Video: Visual Snow for Beginners

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.

Visual Snow for beginners!

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.

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(Picture taken from visualsnowawareness.weebly.com)

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.

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(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.

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*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 🙂

Update

I haven’t posted for a while but I found this Wikipedia page (I have no clue why I’ve never come across it before) that describes perfectly the symptom I have had since I was a teenager (perhaps 14 or 15 years old). 

http://en.wikipedia.org/wiki/Visual_snow

I don’t remember whether I suddenly noticed this, or whether it appeared one eye at a time or in both eyes at the same time. I do remember that shortly after this first appeared, I experienced a complete distortion of vision, which only lasted a few hours. again, I can’t remember whether that was in one or both eyes, but it scared me so much that I went straight to bed. When I woke up in the morning, my vision had returned (although still snowy, of course).

I didn’t really worry too much about my snowy vision until the onset of my other symptoms 17 months ago. These started with numbness on the left side of my body, which spread over the course of several days (eventually including parts of my right side too), and lasted for several weeks before the sensation returned to normal. In my case, by ‘numbness’ I mean loss of sensation in the skin. I always retained full movement and control of affected limbs, i.e. the structures underneath the skin were not affected. 

During the period of numbness, I also began to suffer some other symptoms; heart palpitations and chest pain, dizziness/light-headedness, shortly followed by the appearance of blind spots in my vision. 

The blind spots started in my left eye and over the space of several days also spread to my right eye. They are situated around my central vision, but not in my central vision. They are in difference places in each eye, and only a couple of them overlap so that they are noticeable with both eyes open (the others are compensated for by the other eye). 

When the blind spots appeared, the ‘snow’ in my vision also got worse, and my eyes began to have more ‘memory’. The visual symptoms have never improved since their onset (but according to my ophthalmologist their is some amount of variation between appointments in my visual field results), but the snow and visual memory are made more manageable by avoiding dimly-lit rooms where possible.

Other symptoms I have also noticed during the past couple of years are: severe lethargy mid-afternoon; an inability to understand instructions or ideas, as well as written information (this is made worse by the visual problems); an increase in forgetfulness. 

I have never received a diagnosis for my symptoms, and my ophthalmologist has hinted that I shouldn’t get my hopes up. Examinations of my eyes have never shown up any problems, and neither did the MRI or lumbar puncture that I had last year.

I am looking to meet people that have similar symptoms so that we can share ideas and experiences. My ophthalmologist and the neurologists I have seen struggle to make sense of the symptoms I am describing to them, so other sources of information would also be gratefully received.

Vision problem demonstration using the medium of Jessie J

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This is an image of the lovely Jessie J that I’ve edited to try and show what my vision problems are like. This is an example of how I see with my left eye. I have blind spots in my right eye too but in different places.

Imagine I’m looking at the tip of Jessie’s nose (an odd thing to do but please play along here). The spot just beneath my centre of vision is the main one. It is also the most annoying one because it overlaps a little with one of the ones in my right eye. There is also one just to the left of my centre of vision (Jessie’s ring finger) and one a little to the upper right of my centre of vision (Dermot’s shirt sleeve).

These are all fairly close to my centre of vision, rather than way out to the periphery. This is why they showed up a lot better on field of vision tests focusing on the closest 15° or so rather than the whole field.

If anyone has made any similar images to represent eyesight issues I’d be interested to see them.

Private or not?

After recognising the return of some unwelcome signs, I thought it best to contact the doctor I’d most recently seen at the eye hospital. He said he could see me next week, as opposed to our planned appointment in 3 months time. 

At the same time, the mother had offered to ring round a few private consultants (because I’m at work during the day, not because I’m a lazy ass) just in case they could offer something that the NHS could not. I don’t know how I feel about a private consultation. Aside from the cost of an investigation that may result from that, is there anything that they could do that NHS doctors couldn’t? I am only considering it as no one I’ve seen can seem to find anything to suggest what may be causing this. Since the first patches of vision I lost did not return, I don’t want to sit around waiting for it to happen again. 

Hospital Appointments

Don’t get me wrong, I love the NHS. I can’t imagine the past year without it. But if someone doesn’t have a single bad word to say about it, then they’ve clearly never entered the hospital for a 9.00 appointment and then left at 12.00 having had an eye examination and a 5 minute talk with the doctor… or had to explain their extensive list of weird symptoms to 10 different doctors in the space of a few months… or sometimes during a single hospital visit. But as I said, I appreciate it really.

A couple of weeks ago I had a routine follow-up appointment. I had the standard field of vision test and eye examination. For those who don’t know, a field of vision test involves resting your chin on a ledge and staring at the inside of a sideways dome-like structure, with one eye covered at a time. You are asked to stare at a dot in the centre of this dome and little lights appear in all of the areas around the dome. You have to click a button every time you see a light appear, hence showing up any areas where your vision isn’t behaving as it should.

Anyway, after the field of vision test, the doctor remarked that there were some areas of my vision where I had shown consistency in my lack of response. “Umm… wouldn’t we expect that?” I replied in a sarcastic-sounding but honestly just confused tone. “Well, a lot of people just click all over the place”, he answered.

Great. I’d lost part of my vision but at least I’d be good at Bop-It.