Visual Snow and Persistent Migraine Aura – tests and treatments
In the last post we introduced two concepts – visual snow (VS) and persistent migraine aura (PMA). The first is a specific symptom which can have a number of causes; the second a diagnosis which can include the first.
First, persistent migraine aura (PMA) is diagnosed when other causes are ruled out. But as we’ve said there are a number of things that can cause visual snow (VS).
Doctors will take a careful drug history for patients with VS, because one cause is hallucinogenic drugs. The drug may only have been taken once, and time may have passed since it was taken, but it can have permanent effects.
Optic neuritis, an inflammation of the optic nerve, can also be a cause. Optic neuritis usually develops from an autoimmune disorder. Read more about optic neuritis here.
There are many other things that can be involved – even vitamin deficiencies.
Dr. Klaus Podoll, Dr. Markus Dahlem and Sofia Greene list common tests that are done for persistent aura symptoms here. These include:
- Ophthalmologic examination
- Neurological examination
- Psychiatric examination
- Thorough headache history and family history
- Thorough drug history (including illegal drugs, especially hallucinogens: LSD, Ecstasy, mushrooms, other?)
- CAT or MRI of head (the MRI is important to rule out what is called a migrainous infarction)
Other examinations may follow, including an EEG, evoked potentials (a testing of the functioning of the nervous system), blood work, and a lumbar puncture.
Obviously, if anything shows up on these tests, you’ll be following that up.
Assuming these treatments are out of the way, there are some treatments that have been tried, with some success. There is no tried-and-true established treatment, but some options include:
- valproic acid
- acetazolamide
- lamotrigine (particularly for VS not classified as PMA)
- topiramate (Topamax)
Sometimes injections of furosemide (frusemide) are used, if other treatments fail. Clonazepam is also used for patients who have symptoms from hallucinogenic drugs.
Do you have experience with ongoing migraine aura, or visual snow? Have you found anything that has helped? How did the symptoms start?
27 January 2010 @ 11:02 am
thanks for this post. i’ve been suffering from visual snow/palinopsia for a little over a year now. i actually think it was brought on by topomax, which i’ve been taking as a treatment for migraines. symptoms did not subside when i went off the drug. all normal mri’s…. it’s so scary.
29 January 2010 @ 7:20 am
You’re welcome – thanks for sharing your experience. Hope we can find a way to fight back!
29 January 2010 @ 11:05 am
I think clomazapem (Klonopin) is a nightmare drug that should be avoided at all costs. If I had it my way it would be taken off the market, along with most benzodiazepines. They are highly addictive, and Klonopin in particular is one of the most difficult drugs from which to withdraw. It is up there with Zanax, Adivan, Methadone and Heronin in terms of withdrawal difficulty.
They are not beneficial for headaches and can actually make a headache worse in the long term. And when a patient decides to try to come off a benzo, chances are the headache will return worse than ever, as these drugs change brain chemistry; it takes up to two years for the brain to revert back to its previous state after going off of a benzo, particularly the more potent ones, like Klonopin.
3 February 2010 @ 5:21 pm
Hi i suffer from hemplegic migraine and migraine aura and basically people think im taking a stroke when they hit me sometimes the effects can last for weeks at the worst i was in hospital for nearly two months and to this day my right leg is still not 100% and as i keep having these then i can only see things getting worse however they started me on topmax to try and prevent them but they arent working give them there due used to take 2-3 a month now im taking 1 or 2 so they’ve reduced them by 1 so if anyone has any other ideas would be glad to hear them!
3 February 2010 @ 7:38 pm
One of the biggest challenges, Francesco, is that there is so little that so far seems to work for these symptoms. Klonopin is used in this case only in very specific cases. But there are certainly a lot of issues with Klonopin – it is certainly something you’d want to carefully research and talk to your doctor about before you jump into taking it (of course that’s the case with any drug!).
