Internet resources for visual snow sufferers

While the medical literature is silent, except for the papers from Liu et al. (1995), Jäger et al. (2005) and Wang et al. (2008), online there is active discussion about "visual snow". In contrast to this online community of people discussing the particular features of visual snow and related symptoms, most doctors appear to be unfamiliar with this patient-led term. Of a small sample of neurologists and psychiatrists sampled (in 2006) by the senior author, none had come across the term "visual snow" before. It is not difficult to imagine the implications of this in relation to a group of people who, frequently feeling disempowered by "the medical system" and by their illness, find solidarity online. Thus, it is likely that, for the time being, most of those sufferering from persisting migraine aura symptoms will gain relief from the validation of their symptoms, provided by reports of similar experiences from fellow sufferers, rather than from being given a medical diagnosis that would allow them to cope with their condition by enabling them to understand the cause of the self-experienced phenomena and to come to terms with its often chronic-episodic or chronic progressive course and its prognosis, which is, to the best of our present knowledge, not lethal anyway; contrary to the unwarranted beliefs of some sufferers who are frozen with fears of becoming blind or mad or suffering stroke or sudden death.

Snow like TV static

"I think that the fact my night vision is filled with snow like tv static does ruin my night vision. I see more of a gray night instead of a clear black with objects in it. I think the fact of patterns that seem to move is the action of visual snow. To see that look closely at a normal tv picture. Look at how all objects vibrate due to the the pixels of light in the tube. I think our vision is see those some grains of vision that others screen out."

(georgefarmer [subject #200], Ezboard forum Visual snow or static – Archive 1 – Help, April 16, 2003)

"I have always assumed that some people throughout history have always had 'visual snow'. People would have to wait until the invention of the T.V. to have an analogy to describe it besides 'like when you rub your eyes only forever!'"

(starrant [subject #138], Ezboard forum Visual snow or static – Discussion - VS (when was first documented case?), December 13, 2006)

"When I've been speaking to people about the phenomenon and they say they are sometimes aware of it too the word 'static' seems to register better than 'snow'. And in particular the neurologist I went to see thought the fact that I used the word 'snow' implied that the dots I see are always white, when in fact what I see is the effect of everything being made up of dots... They do appear white when it's dark, but really the effect is of millions of tiny dots, both black and white."

(yawningtiger [subject #276], Ezboard forum Visual snow or static - Discussion - Translations of term "visual snow", April 4, 2007)

On August 7, 2001, George Farmer (subject #200) founded the Ezboard forum Visual snow or static, a board for those who suffer from visual static or tv like snow in their visual field, which now has over 750 members. The website had an average of 18 daily posts and over 1.600 daily visits (August 6, 2007). In the 6 years since its foundation there had been a total of over 1.600.000 visits. On September 19, 2007, this board was upgraded to Yuku, providing the users of the Yuku Community with a new "web skin" and a large number of additional services.

George Farmer on seeing "what I coined 'visual snow' or very fine 'static' in my field of vision"

"I basically noticed in my 20's (1972-1981) that letters were vibrating. I underwent exams but no cause was found. A neuro-ophthalmologist I was sent to in the 1980's found no problem at that time and he told me not to worry about it. Then, when I was in my late 30's or early 40's, I noticed my night vision worsening and I began to see what I coined 'visual snow' or very fine 'static' in my field of vision. It is worse in low light. I have noticed it against a blue sky, or in deep shadowy areas and it seems to be compounded by fluorescent lights. I also have hearing loss and bad tinnitus; that started in my 20's too. A survey I did on my site, and via email, of approximately 35 people with VS showed about 80 % suffered from tinnitus. This is way above the population norm for that affliction.

I have tried various supplements and OTC drugs; they do not help either the snow or the tinnitus. I am inclined to think it is a brain filtering malfunction, perhaps caused by lack of inhibitor neurotransmitters like gamma-amino-butyric-acid (GABA). I also have some anxiety problems. There is a high incidence of anxiety problems in VS sufferers, and this, perhaps, may also be explained by lack of GABA.

