Age at onset of definite persistent aura

In the group of 60 subjects who received a diagnosis of definite persistent aura without infarction, the mean age at onset of persistent aura was 22,0 years (with a range from 0 to 54 years).

If subjects reported persistent perception disturbances as having been present from birth on ("my whole life", "as long as I can remember"), age at onset was scored as zero, which was the case in 8 subjects (called "lifers" by one sufferer). It is safe to assume that these 8 visual snow and/or tinnitus "lifers" (subjects #73, #120, #138, #147, #185, #189, #217, #235) actually represent cases of persistent aura with a very early onset before the age of 3-4 (Podoll, 2010) which is eventually obscured by childhood amnesia (Courage and Howe, 1993; Bruce et al., 2000). Noteworthy, 4 of these 8 subjects (#73, #120, #147, #217) had a history of familial persistent aura without infarction, suggesting a strong genetic component in these persistent aura "lifers".

The clinical characteristics of these subjects with very early onset persistent aura will be analysed in more detail elsewhere.

Whereas the existence of visual snow "lifers" or tinnitus "lifers" is hitherto unrecorded in the medical literature, there have been reports of very early onset sufferers from depersonalization-derealization who are acquainted therewith from earliest childhood onwards so that they consider depersonalization-deralization as the normal mode of existence. "If they have experienced it since early childhood, ... patients do not always know that their depersonalization is abnormal. They will not volunteer an account of it, unless something calls it to their attention or someone inquires about it." (Chefetz, 2002, p. 739-740) As depersonalization-derealization belongs to the symptoms that can be brought on by persistent aura without infarction, it has to be inquired whether at least some of these depersonalization-derealization "lifers" suffer from the said early-acquired complication of migraine with aura.

"neurodiversity.com - honoring the variety of human wiring." Top row (from left to right): Henry Cavendish, scientist; Blind Tom Wiggins, pianist & composer; Helen Martins, artist; Ludwig Wittgenstein, philosopher; Bottom row (from left to right): Alan Turing, mathematician, logician & cryptographer; Nikola Tesla, engineer; Glenn Gould, pianist; Andy Warhol, artist. © 2007 Kathleen Seidel

Visual snow from birth

"I started thinking about the several people who've come by and posted briefly about having visual snow from birth... Anyway, these people had no idea anyone else had this condition, they're leading perfectly happy and healthy lives, and most have expressed no interest in seeking treatment. How does everyone else feel about these 'lifers'? Do you think people that acquire snow later in life actually get it worse, or that there's just no sense of loss for people who developed visual snow early, and therefore no problem?"

(nbains [subject #105], Ezboard forum Visual snow or static – Discussion – From Birth, January 27, 2005)

"It does pose a dilemma. My brother is in a profession where he works with a lot of 'disabled' people, i.e blind, deaf, autism spectrum, etc. 'Differently abled' isn't just a political correctism, a lot of people born with 'disabilities' feel that their existence is no less complete or acceptable or rewarding than those of people considered 'normal' [see Harvey Blume's (1998) concept of neurodiversity]. In fact, many feel that they have a better existence as a result of their 'disabilities', and there's sometimes a backlash from the community when someone tries to make adjustments in their life to function more like a 'normal' person.

I wouldn't expect many people who've had visual snow since birth to be all that troubled by their condition, or even see it as a burden. The key is that there's usually no sense of loss, and that mitigates things a great deal."

(nbains [subject #105], Ezboard forum Visual snow or static – Discussion - New Member- had this as long as I can remember, August 16, 2006; addition in square brackets by Klaus Podoll)

Does opininion of bad or good VS depend on duration of condition

"I have had VS all my life and it is a nuisance but it is not as traumatic as in some others. I am beginning to believe this is because I am a lifer, someone who has had the condition as long as they have had a memory. Do sudden onset VS sufferers find it more agonizing then lifers? I would imagine so. I think the nuisance factor of the condition for some may be relative to how long one has had the condition. I believe a lifer can have the same degree on a person with sudden onset of VS and the person with newly acquired VS will see it as more of a hinderance than the lifer. Almost like some one being born blind versus some one who became blind later in life (though this example is extrem). How do you life time sufferers feel? Is VS intolerable? Non life timers, what do you think. Personally if I woke up one day and did not have the condition I could see myself going through anxiety because it is all I have ever known, but I am not saying that I want it, just that it is all I have ever known when it comes to my sight."

