
Sinus isses (3 months)
Attacks of numbness and weakness on the left side (2 months)
Chest pain (3 months)
Gastrointestinal issues (2-3 months)
Heart racing excessively on minimal movement (3 months)
Dizziness and disorientation (5 months)
Depersonalisation (5 months)

Of course, the variety of these symptoms led many doctors to believe that I was suffering from hypochondria and anxiety, but my GP wanted to push through and conduct numerous tests to rule out anything sinister. I had extensive bloodworks done, an MRI of my brain, carotid arteries and cervical spine, as well as chest x-rays, abdominal scans and neuro-opthalmological testing. After weeks of analysis, I was given the all clear, but from my research I found that this was quite common for those experiencing VS.

My Appointment with Dr. Weatherall

Despite my tests being negative, I knew something was wrong. I did some investigating and decided to see a neurologist familiar with the disorder to give me some kind of explanation and hope for improvement. After looking at my medical history and doing some tests, Dr. Mark Weatherall quickly confirmed that I was experiencing VSS. He made clear that this is a condition that has only recently gained a lot of momentum, and described the phenomena as a neurological issue stemming from the brain’s incapacity to filter natural processes. Static, after images, BFEP and such are all normal phenomena, even tinnitus, but those who do not have VS are able to filter that information out.

He had explained that he has had patients who have woken up with it after surgery, experienced its onset after a severe migraine or even a concussion, and that its cause is relatively unknown. I have heard of individuals who have had it after giving birth, taking illicit drugs and even had it as a result of taking a vaccine. It seems to be a disorder able to present itself due to various stresses on the body, and although varied in its cause, the way in which it is described across the globe highlights that it is, in fact, the identical phenomena being experienced by everyone.

Based on research, his recommendation of taking B2 (400mg), COQ10 (400mg) and Magnesium Citrate (600mg) came from a time when medical research presented VS to be very closely linked to migraine. He said that although this has been disproven somewhat, there is still a relationship there, and he believes that those who have VS are naturally unable to metabolise the existing B2, Magnesium and COQ10 in our bodies, so supplementing could help. Trying this regime for ideally 6-8 weeks, or for longer if possible, could help your symptoms, but I am aware that some have tried and experienced no improvement in their symptoms. I personally tried this and noticed a gradual improvement, though I have to say I stuck to that regime for around 4 months.

Above all, the best news that came from this meeting was that there is hope. He has seen around 110 patients with VSS and explained it as self limiting, in that he has personally seen individuals, both his patients, and Dr. Goadsby’s (the leading neurologist studying VSS), where symptoms have resolved on their own without medicinal intervention. He stated that some of his patients never came back to him, and he suspects that this is because things had improved or become bearable for them. He also explained that VS often goes misdiagnosed and unreported, and he imagines that there are many people among those individuals who will have improved too, statistically speaking based on results with his own patients. The medication he mentioned to me that has shown some improvement among his patients was Keppra, but I wanted to avoid heavy medications for as long as possible as I know how bad side effects can be, especially after hearing that some SSRIs actually have the capacity to cause VS.

One other important thing he mentioned was anxiety. A lot of the VS community hate hearing this, and at the time, I did too, but there is truth in that anxiety does push this disorder to a level that can become soul destroying. He told me he understands that this condition causes significant anxiety and depression, but the key is to treat both the VSS and anxiety parallel to one another, as one fuels the other. Tolerance to VS symptoms will likely improve if your anxiety is controlled and that made a lot of sense. I found in the first few months my days were spent constantly being afraid of what I saw, but as soon as I accepted that there was no imminent danger, as well as believing I would improve and trying to live a normal life, my attitude and symptoms began improving for the better – but more on the specifics later.

The Course of Action

When all of this began I was in a state of panic: I had no idea what was going on and neither did most doctors. I felt like the future of my health lay in my hands, and I took it upon myself to read hundreds of medical articles pertaining to VS treatment, as well as speaking to those who experienced and overcame VSS. Most recommendations from those who improved, or completely resolved their symptoms, had the same underlying message: address your overall health, both body and mind. This seemed to make sense after a while as since there was no real evident reason for the development of the disorder, at least one a doctor could identify, I thought of it as a powerful warning from my body to me. Something obviously wasn’t quite right, either chemically, hormonally or whatever it was, and I may never know the real answer, but this imbalance had obviously manifested itself in a visual and auditory way, and although depressing, it’s useful because it cannot be ignored. As stressful as it is, after a while I realised that since this disorder could never be ‘out of sight out of mind’, I would always be working hard to address my general health to improve it, if not cure it. Please note that the changes I am about to discuss didn’t result in linear improvement, the journey with a recovery from VS is very much up and down: in fact, 3 months into my regime things got a little worse as my visual field began shaking on movement (kind of like oscillopsia), which didn’t help the already upward battle.

A lot of the VS community online seem to sideline those that improve by insinuating that they are psuedoscience supporting quacks that are bullshitting a vulnerable group of people in order to push an agenda. Though there may be a few individuals that have used VS as an opportunity to make a quick buck, there are too many regular men and women I have spoken to that have simply improved and shared their stories with no links to buy a miracle pill and no overpriced coaching sessions – just an insight into their story. I don’t know if the stubborn refusal to believe that it is possible to improve, and that there is no such thing as a permanat state of being, is due to a feeling of jealousy or due to Western indoctrination so fierce that the idea of anything other than standardised packaged medicine aiding your health has now become inconcevable for most. You need to understand that the list of symptoms I experienced were so intense, and so all-consuming that I was unable to function as a human being for several months. The improvements I have listed are legitimately quantifiable, as I often conducted measurable experiments on myself to see how much progress I was making. For example, when it all first hit, I was unable to see myself in a mirror from 1 foot away due to the density of the static: it was completely distorted and fuzzy. Every few months that went by I realised that I could make my face out from further and further away from the mirror, to today, where I’m standing 10 feet away from my mirror and am able to make out a small coffee stain on my jumper – great, right?

Regardless of any negative attitude towards people who have gotten better, too many people have asked me to share my story. If it benefits even one person, then for me it’s worth it: God knows that I scoured the entirety of the internet in search of people who improved to give myself hope in what was probably the darkest time of my life. I want people to be able to come back to this post and remind themselves that things do get better, and if it got better for me, an ordinary 25 year old London girl who is now able to do normal things like attend a crazy go-karting session (as pictured in the feature image), it can get better for you too. Below are a list of things that I believe aided my development. Before you go on to read these, I want you to understand two key things.

Firstly, this is not a quick fix. The changes you make will not mean you are VS free by next week. These are long term lifestyle changes that are going to be difficult to implement: you have to persevere for as long as you physically can. It took a whole year for me to see changes, and people that I have met in the VS community have improved after 2, 3, and even 7 year marks. Everybody is different, every case of VS is different and thus: every journey to improvement will be different, which leads me smoothly on to my second point.

Making these changes might not necessarily cure you as it did me, but I need you to take into consideration that a majority of the anecdotes you find online regarding improvements encompass the below details – and that isn’t a coincidence. If after making all the effort of change, you don’t see any positive changes to your vision, I can at least guarantee that it will improve your overall health, which will put you in better stead to deal with all the problems that VS may cause for you and more. And who knows, maybe in several years, it may all just disappear as randomly as it appeared. All I know is, if somebody told me this when it first hit, I’d make every change possible even if there was only a chance as little as 1% that meant I’d be closer to my normal self in the future, and for me it worked for the most part.

What Helped

1. Extensive Testing

The most important thing to address when all of this happens is that you have extensive testing to ensure that there is nothing more serious going on in the background. For most, VS is relatively benign in that it has no immediate health impact other than the distortion of your visual, and for the extra lucky, auditory senses. However, some people can experience VS as a result of more serious medical complications such as Multiple Sclerosis, and so, to give yourself peace of mind, you need to be able to comfortably say that you have done enough testing to know it isn’t something imminently dangerous. There is a bit of an issue with this step however, as when you have an illness that is confusing to almost every medical professional you speak to, you find it hard to stop the testing period. I personally spent months in this phase because I wanted to be sure that I wasn’t dying, which I felt like I was. I had diverse symptoms that sent me to numerous medical departments, and there were times where I felt absolutely exhausted from being in hospitals and being sent away, to the extent that I came to the realisation that trips to A&E were not solving my problems, they were worsening them due to the stress, anxiety and depression it was causing to be turned away with no aid.

