Persistent Migraine Aura and Visual Snow?

We’ve talked a lot about migraine aura – especially visual aura – here in the past.  Typically, visual aura hits before an attack of pain in migraine, although sometimes it hits all by itself, and can be quite debilitating in its own right.

But what if that visual aura never went away?

That’s what does happen to some people.  I’ll get more specific in a moment, but first a couple of important notes…

Is this migraine?

There is some debate over whether these visual symptoms should come under the classification of migraine at all.  Now of course, there are many things that can cause aura-like symptoms, shall we say.  So of course those other issues need to be ruled out before you can even consider whether or not this is migraine-related.

Next, we have to ask if the visual symptoms are the same as migraine aura, or if they have unique properties.  This could mean there is a different cause, though it still could be that there is a root cause involved in the migraine attacks and the visual symptoms.

Finally, even if the symptoms are the same, there is still debate over how closely they are related to migraine.  Does the patient have individual migraine attacks?  Could there be a common cause of both?  Could it be a similar symptom from another cause?  These are difficult questions to answer, though we certainly seem to be getting closer to answers as our understanding of the brain increases.

What is Persistent Migraine Aura and Visual Snow?

Visual Snow

Last year I was corresponding with someone about persistent migraine aura, and visual snow, and they pointed me to some helpful information.  I would give them credit, but for some reason I can’t find the correspondence at the moment (what?  James isn’t perfectly organized?  I’m so disillusioned!)!  But I appreciate the nudge to post on this topic.

Persistent Migraine Aura (PMA), also known as persistent aura without infarction, is diagnosed when there are aura symptoms lasting more than a week without evidence of infarction (which refers to the death of brain cells).  This is in a patient that already has migraine with aura, and then has symptoms that are typical of their migraine attacks but lasting longer.

Often these symptoms are only on one side, though not always.  They can continue for weeks, even years.

Visual snow (VS) is a more specific symptom, which could be a part of PMA or not, or even a symptom that is a part of a totally different diagnosis.

As you might guess from the name, VS is when the person sees "snow", like static on an old TV, all the time.  This may be a temporary condition, or pretty much permanent.  VS is often accompanied by other symptoms, and other types of visual disturbances, as the video below illustrates:

What’s causing it?

That question doesn’t always have an answer.  As mentioned above, often it’s related to migraine and considered a part of migraine disease.

Sometimes there are other causes – at least suspected causes.  Research on VS is extremely limited, and though the visual symptoms do have some patterns and relate to other symptoms, it’s sometimes hard to know if there’s a solid related cause, or just two things that are comorbid (that tend to go together, though we may not know why), or if there’s just a coincidental relation.

In our next post on the topic, we’ll talk a little more about possible causes, and what treatments have been suggested.

For now, remember that this is a condition/symptom that is known by (some in) the medical community, and if you’re suffering from it you are by no means alone.

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91 comments… add one
  • lalla Sep 10, 2010

    I need help..i started getting visual snow about 5 years ago, i have always had ocular migraines, about once or twice a year, and the visual snow started after i felt sick on mdma. I remember the day after the horrible night i got up and fainted, i could not get out of bed the whole day as I would keep fainting as if my blood pressure was really low. a week later i started having visual snow and a dizziness. anyways i started a cure with sereupin and zoloft as my doctor thought i was depressed. I stopped the medicines after a year. After a year of disperATION I forgot about the visual snow, it was always there but it did not bother me as much. after 5 years in which everything was (nearly fine) in august 2010 i started feeling dizzy for a few days, light bothered me a lot so much i would not go out at night time, and my visual snow got worse. a few days later i got an ocular migraine and from there everything has been really bad. I feel dizzy, afterimages are bad, lights bother me as they remain in my eyes for a while after i look at them,I have a feeling as if i am drunk all of the time. Oh and my visual snow has gotten worse. How is this possible? I am having another attack of persistent migraine aura?maybe the first visual snow was hppd combine with migraine?i have not touched a drug since that time 5 years ago, nothing at all except alcohol.i have done all of the tests possible everything seems fine and my doctor thinks that I am depressed and anxious. Could it be that my anxiety has worsened all of this? I already went through this the first time I can’t cope going through it again. I am a pretty anxious person but the fact is if i have to live like this for the rest of my life well I won’t.
    I can’t subscirbe to the thosewithvisualsnow forum i don’t know why. sorry for my english. Thank you

    • Debi Sep 28, 2010

      Ialla, I thought I was the only one this was happening to – the visual snow, the dancing lights, headaches, dizziness, feeling as if I’m intoxicated, but I don’t even drink alcohol! I may have some insight for you – perhaps we could compare notes. I too have been so depressed – and have started having some panic attacks. I also have neuralgia (tingling of mouth and extremeties, burning sensations). I have a lot of pain in my body all the time. I have been to neurologists, allergy specialists, psychiatrist. It is so difficult to get any kind of diagnosis, and even if I got a diagnosis, I’m not sure if there would be anything out there to help me. I too, do not want to live like this. Perhaps we can help each other by providing support to each other. Please reply back to me through this web discussion reply, as I have more to tell you, or email me at [email protected] Thanks!

      • lalla Sep 29, 2010

        Do you think it could be all down to stress and axiety?? could these factors worsent he problem?

        • Debi Sep 29, 2010

          Ialla,it is my opinion that your physician(s) should rule out any physical cause(s) before you think that it’s totally due to anxiety and depression. You may need lab tests or exams (such as neurological, opthomology) in order to rule in/out disorders. I think that it is hard to tell if the anxiety/depression is because of the physical symptoms you are having, or if your symptoms are caused by the anxiety/depression issues without a physician analysis. It’s kinda like what came first – the chicken or the egg? It appears to make sense that by ruling in/out the physical causes/disorders, that it would be easier for your physician to determine if it’s due mainly to your anxiety/depression. He or she may suggest you see a psychiatrist or psychologist after the findings are in. Ialla, do you have food allergies or sensitivity to foods? I have food allergies, and have to try to eliminate many foods from my diet. I don’t believe it will be an easy fix, I know that there are “layers” of issues going on with me. Giving up a lot of foods and drinks would make anyone depressed (lol), but it has actually progressed to more than just that. After my own diagnosis (or lack of) has been determined, I have plans to possibly see a psychologist for some behavior therapy to identify the stressors that may be triggering my symptoms, and to work on those issues. But for now, I’m still in the physician assessment mode. I hope I was of some help. Please continue to communicate with me, I so relate to your problems… Debi

        • lalla Sep 30, 2010

          Thank you so much for your replies.. they truly are helpful! anyways i;ve actually done every possible test out there and everything has come back negative… i don’t know why but i’m pretty sure that my problems are related to hormones.. because i stopped the contraceptive pill this summer and thats when it all started again. I just wish people would sto thinking i’m crazy! i do believe though that the more i think or focus about them the more I see them.. I am actually thinking of having allergy test in case its up to that!! there is probably something in our brains that doctors just dont know how they happen.. I wish there was a proper solution for both of us ! sorry for my english

    • Erin Nov 24, 2011

      I’m in the same boat…I was a heavy MDMA user for over a yr, quit two yrs ago, now I have depression/anxiety, some OCD like behavior, sleeping problems, and major memory and cognition deficits. I get frequent moderate migraines too. Worst of all are the auras that come and go and the constant snow. It sucks, I’ve tried Propranolol and Effexor, so far no good.

