Invisible disability awareness Visual snow

Migraines messing with my mind

Back in the day I was a philosophy major and I think there is a great deal of irony in the fact I loved to spend my time thinking about the distinction between Appearance and Reality. What is real is real, right? It just is. I was always certain of reality, but I was never certain we could truly know it. And as time has passed I am even more certain of that fact. Maybe the average person depends on their brain to tell them what is what, but they are fooled from time to time, even if they are not aware of it. Optical illusions being an example of that. The brain needs to filter a great deal of information and make patterns out of it… and it is not always right. So we can never be sure the reality we perceive to be true is the reality that is really there. People depend far too much on what they can see before them. It is why our invisible illnesses seem to fool people so often. How can you be sick and look fine? How can you be in pain and smile? So confusing isn’t it? But that is not the confusing I’m talking about. That shouldn’t be as baffling as it is.

No,what I’m talking about is when your own brain plays with your perception of reality in bizarre and strange ways. I get chronic migraines and often what is most common associated with them would be the pain and most definitely the pain is enough to drive a person mad. I get migraines with aura and that ‘aura’ is the part that messes with your perception of reality and it is the part of my invisible disability that is likely the most perplexing and difficult to describe to someone who has never experienced the phenomena before. It is a lot of false data is what it is. Ghost sensations. Neurological brain misfiring before a migraine. It can come in the form of tingling, numbness, ringing in the ears, hearing loss like a bad speaker, a visual aura like a blue and black smudge that takes over my vision, or white lights that obscure it, problems speaking, vertigo, dizziness… lots and lots of weirdness followed by a lot of pain. I could get into each of those into detail because combined with pain and adding into that the fact chronic migraines occur more than fifteen times a month and you get a neurological nightmare that seriously impairs your ability to function on a day to day basis. However, what I want to discuss is when the brain decides it really wants to play with your perception of reality and makes it a permanent state of affairs. Something strange happens with chronic migraines. Brain overstimulating I suppose. Too many migraines I was told. I’m ‘always in an aura phase’. The unexpected becomes the expected. Fall down the rabbit hole and make yourself at home with the Mad Hatter. (And actually by that reference I mean to say some of us actually get Alice in Wonderland Syndrome to add to the overall funness but that is another story for another day).

What I’m saying is that sometimes we get Persistent Migraine Without Infraction which is a longer lasting aura phase to the migraine. By which I mean it can last days, weeks, years even… not involving the migraine at all, just this prolonged neurological aura phase weirdness. And a common one is called Visual Snow (some people get this without migraines by the way, but it is a common persistent aura). Now the same visual part of the brain the lights up like nuts during the aura phase of a migraine is what goes haywire with Visual Snow, just permanently. And it can be a very debilitating condition all on its own because it can severely distort someones vision. It actually does distort mine in the moderate range; enough that i can’t drive at night and enough that details are sometimes… obscured. I find it fascinating that reality becomes so… distorted because of this condition. Fascinating that what I see is so different than what others see, but so similar to what other people with visual snow see. Because visual snow comes with its own set of symptoms. Some of which the average person is well aware of because they do experience them to a lesser degree… like after images and floaters (those little round circles that follow your eyes sometimes), and ringing in the ears, but these are just more common with visual snow people.

One of the common symptoms of visual snow is something called Blue field entoptic phenomenon- When we look at a blue sky or any bright surface we see billions of little bright pin-pricks of white lights dancing. If you did not know that this was actually a symptom associated from white blood cells moving in capillaries in front of the retina in the eye, which some people can see faintly while others, such as those with VS see vibrantly, what would you think it was you are seeing? Would you think it was something wrong with your eyes? When I was younger I thought it might be normal then I thought it might be because I have low blood pressure. Some people though think the phenomena is something outside of there eyes… because they are seeing it and for them it is reality. They are spectacular to see certainly.

The visual snow is commonly described as being like a TV without reception with the black and white static, but people see visual snow differently. Some have colors in their snow for example. And the Intensity varies. It is a grainy, staticy movement imposed on everything you see all the time, but worse at night. It makes things indistinct, surreal and distorted. I often think of it like a Claude Monet painting… sort of indistinct but with movement, shifting. At night I would say it is… not a good idea to drive because the distortion makes things too indistinct. During the day I can see the the static when I look at a wall or anything, it makes things grainy, or pixel-ized, but it is more clear.

So imagine seeing like Monet painted but with Movement. Constant movement of tiny dots. It has a sort of unsettling effect. I always find it a little hard to really focus on anything when it shifts like that. And actually with chronic migraines I get a lot of vertigo anyway.

Then with chronic migraines there are surges of well migraines which cause episodes of my perception to warp. The background of the world can warp, pulse, shift… blink in and out even. Objects appear to be moving when they are in fact still, shift and warp. Severe light sensitivity during the day makes it impossible to see without sunglasses and the blue field phenomena is quite distracting without them as well. As the daylight diminishes the visual snow increases and reality becomes more surreal.

Obviously I know that static I see in the background is not there… but I don’t know how clear people do see. I mean maybe to some extent they do see things sort of pixel-ized like I do. Or is it crystal clear?

Obviously I know objects at rest in a room are not in fact moving… but if they in fact did move, I would not know it.

Obviously when I get bouts of vertigo I know the ground did not suddenly drop beneath my feet… but my body tells me that is the case, I feel like I’m falling and I still stumble. My perceptions all say I’m falling.

Obviously I know there are not a billion little dancing particles of light dancing in the sky… but I see them every day.

Sometimes I can’t tell if things are moving or not when everything seems to be moving and shifting.

Sometimes I can’t tell if I am walking straight or not… the world is not right, the walls too close the floor made of sponge or also far too close or sometimes the ceiling is too close… it is like a funhouse and I’m always stumbling into something or falling but not falling. Or just falling.

I walk in a world of appearances and can never be certain of my reality. My reality is never firm or stable. My perceptions never giving me the right information on the reality around me. A very weird state of existence to be in. I have to say it is an interesting component to chronic migraines and an invisible disability. Chronic migraine sufferers often have a hard time getting people to understand the complexity of their disease. The idea that it is not a ‘headache’. That in fact the pain, the part of a migraine is a symptom like all the others and in fact sometimes people have migraines without the pain at all. And calling it a ‘headache’ undermines the seriousness of the disease… because of the intensity of the pain felt for one, the fact that it is a neurological condition for another and the fact it has many other symptoms. People die from migraines. People are crippled from the pain of migraines. People kill themselves to escape the pain of migraines (I don’t want to understate that fact either since I tried that myself a couple years ago… acute pain stresses our ability to cope and then all we think about is our core existence around our pain past, our pain present and our pain future and not all the other aspects of our life. Pain has the capacity when it is acute and lasts a long time to consume our minds.). Chronic migraines are endless and difficult to treat. And trying to explain anything beyond the symptoms of pain and nausea people associate with migraines is very difficult. I try to describe a world of sparkles, and sudden episodes of falling sensations and warping visual fields… and it is beyond comprehension just as much as chronic pain can be. It is my reality and it is a weird one and I share it with many other migraine sufferers. And it is but a fraction of our neurological symptoms. A picture if you will of our inner reality… when appearances show nothing is wrong at all, right? You can’t see pain. You can’t always see suffering. And I suppose you definitely can’t see the sparkles.



What the world sees (other than the fact every picture I have sunglasses and often a hat, you would not know I have chronic migraines, right? lol)



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