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?
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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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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
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 dhuff16@att.net Thanks!
Do you think it could be all down to stress and axiety?? could these factors worsent he problem?
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
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
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.
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!
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?
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.
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 pantasia@mindspring.com.
In addition to posting everything, I would be happy to email you directly.
~Kimberly
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.
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)
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!
Cheryl
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.
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.
Hello,
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)
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.
~Kimberly
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?
It looks like MS (multiple scleroses)…
http://www.drrind.com/therapies/metabolic-symptoms-matrix
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.
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.
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.
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.
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!!!
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.
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.
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
VS-Research@Neurology.ucsf.edu
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.
~Kimberly
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!!
Thank you Kimberly and CursedThing for your responses, it is indeed good to know I’m not alone.
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 it..it won’t hurt to find out if this works for you. I have not noticed any change in my VS, however…barry in Pa.
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
Kimberly,
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.
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
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.
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!
~Kimberly
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 clements1986@hotmail.com
Alex..
I certainly will contact with updates.
Take care,
~K
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.
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,
~Kimberly