    • Melissa Apr 24, 2014

      I’ve had the same symptoms for the past 3 weeks, and they don’t seem to go away. How are you doing now?

  • Debi Sep 30, 2010

    Hello Ialla and other posters. I have been suspicious of aspartame, caffeine, and MSG as to making my symptoms and headaches worse. I also had been taking Zolpidem (like Ambien) in order to achieve sleep, and had been on it for two years. I suspected that I was having side effects from it, so went off it. I looked it up, and it had a chemical composition, and was a sedative/psychotic type drug that should be only taken short term. My vision (visual snow, blurred vision, flashing lights) started after I was on Zolpidem. I also had the neuralgia (oral and extremeties) begin after that time of starting Zolpidem. Going off this drug proved to be a nightmare. I may have been having “withdrawal” symptoms, and was unable to sleep at all and it created a deep depression period, also. It has been about 2-3 weeks, and I am sleeping somewhat better now, but the depression has remained. I wonder if my body is just reacting to chemicals that I have put in my body – making my nervous system “go wild”, so to speak. My other symptoms have not ceased, either. I have the neuralgia and tinnitis (ringing of the ears) that pulsates with my heart beat. Just a difficult, chronic thing. After reading some other posts, I’m hearing that drugs may take 2 years to get out of your system. What we do to our bodies thinking that we are helping ourselves!

  • lalla Oct 4, 2010

    do you think that the intensity of visual snow can get worse?? can it be so intense that it can debilitate you? i don’t know if it has worsend a LOT or if i am just focusing on it much more again… do you think it could be related to hormones?

  • Meredith Oct 11, 2010

    Has anyone been checked for a PFO?

    Patent forman Ovale in the heart?

    It is detected by a “bubble test” during an echo.

    Some have found relief by closing the hole. There is not lots of data out there. I have this hole but again I have not taken any measures to correct it.

  • Kimberly Nov 7, 2010

    lalla and Debi,
    I am very sorry this is all happening to you, but I am VERY glad I found out about your case. I have had migraines with aura off and on for the past 15 years. 14 months ago, I was yanked off my birth control pills in the middle of the pack because the PA I saw during my yearly exam was afraid I was at a higher risk for a stroke. (Don’t know why she just now figured out there was a risk. The gynecologist had me on the pills for over a decade!) Anyway, 5 days after being yanked off of the birth control mid-pack, I had one of the worse migraines of my life. The visual symptoms were horrible! Now, 14 months later I have had the visual symptoms of a migraine PLUS visual snow EVERY SINGLE DAY! It doesn’t go away when I close my eyes. It is ALWAYS there! I have been to a neurologist and a neuro-opthalmologist. I had a CT Scan done of my brain and nothing showed up. They both told me my “eye problems” had NOTHING to do with being taken off of hormone pills yet neither of them knew what was wrong. They said my eyes are structurally fine and completely healthy. They made me feel stupid and acted like I was making this up!
    Month passed after the doctor visits and no relief. Last week, I went to a new neurologist who specializes in headaches and migraines. He is very sympathetic and tomorrow I go in for another CT Scan. He is wonderful and actually CARES about my problem.

    Here are some facts that might be helpful or interesting:
    1. I do not consume aspartame, caffeine or MSG.
    2. I have also taken an antidepressant. (Wellbutrin for ELEVEN YEARS!)
    3. I also must take a prescription sleep aid to fall asleep and STAY asleep every night and have so for TWELVE YEARS! (Trazodone)
    4. I also have had strange neurological symptoms- lip twitches, dizziness, tingling and numb hands and feet, brief loss of hearing, tinnitus
    5. Florescent lights make my visual snow and aura worse. Low blood sugar makes it worse, too.

    Also to answer Iallia’s last post . . . YES, this is DEFINITELY related to hormones. My new neurologist is thoroughly convinced of this.
    As I get answers, I would like to share them with both of you.
    My email address is [email protected].
    In addition to posting everything, I would be happy to email you directly.


    • Debi Nov 11, 2010

      Hi Kimberly. I have some new information. Since my last post, I have had an MRI which came back with no remarkable issues. I have been to an internist that spent 2 1/2 hours with me. I am cautiously optimistic, because this doctor really cared and took a very thorough history. He says he thinks that he may know what’s wrong with me, and I have a follow-up appointment in 2 weeks. He ordered an EEG, a chest x-ray, and a host of blood tests. I was nearly in tears because someone is listening to my symptoms and wants to provide a diagnosis for me. There are doctors out there that care… I just hadn’t found one until now. A review of my symptoms: headache, visual snow, tinnitis, arthritis/joint pain, muscle pain, throbbing oral and extremity neuralgia (seems to be triggered when I drink water or have anything with sugar), sensitivity to light, sensitivity to cold (I chill a lot, and can’t tolerate cold), hives, allergies, chemical sensitivities, tendonitis, and fatigue. I will try to update you all after I see this Dr. in a couple of weeks. I don’t believe that hormones was the cause of my problems, however, I did go off hormone replacement and my symptoms worsened – but then I went back on, and they didn’t get any better.

    • Marco Jan 10, 2011

      Kimberly, my advice to u is try to relax, i know its horrible but in my experence drugs do not help, migraine auras expesially those with VS are barely ever successfully treated by dugs, or even doctors for that matter. The more u accept that u have it the faster u will stop noticing it, or at least start ignorin it unintentionally. Of course there will be those nights that are worse then others and u freak out, i do to, but u have to remeber its a non fatal disorder, and tons of people are getting through life wih it. Just relax, things will get better i can promiss u that, it will just take some time for u to get used to it (it took me 8 months)

      • Phil Sep 19, 2013

        Marco, you have given the best advice I have ever read so far. Doctors can’t help this condition. Drugs don’t work, and, scientists have no idea what causes auras and visual snow. Therefore, since this condition won’t kill you or render you an invalid, it’s best to accept it, and eventually (in the absence of anxiety) a person learns to ignore it, most of the time, and certainly not worry about it, since it’s harmless.
        I have had migraines with aura, visual snow, aura without headache, and persistent aura without headache, for as long as I can ever remember, back to when I was a very young child. And I am still alive and doing quite well. So, you are right, people should just try to accept it, and move on.
        When I was too young to know that I was having auras, I would lay in bed at night and fall asleep watching the crazy colored patterns, spinning colored ‘wheels’, and colorful ‘sparklies’. At the time, I had no idea that this was not normal. Also I did not have the headaches until I was teenager, and even then, they weren’t very severe. A few years later, I stopped getting the headaches and once again only got the auras, and the persistent snow and other visuals like sparklies, starbursts, shimmerings, purple spinners, and the typical fortress type, spreading migraine zigzag thing. .
        At this point, I’m 47 now, I have the visual snow all the time, but can’t see it unless it’s dark around me. I can see the sparklies almost all the time however. This is persistent aura.