What I would suggest is that you prioritise appointments with your GP for generic bloodworks and xrays, as well as getting a referral to a neurologist and neuro-opthalmologist, who will undoubtedly want to see MRIs of your brain. If you have other symptoms, like gastro issues (which I had) it might be worth getting an abdominal scan: though when I got mine, it was all clear. The point I’m trying to make here is do what you need to do to ease your mind, but realise that you may be chasing an answer that the medical community may not have, and this relentless chasing will tire you and depress you to no end. After you’ve done what you need to reassure yourself that you aren’t going to drop dead in a few weeks, just stop. Of course keep seeing your neurologist and undertake treatment plans that they propose with your own discretion, but stop hunting for an answer, because guess what? 95% of the people I have interacted with on the VS group on Facebook (which has now amassed more than 10,000 members) have no real medical problems other than VS itself. If you stop looking for answers regarding why it happened and what specifically is happening, you can focus your energies on making changes to fix it, even though it’ll be a bit of a stab in the dark at first. At the end of the day there are no real medications that can fix this, and there are no obvious processes recommended by doctors, so you have to try things and listen to your body, which is the next best thing. After all, isn’t that how we survived and evolved over the last two millenia?

2. Diet

Recognising the validity of the statement, “Let your food by thy medicine and medicine be thy food” my first course of action was to address my diet. At the end of the day, what we put into our bodies has a huge impact on our health. Things like processed food and sugar alter our brain chemistry, and the hormones injected into our food interfere with our own hormone regulation, so there was certainly a lot to consider. My diet has always been relatively clean, as I never eat ready meals and hardly ever have junk food, but I did have a lot of takeaways in my time, as well as the occasionally crap that slipped through. Please do watch documentaries such as ‘What the Health‘, ‘Forks Over Knives‘ and ‘Supersize Me’ – all of which are available on Netflix. Although I am not promoting veganism, these documentaries provide a great insight into how certain foods can affect our body, with particular focus on the impact of processed foods, which is where I took most drastic action.

When it came to my diet overhaul, I initially just cut out as much processed food as possible. If it came in a packet, or had an ingredient in it that wasn’t a raw, natural food, I didn’t have it. I genuinely just reverted to having clean organic meats, vegetables and fruits for about 7 months and did my best to cut out processed sugar as much as possible – of course, as I got better over time, I became a bit more relaxed with these rules, but by and large, I stuck to it. This doesn’t mean that your food now has to be bland and boring, but rather you need to really take care of what chemicals, additives and preservatives you are ingesting. Many packaged goods you’ll grab off the shelves will still contain E numbers, MSG and other toxic rubbish, and if you want your body to heal, the best starting point is giving it the nutrients it needs. I understand that fresh foods, especially those that are organic, can be very expensive and out of reach for most, but I urge you to consider the cost of your health. It’s invaluable.

3. Supplements

I think one of my greatest developments occured when I started seriously researching the health benefits of various supplements and incorporating them into my regime. Although your vitamins and nutrients are best taken from the food you eat, sometimes one’s diet simply may not be varied enough to ensure that the minimum daily recommended allowances are achieved. Furthermore, many people’s bodies are unable to efficiently metabolise vitamins to the extent that an adequate amount is absorbed into the body. There are also numerous other factors that affect your vitamin intake, a common one, for example, is that countries in the Northern hemisphere do not often get enough sunlight, which causes a lack of Vitamin D, an absolutely vital vitamin for our body, in entire populations.

What I would first do is try to get a blood test to see if you have any deficiencies, and base your vitamin intake on that, but the vitamins I have used the last 8 months or so are listed below, seperated by essentials (ones I took every day without fail) and additionals (ones I took in short bursts here and there based on how I was feeling). I cannot stress enough that you do your own research on this to ensure you understand the purpose of each vitamin, what dosages are appropriate for you, as well as which ones contraindicate the others – for example, never take Iron and Zinc at the same time as it can cause gastrointestinal distress. I cannot specify the quantities I was consuming for every one below as every individual is different and should base their intake on recommended daily allowances, however whilst some vitamins are fat soluble, meaning they dissolve best when consumed with food, others are water soluble, meaning you can take them with water at any time to ensure optimum absorption. Again, do your research on this and ensure you have a regime set in place if you are going to try supplements, as it would be pretty awful to have dished out a whole load of cash on supplements, only for them to be consumed incorrectly and thus, not metabolised by the body.

The brand I used has exclusively been Viridian (unless otherwise stated in brackets) on the basis that they are organic, clean supplements with no added sugar or copper. But there are many reputable brands across the world (another being Solgar) and as long as you check the ingredients to make sure there are no random additives in the capsules, then it should all be fine.

Essentials:
Omega 3 Fish Oil 1200mg (Wiley’s)
Vitamin D3 2000iu
Ester-C 900mg
Magnesium Citrate 300mg x2
COQ10 200mg x2
Probiotics (Optibac)

Additionals:
Iron
Zinc
B2
Turmeric
Ashwaghanda
Bilberry and Eyebright
L-Theanine
5HTP
Acetyl-L-Carnitine
Spirulina (Synergy Natural)
Chlorella (Synergy Natural)

4. Exercise

Exercise is a really important one, not just for your general health, but for healing your body in times of mental and physical weakness. When we exercise, our brain releases various chemicals that boost our immune system and improve the functioning capacity of our bodies. I hardly ever exercise unless I’m trying to lose weight, but in this instance, around 6 months into VS I really started taking it seriously after hearing that people who improved their VS had incorporated things like cardio and yoga into their daily routines. It really doesn’t have to be too technical, as long as you get your heart rate up for at least 30 minutes each day, even if it is walking your standard 10,000 steps a day at speed, it’s enough. I’m no scientist, and really wouldn’t do the specifics justice, so I have linked a Ted Talk that excellently explains the various benefits of exercise and how it changes our brains for the better.

5. Sleep

When my headaches first started appearing, the anxiety and worry meant I was getting about 3-4 hours of sleep a day, for several weeks. I felt depressed, run down and exhausted on top of all the symptoms, and it was when I really started focusing on getting good quality sleep that I began to regain the energy, motivation and mental stability required to improve. People don’t really realise that good quality sleep is as important to our bodies as food and water, after all, we spend a third of our lives doing it. Moreover, our bodies are designed to rest and repair during sleep, and I found that the more I was getting regular, undisturbed sleep, the better I was feeling the next day. I think exercise really helps with this: if you are active enough during the day, you will be as physically tired as you are mentally, and so when you get into bed you are more likely to fall asleep quickly and stay asleep until the morning.

What really worked for improving my quality of sleep was setting blue-light filters on my electronic devices to ensure my body is ready to shut down by the end of the day, not drinking any water 3 hours before bed time so I wouldn’t wake up in the night, and most importantly, setting up a regular sleeping schedule that meant I was sleeping and waking up at the same times everyday for as long as I felt I needed to. Some people only really need 6 hours of sleep, but I feel my best at 7 to 8 hours each night. I would try to ensure you are asleep by 11pm, as deep sleep is best achieved in the earlier hours of the evening.

6. Preoccupation – Family, Friends, Hobbies and Work

Another thing that really helped me survive the initial stages of this was preoccupying myself, initially with family and friends, as I was in no shape to engage with hobbies or work. Of course the topic of conversation was always around my illness, but even so, the point is essentially to get out of your own head and interact with other people to stay sane. A lot of the first weeks involved sitting around with my family and chatting, crying and talking about life. As time went on, we sat around watching shows or going for walks. I know I can say for sure that my boyfriend is probably now triggered by every board game on the planet as all we did day in and day out for a good few months was play boardgames, as I was reluctant to look at screens.

It is difficult, but you have to preoccupy your mind with other things to ensure that your primary focus isn’t your visual problem. I know that it is hard for it to be out of sight out of mind, but in the end, I found that despite being a visual problem, that is not true. I am absolutely certain that any time I was deeply engaged in something, I was able to cast my mind aside of the visual difficulties that often initially got in the way. This took a lot of time, but it did happen in the end. Even now, with some residual symptoms, I go by days without thinking about any of it, and that shocks me since at the start, I thought about it every minute of every day.

When I started to improve a little, I pushed myself to get a part-time job to give me some diversity with regards to my day-to-day. My family have an organic wholefoods store, so I worked there for 5 hours one day and it was probably the most horrendous experience of my life. I was tired, dizzy, disoriented and confused. Everything was shaky and miserable, and interacting with customers put me on edge. At the end of my shift, I went home and cried, and felt pathetic that I couldn’t even manage a shift at such a simple job. I didn’t want to go back, and I actually didn’t for a few weeks, until I plucked up the courage to go again. It was still crap, but I just kept pushing myself and trying until I realised that at about 10 attempts in, I felt absolutely fine. I wasn’t dizzy, it wasn’t too much and I could do it. After two months I went back almost full time, doing roughly 30 hours a week, and although I was exhausted, I was training my body to do it, and it was doing it successfully. Roughly 3 months on from that, I was functioning as I normally would have, and was ready to get back to my original profession.