(tokooltone [subject #556], Yuku forum Visual snow or static - General discussions - Does opininion of bad or good VS depend on duration of condition, April 5, 2008)

Mostly, I think it's just one of those quirks, one more way of being different from the norms

"Not sure where to put it, might fit in with the migraines forum, but might also be interesting to others so I just put it here and leave it to the mods.

I've been wondering about my visual disturbances for a while, as they reached an annoying level when the Horner's Syndrome set in in February. Especially the increased light sensitivity is no fun. Neuro made a connection to migraines and essentially it's nothing much to worry about and nothing much to be done about it.

I was ok with that explanation and filed it away. Then I did some semi-random surfing on something completely different (Klonopin, I think), and via a few links stumbled upon the wikipedia entry on Visual Snow.

So that's what's been going on all these years! And here I was thinking it was normal to see these interesting polychrome patterns moving through my field of vision (when I close my eyes) in the dark. Asked my b/f's mom and she said nope, she just sees black when she closes her eyes. Always thought there was no such thing as pure black as you'd always have this wavering in front of it.

This also explains the amount and persistence of afterimages I get, and the busy flittering and dancing of spots and stuff in front of the sky, and the funky wavering colourfields I can move around with my eyes if I stare at the right background.

I never felt like giving hallucinogen drugs a try*, and now I find out it's essentially because I was hallucinating already, no drugs neccessary. Saves on money, side effects and troubles with law enforcement, let me tell ya.

On the other hand, of course it also means I can have a hard time reading small print (afterimages of what I just read dancing over the next line...), I can't see as well in the dark, even with my glasses on (because the nebulae/dotted filter/whatever the heck effect I'm seeing through obscures my vision) and so on. Now that I pay attention to it, I can sort of distinguish between 'normal vision' and the snow, so I think I have a good idea what the world looks like to others.

Mostly, I think it's just one of those quirks, one more way of being different from the norms. But it's sure cool to know I'm not alone and that others who have it have it the same way I do (mostly).

In a way this would fit nicely in the 'You mean it doesn't happen when you...' thread in the EDS/HMS forum, but as it's supposedly more a migraine thing, I thought I'd post it here and see who else sees the world through a veil.

Let it snow, let it snow, let it snow....

*or any other drugs, for that matter. I can be pretty darn silly without being intoxicated, thank you"

(Seyrenia, ButYouDontLookSick.com Message Board - Unlisted - Visual snow and other fun 'sights', June 20, 2007)

Visual snow sufferers vs. visual normies

"It just kinda reminds me to an Asterix intro...

The year is 2007 A.C. The whole world is entirely occupied by the visual normies. Well not entirely!

One small amount of indomitable VS sufferers still holds out against the invaders.

And life is not easy... :D"

(SamyFire [subject #268], Ezboard forum Visual snow or static - Discussion - Visual snow comic, September 18, 2007)

Randall Munroe, Morning (xkcd comic), March 12, 2008 (larger image see here). This work is licensed under a Creative Commons Attribution-NonCommercial 2.5 License. This means you're free to copy and share these comics (but not to sell them).

This cool VS club we're all in

"Glad you're around to know what 'dead pixels' are, Specialist... Hey, that could be our code for this cool VS club we're all in. Whisper to one another 'I see dead pixels' when we meet."

(Sarah A [subject #432], Yuku forum Visual snow or static - General discussion - Web Comic: xkcd: "[...] seeing dead pixels in the sky", March 21, 2008)

Reference

Blume H. Neurodiversity. The Atlantic, New York City, September 30, 1998.
Bruce D, Dolan A, Phillips-Grant K. On the transition from childhood amnesia to the recall of personal memories. Psychological Science 2000; 11: 360-364.
Howe ML, Courage ML. On resolving the enigma of infantile amnesia. Psychol Bull 1993; 113: 305-326. [PDF]
Chefetz RA. Healing Haunted Hearts: Toward a Model for Integrating Subjectivity Commentary on Papers by Philip Bromberg and Gerald Stechler. Psychoanal Dial 2002; 13: 727-742.
Podoll K. Musical palinacousis as an aura symptom in persistent aura without infarction. In: Rose FC (ed) The Neurology of Music. Academic Press, London 2010 (in press)

Acknowledgments: We wish to thank nbains (subject #105), the founder of the VisualSnow.com website, for bringing to our attention the problem of persistent aura "lifers".