My VS is now better and probably worse but it does not bother my day to day vision much, thank goodness. I am a Forester/Realtor by profession and I do notice the visual snow effect in the woods sometimes, although not as much as I did a few years ago; I may have adjusted to it. I have had no problems with migraines during my life thus far; no history of recurring headaches and no history of recurring migraine aura phenomena either. One cousin, however, suffers from migraines.

In 2001, I searched for a forum but there wasn't really one to be found. Ezboard made it easy to set one up. I have been surprised at how many posts we have had from people all over the world, reporting nearly the same symptoms. I'm especially pleased for those people who have said how relieved they were to find the site, and how they no longer feel alone. Several doctors and researchers have posted on the site and have commented that they have found it interesting and may look into it more deeply. It took a while to find a good setup; colors, etc. for the board that most people seemed to like, and I now I try to leave it as it is. I think the board is an example of the power and reach of the internet at its best."

(George Farmer [subject #200], Emails to Klaus Podoll, March 1-2, 2006)

The Yuku forum Visual snow or static was founded on September 19, 2007, continuing the activities of the Ezboard forum founded by George Farmer on August 7, 2001 (larger image see here).

Little dictionary of visual snow or static
Language	Term
American	visual snow, visual static, TV like static
Dutch	visuele sneeuw, sneeuw zien, oogruis
English	visual snow, visual static, TV like static
German	Augenrauschen
Hebrew	sheleg vizuali, ritzud vizuali
Japanese	雪の視力
Polish	Śnieg optyczny, Śnieżenie migrenowe

"There used to be a very good illustration of vs on this forum, one of the Eiffel Tower in Paris", recalled one sufferer. "I can't find it anywhere in the archives though...." (due to a sad loss of a considerable amount of posts from the forum's early years resulting from a bad hacker's attack on Memorial Day, May 31, 2005), "does anyone still have it? I think it was from the very beginning of this forum... one of the first images that was shown here (or at least the first I ever saw of it)."

(Gyps Kindra [subject #120], Ezboard forum Visual snow or static – Discussion – Illustrations of visual snow, June 15, 2006)

The lost illustration of visual snow was suggested to have been Georges Seurat's pointillistic masterpiece The Eiffel Tower (1889), highlighting the phenomenal similarity between the spotty, grainy vision of visual snow sufferers and the pointillism technique developed by the post-impressionist French painter. Similarly, another sufferer noted: "Apparently Vincent [van Gogh]", the post-impressionist Dutch painter, "suffered the same thing as my 'Visual Snow'... It's happy to share such parallels, but sad to realize the disease endures."

(Metro Dynamics [subject #58], WilliamGibson.com Message Board – Random Thoughts – Acute van Gogh oculosis, September 30, 2005; additions in square brackets by Klaus Podoll)

"As you have probably determined from visiting the Visual snow portion of Ezboard", one sufferer summarized the spectrum of symptoms discussed at this forum, "most of us complain of the following" in addition to visual snow: "persistent afterimages and trails following moving lights or images (palinopsia); photophobia; photopsia (temporary dark spots or bright flashes appearing in the field of vision); halos or starbursts around bright lights; grainy or 'snowy' vision (night vision seems especially affected); flickering or pulsating of vision (often aggravated at high altitude); bright blue or purple 'swirling' phenomena appearing in the field of vision when in the dark with eyes closed. Usually the onset is abrupt, with the patient's perception of the features evolving over the space of a few days. The initial onset is often accompanied by an increase in vitreous floaters... There are often signs of autonomic disturbance, such as irregular heartbeats, orthostatic hypotension etc., accompanying this syndrome. However, it is difficult to know whether this is an element of the visual problems or the result of stress and anxiety responses.

The symptoms displayed by people who have developed this syndrome overlap considerably with those of people who have used LSD or other such drugs. The Hallucinogen Persisting Perception Disorder (HPPD) is believed to be caused by toxic insults to certain serotonergic receptors, for example. However, most of us with this syndrome (myself included) developed this syndrome without exposure to drugs; but during a period of psychological stress. Most of us have been given a diagnosis of 'migraine aura status', but there has been little success treating this entity like a migraine. Please let me know if you have other thoughts!!"

(SwedeP [subject #44], Email to Klaus Podoll, February 15, 2006)

David C. Haas on visual snow and persistent migraine aura

"Hi -- I read a few articles about visual migraine auras by Dr David C. Haas on the web. I sent him an e-mail regarding VS and here's what he had to say:

Hi George--I think that the 'visual-snow' phenomena as described in the Web site you've mentioned are probably persistent migraine auras. I'm no longer in the business, having retired from medical (neurological) practice last December. However, my Web page on what I called 'Prolonged migraine aura status' has been incorporated by Dr Klaus Podoll and associates into their Web site and can be viewed in slightly updated form [here]. The various medications that have been reported to have eliminated aura status are listed there.

I recommend that you consult a neurologist. Make sure that if he/she isn't familiar with migraine aura status (now officially called 'persistent migraine aura without infarction' by the International Headache Society) she should read the Web page and, preferably, some of the referenced articles in the medical literature.

Good luck, David Haas

I know we've all heard/read about VS being a persistent migraine aura, but this is coming from a real expert in the field. If you haven't brought this up with your doctor then perhaps you might want to give it a go. I know I will be in the next few days..."

(SpeedStick [subject #468], Ezboard forum Visual snow or static – Discussion – Email from a medical expert, July 18, 2005)

Similar needs are served by the German forum Eye noise - The forum for unexplainable eye diseases which was founded February 1, 2006, by a visual snow sufferer named Chris. The five threads of the main section are devoted to eye noise (visual snow), diplopia, floaters, dry eyes and other diseases. Three additional threads invite submission of reports about the user's own experiences and discussions on topics related to diagnosis and treatment. Up to now, this forum has shown just a low activity.

Following a proposal from migraineur and LiveJournal user lapetiteflower (subject #364) ("in addition to synaesthesia I have visual snow and flashies all the time"), who suggested that "we should have our own community or something... the blue flashie and purple spot people" (see here), a LJ community for those with Migraine Aura Status or Persistent Aura was launched on April 9, 2006. However, this forum didn't attract any responses ever since.

Similarly, on September 20, 2007, cfite14 (subject #297) founded the MySpace Group Visually Disturbed as "A place for people that experience visual disturbances such as visual snow, persistent migraine aura, palinopsia, after images, trails etc. to discuss these issues and just chat."

On November 11, 2007, winklemouse (subject #471) "created a new website" entitled Palinopsia "for people suffering from or interested in palinopsia and other visual disturbances", supplemented by the newly founded Google group Palinopsia "for folks to discuss their experiences or interest in visual disturbances including: Palinopsia, visual perseveration, trails, tracers, persistence of vision, visual snow, floaters, flashes and photophobia", targeting the same population, to a large degree, as the Yuku forum Visual snow or static.

On May 28, 2008, IanKC (subject #92) founded the MySpace group Visual Snow and Persistent Migraine Aura Support. "We have no real MySpace presence at the moment, and since so many people around the world use it I think it's about time we started something like this up", IanKC explained the rationale behind the project of launching another website on that topic (see here). Everyone who wants to contribute to the promotion of information on persistent aura can add that page as a friend or top friend, and it will give more exposure to the Yuku forum Visual snow or static and www.migraine-aura.org.

On September 27, 2008, Porillion started posting on her blog a three-part section on persistent aura and visual snow (here, here and here) complete with a FAQ section (here).

The use of blogs as daily symptom diary or journal for VS sufferers will offer great potential and opportunities for diagnostics and research (see Russell et al., 1994, for the usefulness of diagnostic aura diaries). One subject has used Visual Snow as his web pseudonym at MySpace: "I do experience visual snow. The reason for the use of it as my internet ID is after discussion with a friend of mine who also suffers from it." (Visual Snow, Email to Klaus Podoll, June 7, 2007)

Blogs of VS sufferers

"At the same time SwedeP [subject #44] and I are working on a website that would allow for the dynamic surveying of many of our cohort of VS sufferers. The site will be sophisticated enough to track patient progression over many years and provide a basis to do regression analysis across patients and more detailed analysis on an individual patient basis. The website would not aspire to present any data but rather to offer patients a place to keep a web diary or blog of their experiences over time in an organized fashion and answer specific questions from a therapeutic point of view in order to feel (1) that they are actually doing something about their condition and (2) that one day the information may be useful to someone like a researcher, and (3) feel like they were capturing their thoughts somewhere relevant. It would basically be a blog where case histories could be generated over time through a structured self-reporting application that was web-based."

(viper123456 [subject #42], Email to Klaus Podoll, March 24, 2006; additions in square brackets by Klaus Podoll)

There are two websites providing visual snow simulators, including one provided by Roger D. Davis, PhD at TheVisionCommunity.com (see here) and another from Henrik K. Johansson (subject #74), a visual snow sufferer recreating his own experience (see here).

The www.visualsnow.com website, founded by nbains (subject #105) in 2006, provides a selection of PDFs of medical articles on persistent aura and HPPD (see here).

A webinar on visual snow (a seminar which is conducted over the World Wide Web) has been suggested as a challenging future activity by viper123456 (subject #42), exploiting the internet as an educational tool.

(viper123456 [subject #42], Email to Klaus Podoll, March 24, 2006)

Doplegager (subject #486), a 22-year-old American artist and "vs lifer", has fictionalized his condition in the webcomic A Chance in Hell, the first comic primarily based on persistent aura experiences. "This is where it all begins", Doplegager commented on the cover picture of chapter 1 reproduced above. "The static creeps in... not slowly, nor softly, but with malice. The tendrils of the deepest parts of the mind, wriggling their way out of dormancy and into the real world." While the narrative of the comic takes a turn to the fantasy/horror side, visual snow is one of those thematic elements that's going to weave in and out. "I'm not going missionary with it", the artist added, "but I figured that it'd be nice to start getting a little media attention for the VS. This is my little part." [more]

For educational purposes, visual snow has also been suggested as a subject matter for radio, TV or film productions.

Visual snow goes media

"Hey if we can't get this on T.V. we can always write to the makers of the show House M.D.!!! I can see it now... 2 hours SEASON PREMIERE!! Bobby has visual snow and severe after-images and it is driving him crazy!! Even more unbelievable is his ability to see his own white blood cells everywhere against the sky and white walls!! The docs all think he is nuts and have put him into a mental institution. Can House solve the riddles? Can House use a new qEEG or SPECT exam to find out what is going on? Can House solve the problem, and deal with the bash of criticism from his fellow docs who are convinced visual snow is impossible?? A MUST SEE episode!!"

(starrant [subject #138], Ezboard forum Visual snow or static – Discussion - National Geographic, January 10, 2007)

Mystery Diagnosis

"Have you even watch the show Mystery Diagnosis on the Discovery channel? It is a show where people go years without a diagnosis, and are often accussed of symtoms being in their heads. They are casting for their next season, and was wondering if a bunch of us should try to get an episode aired on PMA/VS???

Here is a clip from the site: here.

Discovery Health Channel is searching for people to tell their stories on the 6th season of MYSTERY DIAGNOSIS. Each episode tells the stories of people who suffered with ailments that, because of their rarity, complexity or similarity to other illnesses, went undiagnosed for months or years before a physician could unravel the clues and nail down an accurate diagnosis.

Please send an email to MysteryDiagnosisCasting@gmail.com and indicate what your illness is, what state you reside in and the location of your diagnosing doctor, and tell us how your life is different now that you have been diagnosed."

(eyeissues, Ezboard forum Visual snow or static – Discussion - Mystery Diagnosis, May 29, 2008)

On June 21, 2004, an anonymous author posted the first version of a Wikipedia article on visual snow: "Visual Snow is a little-known condition in which people see snow or television-static in their field of vision. Usually the condition worsens in lower light conditions and when closing one eye. Many people have associated with it with extreme stress, LSD use, weightlifting and also from experiencing a panic attack from high doses of marijuana. People with visual snow often have floaters as well. Unfortuantely, this condition is fairly rare and doctors do not know much about it."

(Wikipedia article on visual snow, revision as of June 21, 2004)

Exactly one year later, on June 21, 2005, the Ezboard forum user tijmz (subject #83) began with the first of numerous additions and expansions to the text, reflecting the state of the art of the ongoing debate on the condition at the Ezboard forum Visual snow or static. "This article should make clear", he described his revision of the article, "that discussion on VS is largely a thing of discussion boards (a phenomenon in its own right) and should of course include any consensus that exists on these boards."

(tijmz [subject #83], discussion on Wikipedia article on visual snow, circa April-May 2006)

Coming from a family with migraine history and being a migraine sufferer himself, he was the first to introduce a reference to migraine to the Wikipedia article on visual snow. "Because there is little scientific data on the condition", he wrote, "visual snow is not diagnosed as such. Instead, it is often seen as a persistent form of acephalgic migraine."

(tijmz [subject #83], Wikipedia article on visual snow, revision as of June 21, 2005)

Wikipedia article on visual snow

"Most of the things I have entered have been, in as far as I could manage, objective texts. There are ... exceptions though, which still need work to really deserve a place on Wikipedia... A second article that is teemed with subjectivity is the one on Visual Snow... I did not start this one, but I did expand on it. I have had VS myself for as long as I can remember and so have a great interest in the condition. However, seeing the specks myself does make me less objective, if only in my recognition of a condition that is not recognized by the medical establishment. Still, the reality of living with the visual snow convinces me it has its place on Wikipedia. Perhaps a small history, explaining how the ailment was named and analyzed by 'patients' on the Internet, will make the article more NPOV [Neutral Point of View]."

(tijmz [subject #83], User Page at Wikipedia – The Free Encyclopaedia, December 21, 2005; additions in square brackets by Klaus Podoll)

About another year later, on May 23, 2006, a full revision of the Wikipedia article on visual snow, provided by the authors of this website, summarized the state of the art of evidence-based medical knowledge about the condition, superseding its previous categorizations as article "lacking sources", as article "which may contain original research" and last, but not least, as an article devoted to "Ailments of unknown etiology". This progress has been made possible by discoveries based on Sofia Greene's internet survey, that will be presented on the following webpage.

The need of raising public awareness to stimulate medical research

"I'd only be for trying to get more attention in the mass media if we thought that it would translate into some medical research. Unfortunately, while VS causes great distress, we can all name diseases that are much worse, including various terminal diseases. More importantly, how many of you have heard much about HPPD before getting VS? HPPD is a 'real' affliction that gets research funding... but still there is no cure and many docs recommend total drug abstinence as a treatment (along with therapy if the HPPD is troubling to the patient).

I think the challenge is that perception disorders are rare, do not kill or disable and, from a medical standpoint, are a a tough problem to solve.

I'm glad we have even a small group for researchers looking at it now. I suppose that if K and his collaborators are successful in getting VS recognized as persistent aura and describing many cases, then perhaps the migraine research community will take an interest. They do have funding."

(MisterClean12 [subject #189], Ezboard forum Visual snow or static – Discussion - National Geographic, January 11, 2007)

"My point is that, based upon many, many comments here, many docs just don't see VS as a serious disease. They see it more as an interesting oddity – if they believe the patient at all. And that's a shame. I'm just not sure how that will change dramatically given the rarity of the condition and the competing demands for research dollars.

Maybe the best best for now is education. Things may get better with access to better resources such as the new pages coming on www.migraine-aura.org. Perhaps if docs had information that VS is 'real' and a list of potential treatments, more patients could be helped, and helped more quickly."

(MisterClean12 [subject #189], Ezboard forum Visual snow or static – Discussion - National Geographic, January 11, 2007)

Internet resources for visual snow sufferers

References