The weird symptoms of a VSer

Okay so to most people visual snow is a weird enough symptom/syndrome in itself. But within the Visual Snow Facebook group and forum, I often notice the description of symptoms I did not know were possible even for a VSer.

VSers are united by their symptom of TV-like static in the visual field. It may or may not be more noticeable under different light levels, or times of day, but most VSers have this symptom 24/7. It can even be seen with closed eyes.

Goadsby and Schankin have recently published research suggesting that visual snow sufferers experience hypermetabolism in the lingual gyrus of the brain. However, this is merely a correlation and does not identify a cause. Further research is expected to commence in the near future, once the fundraising target has been raised.

There is currently no known treatment for visual snow; however the static is often not the only, and sometimes not the most debilitating symptom suffered by VSers. Symptoms commonly suffered by VSers are tinnitus, brain fog, derealisation/depersonalisation, fatigue, and anxiety. However it is not uncommon to see symptoms previously unheard of, even by your average VSer, described by member of the group.

The opportunity for sufferers to talk with others about their symptoms is of course largely a therapeutic experience, especially for sufferers of such a rare condition, many of whom have had negative experiences with members of the medical profession that haven’t heard of the syndrome before. However, ‘symptom sharing’ may also pose a potential psychological problem because of one influence. The power of suggestion.

Sufferers may read the description of another member and, realising they share a specific symptom, be able to eventually put a name to their symptom. But alternatively, it may cause a sufferer to realise the possibility that a symptom exists, which they may then dwell on, and self-analysis of an already anxious individual can lead to all kinds of stress.

I personally recommend ignoring posts that you know will not be useful to you. Discovering the similar plight of another may be comforting, but reading  about all the possible things that can go wrong in the human body may induce extra worry that not even a healthy person needs.

Annoying the Doctors

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…