'I’m stuck at home. I can’t see. I can’t go anywhere. I can’t see my way around where I’m going. I can’t drive. I can’t see my friends. I can’t go to school. I can’t do anything anymore.’ – Jack Lea

What is Visual Snow Syndrome?

Visual Snow Syndrome (often referred to as 'VS') is a rare neurological condition that primarily affects an individual’s vision, but can also affect their hearing and cognitive functioning. A landmark study published in 2014 proposed diagnostic criteria for the syndrome and provides the best definition of VS. According to the study, patients must have:

  • Visual snow (i.e. dynamic, continuous, tiny dots in their entire visual field) for three months, and
  • At least two of the following four categories of additional symptoms (which are explained and visualised on the symptoms page):
    • Palinopsia (afterimages or trailing),
    • Enhanced entoptic phenomena (floaters, blue-field entoptic phenomena, self-light of the eye or spontaneous photopsia)
    • Photophobia (light sensitivity), and
    • Nyctalopia (impaired night vision).

Additionally, their symptoms must not be:

  • Consistent with a typical migraine visual aura (i.e. a migraine that produces visual symptoms), and
  • Attributable to another disorder (i.e. the patient’s eye exams produce normal results, and they have not taken any psychotropic drugs).

In addition to these core symptoms, most patients experience many other additional symptoms; these are also explained and illustrated on the symptoms page. VS affects a patient's vision 24/7, which means that they never have any relief from it – even when they close their eyes, the visual snow and other symptoms are still present. Currently, there is no cure for the disease and it is yet to receive official widespread recognition within the medical profession.

FAQs

Does VS get worse?

Potentially. The progression of Visual Snow Syndrome greatly varies from person to person. For some people, their symptoms are stable and remain the same throughout the duration of the condition. For others, the condition gets progressively worse; they may develop more symptoms over time or their existing symptoms may become more severe.

The opposite is also possible. In rare cases, some people report that their symptoms have actually improved, but exactly why this happens is unclear. In some cases, as times passes patients become accustomed to VS to the point that they can ignore it, giving the effect of an improvement. However, it is often quite difficult to become accustomed to VS in progressive cases as the symptoms are constantly changing, requiring you to constantly readjust.

Can VS cause blindness?

Visual Snow Syndrome is ‘benign’, which means that it will not lead to permanent blindness in the sense that you will only see blackness. Understanding this is important, because one of the main fears that people have when they initially develop visual snow is that they are going to lose their eyesight.

However, in extreme cases if the symptoms are severe enough VS may cause blindness in the legal sense. Though it must be stressed that this is very rare.

What triggers the onset of VS?

Nobody really knows. Some people attribute the development of Visual Snow Syndrome to a specific event, such as a stressful period in their lives. Others blame a migraine that never disappeared, and some say that they were born with it. Evidently, there is no one single cause and in many cases there just appears to be no kind of trigger.

What is the pathophysiology of VS?

A study in 2015 found that patients with Visual Snow Syndrome have hypermetabolism in the right lingual gyrus and left cerebellar anterior lobe of the brain. Essentially, it means that those parts of the brain are overactive. Generally speaking, the lingual gyrus is responsible for visual memory, facial recognition, attention and colour perception and general visual post-processing. A recent research review on VS suggests that the lingual gyrus plays an important role in an active system in normal peoples' brain that suppresses the symptoms experienced by VS patients. It is believed that since the lingual gyrus is overactive in VS patients, the suppression system malfunctions and fails to subdue VS symptoms. It is still unclear exactly what role the cerebellum plays. Ultimately, the research suggests that VS is a neurological problem, i.e. the problem is in the brain, not in the eyes; this would explain why all eye tests come back normal for patients. Nor is VS a sign of a brain tumour, as often feared by some VS patients.

How is VS treated?