Lisa, don’t miss our articles on hemiplegic migraine. I don’t know what types you have, but there are links on that page to more in-depth articles.
15 February 2010 @ 9:17 am
Hi,
interesting comments. My migraine history is about 36 years long,not always with aura, also paresthesias. This case stared in August with aura for a couple of days then only pain -every day until mid December. Then the aura hit me again but only this time it became persistent. MRI, EEG, neuro-oftalmologic status done, nothing alarming. Now I´m on Topiramat 50+50mg, Verapamil 80+40+80mg, Actysailic.acid 100mg, Amitriptylinhydochlorid12,5mg+chloridiazepoxid5mg for nights and the nightmare just goes on. Have no history on drugs, due to asthma avoid B-blockers. normal weight. Seems to me that the neurologists do not really know how to break this vicious circle. Any good ideas? Need to get back to work -soon!
13 September 2010 @ 3:32 pm
Steroids. Have an ER doc prescribe a short course of prednisone…….ends persistent aura.
26 November 2010 @ 11:22 am
How much prednisone and how often? This is the first time I’ve heard of anyone using that drug for PMA. I’ve tried virtually ALL of the other suggestions to no avail.
Cheryl
20 February 2010 @ 10:08 pm
I have had visual snow for almost 4 years. It began when I was 20 and has been slowly getting worse ever since. I went to four different eye doctors over the years and had so many tests done! I just found out what this condition was when I went to a neuro-opthalmologist two days ago. I am so relieved that other people have experienced this, I thought I was the only one!
8 September 2010 @ 10:02 am
hello rachel, can I just ask you how do you think it is getting worse? i have been suffering from it for about 5 years, and after the initial year of disperation i probably just got used to it, saw it at night time but it was not that annoying anymore. but lately it seems las if its worsened. I can’t go through all of it again.
24 February 2010 @ 12:30 pm
hi rachel im graham 42y/o have had this visual snow for about 2 years now . feels like its getting worse and seems very bad in the dark.it is worrying but try to carry on as best as i can. have you been advised on any medcation at all, as my diets not the best and i wonder if its worth trying multi-vits.what do you think ,somebody mentioned magnesium and vit-c and co q 10 . let me know your experiences and thoughts thanks
2 March 2010 @ 8:23 am
Hello everybody,
I apologize because my “english” is very bad
I’m french from Paris, I’m 30 years old and I have had “visual snow” for 8 months. With this disturbance, i’ve several headaches by days. The beginning of this probleme was a panik attack due to an excessive and chronic anxiety.
Today, i’m afraid of this condition 🙁
Is it really a definitve one ?
All “organics exams” have been done: eyes scan, cerebral IRM, blood tests, EEG, heart exams… I’m desappointed.
I’ve visited several neurologists in Paris but they are thinking that my problem is only a psychological one because all the tests are ok…
I think french neurologist don’t know what is “persistant migraine aura” or “visual snow”. So, i’m feeling alone with my disturbance 🙁
Do you think there is a hope to find an efficient traitment for this condition?
Have you ever read a case of remission? with wich traitment?
Is “furosemide” really efficient and why ?
Thanks a lot and have a good days
3 March 2010 @ 11:34 pm
Camille- your problem is caused by migraine activity in the brain. It’s not psychological. I first had visual snow on Oct. 30, 2009, and it lasted for 6 days. It started after several days of lack of sleep, and I’d been having daily headaches for a long time, which I didn’t realize were probably migraines. My visual snow has gone away, but now I have visual afterimages or “palinopsia” and other visual auras of flashing lights. I’ve been told by my neuro-opthamologist that sometimes it just goes away, but for most people it stays. Some drugs used to treat it are Depakote, Topamax, and Klonopin. I take 50 mg of Topamax twice a day and 1 mg of Klonopin at night, and my visual snow is gone, but my afterimages and flashing images are still there. But, overall, it’s improved about 50% and I’m learning to live with it. Getting lots of sleep and keeping your stress levels low helps too. I’ve heard of people treating it with Furosemide in Europe but don’t know of American doctors using it or heard of any success with it. Go to: http://thosewithvisualsnow.yuku.com/ and http://www.visualsnow.com. Good info there.