  • Cheryl Byers Nov 26, 2010

    When I feel the need to communicate in some way with others who have PMA/visual snow, I come back to this and other sites. I have suffered from PMA CONSTANTLY for about 13 years. I also have fibromyalgia which, thankfully, is well controlled now. I have always wondered if the PMA and fibro were related. I’ve also wondered about the hormone thing. I am 73 and was put on estrogen after an early hysterectomy. Took it constantly until AROUND the time I was struck, suddenly, with the PMA. But somehow I really don’t think the problem is hormones.. My PMA became worse after needed cataract surgery, although no one knows why because PMA is a brain disorder and surgery on the eyes shouldn’t affect that. However, my neuro says anything that is done to the eye will affect PMA. Since the worsening of my symptoms, I have also developed balance problems. Because I see flickering lights all of the time all around my visual field, I don’t clearly see where I am walking and also, feel very unsteady. A cane helps. In extreme cases, I use a 3-wheeled walker. Some arthritis in my knees doesn’t help matters. This is a very LONELY condition to have. .Because there are so few of us it is highly unlikely we’ll ever run into another in person. At best, people just can’t understand it. At worst, I’ve actually been criticized for the way I walk, my inability to see anything except the swirling lights in dark environments, etc. I love movies, but the lights become worse and I can’t see a thing when I’m in the theatre. Yet, I’ll go if i REALLY want to see the movie. I have very poor (almost non-existent) night vision and have installed overhead lighting in my house. I keep as active as I can in retirement. However, because I can’t drive or see well at night, I miss out on many things I’d like to attend in the large city in which I live. How I emphathize with those of you who don’t know if they can live with this beast – or whether they want to. I have actually on occasion looked up methods for committing suicide, so I KNOW. Let me assure you that it CAN be tolerated and doing what we CAN DO helps us from being terribly depressed. Perhaps that’s easier for me to say becaus this struck me late in life and, in my worst moments, I think “Well, I’ll obviously have to live with this the rest of my life, but that won’t be TOO long.” Sometimes I think I’d rather have almost ANY other chronic condition. Then reality sets in and I know that there ARE worse things, especially things that involve pain. Are there many things as annoying? I really don’t think so. The first optho that I saw, of course, had never seen this, along with the dozens of further doctors. But he sent me to a neuro and said, “This will drive you crazy.” Well, so far, I’ve proved him wrong. But if I went crazy, the lights would still be there,so I try to resist sinking into deep d epression or running around screaming! I have tried numerous anti-seizure meds, migraine meds, even some “off label” meds. On one of the sites someone suggested prednisone. I have an appt. with my neuro soon and wlill ask about that. I’ve also had all of the “possible” helpers suggested by Dr. Klaus Podoll, who seems to one of the very few drs. working on this, in Switzerland, I believe.
    If you go to the PMA official website, you’ll find remarks by him, but they haven’t changed in years, so obviously, he has come up with nothing new.

    I wish all of us sufferers coulld be physically together occasionally to “shore each other up.” These sites are the best we have. However, I have found that if I review the sites too often, it depresses me and makes me feel very sorry for myself. As my neuro said, “I know it is very hard to have a rare disease.” So far, I’ve found the inner strength to deal with this, though I’ve recently recognized that I do have chronic low-grade depression. When I’m around people who are very cheerful, laughing, etc. I join in, but there is part of me that says, “Who are you trying to fool?”

    I pray a lot and know this is why I’ve been able to cope with this for so long. But, dear God, let someone find a cure!


    • Marco Jan 10, 2011

      Ive had mine for just about a year and its not going away. Ur not the only one where it never goes away. Your symptoms do seem more sever then mine but the same, i to started with eye pain and then developed into pma. I also have very annoying tinnitus. Just wana throw out there that yes u can live with it and wanted to say ur lucky it started at 73, mine started when turned 20 and i already know im gona have it my whole life.

    • jean Apr 4, 2011

      Hello Cheryl I have just read your post and all the others but would like to reply to yours. I have been hunting on the web for a couple of months for something to help me with my symptom which is visual distortion all the time. I have had all the eye tests and was found to be normal there so I looked for another cause. It was such a relief to find others have this sort of thing also. Mine does seem to be a bit different though. I do identify with you about joining in with people who are cheerful but saying to myself “who are you trying to fool”. I have been taking antidepressant medicine for a long time but have still felt on the outside looking in. Perhaps we could communicate and help each other out by talking? Kind regards, Jean. PS I am 62 years old.

      • Lacey Colley Jun 23, 2011

        I am experiencing the same problems and they are freaking me out and cause me to have an anxiety attack. It feels so good to know that there are others that are experiencing the same thing as me. When I try to explain to others they think I am crazy.
        I myself have gone to the eye doctor about it and they advised me that it Migraine with aura, and sometimes I just have it with the aura alone.
        In regards to seeing riciness, I never knew ow to explain it at all. Mine is not really severe, it does not interfere with my daily activities but it is still frustrating.
        Please reply by email when you get this, i would like to speak with you further in regards to this.

        Best regards,

        Lacey (P.S. am a 25)

        • Kimberly Jun 23, 2011

          Hi Lacey,

          Here is the best advice I can give you, which was given to me by my wonderfully nice and caring neurologist. Visual Snow and PMA are NOT life threatening. Although our condition is annoying as hell, it is not “harmful” physically to us. Take a deep breath. Know that you aren’t alone. While my neurologist is doing everything he can to help figure out how to “get rid” of my symptoms, knowing that I am not in physical danger of any sort has done wonders for me. I have found that the less I talk, think and worry about it, the less I notice it. Hopefully, this post will help you do the same.

    • Hello! Are you all familair with the current research on visual snow syndrome/pma? Dr Schankin, Prof Goadsby Prof Ferrari . Take up contact with me by e-mail! With kind regards, Ben Wigmans

  • Anna Dec 10, 2010

    Erst einmal: es tut mir sehr Leid, was euch allen widerfährt. Gleichzeitig fühle ich mich wahnsinnig erleichtert, dass ich nicht die einzige mit diesen Symptomen zu sein scheine.

    Mit 14 hatte ich zum ersten Mal Migräne mit Aura, seitdem ungefähr einmal im Jahr.
    2001 allerdings wurde mir schwindelig, ich sah nichts mehr, die Aura bedeckte mein gesamtes Sichtfeld und dauerte ungefähr eine Stunde. Danach blieb ein Teil im linken oberen Sichtfeld zurück, der beim Lesen sehr nervig war, an den ich mich aber letztendlich gewöhnte. Die Ärzte suchten ein halbes Jahr herum und fanden dann eine kleine Narbe im MRT und diagnostizierten einen Mini Stroke. Das Ganze wurde auf die Pille geschoben und ich hatte neun Jahre lang Ruhe. Auch die Migräne blieb eine Weile weg.
    Im Mai wachte ich dann jedoch eines Morgens auf und ein weiterer Teil des Gesichtsfeldes war verschwunden. Leider ist dieser sehr nah am Zentrum meines Gesichtsfelds und stört beim Lesen unglaublich. Bisher wurde nichts heraus gefunden und alle Neurologen haben mich weggeschickt mit der Begründung, das sei sehr unerforscht und man könne nichts machen. Im Moment laufen noch die Untersuchungen auf Vasculitis, eine Rheumaform, aber insgesamt verliere ich langsam die Hoffnung. Kann man durch Aura tatsächlich vollständig blind werden? Und gibt es überhaupt eine Möglichkeit, etwas zu tun. Ich nehme Citalopram seit zwei Jahren (Antidepressivum). Sollte ich das lieber absetzen?