There is currently no treatment available for Visual Snow Syndrome. Some patients have been prescribed medication by their doctor. Others have tried to treat it themselves, such as by taking certain supplements (e.g. vitamins that help prevent migraines) and lifestyles changes. Unfortunately, these have all produced very little success. In cases where there has been an improvement, it cannot be confirmed whether this occurred naturally or due to a specific change/treatment.

Importantly, because researchers know more about Visual Snow Syndrome’s pathophysiology and where it originates from (see above), they are now conducting research into treatment possibilities. Dr. Goadsby, Dr. Schankin and others are extremely dedicated to finding a treatment. In fact, the plan is to have a full-time researcher work on this. However, the research has almost come to a standstill, purely due to lack of funds. The Eye On Vision Foundation (EOVF) is the sole charity that is raising funds for visual snow research. Its founder Jen Ambrose suffers from VS, and it was through her efforts that the initial research even took place. As it stands, there is not enough money to fund the next phase of research. Please donate to the EOVF (click here to do so) — each donation brings us closer to a treatment and the end of an ordeal for thousands of sufferers. 

What impact does VS have on the lives of patients?

Visual Snow Syndrome’s impact depends on how severe the symptoms are. For some the symptoms are almost unnoticeable, meaning that VS has little impact on their lives. For others, the condition is very bad and has a huge impact on their lives; this is evidenced by the sad accounts of peoples' experiences with VS which you can watch on the Real Stories page. VS seems to impact patients in three main ways.

First and foremost, the symptoms themselves can be debilitating. For instance, as you can see on the Symptoms page, the visual snow can be so dense that it obscures whatever you are looking at. Or, the pattern glare symptom may make it impossible to read. Therefore, Visual Snow Syndrome can directly impact patients by disrupting routine tasks such as reading, driving or even going outside. Generally speaking, being unable to see clearly can be seen as a significant reduction in quality of life.

Secondly, patients receive a lack of understanding from others. Visual Snow Syndrome is a little-known condition, even within the medical profession. Consequently, friends, family and doctors are often perplexed when sufferers try to explain their symptoms to them. In some cases, they are dismissed as making everything up, or are told to just get over it. Imagine how you would feel if your doctor or closest family member did not believe that you had a condition that was ruining your life.

Thirdly, due to the lack of awareness and information about the condition, patients do not understand their own condition. For years, a patient may suffer from VS, and since they often receive no diagnosis or a misdiagnosis from their doctors, they do not know what is happening to them. For many, not knowing what is wrong with them is the worst part of the condition. Many feel that they are alone, and become anxious that their condition will worsen. As fully explained on the About page, this is why this website was created – to raise awareness of the condition so that people can understand their condition from the very beginning; this can help save years of worrying and help patients come to terms with VS. 

Which conditions does VS often get mistaken for or overlap with?

Persistent Migraine Aura Without Infarction

It was previously thought that VS was a specific type of migraine which lasted for a prolonged period of time called Persistent Migraine Aura Without Infarction. The study in 2014 confirmed that VS is a distinct disorder. Interestingly, many VS sufferers do experience migraines, and a study in 2015 found that patients who suffer from migraine tend to suffer from more severe VS symptoms (i.e. migraine aggravates VS symptoms). It also found that the parts of the brain affected by Visual Snow Syndrome are also affected during a migraine indicating that, although they are separate disorders, there is some overlap in the way they affect each other. The same study also notes that there may be a pathophysiological overlap between typical migraine aura and VS.

Hallucinogen Persistent Perception Disorder (HPPD) and drug usage

Drugs do not cause Visual Snow Syndrome; this was recognised in the 2014 study because many patients are children, and therefore cannot have taken any psychotropic drugs. There is, however, a very similar condition called HPPD which is triggered by psychedelic drugs and gives rise to many similar symptoms. As a result, research into either disorder may help to understand the other. Nevertheless, these two conditions should be kept separate, as many VS sufferers do not want to be associated with drug usage. 