5 March 2010 @ 9:35 am
Thanks you very much for your answer Betsy.
Do you live in United States? Does American neurologists recognize the existence of this condition ? (“persistant migraine aura”)
In France, they always says to me : ” all yours exams are ok, so there is no problem, you must be happy and go visit a psy…”. Now I’m fed up with them. They don’t believe that my disturbance is a real one because i’m very anxious 🙁
Why there is no neurologic research for this condition? We are a lot of people who are suffering from this visual disturbance because of our brain…
Thanks, I’ve been on the web sites.
I’m afraid because there is nearly no case a remission named. Depakote, Topamax, and Klonopin (“Rivotril” in Europe i think) could be prescribed for migraine?
It’s very hard to learn to live with it. 🙁
Thanks again
2 September 2010 @ 5:16 pm
Ihave suffered from Persistant Migraine Aura without infarction CONSTANTLY for 13 years. This info always causes doctors’ jaws to drop. I see large moving blobs of white light, better in bright light, worse the darker the environment (fortunately I live in Phoenix, where the sun is almost always shining.) Have gone to all the neurologists, ;including world-famous Barrow Clinic in Phoenix, had all of the tests, tried almost all of the migraine drugs, all of the drugs suggested by Klaus Podoll et al. and recently an injection of fluerisomide, which did not help.My neurologist believes I may be the only person in the world to have it constantly (every second) for 13 years. How special! I have had no choice but to “learn to live with it.” The vision problem causes me to walk awkwardly because I see movement all around the perimeter of my vision, so don’t see where I am stepping clearly. Use a cane and sometimes a walker, depending on the terrain. The condition was made worse by cataract surgery, which I had been putting off because somehow I knew it would worsen the condition, even though doctors said “It shouldn’t because the surgery is on your eye and your PMA comes from your brain.” I have tried homeopathy, accupuncture and some ‘treatments” which were probably crazy. I am now 73 and this started when I was 60, with sudden onset of stabbing pain in eyes, followed by the PMA or VS. Fortunately, the pain subsided but was replaced with the PMA. I have resigned myself to living with this the rest of my life. During the first year or so, I was profoundly depressed and desperately sought answers all over the place. At some point, I had to make peace with it or realize that my distress and preoccupation with it was more horrible than the condition itself. To all of you fellow sufferers I just have to say: IT CAN BE LIVED WITH. Someone advised me to “allow it to be” and that is a kind of affirmation for me because it isn’t “surrendering” or “fighting” or even “accepting” I hope this helps you to cope and to be able to go on and realize life is very much worth living, even with this baffling condition. At least I did see doctors who knew there was a real condition, not psychological, even if they had never heard of it. But no one in the US has an answer either, to my knowledge.