  • dominique Dec 21, 2010

    It looks like MS (multiple scleroses)…

  • Meredith Dec 25, 2010

    I have adrenal fatigue. If stress has been a chronic issue for you, due to whatever reasons, you may want to check this page out.

    I was surprised to see sensitivity to light and afterimages as symptoms. Also I get chilled, anxious, obviously headaches, muscle spasms, trouble staying asleep, have low blood pressure, crave my cupcakes, just to name a few symptoms.

  • kathryn Jun 3, 2011

    Thank you for describing exactly what I get with a headache ( visual snow), this is what I get. I often described it as seeing the world through pixelation as it was the best thing I could describe this.
    When I get a headache the main cause is usally as I have not slept on my neck correctly ( i was in a car crash 12 years ago), the headache normally hits me from the base of my head and works over the top to me eyes.
    I cant stress enough the importance of getting headaches checked out though – a close family member was diagnosed with a brain tumour whilst he had other symptoms the head splitting headaches was the last symptom and the one that finally spotted the illness.

  • John Jul 24, 2011

    I have had this for a few years. Good to know that there are others.

    Also, anyone reading this don’t get caught up in Meredith’s ‘adrenal fatigue’ pseudo-science nonsense. It isn’t accepted at all in the actual medical community.

  • Lily Jul 27, 2011

    I’ve experienced visual snow since I was very young. I rarely brought it up and if I did the subject was dismissed: by family, by doctors. I’ve been able to live with it anyway, and though I am worried that it is another indication of some deeper issue now that I am older, the snow itself doesn’t bother me anymore. I don’t even notice it anymore unless I am trying to.

    As for adrenal fatigue, though I am not a doctor the symptoms that are described sound a lot like malnutrition. And there’s no harm in talking with a nutritionist about diet and supplements.

  • Cheryl Byers Nov 19, 2011

    I hope you have all found out about the research now being undertaken at UCSF. The neurologistrs actually want to interview by phone people suffering from PMA/VS. I have alread had my interview so this info is FOR REAL. Go to the EYE ON VISION FOUNDATION website to get info on how to get involved in this study. There is no doubt that the number of us who have been on the blogs has shown these doctors that, though this is a very rare condition, it is not rare enough for them to continue to ignore!!!

  • Kimberly Nov 20, 2011

    Cheryl- Thank you SO, SO MUCH for posting about this new study. I went straight to the site and contacted them. I am being interviewed over the phone this week! I am so happy to have the opportunity to share my experience with a researcher!

    Also, has ANYONE in this blog EVER taken the prescription dicyclomine or its other form, Bentyl? I am beginning to suspect this drug as a possible cause for my issues.

  • Tim Dec 6, 2011

    When people are talking about “visual snow” here are they talking about visible symptoms? or rather blank areas that are erased from the viewing area instead? I have a flickering aura that I’ve had since May of 2011 and now I just had another big attack that left me with areas that are more blank that make it hard to see parts of people’s faces and harder to read signs, text, etc. Is this what people are talking about here. It’s unnerving! I suspect I’m stuck with both for a long time. Taking Triptan and Topamax. 44 yrs. old. Very healthy. Have PFO in heart but not the kind that needs to be patched closed. So frustrated.

  • Kimberly Dec 7, 2011

    There is a first-of-its kind study currently being conducted at the world-class Headache Center of the University of California, San Francisco. The goal of the study is to define diagnostic criteria for visual snow and palinopsia and hopefully find a treatment down the road.
    If you are interested in participating in a phone interview for this study, please express your wish to do so by emailing
    [email protected]

    I have already participated.
    The researcher was extremely nice.

    Maybe with enough data, someone can find a way to help all of us with these awful, unexplainable and frustrating visual symptoms.


    • Candi Jun 22, 2012

      I participated in this study too. I flew out to California from Florida. These Dr’s are serious and driven to find a cure. If you guys are serious about finding a solution to this, I recommend contacting the Dr’s and participating in the study… even if you can’t fly to California, which I might add that there is funding available to help pay for the airfare and hotel. Please, I have had this for a few years now and am raising a 2 year old son, working and soon going to school. I want my life to be like it was before this stuff happened and that can not happen without a possible treatment, which means studies like this. This is a once in a life time chance. Think of how many people have rare conditions and NO ONE is studying them…. WE HAVE SOMEONE WHO WANTS TO STUDY IT!!!!!
      [email protected]

      • Barry paul Jun 22, 2012

        I am a member of the study and was not ask to fly out there because the type of VS I have is not in his criteria. But I supplied all my info to him & spend an hour & twenty minutes on the phone with Dr. Schanklin. I belong to a Facebook group called Visual Snow, & we have over 333 members now & growing larger by the day. All of us have the latest info on what is going on with the studies, so, will you please join us? If you have a name you use in facebook, you can give it to me & I can add you to the group, or you can join yourself. My e-mail addy is: [email protected] Thanks…Barry in Pa.

  • cursedthing Dec 10, 2011

    I’ve had visual snow all my life, as long as I can remember. I’ve had eye doctors tell me that I’m seeing the activity in my brain. I’ve had other doctors tell me it’s PMA, and I’ve had neurologists tell me that PMA and visual snow are 2 different things and should not be confused with each other. I go to the mayo clinic, and I have yet to find a doctor that has any experience with it.
    Lately I’ve noticed that it’s been getting worse, almost more “dense”, so I’m instead of giving up out of frustration with doctors not knowing what to do with me, I’m being very aggressive in pushing for THEM not ot give up.
    It’s good to know that I’m not alone!!

  • Tim Dec 28, 2011

    Thank you Kimberly and CursedThing for your responses, it is indeed good to know I’m not alone.

  • Barry paul T. Jan 12, 2012

    I have VS & also suffered from Migraine Auras, but without the headache for 12 years until recently. I have not had any Auras for 10 1/2 weeks now, since I was getting them (auras) about every 2-3 weeks. I found out that eating about 1/4 stick of raw orange carrot every morning has stopped my Auras, so far. Don’t ask me why this is happening, but if this continues to work for me, I will do what I am doing until the day I croak. Go ahead, try won’t hurt to find out if this works for you. I have not noticed any change in my VS, however…barry in Pa.

  • Kimberly Jan 12, 2012

    Very interesting Barry! Thanks for the info. I have had some relief recently, as well. I have read the book The Paleo Solution by Robb Wolf (the author’s writing style is annoying, but the information is amazing, truly life changing). I have been following his ideas and as a result, my blood sugar levels have evened out . This has caused my visual snow, Palinopsia, and PMA to “calm down.” I still have those conditions BUT they do not consume me. It is much easier to ignore because it all stays at the same low level of intensity. For example, it’s much easier to forget you have your windshield wipers on if they are going at a constant speed versus fast-slow-fast-faster-medium, etc. I’ve only been following this book since the start of 2012. It’s started working in 11 days (and as an extra bonus although it was not my reason for following the info) I have lost 5 lbs in those short 11 days!!! ~Kimberly

    • Barry paul T. Jan 12, 2012

      I am happy to read you are doing better. I also started to cut down on my sweet snacks as I watch TV & already went from 153 pounds down to 147.5. I have read in the past the sugar can affect VS. I belong to a Facebook group called Visual Snow & a lot of info is on there as we already have 242 members. Nope, I am not rying to lure people away from this site, just trying to add my resources for everyone. If you feel I am trying to take away members, let me know, because I do care about everyone & mean well…Barry in Pa.

