Rare Disease Day

My Rare diseases are:

Persistent migraine aura without infarction (also known as “Visual Snow”)

Ehlers-Danlos syndrome hypermobility type

I’m going to write about persistent migraine auras and visual snow. Because when I read what was listed on the site of rare diseases, as you see highlighted above, I was surprised. Persistent migraine auras are not visual snow, and visual snow is not a persistent migraine aura. I have both and I know in the recent past Visual Snow was considered to be a Type of persistent migraine aura, but certainly not the Only persistent migraine aura.

Here are some previous posts I have written on the subject:


Persistent Aura Without Infarction (PAWOI)

“According to the International Headache Society, PAWOI is distinguished from normal migraines by having aura lasting longer than seven days [3]. Also, these symptoms must not be related to a stroke (an infarction), tumor, or any other structural alteration in brain tissue that can be seen from an MRI or CT scan. Furthermore, they should not be related to issues affecting the eyes themselves. Electroencephalogram (EEG) results, which directly measure cortical neural activity, should also be normal, which would suggest that the symptoms are not related to epilepsy [4]. Visual symptoms are often quite varied, and can include flashing lights, sensitivity to light, scintillating scotomas (depicted in the first image of this article), and geometric shapes [3, 5, 6]. Rarely, increased frequency and duration of afterimages, also known as palinopsia, and changes in the perception of the size of objects can occur [5]. Though these symptoms are distracting, they do not interfere significantly with the individual’s ability to see their environment. Some people with PAWOI experience non-visual symptoms as well, which include numbness, tingling, dizziness, and tinnitus (ringing in the ears). These non-visual symptoms are also seen with regular migraine aura. PAWOI appears to affect men and women equally, and people of all different ages can experience these symptoms, from 11 year olds to 70 year olds [6, 7].” Triple Helix



Visual snow

Visual Snow: What is this neurological disorder all about?

He and his coinvestigators studied members of an online support group for visual snow (Eye on Vision). In the first part of the study, they analyzed data from an Internet survey among 120 patients that asked about visual symptoms. They were 26 years old on average and about two-thirds were men.
Results showed that in addition to visual snow, nearly all patients reported other visual symptoms, such floaters (73%); persistent visual images (63%); difficulty seeing at night (58%); tiny objects moving on the blue sky (57%); sensitivity to light (54%); trails behind moving objects (48%); bright flashes (44%); and colored swirls, clouds, or waves when their eyes were closed (41%).
So recent research has suggested Visual Snow syndrome is its own entity although 50% of those with visual snow do in fact have migraines.  That is obviously a strong connection. I do not know if they will find a link between migraines or if it will be considered its own entity affected by migraines. Nevertheless, they located the hyperactivity in the visual cortex responsible for visual snow and who knows if they will ever discover more on the subject since it is, in fact, so very rare.
It does cause the ‘moving snow or static’ in our vision that is constantly present and sometimes gets very ‘thick’. Some people have it severely. And as in the quote above it comes with other visual abnormalities. I get for example a lot of after-images, difficulty seeing at night, blue field phenomenon, Photosensitivity, trailers, the colors seen behind closed eyes (phosphenes) and what is called ghosting and halos. All of that, just depends on the day. It is there, and varies, but there is always something. The snow is always there but certain lighting makes it quite a bit worse. And, before this research was done, it was considered a persistent migraine aura and treated with migraine preventatives… just not treated successfully. It is notoriously difficult and unresponsive to treatment. I have had things make my persistent migraines worse and better, but they don’t impact the VS in the least bit. So when asked, prior to this research, I used to say it wasn’t helping… because it didn’t seem to help at all, even if it was on certain auras. Because there was at the time, no distinction between VS and persistent migraine auras.
Even now, I would be hard pressed to even tell which are even which other than the ‘snow’ itself.
I do know the persistent migraine aura that is a warping field of lights and multicolored dots is definitely a persistent migraine aura and not VS. That I know. And other auras, like auditory and tactile, are temporary auras before a migraine. Tinnitus, which I have all the time, could be either. But other things like flashes of light, warping in my vision, halos and other random phenomenon… hard to say which category it falls under.
Either way, they are both rare diseases that are neurological and affect my vision at all times. Both are unpredictable and affect my visual acuity.
I can say this, I started getting a migraine corona aura (halo around people) right around the time I developed visual snow. Age of 12.  Around the time I remember the visual snow. The time I remember commenting on it. The surrealness of it. And people not understanding what I meant. It honestly Blows my Mind people cannot see this warping field of static everywhere. It is so clear. And it messes me up with patterns and lines. Things Warp. I don’t get how people cannot see that. Plain as day. Makes things as indistinct as a Monet painting. But they can’t. Just like they cannot see the vortex of an aura warping like a beautiful translucent flower or the scintillations or a scintillating scotoma as it consumes vision across the visual field.
I have had Visual Snow since I was 12. The corona aura since then too. But didn’t get persistent migraine auras until into my 20’s. And it made my visual snow worse when it did. So my persistent migraine auras have lasted 20 years so far. Longer for VS, but then it doesn’t seem to go away at all.

2 thoughts on “Rare disease day: visual weirdness #CareAboutRARE

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