Cheryl
6 March 2010 @ 4:46 pm
Hi Camille-
Yes – I live in the United States in Colorado. Not all American Neurologists are aware of PMA – but I went to a Neuro-opthamologist at a large university hospital (University of Colorado Hospital) who was aware of it, and diagnosed it. He said he sees about 10 – 15 cases a year. My eye surgeon (I also had Lasik eye surgery) was also aware of it too. There isn’t a lot of research on it, I guess because it’s so rare, and it’s not life-threatening. But it is annoying for sure. Sometimes it doesn’t bother me and other times I get very upset about it, especially since I’ll probably have it the rest of my life. I don’t like the idea of taking medications for it the rest of my life, and I don’t know if it will get worse or not. But I have noticed that getting at least 8 hours of sleep a night and reducing my anxiety makes it better. And, I’ve been doing yoga too. Here’s my full story: I have a history of anxiety and depression, and last year I stopped taking antidepressants for the first time in 10 years. Then I started having neuro symptoms , such as numbness and tingling in my hands and feet and face, and painful joints, which started about the same time as my PMA. So my theory is that when I stopped my antidepressants, my neurotransmitters went into overdrive (or underdrive). I had an MRI that was normal, and all other tests were normal, so my doctors think my serotonin or norepinephrine levels are abnormal, causing all these symptoms of pain, migraines and depression/anxiety, and almost fibromyalgia type symptoms. So I’m trying to get my depression under control (and neurotransmitters under control) with antidepressants and psychotherapy, sleeping 8 hrs a night (using sleep aids), exercising regularly, doing yoga, going to physical therapy, and trying acupuncture. Hopefully this will keep my symptoms tolerable. You are not crazy, and PMA is a very real condition, it’s just your doctors haven’t heard of it before. Doctors don’t know everything. But maybe you should see a psychiatrist, just to help get your anxiety levels down. That could help your PMA symptoms too, and help you deal with it better.
17 December 2010 @ 12:38 pm
Betsy –
PLEASE RESPOND. You are the only other person I have found who mentioned LASIK and visual snow in the same sentence. My onset of VS was nearly 2 months ago, 1 month after I had LASIK surgery. I saw a neuro-opthamologist who diagnosed my condition and asserted that the severe dry eye I experienced from LASIK was the DIRECT TRIGGER FOR MY VISUAL SNOW. I am urging my surgeon to file a report with the FDA, because people MUST KNOW THIS IS A RISK. I feel robbed of my quality of life and thus far have not found anyone else who has had VS develop as a direct result of LASIK. Please, can you tell me more about your situation? How long after LASIK did your VS occur?
Thank you
29 December 2010 @ 4:28 am
Hi, finally I find someone with this. My VS developed after LASIK too. Started a week safter my surgery. But I have no answers… My doctor also had no idea what I am talking about and also said that it must be neurological (I see it with close eyes too, like you). It is persistent for halb year now. -( I am desperate. I think, Lasik was a huge mistake. Pls, write me, my email is billie01@centrum.cz.
PLEASE RESPOND.
15 July 2016 @ 7:51 am
I got VS about a couple of weeks after LASIK surgery. Have you had any insight since this post on causes/cures?
Thanks!
15 November 2020 @ 9:20 am
Billie, me too, have you learned anything new?
15 July 2016 @ 7:52 am
Taylor,
Have you had any updates on this? My VS showed up after LASIK as well. Where are the doctors you have seen?
15 November 2020 @ 9:19 am
JSmith–me too–have you learned anything new?
15 November 2020 @ 9:21 am
Me too! Do you know anything? Has your doctor helped you? What treatments?
11 March 2010 @ 7:35 am
Hi Betsy and thanks for you answer,
Yes i also thinks there is a direct relation with the level of anxiety.
Me, i’ve never tried antidepressants but I will do. I’m a very anxious person but i was not a depressive one (but i will become with this disturbance 🙁 )
In your previous message you have said “My visual snow has gone away, but now I have visual afterimages or “palinopsia†and other visual auras of flashing lights”
For you, what’s the difference between “visual snow” and “flashing lights”.
I’m happy to know that your visual snow stoped with Topamax and Klonopin.
What kind of antidepressant do you use? Selective serotonin reuptake inhibitors ? (I want try Citalopram)
What do you think about hypnotherapy?
Have a nice day or night ! (it’s 14h33 o’clock in France 😉 )
2 April 2010 @ 4:28 am
Hello everybody.
I read this recently and i want to share this text with you american friends 😉
I’ts a extreme case reported in England.