      • Kimberly Jan 12, 2012

        No worries, Barry. I don’t think anyone will feel you are trying to lure anyone away from this site. I have found that people with VS are appreciative for any and all resources, sites, chat groups and blogs they can find about the subject since there isn’t a wealth of info out there. Thanks for passing the Facebook info along. ~Kimberly

  • Alex Clements Jan 18, 2012

    Hey to everyone on this ‘site’ pardon the pun lol. I have been having visual snow for 3 years and i only just diagonsed myself a few moments ago by finding this site, doctors were useless for me and i’ve been really scared for the 3 years it’s been happening to me, i thought i was alone but couldn’t except this is only happening to me. I cannot put into words how grateful i am to everyone on this site, for the first time ever i now know whats going on and i no longer have to fear it. I am so happy , this website from today forward will improve my life and stop me being scared about it! I have monitored myself regarding my eye sight and now i know for sure i’m not the only one i’d really like to help other’s with my experiences of it to help diagnose it for them. I can now go to bed and not worry about waking up blind! Having problems in your vision that no one can identify is really scarey, One thing i wanted to say to people here is that for me personally, my mum died when i was young and this visual snow started straight after! So my experience is that being upset, stressed, anxious to the point of attacks, was what has caused it for me, unless its coincidence. From other experiences i’d say that lack of sleep is what makes it worse for me. It’s a vicous circle, i was anxious because my mum died, then became more anxoius when my vision went funny and therefore being anxious for me also makes it worse. My symptoms are, grainy vision, over sensitive vision, small almost sperm like ‘things’ swimming around my field of vision when looking at something bright or white, looking into a blue but sunny sky makes them appear.. Anyway once again a big thank you to everyone who made and commented on this site, it’s given me a sense of relief i’d never thought i’d get! Much love to you all. Alex Clements, UK aged 25.

  • Kimberly Jan 20, 2012

    Hi Alex,
    I am SO glad this site helped you. I, too, received relief when I found this blog. My doctors were completely useless to me, as well.
    Lack of sleep or poor sleep does seem to be a common theme I hear of when people talk about their VS getting worse. I know that stress can also make it worse and it DOES become a vicious cycle. I have also noticed that swings in my hormone levels and blood sugar levels have an impact on the severity of my condition. You may notice this in you, too.
    In addition to visual snow, the “sperm-like” things you are seeing are called Persistent Migraine Aura (PMA). You might want to look that term up and I know for me, getting a prescription for migraines help me out a good bit. (I know that seems strange to take a migraine medication if you don’t have the actual headache, but you can have visual migraine symptoms without actually having the PAIN of a migraine.)
    Your over sensitive vision might be “Palinopsia”. I have that condition, too, and I have to wear sunglasses every time I am on the computer or around fluorescent lighting.
    I hope the knowledge of these new visual terms helps you in your further search for answers.
    You are definitely on the right track. I know how relieved I was when I finally put a name to my conditions.
    Although I still have the eye problems, the knowledge that I would be OK brought such peace.
    Good luck to you and I hope you have many restful nights’ sleep!

    • Alex Clements Jan 20, 2012

      Hey Kimberly, Yeah i can relate to everything you say, lack of sleep, stress in life or stress caused by having this ect. One thing i’d like to point out that alot of people are saying that anxiety makes it worse, as you say the vicious circle of having these symptoms seems to make them worse but in contrast for me personally as i discovered all of this that i feel alot less scared of it and in turn my VS seems to have calmed right down, it was almost instant! It’s still there but nowhere near as apparent. After finding all of this out i looked up everything related to it i think i suffer from, VS, Palinopsia, vibrating/shimmer vision, burn-ins or after image/vision (Maybe just palinopsia), PMA and occasionally ‘pulse vision’ which is like a flicker in the vision with the heartbeat only noticed while trying to sleep and subsiding with minutes.. I also very rarley get any kind of headache, not even as often as once a year.. We both agree that the knowledge we are not alone is what has helped the most i feel, i was suffering from all of this for three years and finally found all of this the other night (i may of said) but that relief is un-imaginable. Now i know what it is by our own definations, i have to be honest that now i actually find the visual effects very interesting, finding a definative cause would be of most interest now and thinking of what the hell is causing it.. In the forums i have read already from people the most common link is anxiety, not sure if i mentioned but this happened to me a week after my mum died, i became scared and was having all manner of anxiety attacks (far worse than panic) then shortly after i noticed all these effects.. Another common thing i read is people linking it possibally to some kind of anti-depressants, which i did start taking and others who suffer have also been taking. However it’s easy for a doctor to bang you on anti-depressants when we feel anxious so whether it’s the anxiety or the tablets.. I only took them for a month after my mum died but obviously the effects have remained from whatever has caused them. I never even thought of wearing sunglasses but it makes perfect sense, since your the first person who suffers from this that has replied to me i’d love to ask you some things about your personal experiences and also welcome any questions you may have about mine. For now though i’d like to thank you for your reply and also wish you all the best. If you make any discoveries, please send me an e-mail [email protected]

  • Kimberly Jan 20, 2012

    I certainly will contact with updates.

    Take care,

  • Pamela Jones Feb 3, 2012

    My VS started Xmas day 2011. I had a very severe anxiety attack on xmas eve that caused my vision to blur. @ the hospital, the dr told me my peripheral vision was limited in my right eye, however it wasn’t. After I was discharged I began to obsess about my vision. The nxt day I had VS. I am convinced that anxiety has caused this. I’ve been probed for the past 2 months by drs and specialists. Nothing has been found.

  • Kimberly Feb 4, 2012

    Hi Pamela,
    I personally believe that you are correct about anxiety causing your VS. I am constantly on the web looking up things about VS, blogging, etc. I have heard stories very similar to yours many times. I, too, obsessed about my vision and I found that the more I focused/dwelled/worried about the issue, the worse it got. It took me over two years just to find out on my own through looking on line what VS even was and the fact that I have it. (I also have PMA and Palinopsia.) I started up a vicious cycle and things got pretty bad.
    If you are like the many others I have met online, you will find that NONE of the doctors you encounter know what is wrong with you, they probably have never even heard of visual snow and they have no idea how to help. It’s extremely frustrating. One of the good things to think about is… if by now, they have run tests (blood work, probably an MRI or an MRI-V, etc.) and they have not found anything wrong, you are perfectly healthy. It was hard for me to come to grips with this. Even once they told me nothing was “wrong”, I was still scared I was going to lose my vision or die. Once I trusted their findings, I was better off emotionally (and the VS calmed down a good bit).
    I hope this might help you and I hope your condition improves.
    Best of luck,

  • Sarah Mar 8, 2012

    I’m 17, and have had this since I was about 4 or 5. I was playing with my sister in our bedroom late at night with a little mermaid doll, and I was straining to see since we had the lights out. We dunked the doll in a bowl of water, and once we flicked the hair these dots appeared everywhere and I’ve had them ever since. They’re not inhibiting or distracting, but they never go away. I’ve had floaters for years too, but I’ve heard that some visual distortions are typically related to VS. I’ve had no experiences with drugs, nor with depression, anxiety, or panic disorders. It’s never stressful to me, but can get pretty noticeable in lowlight conditions or when I close my eyes.
    It’s pretty puzzling!

  • Barry paul T. Apr 19, 2012

    I have had VS since I was given steroid eye drops three years ago to cure a pink eye. I have been having Migraine Auras without the headaches for about twelve years. Three years ago, I discovered I had some shimmering in my peripheral vision(extreme right & left) of my only eye, the right one, as the other one was eventually lost from a childhood explosion. The right eye was always checked by my retina specialist & the eye is fine, except for a small cataract, but he couldn’t explain the shimmering, which has already driven me nuts. I am very depressed about the shimmering, althought the VS is quite mild. I alwasy think the worst is going to happen, & I am totally possesed by the PMA (shimmering). I am seen staring at walls by people as I am checking the frequency level for the shimmering, which is not in sync with my heartbeat. I am 65, & am tired of this life. I am going to ask my regular Doctor for a med to relax my anxiety & fears. I am a Hermit & I refuse to go anywheres. So be it…. Barry in Pa. ps I have post here before..

    • Judith Jun 21, 2012

      Barry, I am 73 yr old F, had auras for YEARS without any headache or pain. They became more frequent and longer lasting in last few years, and now have been told the 5 episodes I had in last 3 years MAY have not been all strokes, but Hemiplegic Migraines. I was referred to a Neurologist Stroke Specialist and a Neurologist Headache specialist, who found my TSH to indicate I needed Thyroid hormone (which runs in my family) but now I have to find out if the Hormone Blocker med I need to take for Breast Cancer is either affected by the Thryroid med or vice versa, no sense paying $400 a month for Hormone Blocker if it is being neutralized by the Thyroid. Not sure how that will affect the chance of cancer returning so need to see my Oncologist too. But Hemiplegic Migraines are SUPPOSED to start early in life and DECREASE with age, this started LATE in life and each episode has been increasingly stronger, as were the Auras.. Someday maybe someone will figure it all out.

      • Barry Aug 3, 2012

        I know some people who suffer from some of the things you do, so if you have a facebook ID, let me have it & I will add you to the group. Thanks…Barry in Pa.

  • Benji Apr 23, 2012


    I am a 33 year old male and have suffered from intermittent migraines for the past 5 years or so. They happen every 1 or 2 months, almost always at work, and are predominantly aura with little or no head pain.

    Recently I had 2 attacks in the space of a week (unheard of) and since the second attack my vision has not returned to normal. It has been 2 weeks now and I am struggling to read, especially on a computer. Unfortunately my profession is in IT, so I have been unable to work.

    I am waiting for the results of an MRI and have already had a CT scan which came up back clear. I have had numerous eye tests, all fine.

    The doctors seem uncertain so i’ve been having a look online and PMA makes the most sense to me. Is there any advice anyone can give for sufferers in the UK? Are there people/agencies that can help me adjust to this (if it’s here indefinitely) and get back to work/lead a normal life?

    I have been placed on Amitripyline 10 mg dose but I am really not keen on taking this medication… especially because nobody seems sure. My migraine attacks were infrequent and i could manage them without medication, suddenly all that’s changed which is a bit scary.

    Any advice appreciated, I am going to check out the book “Paleo solution” as mentioned above and also get stuck into eating carrots! 🙂

    • Barry paul T. Apr 24, 2012

      I was online researching info about hooking up an ethernet cable to my computer router when I saw your post pop up. I am the one who eats those carrots. All I can say about your PMA that you now have from your last Aura, is that I have read in my many researches, that there are people who have gone through what you are now going through, & in time, their vision came back to normal. How much time, I don’t recall, & how many cases this has turned into a postive result, I do not recall either, as I have not saved the link. MY PMA is constant shimmering in my peripherals, but your plight is in your central vision, which I hope will subside in time. I wish I could help more. I will wish you a very speedy recovery. Barry in Pa.

    • Barry paul Jun 19, 2012

      How are you doing? I hope your vision improved! Let us know…Barry in Pa.

  • Battar May 20, 2012

    Hi all,
    My wife started seeing snow a few months ago and was worried to the point of tears about it. Since she has other eye problems and has undergone eye surgery in the past she was convinced that her vision was getting worse to the point of useless (she can’t see well enough to use a computer or drive). The eye specialists she went to could find nothing (none of them thought to refer her to a neurologist). Eventually I wised up enough to type the symptoms into google and up popped VS/PMA. The wisest and most helpful comments I found here (thanks, guys) were “relax and stop worrying about it”. One other thing – my wife suffers from a mild form of epilepsy (she takes lamictal, so if you thought that would help with the symptoms, forget it) and is also close to menopause. Anyone ever heard of a relation between epilepsy, or menopause, and VS? By the way, one unusual point about my wife’s case – she has never suffered from migraines, and doesn’t get them now, either. All variations in a theme, I suppose. My job is to cheer her up – you’ve all helped a bit.

    • Barry paul T. May 22, 2012

      I also have VS & I strongly urge you to go to Facebook & type in a groupg called Visual Snow, as it has well over 300 members who can support your questions. If you have any problems finding the group, let me know at [email protected]

  • Pamela Jun 20, 2012

    Hey guys… no improvement in my vision… however it doesn’t bother me as much… I did just find out my apartment has black mold, and my dr believes it could be causing the vs and some of my symptoms that came along with it… I have a vitamin b deficiency from the mold exposure along with other issues… I’ll keep u all posted

    • Barry paul Jun 21, 2012

      Very nice to hear from you. I hope, once the mold & vit. b problems are corrected, you will feel a lot better, in all respects. I wish you the very best! Please keep us posted…Barry in Pa.

  • Judith Jun 21, 2012

    Has anyone else with auras and Hemiplegic Migraines had their Thyroid checked? My Headache Neurologist discovered my TSH was HIGH, indicating LOW THYROID, why didn’t ANYONE else see this, not my MD, not the Neurlogist in the hospital when I had the last of 5 “strokes” and not the Stroke Specialist HE referred me too. I am on 75 mcg and they will slowly raise that as needed. My mother’s Thyroid did not work at all and she was on 3 GRAINS of Thyroid replacement.. I am also on Depakote for the Aura’s (without headache) that I have had for YEARS, increasingly more frequent and longer lasting. I WILL eliminate Aspartame too, have found Splenda and Stevia work quite well to sweeten. Also have to watch my Potassium, almost passed out in Home Depot and trip to ER throwing PVCs turned out to be from low Potassium.. NO fun getting old, even tho HM and auras are SUPPOSED to go away as you age, mine STARTED with old age and are getting WORSE ! ! !

    • Praew Jul 28, 2012

      Hello everyone
      I’m 16 ys old girl with snowy vision for 6months.I also
      Have another visual disturbance like vibrating shrimmering
      And double vision.I feel like I’m living in hell. My patents
      took me to the hospital.I done MRI, Visual field,eye check,
      VEP,MRA,blood hormone test and auto immune test everything
      was fine.But my visual disturbance still stuck in my head.
      My doctor said that he never see the case same like me before.
      I also take medical help such as topamax,ergot,neurozamine,
      xanax,depakine,verapamil ,IV steroid but nothing better .I read all
      of your symptom is the same like me.It make me feel hurt that why
      doctor don’t know what is it and how to treat.So, I have my future plan that I ‘ll be a neuro doctor and spend the time in all of my life to study about this disease.I’ll be very glad to hear from everyone and I’ll collect your data for my medical project in the future.I still here inThailand. Sorry about my English.
      Contact me at [email protected]

  • Mary Nov 10, 2012

    Hi Everyone 🙂 I have constant visual snow… like watching a static television all day everyday for three years. I contracted lyme when I was 21 and i’m now 25. This can be a symptom of chronic lyme disease. Lyme makes you feel drunk, out of it, de-realized, dizzy…etc. ~ M

    • Barry Dec 29, 2012

      I have a great group you can join on FB, if you are interested….Barry in Pa.

  • Barry Mar 15, 2013

    I have an update on the Visual Snow research, which is conducted by Dr. Schankin in San Francisco, California. The Visual Snow phase 2 testing of the 20 patients are now done & the control patients (non Visual Snow people) will be evaluated & then compared to the test results with the 20 Visual Snow patients. The results should be available sometimes in August or after that. I will post more when I hear so. The purpose of this research is to find a treatment, hopefully leading to a cure, for Visual Snow & its symptoms. By the way, for those with Visual Snow, I urge you strongly to join our Facebook group called “Visual Snow”. If you are a member of Facebook, & you would like me to add you to that group, simply e-mail me your Facebook ID & I will do the rest. Thanks…Barry in Pa.

  • Benny Attar Mar 16, 2013

    Hi, my wife saw a specialist doctor recently who suggested that her visual snow problems might be a form of Charles Bonnet syndrome. This is also a neurological condition where the brain picks up “noise” instead of signals from the optic nerve, but is usually caused when the true signal “drops out” due to vision problems, especially in the macular (the center of the retina). You might want to look it up, just for reference.

  • Barry Mar 16, 2013

    I have my retina examined every year by a retina specialist & my Macular is just fine. Many people that have Visual Snow on the VS group on Facebook are very young adults & most of them had their eyes examined by Retina Specialists & their Macular is fine. I would supposed in some cases, one’s Macular maybe compromised, especially with advanced age & exposure to too much sunlight & smoking..

  • Barry Tanenbaum Mar 16, 2013

    Most of us on the Visual Snow group had our eyes examined by Retina Specialist, & I don’t know of anyone who was told it may be that “Charles Bonnet Syndrome” was the cause. I don’t believe a word of it.

  • Benny Attar Mar 18, 2013

    Barry, the symptoms of Charles Bonnet syndrome are similar to visual snow, but not the cause. Anyway, the doctor can’t see through my wife’s eyes, he can only make deductions based on descriptions and his own experience. The doctors’ advice to my wife was “you just have to learn to live with it – there is no cure”. That sounds familiar.

  • Barry T. Jul 22, 2013

    If anyone here has static in their vision & other visuals, it may be Visual Snow. I urged you to join our face book group called “Visual Snow”. If you want the latest information on Visual Snow research, email a friend of mine named Ben Wigmans & he will send you the latest research available. That e-mail address is: [email protected] Please just do it! Thanks…Barry in Pa.

    • Phil Sep 19, 2013

      My theory is that Visual Snow is probably a normal phenomenon that certain people become aware of, and others do not. I think everyone could probably see it in low-light or dark conditions. I find it hard to believe there is anyone who sees “only black” in a totally dark room. Because, the retina, optic nerve, and visual center of the brain remains active, regardless of light conditions on the outside.
      The “other visuals”, I have no idea.. typical migraine aura, with or without headache, and persistent aura, I just have no clue about. But, I can easily describe them; “C” shaped zigzag pattern, colorful and shimmering/blinking, spreading and growing (typical migraine aura), then you have the “purple spinners”, usually of a nice purple color, they shimmer and spin, then morph into some other type objects, also you have your “sparklies”, they look like flashing sparks, of various colors, and are part of the Persistent Aura phenomenon (lasting forever it seems).
      Here is an important aspect of all the visual phenomena: You have to notice them, and pay attention to them, and worry about them, in order to ‘have a condition of persistent auras’. Because if you get busy, and don’t think about them, then eventually the brain edits them out to a great extent. Personally, I grew up with these visuals, and became comfortable with them,, so when they act up a bit, I just watch the patterns and fall big deal. Only the typical migraine aura “fortress” is a nuisance, since it temporarily blocks your central vision to where you can’t read for a few minutes. Also, once the true migraine aura spreads and grows, it makes my head feel ‘fat’ or something, it’s weird and hard to explain. Once the aura moves out of the visual field, the weird feelings subside. Normally I feel energized after a migraine, isn’t that an odd thing. But, I read that migraines release serotonin, which could be a good thing if your brain is chemically imbalanced and you are low on serotonin, because it’s known that low serotonin can initiate anxiety and panic attacks.

  • Barry Paul Tanenbaum Sep 20, 2013

    I find your comments interesting. Why don’t you join our Visual Snow group on Facebook, as we have over 1200+ members and we are growing stronger every day. We would really like to have you as a member to share more of your views on VS & auras, etc. Barry

  • Danny Sep 20, 2013

    I think your right Phil!! I have had it all my life the Migraine with Aura im almost 44 now..Floater’s was the first I notice at 7 yrs old then at 13 the Aura hit! I do have a difference in pupil size by 2 mm Horners Syndrome ruled out by eye drop test! When my mind is busy the problem is on the back burner! I’m not sure if VS is only worse at night because we are getting ready for sleep and our bodys begen to go into rest mode! But my VS started right out of the blue after getting Tinnitus out of now where.I know its passed down from family members because my Grandmother of 85 has it my Mother has it now me!We all three suffer from Health Anxiety as well..I can see Anxiety can play a big role! “What if thinking” that come’s with Health Anxiety is a tuff one to break the cycle..Because serotonin and dopamine! is the main problem with panic and Anxiety making not enuff or to much the “flight to fight” causes a lot of problems when our mind is in Control and cant just shut it off like a light switch we only control are own though’s but its tuff when your fighting with your own mind!

  • Marion Mar 3, 2014

    Does anyone have an update on the visul snow study?
    I’m really curious to know what is causing my visual snow. Mine started after getting off of Lexapro, Valium and Xanax. I was prescribed these meds for my anxiety. Little did I know (because my dr didn’t tell me) that you’re not supposed to stay on benzodiazepines for longer than a few weeks. I was on them for a few years!