Meares-Irlen Syndrome/Scotopic Sensitivity Syndrome (SSS)

Several VS symptoms, including light sensitivity, pattern glare/visual stress and migraines, are also common symptoms of SSS. SSS is a rare visual processing disorder which sometimes accompanies conditions such as dyslexia and autism. It is probably as poorly understood as VS, and thus will not be discussed in detail here. For further information about SSS, click here. Notably, tinted lenses/glasses have helped some people with SSS, so they may be worth investigating especially if you suffer from pattern glare.

Multiple Sclerosis (MS)

Visual snow and some other symptoms (such as flashing lights) can often be caused by the autoimmune condition MS. MS is where the body attacks its own nerves. This can cause visual symptoms, including visual snow, if the optical nerve is attacked and becomes inflamed (a condition called ‘optic neuritis’). Here, VS-like symptoms are just one aspect of the manifestation of MS, thus it is not standalone VS.

Lyme disease

Some patients believe that their VS symptoms are linked to them contracting Lyme disease. Similarly to MS, the visual symptoms experienced here are part of a larger condition affecting other body parts/senses rather than being standalone VS. The link between Lyme disease and VS has been subjected to very little scientific investigation.

Should VS sufferers visit a doctor?

Yes. Although it was mentioned above that most doctors do not know what Visual Snow Syndrome is, you should still visit a doctor for three reasons.

Firstly, you can eliminate the possibility of other conditions. For instance, a sudden onset of floaters and flashes (photopsia) can be a sign of retinal detachment, which can lead to blindness. By going to the doctors you can rule out other disorders, which is in fact one of the requirements outlined in VS' diagnostic criteria.

Secondly, some doctors do know about Visual Snow Syndrome, albeit just a handful, so there is still a chance that you may be properly diagnosed. Even if the doctor does not know about it, it is a chance for you to make them aware of it. I would recommend taking copies of the recent research into VS (see the Resources page); this will help show the doctor that this is a real condition. With some luck, the doctor may then look into the condition and give you a proper diagnosis.

Thirdly, it is always a good thing to make your doctor aware of your health problems. At least your record will be up-to-date, and you and your doctor can track the development of your symptoms over time.

Unfortunately, there is no way to show that you have Visual Snow Syndrome, as all eye exams produce normal results. Additionally, brain scans such as MRIs do not show anything either. Although PET scans did show a neurological difference in patients with VS in a 2015 study, this difference only shows up when comparing large groups of healthy patients to Visual Snow Syndrome patients.

Who does VS affect?

Visual Snow Syndrome does not discriminate between people; it can and does affect anyone, anywhere. Some people are born with it, and do not even know that they have the condition as they believe that everyone see this way. Others may develop it really late in life. Men and women are equally-affected by the condition. The indiscriminate nature of VS highlights why raising awareness of the condition and finding a cure is extremely important. Even if your vision is fine today, you never know what tomorrow may bring for you, your family and friends. 

How many people does VS affect?

Exactly how many people suffer from the condition is unknown, especially since many people may not be aware that they have the condition. It can be said though that it is a rare condition, evidenced by how little is known about it. For a rough idea of numbers, the Facebook support group has approximately 6,500 members (on 6th July 2017); this number is constantly growing and does show that quite a few people are affected.

Is VS hereditary?

Probably. No official research has been conducted into this question. However, informal surveys conducted by the Eye On Vision Foundation (EOVF), the sole charity raising awareness and funds for VS, show that there is some kind of genetic link. Many sufferers are afraid of passing on their illness to their children, leading some individuals to avoid having children.

Please spread the word about this condition, especially by sharing this website! Please also consider donating to the Eye On Vision Foundation – the only official charity raising funds for VS research. A significant amount of money is needed for further research into finding a treatment. Any contributions, regardless of size, are valuable and sorely needed.

Eye on Vision Foundation, EOVF, Visual Snow Charity
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