Maybe research will start with this kind of disturbance?! I hope.
http://www.dailymail.co.uk/health/article-1261480/How-Danielle-started-seeing-colours-rainbow-snowing.html
Have a nice day
2 April 2010 @ 10:24 am
Hi Camille-
Sorry I haven’t responded sooner. I read that article from England. Hopefully it will fain some attention on PMA – I laughed when the article mentioned only 20 other people have it. I bet after that article comes out, they’ll have many more cases! So to answer your question, the “flashing lights” I have that are different that visual snow are sometimes when I blink, I see a flashing white ball of light in the middle of my field of vision. It just happens a few times a day. Also, in my bottom and peripheral fields of vision, I see dancing lights – like little swirling balls of light – like fireflies (do you have those in France?). The also happen a few times a day, but not every day. Also, as an update to my other symptoms, I went to see my neurologist again about my numbness, tingling and pain in my hands and feet, that happened the same time as my PMA, and they think I have peripheral neuropathy, so I’m being tested for that. This is very strange because I’m only 36 yrs old, and I don’t have diabetes and I”m not an alcoholic, which are the main causes of that. These symptoms happened first, which caused me to become depressed and very anxious – because I thought I had a terrible disease – I’m a nurse so I see patients all the time with bad diseases. My anxiety shot through the roof and my depression became very bad since it took forever to get answers from my doctors and to get appointments, and I was left to think of all these terrible things I could have had. So I think it was that high level of anxiety, depression and not sleeping, etc, that started my PMA. Have you started any treatments to reduce your anxiety yet? Any improvements with your PMA or visual snow?
9 April 2010 @ 2:24 pm
Hi Betsy,
no, i have not started a traitment yet.
This person, miss Burton has post on thosevisualsnow forum.
Have you ever post in this forum?
I wanted to ask you if you also have headache with visualsnow?
11 April 2010 @ 4:35 pm
Hi Camille and Betsy,
We all share the symptoms of PMA. I am Asian of origin but I am now living in Norway. My diagnosis came very late because as a teenager, I thought I was losing my sight but didn’t tell my parents because we couldn’t afford any treatment. I saw rainbows; when I looked at lights, they emitted rainbows. I was in my early 20’s when I saw a picture of Vincent van Gogh’s Starry Night and I related with it at once because that was how I saw the lights; the moon, the stars, lighted bulbs, they were rounded orbs of light and the other parts in sight were just dark. These days, I have flickering lights, visual snow even during the daytime, whenever I am in pain I see a light purplish coloured smoke forming the shape of a dragon, there was one time I saw checkerboards hurling toward my field of vision. I can go on with the “wonderful” sights, but the visuals and numbness in the hand and foot are really scary…
I am taking Paralgin Forte when I am in pain and desperate for sleep. My Neurologist prescribed Atacand and I have been taking it for the last three weeks now and it is making me more bedbound than ever! I am waiting for my next appointment so that I could talk to him about the side effects. The triptan I am taking is Zomig and it only helps while it lasts and we know we can’t just take it any time of the day. It’s only last year that I realized I have been suffering from migraine with aura ever since I was a teenager. It got worse when I turned thirty and suffered from depression because of it. Now that I am in my forties, I have reconciled with my sickness saying, “Take me, I’m yours!”. So I made many life adjustments—being jobless is one of them. I have no career stress and yet I have more than 18 days of headaches per month. I have done away with alcohol, cigarettes, nightlife, social life, even sex life, and I am still in pain even now as I type. I wish you well.
11 April 2010 @ 4:39 pm
I read this article on TIME and it may be interesting for all of us sufferers…
http://wellness.blogs.time.com/2009/07/31/can-surgery-cure-migraines/
18 April 2010 @ 12:33 pm
So wassup, all I think I have this Visual Snow, my symptoms are a lot like it. Except the static im seeing is horribly colorful and sometimes forms shapes and patters, especially in the dark. Sometimes random blobs fly into my vision and slowly leave my viewing field, I can turn my head and follow them. The first time I remember experiencing it was at 5 years old, but it could have been earlier. I just assumed that everybody saw colors and static all of the time and never bothered to ask anyone. Well I’m a freshman and college and I finally realized what it is. