This page features a video introducing VS to those new to the condition. I will also soon add my own personal VS story.
Visual Snow for Beginners: http://youtu.be/0V-XFbah0LM
For anyone who read my post on this topic, this video may help to summarise that information a little better.
For those that haven’t heard of this condition, I would be grateful if you could spend a few minutes of your time to familiarise yourself with it. The more people that know about it, the better. It’s about time that people could discuss their symptoms with their doctor, without receiving a look of bewilderment. Thank you.
Think back to the days of analogue TVs. Particularly the little one you had in your bedroom as a kid (or as a student), which had no connection to the outside aerial. Fiddling with the mini indoor aerial you had perched on top of your TV, trying to get a decent picture but not able to fully get rid of the static. Well, that’s visual snow. But not on your TV screen, in your eyes, whether they are open or closed.
Well, in your vision to be precise, as most VS (visual snow) sufferers pass eye examinations with flying colours.
I have had VS since I was 17. As far as I remember, it appeared from nowhere. I don’t remember feeling particularly stressed beforehand, or suffering from a particularly bad headache or migraine.
An ophthalmologist gave my eyes a thorough examination, which I passed with no trouble. It was during this examination I discovered that when closing or covering one eye, the vision in the other eye was fading to black and back again repeatedly. Fixing my gaze on one spot for more than a couple of seconds would cause everything to fade to black, and moving my focus would then bring it back. I have since (almost beyond doubt) determined that this is caused by my brain trying to focus my vision on my closed/covered and open eye at the same time. I discovered this by covering one eye with a sheet of white paper instead of my hand, and in this scenario my vision fades to white rather than black.
The ophthalmologist put my symptoms down to stress or simple migraine or something, leaving me feeling like a foolish hypochondriac, and too scared to return or seek a second opinion, even when my symptoms did not improve.
Fortunately my symptoms didn’t get worse for many years either, so although I couldn’t forget about them, I stopped worrying about my eyesight. It was only two years ago in 2012 when I noticed a change. It was also at the time when I realised I’d had a bad tooth infection for many months (don’t ask). As you can see, you can end up a hypochondriac, analysing every symptom, medication, food and activity you encounter, due to a lack of explanation. Anyway, I digress.
My new symptoms in 2012 started when I lost sensation in my right little finger. When it did not return after several days, I saw my GP. She said due to the location, it was probably a trapped nerve and to come back if it didn’t get better. It didn’t. Over the following days, the numbness spread up my arm and onto my back. It was just the skin though, and didn’t cause any loss of function. The most scary symptom then arrived, though. I developed several small blind spots (Scotoma) in each eye. Thankfully they didn’t seem to overlap so my vision was fine with both eyes open. At a similar time, I seemed to develop BFEP (see pic below). This is normal to some extent, but is often severe in VS sufferers. Fortunately I have now learnt not to focus on it much of the time.
(Picture taken from here )
All of these symptoms except the VS, BFEP and Scotoma got better over the following months, but have made their appearances a couple of times since then, for one or two weeks at a time.
Without knowing the cause of VS, I can’t say whether or not these other symptoms are related to visual snow. I am lucky; some VS sufferers also have other debilitating symptoms that I have fortunately avoided so far. These include tinnitus, severe after images, depersonalisation/derealisation and loss of contrast or changes to visual colours, amongst others.
But it’s not all doom and gloom. Schankin C.J. et al. (2014)* have recently had their research into VS published. They took a sample of VS sufferers and surveyed them about their symptoms and whether they had a history of migraine. In a comparison with healthy participants, they found increased metabolism in certain areas of the brain (the right lingual gyrus and the left cerebellar anterior lobe adjacent to the left lingual gyrus) in VS sufferers.
This research has made a significant dent in the world’s ignorance of VS, but this is just a start. Further research is needed both to back this study up, and to further our knowledge of this condition. Then, maybe, we can begin to dream of a cure in the future.
*Schankin C.J. et al. (2014). The Relation between Migraine, Typical Migraine Aura and “Visual Snow”. Headache: The Journal of Head and Face Pain.
Volume 54, Issue 6, pages 957–966, June 2014.
Click here for the link to the research article.
Click HERE to visit the EyeOnVision Foundation website, where you can donate towards visual snow research.
Alternatively you can donate HERE on the fundraising page 🙂
I made a survey to get an idea of the various symptoms that people with visual snow have. I will post the results stats on the VS Facebook group and on here once I get a decent number of responses.
Please take part if you have VS! It’s anonymous 🙂
Ok I would LOVE to get a comment from anyone who has this or knows something about it. Could it cause the following symptoms? And could it be missed on an MRI that was only briefly looked at by a neurologist, and then all of my doctors since then have just seen the report basically saying “everything is fine”? Thanks in advance.
– Headache in base of skull and pulling sensation when sitting in certain positions
– Increasing number of blind spots in vision, which never get better
– ‘Snowy’ vision since a teenager (but worsening), particularly in dim light. It is hard to explain this to someone who doesn’t experience it, but basically a little like bad TV signal or white noise
– Occasional skin numbness
– Dizziness and slightly impaired balance
– Weakness, particularly during/after exercise
– Heart palpitations and sometimes faint heartbeat
– Poor circulation to hands and feet
The worst part is obviously the blind spots in my vision because the lost vision shows no sign of returning. I have had all tests under the sun and the field of vision test is the only thing that actually allows doctors to believe I have a problem, but they say they can’t see anything wrong when they look into my eyes.
I had a lumbar puncture last year and the doctor said the CSF pressure was normal at that time (I was in hospital as an in-patient at the time), which stumps me even more.
If you’re in a position similar to me, where your symptoms are so obscure and test results so inconclusive that you’re stuck in a frustrating limbo, you can begin to think that you might be an annoyance to the doctors that you visit.
They know that they do not currently have the answer and have run out of tests which may be useful in narrowing down the possibilities. They begin to suggest things like “seeing your GP for psychological help to deal with the uncertainty”, which angers you because you would rather deal with the root cause.
They appear optimistic without reason, suggesting that one day you may wake up with your vision restored and all of your symptoms will miraculously disappear; you know this is very unlikely.
They suggest that you “try not to think about it”; you know this is impossible when it impairs your every day life and parts of your visual field is obstructed by shimmery blind spots 24/7. (Imagine having a piece of dirt or a fly stuck to your glasses and not being able to wipe it off.)
They ask what you think the problem is. This angers you because you know from past experience that they tend to shoot down any ideas you suggest, saying it is very unlikely. But in fact, it is likely that whatever you have is very unlikely!
New doctors that you see don’t read your notes properly and say all of the problems are caused by anxiety or depression. Clearly not.
I have nothing against doctors at all. I have very rarely encountered a doctor that didn’t want to listen. It is just difficult seeing doctor after doctor when they don’t really understand how you feel and cannot to anything to help. Also, having to hold back the frustration so that they don’t mind seeing you again.
More specifically for young people, it affects all aspects of your thoughts about the future. You want to imagine being old and retired, playing with your grandchildren, gardening… (and I don’t even flipping like gardening!) but in reality you don’t know if all these things are possible because even right now these things would often be difficult, in your mid-twenties, with the symptoms you’re having and you don’t know what is causing it.
You worry about finding a partner who won’t be put off by your medical problems and, although it is easy to sit at your laptop and chat with people on dating sites at times when you’re feeling tired or unwell, it is less easy to get out there and meet people.
After writing all of these thoughts down, I can see why a doctor may suggest psychological help! But in fact, it is not depression preventing me live a normal life, but physical symptoms. Inside my mind I want to run about and keep busy like I used to, but I know if I do this then it will ruin the rest of the day so it is often best to save energy. So instead I sit here and write this…
So I had my private consultation today. It cost me a decent sum of money for the priviledge but it’s something I wanted to do, in order to get a second opinion and to see someone who could dedicate more time to discussing possible causes with me.
Well, walking into the hospital was a pleasant change from your average hospital, with a quiet waiting room and staff that weren’t rushed off their feet. The nurses greeted me and gave me updates on when my doctor would be arriving, etc. They said I could get myself a complementary hot drink while I waited. The toilets even had posh handsoap and moisturiser like an expensive hotel!
When I saw the doctor, he had already looked through my notes. He gave my eyes a thorough examination but (unsurprisingly) agreed with the NHS doctors that he couldn’t see anything wrong. He did, however, suggest a test which may be useful and hadn’t already been done and said that my local hospital should be able to do it. He also had me draw out my blind spots on a grid.
So overall, I’m glad I had a private consultation but in my case, in itself it wasn’t overly useful. But let’s see what comes of the test he suggested.