    • Barry T. Mar 5, 2014

      The American Study in San Francisco, California will be released between now & the end of next month on what they found in their studies of the 20 patients with Visual Snow & the 20 people in the control group (those without VS). They found something positive. If you wan to see the posting, when it does come out, why don’t you join our group on Facebook called “Visual Snow”? We talk about VS Syndrome here all the time. Thanks…Barry

  • Ben Wigmans Mar 5, 2014

    Marion, I got all my new symptoms after stopping clonazepam also a benzodiapine. I had contact with Dr McHenry who also knows about visual snow syndrome. See link: He said he also had patients who got more visual snow symptoms or visual snow syndrome in general, after stopping benzodiapines. I will show you the quotes of the conversation:

    Me: ”I understand that my questions are diffecult to answer. I only need
    to know one thing: Did the patients from Dr McHenry who have visual snow syndrome/hppd/snowy vision. Got additional symptoms, like tinnitus or after images or trails or “lines around objects” etc etc
    that belong to this condition after STOPPING clonazepam? With kind regards, Ben.”

    Replies from Dr McHenry:

    ”Some have”

    “There appears to be a relationship between the sudden
    discontinuance of clonazepam , which has an affect on gaba receptors and
    worsening of symptoms.”

    and his advice:

    ”I would suggest you discuss a gradually
    increasing dose of gabapentin with your doctor.”

    I did not try this yet, let me know if you got this message
    and E-MAIL me so we can stay in contact!

    With kind regards, Ben Wigmans

  • Marion Mar 7, 2014

    Hi Barry,

    How do you know they found something positive? I’ve been researching but couldn’t find any updated news on the study. thanks

  • Barry T. Mar 7, 2014

    I have good sources…trust me on that…

  • Marion Mar 10, 2014

    Hi Ben,

    I quit Valium and Xanax cold turkey almost two years ago. I wasn’t even on a high dosage but being on the medication for 5 years definitely had an affect on me. I refuse to go back on any medication due to the side effects. I am hoping that as time goes on my brain will heal itself. I know that all kinds of different people suffer with VS. People who have never taken medication, etc. I am just curious to see if there is a link with stress possibly causing it.

  • Kim Mar 10, 2014

    Hi Marion,

    I was one of the test subjects in the San Francisco VS study conducted by Dr. Goadsby & Shankin. I can tell you from personal experience that I believe the abrupt stopping of hormone pills caused my VS. Maybe it’s possible that abruptly changing the chemistry of one’s body might “kick” us into VS. ??? I am hoping to hear results soon, as well. Best of luck to you! ~Kimberly

  • Barry Tanenbaum Mar 12, 2014
  • Barry Tanenbaum Mar 12, 2014
  • Barry Paul Tanenbaum Mar 12, 2014
  • Barry Paul Tanenbaum Mar 12, 2014
  • Marion Mar 12, 2014

    Are they still set to release the findings of the California study this month or next?

    • Barry Tanenbaum Mar 12, 2014

      End of April or a little sooner. It will be posted on Facebook’s “Visual Snow” group. 🙂

  • Berni Nov 29, 2015

    Hi is this site still active ? I’m a mom of a 14 year old who was diagnosed with PMA about 4 months ago .he has been completely disabled by his severe symptoms (visual snow both eyes at times, shaking visual field and blackened area around vision in both eyes which varies in size). He’s been unable to go to school at all and at times has been bed ridden for weeks at a time. Im really worried about him and his future and don’t know what to do for the best or how to help him. Is there anyone out there who can help or advise??? Thank you in anticipation

  • Barry Paul Tanenbaum Dec 1, 2015

    Bernie…Contact me & I will hook you up with some help. I have Visual Snow 7 Migraine Auras at times…barry

  • Mari Dec 1, 2015


    Get your son tested for Lyme disease through Igenex labs in California. You can call them to request a testing kit. Visual snow is very closely linked to Lyme disease.

  • berni Dec 1, 2015

    Hi Barry Paul tanenbaum. Thank you. How can I contact you ?

  • Barry Paul Tanenbaum Dec 1, 2015

    Bernie…email me at [email protected] I have some links on face book groups that can help…

  • Kim Dec 3, 2015

    Just wondering how it has been determined that Lyme disease has been closely linked to VS? I was one of the test participants in the VS study. It is confirmed that I do not have Lyme’s disease. Do a higher percentage of people with VS actually have Lyme’s disease?

  • Jmo Feb 11, 2016

    I am relieved, somewhat, to find this post tonight, as I thought I was the only one with symptoms as described here for visual snow.
    I am a 57 yr old female, never had migraines until I was struck with a migraine with aura May 2015. Since that day, I’ve had visual snow, ( i described it as a grey shaky screen) , flickering blueish ovals, and super-sensitivity to bright lights ( outdoors, fluorescent, or computer screen).
    I have recently had a vitreous detachment, which added to my list of visual disturbances with a floater!
    Anyway, I will go into further detail in another post of possible causes of my condition, as I see it!
    I have not been on any medication, as I’ve been exploring my “problem” with an optometrist and ophthalmologist, and not a physician. I did have a CT scan. No tumour… Now I’m scheduled for an MRI.
    Hmmm… Now, I’m wondering if I should see a neurologist.
    I must read these posts again and make notes tomorrow!
    As for tonight, I will sleep more peacefully, knowing a few people in this world have similar symptoms as I have.

  • Chris Decaluwe Mar 9, 2017

    Stress and anxiety can cause literally any symptom imaginable in your body the longer you have had anxiety usually the longer it takes to get the issues under control I had anxiety for years and I had every symptom you have mentioned and more. Here is the good news I haven’t had anxiety and these symptoms for over 12 years now and what I did was changed my diet and started working out and quit drinking the best way I can tell you to change your diet is a book called eating for life there is also an app for it and also body for life hope this helps the reason I am back on here is because recently my symptoms started coming back but I started eating like crap drinking a lot and stopped working out so just starting to change for the healthy again starting today

  • Chris Mar 9, 2017

    Stress and anxiety can cause literally any symptom imaginable in your body the longer you have had anxiety usually the longer it takes to get the issues under control I had anxiety for years and I had every symptom you have mentioned and more. Here is the good news I haven’t had anxiety and these symptoms for over 12 years now and what I did was changed my diet and started working out and quit drinking the best way I can tell you to change your diet is a book called eating for life there is also an app for it and also body for life hope this helps the reason I am back on here is because recently my symptoms started coming back but I started eating like crap drinking a lot and stopped working out so just starting to change for the healthy again starting today

  • Mataruse Mar 10, 2017

    A couple of days back I had a migraine episode that almost killed me. I am a 23 year old man from Africa and suffering with this kind of disease in Africa is somewhat a “supernatural” thing and you have to work on your prayer to escape it’s clutches. It is a relief that I am not alone in this. So, I had just come from cricket practice and just when I was about to get into my yard, the aura struck. Of course I knew straight away what it meant since I have suffered from this illness since I was 7, so I got into my room, closed the curtains and turned off the light. 3 hours into the episode, normally it lasts for about 2, but this time its intensity deepened. I tried calling out for someone close but no one could hear the faint cries so I decided to go to the lounge where everyone was seated but just when I spoke the first few words to my mother, I collapsed. So I woke up 8 hours later in a hospital bed and It has been 2 days since I was discharged from hospital. I fear I will never be myself again as the aura will not go` away and is still visible when I close my right eye. I have a constant dizziness and sometimes It is difficult` to stand. Can someone help me, I feel as if I am about to die.

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