It’s now been almost 4 months, and I am working full-time at a FTSE50 data company as a Client Relationship Manager, and I am having no difficulties. A lot of my symptoms have disappeared of course, but even the residual ones I barely notice because I am so engrossed in enjoying my time and growing my skills at work. Also, I don’t know if you have noticed, but being in an educational or working environment means you are interacting with other people, which means that it isn’t always about you and your problems. You realise that there are dozens of people around you with their own issues and hardships, and that despite it all, everyone wants to talk about work, politics, TV, music etc. It is good, both for your mental and physical health, to work up towards throwing yourself back into these environments if VS has made you withdraw from them. It helps your brain shift focus, and in my mind, that shift in focus has almost made me forget the VS altogether. There are times I sit there and I force myself to see an afterimage like I used to, and I just can’t see it. It’s almost as if casting it aside has made my brain completely forget what it all looked like during the severe stages. I still do see minor afterimages if I am in pitch black and look at my phone screen and look away, but I no longer get it off random objects and people in the day, which I used to get all the time.

My point is, remember what you loved doing and do it again. Of course, start small: speak to your friends, go swimming, do some colouring, listen to music, cook a meal etc. Then let it grow: start exercising, watch shows, play games, go to a restaurant, try a part-time job etc. All I know is, I started small and I kept pushing myself to reach normality, and after a year, I’m finally there.

7. Accupuncture

I was always the type of person to laugh at things like accupunture, and cast it aside as random mumbo jumbo that people were conned into. But of course, desperate times call for desperate measures and in the end, I gave it a go because I was willing to try absolutely anything to get better.

Boy, was I wrong. I partook in around 10 weeks of accupuncture and it was probably one of the best decisions I ever made. When you go to an accupuncturist, initially you’ll have a consultation where you can discuss all the issues you are having, and the consultant will then decide on the best approach for treatment. Although the first few didn’t make me feel any different, after a while I had a greater sense of energy and clarity. It was in this period that my BFEP had significantly reduced, as well as a lot of the flashing and weird visual anomalies. I also had loads of gastrointestinal issues and body pain that were completely eliminated in this period, which I think was aided by my taking up yoga too.

8. Therapy

I really think speaking to a professional in the initial stages of this is quite important, as going through a complicated illness that not many people understand is absolutely heartbreaking and demoralising. You have essentially experienced a trauma, and some may even say a bereavement with regards to health, and so talking through your emotions with somebody that can help break down negative thought patterns might be useful to you.

I spoke to a CBT trained counseller for about 3 months at the start, and after I had felt like I had spoken through everything I needed to, I stopped seeing her. Therapy seems to have a stigma around it, but it is essentially just an opportunity to discuss what’s on your mind with an impartial individual, who is trained in techniques to help alleviate some of the emotional difficulties you are having. What I would say is, don’t knock it ’till you’ve tried it – it certainly helped me!

9. Tracking

The human memory is a fickle one, and sometimes we are unable to remember absolutely fundamental changes in our lives. Especially when it comes to illness, we can become complacent and forget how far we have come.

One thing that genuinely helped me through this was making a list of symptoms I had at the start. Originally, I had done this to share with my doctor, but what I actually found over time was that I was using it for something much more important to me.

You see, when I first got sick this list was huge: there were about 25 different things under a heading of ‘Symptoms’ in the notes app on my iPhone. But over time, I had to create another title underneath called ‘Improvements’, which is where I would move a symptom I no longer had. Of course the first time I did it, it didn’t look that impressive. 24 symptoms and 1 improvement in a month, great! But over time, as things changed and improved, the improvements category got bigger and the symptoms category got smaller. When there were ever occasions in my journey where I felt that I had stagnated with regards to improvement, or I just felt as though nothing had changed and I was still living in hell, I was able to refer to my list to remind myself how far I had really come.

Make a list, and make it extensive, and as things chop and change, update it. If you ever forget where you were at the start and where you are now, reminding yourself will give you a huge mental boost, and keep you motivated to reach the end goal of completely eradicating your symptoms category.

10. Attitude

Understanding the significance of neuroplasticity is extremely crucial – our brains don’t just stop developing and changing when we reach adulthood. Everything we do and don’t do impacts our wellbeing.. that includes each and every thought. Whether or not something is real or imagined, neurons fire in our brain and chemicals are released. From a neuroscientific perspective, imagining something and doing something aren’t always that different. An example is from Norman Doidge’s book, The Brain That Changes Itself. Some neurologists conducted an incredible experiment: they told one group of people to raise their index finger up and down 15 times, 3 times a day for a month, and they told another other group to imagine in detail lifting their index finger 15 times, 3 times a day. By the end of the month, the group who physically did it gained 30% muscle mass on the finger and the group who imagined it gained 22%. This is not an isolated incident. Scientists all over the world have proven the power of visualisation, meditation and exercise in healing and improving the way our brains function. That’s why, it certainly makes sense that the account of people with improved VS have taken up such things as extensive exercise, mediation, healthy eating and much more. Most of all, the people who seemed to have gotten better are also those who have adopted positive attitudes. Achieving these things take time and patience: being positive in a time like that can be very difficult but I cannot stress enough that it was this shift in outlook that was one of the greatest steps I took to improve my vision. And even if the end result isn’t what you wanted, you will have gained a healthier body and mind with brilliant strategies to cope with the anxiety and depression that this disorder can bring. Once you have those strategies, you have equipped yourself for anything that may come your way for the rest of your life. I am absolutely certain that changing your attitude is the biggest step, and a documentary titled Heal on Netflix is an excellent one to watch on that.

I’d also really recommend reassessing how you utilise social media to monitor your situation. A lot of people with VS have joined the Facebook group and use it to ask questions and monitor updates on developments in the VS world, but this can be both a blessing and a curse. Although the group had been very useful to me in the initial phases of getting VS, I found that I became very obsessive and spent hours a day browsing it, to the extent that I wasn’t doing much else because all I wanted to do was reassure myself that what I was experiencing was normal. The problem with this is that your life becomes completely orientated around VS, and you are constantly seeing panic-stricken anxious updates from people about all of their different issues that may not necessarily apply to you, but that you may suddenly start noticing – which is an incredibly dangerous situation to put yourself in.

The group is a useful thing to be a part of at the start to meet like-minded people and ask some burning questions, but after you have taken what you need (which for me was anecdotes regarding improvements to reassure myself that things would get better) I recommend you leave the group, at least until you are more emotionally stable, so that the posts on there do not feed your anxiety and fears. Remaining in the group for extended periods of time can have a negative impact on your attitude, which I believe will seriously impact your recovery. Many people who have improved had left the group in order to preoccupy their minds with subject matters other than VS, and that is a really important factor to consider for your general wellbeing and mental health.

11. Gratitude

To those of you struggling, I know how hard things can be, and it’s never a suffering contest, because your pain is valid, but I ask that you try to be grateful for what you do have. The woman in this video I have linked at the end is deaf and blind, and still finds a way to find joys in life. She is relatively independent, and even boards trains on her own to travel by using the sensations of movement to determine where she is. My own mother had a stroke 20 odd years ago and doesn’t have the use of her right arm and leg and is often in pain, but she is still happy and grateful for what she does have and is living a full life eating good food, travelling to see her family, going shopping and gaming. What has happened to you and I is saddening, and it may have robbed some months and years from us, but try not to waste too much time wondering why it happened and wondering why things aren’t getting better when you aren’t changing things up to see what helps. If you want change, you have to make change, and the best you can do is try.

12. Acceptance

Acceptance is something I hated hearing in the initial phases of all of this as I absolutely refused to accept the fact that this was my life, and I was stuck with shitty vision and what many would consider, ‘a broken brain’. But I don’t want you to accept your current state and move on with your life, I simply want you to accept that this is how things are for now. It does not mean you are stuck like this, nor does it mean that your situation cannot improve, but simply taking a moment to accept that you are going to have to deal with VS for a chapter of your life will genuinely help you recover. Below is an amazing video that highlights the sentiment, “You are not stuck with the brain you have, you can make it better.” It is Ted Talk from a man who has conducted studies based on 87,000 brain scans, with evidence that you have the power to improve your brain function through simple lifestyle changes – ones that I have already mentioned, in fact.

https://www.youtube.com/watch?v=MLKj1puoWCg

I’m Not 100% Just Yet

A stark reminder to you all that although I have seen miraculous improvements over the last year, I am not 100% yet – rather lingering at around the 90%-95% mark. My vision still jitters when I walk, and there are moments that I do have bizarre visual anomalies, but those don’t bother me because I always remind myself how far I have come, and how few of those original symptoms I have left. I feel happier, stronger and healthier, and I have gone from being bed bound, depressed and crying for months to having a brilliant full-time job and social life packed with activities ranging from dinners to demanding holidays. When I first got VSS I genuinely thought my life was over and that I could no longer be normal, but if anything, I am now more appreciative of my life and am living it to the absolute fullest with nothing holding me back. Anyone can get better, and many people have. Don’t let somebody else tell you that your VS is permanent when people are recovering from ‘terminal’ cancers and life-threatening strokes every day.

Evidence Beyond Myself

As I said earlier on in this post, I scoured the entirety of the internet (facebook groups, reddit, youtube, VS tapatalk forum and personal blogs) to find stories of recovery. One of the things that really helped me get through the first couple of months of this was knowing there was a way out: that if it was possible for at least one other person out there to cure themselves, there was no reason why it wouldn’t be possible for me. So I spent several days collating screenshots of posts I found online that indicated positive changes and saved them in a folder. In times of fear, worry and doubt, I would look through them and remind myself that it can get better, and if I ever felt as though I was stagnating with my recovery, it would remind me that people improved at different rates. I used to look at those screenshots for hours a day, and then it gradually turned to once a week, to once or twice a month, to if I randomly had a low mood. It has now come to a point where I don’t actually remember the last time I looked at them, but despite not using them anymore I still appreciate their value, and so I would like to share it with you. If you click this link, you will be taken to a post with all the screenshots I took. I hope that in addition to my story, the several hundred short stories on there will push you in the right direction to recovery by reiterating the first step: believing that it is possible.

I hope that this post gave you some hope to carry on fighting this thing, and that it is a useful source of information to come back to. I will likely post an update 6-12 months on from this to catch you up on how I’m doing, so if you would like an update on that please do follow my blog from the link on the right of this page – that way you’ll receive an email every time I post on here. 🙂

108 Comments

  1. Cho

    Hello! Thanks for your post. I have one question: Is your Coq10 ubiquinone or ubiquinol?
    I also have visual snow since last year (July) and your post gave me hope. My visual snow getting better since 3 months ago! Hope mine and yours completely cured!

    Like

    1. Aila Bicer

      Hey there! It doesn’t say on the bottle, but the one I use is the Viridian CoQ10 200mg with MCT.

      Glad to hear of your progress – hopefully we’ll both be completely free soon! 🙂

      Like

      1. Cho

        Thanks! And I have just one another question! Do you take supplements in essentials and additionals category everyday or once in few days? I wonder because some people say it’s not good to take a lot of supplements.

        Like

      2. Aila Bicer

        I take the essentials every day and the additionals once every few days as it can become very expensive! Unfortunately supplements are so that our bodies don’t always effectively metabolise it, so it is quite difficult to do harm with an overdose. Of course too much of a good thing can cause problems, but that is why I recommend you do your own thorough research on these supplements, speak to your GP about any concerns and ensure that you continue to get all your vitamins and minerals from natural sources too (food!) 🙂

        Like

      3. Pete

        I have to say this was one of the worst things I have ever read. You would have most likely gotten better having not wasted all that money on those supplements, and for the record, ashwagandha is not supposed to be taken continuously. It will downregulate your GABA receptors and result in rebound anxiety.

        I see you refer to those preying on peoples weaknesses offering a ‘magical pill’, but really, you’re not that different having written this article. This extensive article essentially lures people in with a bit of false hope, just to push the bullshit premise that ‘exercise, diet and sleep cures all’. All for what? A couple of clicks on your article? Generate some ad revenue did it?

        Like

    1. Aila Bicer

      Hey Chris, I had only ever experienced a visual migraine aura twice before first getting VS and never again. I have a few migraines over the last year, and the symptoms were always present regardless. Since I still have shaky vision, I would say there’s a chance I’m experiencing a minor silent migraine in the background but that’s just a guess 🙂

      Like

  2. Amy

    I’m sorry but most of this just based on anecdotal evidence, it seems to me that your Visual Snow got gradually better over some time by itself and then you applied the recovery to all your sudo cures. By all means, continue, it can’t do you any harm to follow these diets, in fact, I think it’s a good idea, but don’t imply it has been the reason your Visual Snow has gotten better. I have followed a very similar diet for most of my life due to my Mum being very into vitamins and minerals (not a bad thing) with no change at all, if I were to go off your reasoning I would have been basically immune from getting Visual Snow in the first place. Doubt you’ll approve this message, but at least I’m getting through to you. The reason we get upset is that we see these posts often, most of us are already trying it and have been for many years with no change at all. It is irritating to see people keep posting misinformation and hindering a real cure.

    Like

    1. Aila Bicer

      Hello Amy, as you may have noticed, I state that this is my personal journey and that the changes I have made may not necessarily work for everyone, thus highlighting that it is anecdotal evidence from the onset. With an illness like VS, one that is so rare and more recently gaining medical attention, the initial stages will always be based on anecdotes and small group studies to research what factors are involved in the causes and improvements. Therefore tests and subsequent solutions are always found over time with people coming forward with their stories and medical professionals analysing them and introducing strategies for treatment. If you had read the entirety of my post, which you clearly have not, you would have realised that diet wasn’t the only element of change, and that neuroplasticity and many other components play a huge factor. I also linked screenshots to about a hundred other cases that highlight positive improvement through lifestyle changes, and as a result, this cannot be ignored as a possibility. It is hardly misinformation if the methods have worked for many people, and maybe your case is different to those whose changes have been affected by lifestyle adjustment and that has left you frustrated. However, that does not mean that your case invalidates everyone elses, and therefore the negativity you are displaying here is rather unnecessary. I made these changes based on research, a lot of which was also sourced from medical journals and the opinions of neurologists, and if it has worked for more than myself, which it has, then that is enough for me to write this article in the hopes that it would help at least one other person who doesn’t have the information I had access to. I was asked to share my story by many people on the FB group who really valued my post, and have already received several thousand views with many people now reaching out to inform me that they had made such changes themselves, and that it had worked for them. The Visual Snow Initiative also contacted me to share my story on their Instagram and Twitter, and at this point sharing knowledge is everything. If nobody shared their experiences, especially one that led to a cure, then we would be more in the dark than ever, with no support hub available for those seeking it. If you choose to ignore the advice on here then that is your choice, but do not be so arrogant to label it as ‘hindering a real cure’ when people have made changes, cured their VS, and made the effort to share their journey whilst you evidently spend your time being a critic instead of weighing up the evidence and trying to find a cure for yourself.

      Like

  3. Chris

    Hi Aila

    Ok that’s interesting about the headaches.

    Its amazing symptoms disappeared but it’s strange how floaters and BFEP did since floaters are bits of broken vitreous and BFEP is white blood cells, so normal eye activity.

    How severe were your after images? Do you not get them at all now.

    Its fascinating that so many of this disappeared for you.

    Like

    1. Aila Bicer

      Hey Chris,

      The issue with BFEP is that although floaters and the like are ordinary eye activity, and most people see it in moderation, is that people with VSS almost have a broken filter that means you see it more densely and frequently than those without VS. When it first started for me, my vision was littered with floaters and now I can barely see any if I tried. Though I am not a medical professional, based on my experience, I feel as though improving the neurological defect that is the processing of vision and sound improves the capacity at which you can filter out the normal eye activity.

      My after images were quite severe – I would see them off every object whether light or dark and it was in negative form. Now I don’t see them off any objects during the day, but have extremely light and brief ones if I am looking at my phone screen up close in the dark and look away, for example. Though even then, a year ago those afterimages in the dark were much more pronounced and would last for 10-15 seconds as opposed to the light millisecond flash that remains now. I suspect that over time, and with general care to my health, that will improve too.

      Thanks!

      Like

  4. Chris

    Hi Aila

    Thanks for replying.

    I’ve started with a lot of the supplements you mentioned. I dont have the static just a lot of the other symptoms.

    Hopefully my symptoms start to improve like yours did that yours continue to improve!

    Like

    1. Daniel white

      How did you improve your tinnitus? I kinda mimic you with most of those symptoms

      Reactive Tinnitus
      Sound sensitivity
      After images
      Light sensitive
      Tingling and pain in head & face
      Shadows
      Aura
      Shakey vision
      Floaters
      BFEP
      Shaky vision

      Like

      1. Aila Bicer

        Hey Daniel,

        I don’t believe there is a way to improve any one symptom directly: the aim is to change your lifestyle to implement healthier choices in an attempt to ensure your body is best able to fight this thing overall.

        All the best,

        Aila

        Like

  5. Enza

    It’s all new to me I have had it since January 29,2020. I have most symptoms if not all the symptoms and it’s discouraging and hard to live with. Taking it day by day

    Like

    1. Aila Bicer

      Hey Enza,

      I understand how hard it can be, especially when it first hits, but with some dedication and patience, you will be able to manage the symptoms and work on different strategies to help you improve. It takes time, but it’s possible to recover completely!

      Take care of yourself,

      Aila

      Like

  6. Michael

    Hi Alia,

    Just wanted to say thank you for writing this blog, I found it a few months ago and it really was a turning point in my outlook on this condition.

    I haven’t got severe Visual Snow, but I have had tinnitus, migraines and then VS appear all within a month period from November last year and it gave me incredible anxiety which lasted for months.

    Soon after I read your blog by reducing my stress, using meditation and improving my sleep I think my VS actually calmed down a bit (or I was possibly noticing it less).

    However, recently it’s started getting a bit worse again and I occasionally get a migraine or migrainous symptoms, which is making me consider a few changes to my diet (although I’ve always been pretty healthy) and in particular looking into taking some other supplements.

    I just wondered if you could answer a few questions for me about your use of them.

    Firstly, I noticed your comment above about taking the Essentials every day and the Additional ones every few days. Did you still take them all now? And have you consistently taken all of the Additionals every few days as well? Because you’re right, they do get pretty expensive!!

    Out of the Additionals are there any which you think might have helped the most? It seems like it’s pretty hard to tell if a supplement is having a positive effect or not! I’ve been taking Omega-3 and Vitamin D3 for a while now and can’t say I’ve noticed any discernible change…

    And is there a reason you didn’t take B2 often when it is generally mentioned alongside Magnesium and CoQ10 as being useful in relation to people who have migranous brains?

    I have spent a lot of time looking into lots of supplements myself, but it gets pretty overwhelming with all of the different forms, doses, ingredients and potential side-effects/interactions (which generally put me off of some of them, even though I think the side-effects are minimal or rare, especially as I don’t take any medication for anything).

    Thanks a lot for your time and for writing this blog.

    Michael 🙂

    Like

    1. Aila Bicer

      Hi Michael,

      Thanks for your kind words, I really appreciate it and am glad the post was useful to you!

      I’m sorry to hear that you’ve had a spike in symptoms after some improvement – what I can say is that battling with complicated nuerological disorders is never a linear upwards trajectory. There will always be ups and downs where you might take a few steps back before taking more steps forward!

      I believe I took all the supplements consistently for about 7/8 months, but after noticing a lot of improvements I got a bit complacent and stopped.. because my God is it tiring to take pills every day in that quantity! I still occasionally take them as and when, probably once or twice a week, but I focus primarily on the essentials and even more so on trying to eat nutritious whole foods that will naturally provide the vitamins and minerals I need.

      Of the additionals, I focused mainly on L-Theanine, based on how much it improved my sleep, and Turmeric and Zinc, based more on how excellent they are for your general health. Of course it is hard to discern how effective each one is, as well as which is working on what (or if you’re even absorbing them for that matter!), but from my experience and research I felt that they were doing more good than harm, and I saw rapid improvements whilst I was really taking care of what I was ingesting (be it supplements or food) as opposed to now where everything is relatively stagnant whilst I am much less careful about my diet.

      I was more reluctant to take B vitamins due to the fact that it can be quite easy to overdose and have negative neurological effects, especially because I naturally get a lot of B vitamins from my diet (huge meat eater).

      I definitely understand that it’s overwhelming to understand and effectively utilise supplementing for an illness that is very hard to combat, but it really does take time and a lot of research. Of the things I mentioned, the only interactions are if you take Iron and Zinc together. Nothing on that list has personally caused any side effects for me, but of course, everybody is different. I tried a garlic supplement whilst I was going through gastrointestinal issues and it gave me such an upset stomach that I never really used it again; instead, I upped the garlic, ginger, turmeric and chilli content in my food in order to try to incorporate the health benefits in a more natural and sustainable way.

      I think at the end of the day, VS is a long term illness and as a result, we have plenty of time to go through a trial and error process, be it regarding supplements, meditation or coping strategies. If you want to take it easy on supplements and focus your efforts on a different area for a while, that may be the best course of action for you. 🙂

      I am absolutely certain we all have an excellent chance to get better, even if we don’t hit 100% for years. But ultimately, the human body is incredibly resilient and powerful, and even though I believe I have recovered to about 90%, I am living and functioning as I did before VS began, and for that I am really grateful. If anything, I appreciate my life even more now than I ever did, and I almost see it as a personal challenge to beat this thing in my lifetime and help as many other people as I can.

      Feel free to stay in touch via my social media, always happy to have a chat!

      All the best,

      Aila

      Like

      1. Michael

        Thank you so much for the detailed reply!

        I’ve been reading a lot about L-Theanine as well, I don’t have too many problems with sleeping, although my sleep is fairly disturbed and I have mad dreams, but I was thinking about maybe trying it anyway to see if it improves it a bit more. Do you mind sharing which one you bought?

        Which turmeric supplement did you take as well? It seems there’s quite a few different supplement types of curcumin with different levels of absorption and apparently some cross the blood-brain barrier and some don’t. It’s all pretty fascinating, but as you say, it’s quite a lot of work reading about everything!!

        It’s great hearing about the things that were effective for you. It’s really been eye-opening how much the saying ‘you are what you eat’ rings true. I literally never knew how much diet and nutrients could affect us and our brain chemistry, be it through either an excess or deficiency in certain vitamins, minerals etc., our gut bacteria and so on. It’s actually an interesting topic to learn about, although one I would rather have come across in a different way!

        Thanks again for the info. I’ll definitely get in touch via Instagram if I’ve got any further questions 🙂

        Like

      2. Priscila

        Hello
        my name is Priscila
        your story gave me hope
        I would like to know where you got the information that the visual snow could be triggered by vaccine or stress ????
        please if you can help me in that sense I thank
        thanks

        Like

      3. Pawan

        Hi Alia,

        I am from India and my name is pawan.

        I am suffering from snow vision syndrome and want to connect with you so please provide your phone number.

        You can also contact me through whatsapp – +919884654937

        Like

  7. Usam

    Hi Aila,
    I acquired VSS exactly one month (25th of February) after your post, you really don’t know what happens a minute later.

    I was perfectly 21 healthy male walking happy in the streets of Alexandria Egypt, decided to get a haircut at the barber, he had loud speakers that banged my head for 3 hours and the problem I never gave attention because I got tinnitus like a one time in my life when I was young that lasted an hour or so (didn’t even know that ringing is called tinnitus), got out with a loud ring, didn’t pay attention and said it will be gone tomorrow, woke up with visual snow and aural fullness, clicking noise when swallowing and ofcourse the ring but later on I noticed the visual snow where at first I thought I was ill or something.

    24th of February the day before all the crap happened to me I had a massive headache that lasted an hour and had slight humm in my right ear before that I had multiple headaches here and there but who don’t get a headache?

    So I am puzzled was the noise at the barber the cause or the headaches, would I If not have gone to barber prevented the terrible faith? Or just the body decided to turn into safe mode on it’s own?

    I am cosidering suicide every single minute, the thing which turns me nuts isn’t visual snow or tinnitus but the God damn internal shaking in my body especially my hands and feet, I believe it’s called tingling.

    The good news is that ringing stopped at the first week and only hissing sound remained,
    all other symptoms didn’t change and didn’t get worse as well just nothing after that, I am almost 2 months in,

    Did you have that tingling sensation? Was your tinnitus loud then faded as mine and postponed until it was gone? Will I ever recover? I wouldnt mind suicide a second if it weren’t for my family that I love and they love and care for me, but living like this forever nope I will just leave, I had many great things to do in my life all are shattered a minute. Can you give me hope?

    Thank you and please take care of yourself.

    Like

    1. Aila Bicer

      Hi Usam,

      I’m really sorry to hear of your troubles – I know how hard it is at the very start. What I do suggest is that you don’t waste your valuable time pondering the what ifs and whys, as they might not be questions you can ever really answer.

      I can’t speak for your specific dilemma, as my experience was a little different, but what I can say is that I had a lot of weird bodily sensations like tingling, pain and burning all over and that have since completely resolved. I had extemely loud tinnitus too, and after several months that completely died down. I have spoken to dozens of people that have recovered, and so rest assured, it is a possibility. Please do not contemplate suicide on what may even be a fleeting experience for you – some people I spoke to had completely recovered in 6 months!

      You have to stay positive and the best thing anyone with this condition can do is work on their general health. I was in a very dark place this time last year but I have improved so much and have gone back to normal – I have a great life, job, friends and family and am living like I used to before VS. Work on your mental health as it’s initially the first step in coping with this while you adjust and improve over time.

      All the best,

      Aila

      Like

      1. Usam

        I’ll hold of for a year and if I get 20% improvement I’ll appreciate it,

        I wonder if you had that feeling of pressure on your head or neck tension and the feeling of ear clogged with cotton or nothing of those were present for you?

        Like

      2. Aila Bicer

        Hey Usam,

        When I first started getting headaches I had severe neck tension and head pressure for about three weeks, but haven’t had any issues since. 🙂

        Take care,

        Aila

        Like

      3. Enza

        Thank you for your encouragement and trying to remain positive.
        Just one question did you have a funny feeling in your chest. It’s yet so annoying & uncomfortably

        Like

      4. Aila Bicer

        Hey Enza,

        No worries at all! 🙂

        At the start I had weird bouts of chest pain and heart palpitations, but I believe that was more oweing to stress and anxiety about the situation rather than a long term issue. My doctor actually did a 24 hour stress test where they tracked my heart rate as I was quite concerned, and the results all came back normal.

        All the best,

        Aila

        Like

  8. Darren Mooten

    Hi Aila,
    This blog Is incredibly insightful and helpful so thank you.

    Like yourself I have been diagnosed by Mark Wetherall but only had VSS for 4 months which has been tough. Your advice to leave the VS group is a great one because I have noticed that impacted my mood negatively and since leaving my mood has picked up.

    I think you are spot on that the people whom have seen changes have taken a positive approach to life and tried everything possible to control there stress/anxiety and make the necessary lifestyle changes.

    I’ve already cleaned up my diet, taken on meditation twice daily, trying CBD oil as that has apparently worked for others, purchased recommend eye wear and will start twice daily yoga too.

    Your blog is very positive and impacted my to make my own changes whilst borrowing a few from yourself lol

    Very happy you are in a better place in life, your perseverance paid off.

    I have been in contact with various research projects VSI are funding and great progress is being made and I reckon we are not too far off having effective therapies for all.

    Darren

    Like

    1. Aila Bicer

      Hello Darren,

      Thank you very much for your lovely comments! I’m really glad I was able to be of some help at the very least.

      I hope that the changes you have made will have a positive effect on you soon – just keep in mind that overcoming any neurological issue will take time and patience.

      On the therapies front, although the research nitiatives are doing excellent work, I realised that it’s very much the long game to wait on a magic pill. It’s such a complicated disorder with a variety of causes for everyone, and so a therapy/solution might take a while yet, hence my determination to take things into my own hands and work on my general health to help aid the process. In all honesty I really do hope that a miraculous pill will pop up soon as my remaining symptom is still a little troubling at times! But regardless, I’m very grateful for the progress I have made and live a completely normal life now, where I barely think or notice VS in any way shape or form, which I suppose is the end goal besides curing it completely.

      Feel free to stay in touch! Always happy to chat 🙂

      Take care,

      Aila

      Like

  9. Jason

    Hi Aila,

    I am based in London as well.

    My VS caused in October 2017 after the consumption of a single dose of an antidepressant pill – effexor xr (37.5 mg).There were severe stressful events happening in my life back then and the day I took this pill,my vision blurred and got a severe panic attack.

    Of course I didnt take any medication after this single pill and I have seen slight improvement over the last 2.5 years , however still has not resolved though.

    I am thinking to go and see dr. Weatherall as well.

    Unfortunately I have seen many people recovering.Have you recovered or you still have symptoms?

    Have you met people who actually recovered and how long did it take them?

    Months?Years?

    Best Regards,

    Jason

    Like

    1. Aila Bicer

      Hello Jason,

      Sorry to hear that the medication had such an adverse effect.

      My entire post talks about how I have recovered over the course of a year, in great detail, with one or two residual symptoms left.. so I would recommend you read that, as it answers your questions. I also provided a link (https://imgur.com/a/dZ8KpSU) that will direct you to a collection of screenshots of posts by people who have either significantly improved or recovered completely. The time which it takes to recover really depends on the individual, but from my experience the brain doesn’t work in weeks and months, but rather years, so it is the long game I’m afraid.

      I haven’t met anyone with VS in person, but have spoken to a lot of people who have made full recoveries online.

      I know it has been a while for you, but I’ve seen people recover even after the 6 year mark, so really my reccommendation would be to address your general health, both mental and physical, and stay as positive as possible throughout.

      All the best,

      Jason

      Like

      1. Jacqueline Binks

        I think your story is amazing. I was diagnosed with VSS in November 2019 by Dr Owen White who has just been so supportive and kind. My story is very similar to yours, reading your post for the first time in months has given me hope that I to could possibly recover from VS. it also has been soul distorting to my life, without warning I began living a nightmare. I to have removed myself from social media in particular the Visual Snow Initiative, which promises VS patients bullshit . Your story was Amazing! Hopeful! Brave! and so beautifully written, I cried a few times during your post, I’m going to start those changes in my life, as I to refuse to accept that I have to live with VSS my whole life take care Jacqueline Binks from Melbourne Australia

        Like

      2. Aila Bicer

        Hello Jacqueline,

        It’s honestly so lovely to hear that my post gave you so much hope! I think it was reading Norman Doidge’s books that really showed me anything is possible when it comes to the brain, supplemented by the fact that I had spoken to many people who had recovered from VS over time. People recover from horrendous diseases every day and there is no reason that we shouldn’t have a chance to do the same, though it was always clear that it would never be an easy journey.

        You were only diagnosed a few months ago, and when I was in your position it all seemed like an upward battle that I’d never overcome.. but fast forward a year and five months and it’s a completely different world. I’m so much happier and healthier and I genuinely believe with enough hard work and determination we can all improve drastically!

        Please take care of yourself, and do let me know if things do improve in future 🙂

        All the best,

        Aila

        Like

      3. Jason

        Thank you so much for your reply.

        The most annoying symptom that I have is during the night with the street lights and the lights from the cars…

        Did you experience any similar issue and if yes how you resolved it?

        Like

  10. Daniel white

    How did you improve your tinnitus? I kinda mimic you with most of those symptoms

    Reactive Tinnitus
    Sound sensitivity
    After images
    Light sensitive
    Tingling and pain in head & face
    Shadows
    Aura
    Shakey vision
    Floaters
    BFEP
    Shaky vision

    Like

  11. Yannick

    Did you take any anti-depressant or anti-anxiety medication for this before?
    Were you able to watch Television alright?
    What kind of exercise did you find most helpful?

    Like

    1. Aila Bicer

      Heya Yannick,

      I didn’t take any anti-depressents or anti-anxiety medications as I believe that these can sometimes be more of a hindrance than a cure through treating symptoms rather than the cause of our issues.

      Initially no, I couldn’t watch TV at all, but now I certainly can with no issues.

      I think for me, someone who hates to exercise, Yoga and Qi Gong were most helpful, with a few sessions of strength training and HIIT thrown in 🙂

      Best,

      Aila

      Like

  12. Dianne

    Aila, I just wanted to let you know that your blog has been a blessing and a hope. My main symptom is vibrating vision when I sit still, but sometimes would see snow like static over my vision, eye pain, random starbursts, pulsing vision. Was diagnosed with vestibular migraines after a whole bunch of tests but I find that a lot of your symptoms cross over mine too. Regardless, I’ll be implementing your recommendations (and have started to with exercise, acupuncture, spending time with family, and will be buying supplements).

    How is your shaky vision now?

    Like

    1. Aila Bicer

      Hey Dianne,

      Thanks for the lovely comment 🙂 Migraines can be quite tricky, and can both cause and worsen VS, but many people improve once their migraines are under control. I hope that the recommendations help you even if a little!

      I still have my shaky vision, but I expect it’ll be the last thing to go since it was the most recent addition to my VS symptoms. Regardless, I’m really happy with the progress I’ve made and barely notice my residual symptoms at all.

      Good luck with everything!

      All the best,

      Aila

      Like

      1. Ifra

        hi!! im so happy to hear ur success story and it has encouraged me alot! im curious if you experienced loss of constrast sensitivity? does it get better or go away?

        Like

      2. Aila Bicer

        Hello Ifra,

        I’m really happy to hear that it was an encouraging post. I didn’t personally experience a loss of contrast sensitivity – if anything, my vision felt too vibrant on occasion and I often felt as though things were too bright. That faded quite quickly, however.

        I’m sorry I couldn’t be of more help.

        Best,

        Aila

        Like

  13. Enza

    Hi!!
    Hope all is well. Just lately I’ve been getting shortness of breath and exhaustion .Did you experience these symptoms. These are symptoms of POTS. Have appointment with my neurologist May 29.

    Like

  14. Marissa Channel

    Wow that was strange. I just wrote an incredibly long comment but after I clicked submit my comment didn’t appear. Grrrr… well I’m not writing all that over again. Anyway, just wanted to say excellent blog!

    Like

    1. Aila Bicer

      Hey Marissa,

      Ah that’s annoying! I’ve had that happen to me on here a few times too, must be WordPress bugging out. I appreciate your comment nonetheless! Thank you 🙂

      Take care,

      Aila

      Like

  15. Amanda

    Hello! What an inspirational story!
    It is possible to experience BPEF without the VS?
    Did you take all those essential vitamins at once?
    How did you change your diet?
    I have so many questions lol

    Like

    1. Aila Bicer

      Hey Amanda!

      I think BFEP is quite common and experienced by many people who don’t have any other visual anomalies. I hear it resurfaces more during migrainous periods and can come and go depending on that. There seems to be an issue with the brain being unable to filter certain things it normally does, but it doesn’t mean it’ll never be able to repair that filter over time.

      I took the essential vitamins every day for a while and had the water soluble ones in the afternoon and fat soluble ones after dinner. It’s best to do your own research on these however.

      My post thoroughly explains diet changes: I cut out processed food and junk and focused on eating wholefoods. Organic fruits and vegetables with a minor reduction in meats and dairy due to the fact that they can often be pumped with hormones that may interfere with your own.

      Hope this helps!

      Best,

      Aila

      Like

  16. Luigi Heimsness

    Hey there would you mind stating which blog platform you’re using? I’m planning to start my own blog in the near future but I’m having a tough time deciding between BlogEngine/Wordpress/B2evolution and Drupal. The reason I ask is because your layout seems different then most blogs and I’m looking for something unique. P.S Sorry for being off-topic but I had to ask!

    Like

    1. Aila Bicer

      Hey Luigi,

      Thanks for your comment.

      No worries at all – I’m using WordPress and have paid for a premium subscription in order to have access to a wider variety of themes and tools. The WordPress theme I am using is called Gema 🙂

      All the best,

      Aila

      Like

  17. Rodwan Houalla

    ^^^^My story for those curious, I beat Covid19, had a panic attack, took Lexapro got VS..

    Lexapro induced mine (small dose for a week or two)… Your story is amazing and I’m making huge improvements in my health, following a lot of your advice to a T, not just for VS but to tackle my total health as well, never thought an Anti-depressant would ironically destroy my life

    (I’m also looking into TMS treatment which is a new frontier)

    I have all of the symptoms of VS but I’m not severe YET…

    To combat symptoms (I’m a few weeks in and tortured by the prospect, of leaving my house it’s beautiful outside and I feel like I can’t enjoy it, I’m getting FL-41 glasses in the hopes of regaining my lifestyle and joy)
    To heal from VS (I’m blessed because my family belong to a health club with a bunch of resources like Yoga, Hottub, Sauna, Pool etc.. I also really love meditation and sensory deprivation which is a new trend, I’m already in the postiion and lifestyle to overcome this.. If I can habituate enough to leave my room… )

    I’m afraid to Doordash too because of the dizziness/ disorientation

    I’m committing to this on the long haul, god I hope I can see clear blue sky just one more time… I’m trembling writing this… why me!? echos in the mind of all new VS people
    I have a lot of resources and I’m a gifted problem solver, I can have faith in those things…

    I just wish I knew why SSRI’S do this to some people?

    The tough part is resuming life, but it’s also the most liberating, I have to force myself to take a walk and just accept what I see… I can’t stay in my room forever or I’ll eventually drive myself insane..

    I’m forcing myself to ride my bike with ordinary sunglasses on
    (FL-41’s gotta look into them)

    Like

    1. Aila Bicer

      Hey Rodwan,

      Thank you for your comment. I believe we spoke on Reddit regarding all this, and I wish you the best of luck with your recovery. Anything is possible in my opinion: when this first happened to me I was practically in a catatonic state, unable to enjoy anything and with little hope. Over time, I adjusted to the situation and gradually gained the strength back to fight it one step at a time. I’m now more or less recovered, have a demanding job and am enjoying life.

      I’m confident you’ll be able to do the same 🙂

      All the best,

      Aila

      Like

  18. Caroline

    I am very moved Aila to fall on your blog, because my symptoms started on the same date as you and are the same as you .. it makes me want to fight. I am so happy for you. with floaters, did you have entoptic phenomena?
    Yours

    Like

    1. Aila Bicer

      Hello Caroline,

      Thank you for your lovely message! I had every symptom under the sun, with entoptic phenomena being an annoying one at the start but definitely not my main concern. It’s quite common in people without VS too, so it didn’t scare me much, but was one of the first things to go away after I began changing my lifestyle.

      I hope you get better one day too!

      Best,

      Aila

      Like

  19. Caroline

    haaa I just understand that this is “BFEP”. lol did you see them only in the sky or on other surfaces outside?
    I even have it on the faces of people I talk to outside, sometimes …

    Like

  20. kunal choudhary

    Hi Aila Bicer,

    I had been suffering visual snow from past 2 years.I have floaters and flashes,tinnitus,after images, and other visual and non-visual symptoms.
    so, i have a question to you is that
    when i was running and jogging i experienced some lighting like lightening thunderstorm in sky (light sparks ) and vibrating vision.

    Is it safe to run and jog and other physical activity.I does not make me blind

    Infact when i move my eyes from left to right,up to down in that case i see light sparks as mentioned above.

    Please! suggest me how to overcome such problems and reduce my symptoms
    as i feel alone as no can understand me except you.

    My all medical report came normal.

    I have other problems which does not effect me largely.

    THANKS FOR SHARING YOUR HARDWORK WITH US

    (Sorry for bad english)

    Like

    1. Aila Bicer

      Hello Kunal,

      I am sorry to hear of your visual difficulties – I know how tough it can be. As mentioned in my post, I am not a medical professional and cannot diagnose you. It is best to seek the advice of a doctor in this instance, especially if your visual symptoms intensify with physical activity.

      The only recommendations I can give you are the ones I have already explained in my post.

      Best wishes,

      Aila

      Liked by 1 person

      1. Kunal Choudhary

        Hi Aila bicer,

        Thanks for replying my question.

        1) My another question to you is that disappearance of floater and BEP is due to taking supplements listed on your blog or may be due to lifestyle changes ?

        2) Do you still have oscillopsia like symptoms or disappeared?

        3 )Do you still get shocks (looks like electric lines ) while running,jogging on your vision or disappeared or not experienced?

        4) Do you still see pressure (looks like dark circle on vision ) on eyes when you move eyes too left or too right ?

        My questions are quite irritating but,just asking for confidence.

        Thank you again for sharing your story, your blog had given me hope.

        Thanks again.

        Like

      2. Aila Bicer

        Hi Kunal, no worries!

        1. It’s really hard to relate improvements to any one change. I believe it was a combination of all the lifestyle changes I made 🙂

        2. Unfortunately I still have oscillopsia, the one symptom that seems to be persisting, but it has improved significantly from the start, especially over the last 3 months.

        3. I don’t believe I have experienced this!

        4. I did used to get that, even bright lights, but not anymore.

        I hope this was helpful 🙂

        Best wishes,

        Aila

        Liked by 1 person

  21. Irene

    Hello Aila, I just want to thank you so much for sharing your story. It gives me hope in this dark period I am going through. I have the same symptoms as you plus lots of tension pain in the neck and head, all since a couple of months ago when I had a big shock/scare that I was going to become blind it completely changed my and my family’s life. Every day I read your story, hoping my vss improves likes your. Please give us am update when you have time. Take care, Irene

    Like

    1. Aila Bicer

      Hello Irene,

      No worries at all – I’m glad it has given you hope!

      I used to have a lot of severe shoulder pain and tension, as well as migraine headaches, which have thankfully now subsided. I think it’s important to remember that just as your vision changed for the worse, it can change for the better too. Think of this period as a chapter of your life rather than a permenant issue. It may take a while to improve, but there’s certainly a chance it can if you make the right changes and address the potential cause to your problems.

      I’ll likely do an update in December 🙂

      Best wishes,

      Aila

      Like

    1. Aila Bicer

      Hello Shan,

      Thank you for your lovely comment, I really appreciate it 🙂 Always glad to hear when people find the blog useful!

      Best,

      Aila

      Like

  22. Alex g

    hey, i have mild vs and i wanted to know if yours got worse over time or did it stay the same, also, over what span of time did the vs fully develop or gey worse (if it did) and how long did it take you to cure it to the 95 percent.

    also, how are you as of today, any better?

    Like

    1. Aila Bicer

      Hi Alex,

      I’m a bit confused as I believe I answered your question in detail throughout my blog but just to reiterate, it developed over the course of 3 months and has improved over time to the extent that I no longer have it now.

      Best wishes,

      Like

  23. Jebediah

    Hey I wanted to ask about the diet part, did you ever consume carbs like rice or pasta? what about dairy? I feel like just meat, vegetables, and fruit wouldn’t give you enough energy unless you’re burning ketones for fuel instead of carbs.

    Like

    1. Aila Bicer

      Hello Jebediah,

      I did have rice and pasta occasionally, and more so now, but in actuality you don’t need those food groups to incorporate carbs into your diet as there are plenty of complex carbs in vegetables that are better for you, especially potatoes. Nuts, seeds and legumes are also incredibly high in carbs, so you don’t need processed wheat (like in bread and pasta) for energy – this is also made clear in various leading food and health documentaries.

      Funnily enough, it was my neurologist that told me to steer away from bread, rice and pasta as gluten can cause neurological issues for those with sensitivity and wanted to ensure he was looking at every avenue for my problems.

      With regards to dairy, I never really took it out of my diet. Where I could, and especially with milk, I switched to organic products to (hopefully) reduced the number of hormones and chemicals in the food, but other than that, my diet has always consisted of dairy.

      Hope this helps,

      Aila

      Like

      1. Jebediah

        Thanks for the response! I’ve been thinking about cutting out dairy because a few other people have said that has helped them.

        Did you ever have allergies of any kind? My sinuses go insane every morning and night and I notice a lot of people with VS have allergies, maybe this could be a culprit.

        Sorry to bother you with the questions. Thanks again 🙂

        Like

      2. Aila Bicer

        Hi Jebediah,

        No problem!

        It’s interesting because I actually developed full blown allergies for the first time mid last year, several months after VS. It’s mainly to dust and pollen, nothing really related to food at all, but I’ve found that minimising dairy (mainly milk as opposed to eggs, kefir or yoghurt) has aided my skin etc. I’m sure overconsumption of dairy can be harmful in that it contains potentially harmful hormones that may interfere with your own, but in the end it’s all speculation.

        Try and test things and see how your body responds! It’s the best way of finding out 🙂

        Best,

        Like

  24. Irene

    Hello Aila,

    Hope you are doing well. I wanted to ask you about the tinnitus? I have all the same symptoms and tinnitus is the one that bothers me the most. Do you have any advice on how to ignore it? It stresses me a lot and of course stress isnt what I need right now to cure myself from all this. Did you also experience lots of neck and shoulder pain? It’s now two months that I have severe neck and shoulder pain and that confuses me about where my vss is coming from, anxiety or neck problems. Thank you in advance for your time. Best regards, Irene

    Like

    1. Aila Bicer

      Hello Irene,

      Sorry to hear about your tinnitus – I think learning how to ignore it at the start is the hardest, but over time your brain should tune it out. The best way to begin doing that is by changing your reaction to it: if you always react negatively to hearing it (anger, fear, worry), it’ll be harder to overcome as those feelings will rush to the forefront as soon as you tune into it.

      I had a lot of neck and shoulder pain at the start for several weeks which I believe was migrainous in nature, but haven’t had any issues since.

      Anxiety and emotional trauma can manifest in your body, so my advice would be to try and address your health on every level you can. 🙂

      Best wishes,

      Aila

      Like

      1. Susana Ontiveros

        Hi Aila,

        In regards to your afterimages. Did these blur your vision at times? I’m currently experiencing this and blur my vision when I focus on something and then I try to look at something else.

        Like

  25. Sam

    Hey,

    I’m really struggling to get my GP to take my symptoms seriously, they keep saying its all down to stress and anxiety. How were you able to convince them into referring you to neurologists and obtain MRI scans? My GP just wants me to take SSRIs and call it a day. It’s really frustrating as I truly feel that something is physically wrong with me and really want stuff to get checked out before going down the anti-depressant route. Did you get tests done privately?

    Sam

    Like

  26. Anthony

    Hi, I just wanted to say thank you for this blog. I have had VS since as long as I can remember. But, over the last few months. My lifestyle has been turned upside down due to being furloughed because of covid. I have gone from being in shape and healthy. To a complete cough potato with anxiety issues. A few weeks ago. I woke up and noticed that my VS was a lot worse. It had went from something I see sometimes at night to seeing it all the time.

    Do you think these changes could help me? Have you ever spoken to someone who has had it for a long time and managed to make some sort of recovery?

    Like

  27. Vinod Shamugam

    Hi Aila,

    Thanks for such a long but informative & neat write-up!!

    My wife recently got diagnosed with Narrow angle glaucoma & did Laser iridotomy!!

    Since then she had varuous complaints with developing Iritis, blurred vision, foreign body sensation & recently grains in her vision.

    We did take OCT scan , CT scan & consulted with a retinal expert and everything looks good.

    Recently, she started seeing grains in her vision & that’s wen we did CT scan & blood work and all came back good with no issues.

    But worried abt her grainy vision. It’s not getting any better but she is scared,

    I am clueless as to what to do next, since her ophthalmologist, allergist & general physcian said he eyes are healthy & her brain scans & blood work is all good. Any help is really appreciated!

    Like

  28. Chris

    Hi Aila
    I have had my MRi all come back clear which is fine but my neurologist has just discharged me now.

    I am thinking of having an appt with Dr Weatherall but want to know if he was happy to prescribe meds if you wanted them. I have had symptoms 1 year now and I am prepared to wait but think I would quite like to try Lamotrogine or Keppra.

    Hope you’re well. All the best

    Like

  29. Irene

    Hello Aila,

    I see the person above me asked you about the ear clogging..I have that too since I developed vss. Did you also have this problem? That you ears where clogged all the time, like when you travel by airplane.

    Please let me know, since my doctor thinks this comes because of jaw not being right in place.

    Thank you so much for helping us!

    Regards, Irene

    Like

  30. Malin

    Hi my name is Malin and I am 47 years old. I have had eye noise for over 27 years. but experience that I get a deterioration every year and then have such a hard time accepting this. I get anxious about having this. but then I manage the acceptance. Then comes a new increase the following year and so it goes. Is that something you experienced. I am from Sweden and trying to translate your text into Swedish. But what did you do briefly to catch your eye noise? mvh Malin

    Like

  31. Maya

    Bonjour aila
    Est ce que tu avais des traînée ou non c est ce que me dérange le plus je suis très anxieuse pour le moment et le traitement keppra est ce que vous l avez pris ?? Merci de me répondre
    Mes salutations maya

    Like

  32. Rachael

    Hi
    Your post gives me so much hope and its what I have a read of when things aren’t going so great. I have issues with neck/jaw and shoulder tightness which seem to make my vs and tinnitus worse. I just wondered if you also found things worse if you were sat or laid in a certain position?

    Anyway thanks again for this wonderful post,
    Take care

    Rachael

    Like

  33. wv

    Hello,

    Noticed you wrote this in January..how are you doing now ? Is your tinnitus still there, do you still see floaters and BFEP? Would be interested in a update on your progress. Your blog has helped alot of people, I’ve seen individuals on Reddit post about your blog.

    Like

  34. Cenk

    were your floaters big enough to annoy you ? or just little pieces and how much floaters have you had? lastly how did you manage to eliminate dry eyes and starbursts?

    Like

  35. Xhulio

    Hi Aila,

    hope that you are doing good.

    You mentioned that you were going to post another update after 6-12 months? Are you still planning on that?

    If not i just wanted to know if your symptoms improved more and maybe gone forever during these last months.

    Best,
    Xhulio

    Like

  36. arletta1

    Hello Aila, Hope everything is going okey. Happy to hear about your recovery and thank you for giving us hope. Have a couple of questions🙂when you state the months of recovery , are the months since you start the treatment with supplements or since you get the VSS.
    I will be grateful, also if you can specify which treatment of accupunture you had, is it for anxiety, of for visual processing?

    Thank you in advance, regards

    Like

  37. arletta1

    Hello Aila, Hope everything is going okey. Happy to hear about your recovery and thank you for giving us hope. Have a couple of questions🙂when you state the months of recovery , are the months since you start the treatment with supplements or since you get the VSS.
    I will be grateful, also if you can specify which treatment of accupunture you had, is it for anxiety, of for visual processing?

    Thank you in advance, regards

    Like

  38. arletta1

    Hello Aila, Hope everything is going okey. Happy to hear about your recovery and thank you so much for giving us hope. Have a couple of questions🙂when you state the months of recovery , are the months since you start the treatment with supplements or since you get the VSS.
    I will be grateful, also if you can specify which treatment of accupunture you had, is it for anxiety, of for visual processing?

    Thank you again, regards🙂

    Like

  39. Aragón

    You are awesome! My story is so similar to yours it’s a little scary. I also thought I was having a stroke, my father had one. Head MRI came back fine. I am half way reading the same book and meditating every day. I have not tried yoga, acupuncture and COQ10, I’ll add those to my list. Your story has inspired reassurance and confidence in me. For that I thank you! Thank so much! You are so awesome!

    Like

  40. Giacomo

    I haven’t got much to say. Congrats because being positive and supportive is really important for people searching help about this issue. In my very case I found that optometric exercises have really helped a lot. I do them everyday, three times a day. I use an app called “Eye Care Plus” to help me. God bless you and all of us. A sure cure is soon to be discovered.

    Like

  41. Sean

    Thank you so much for this… I’m three months in and am finally able to watch tv again.

    I’ve also had to deal with some extreme agitation, and it gets worse when I nap!

    Like

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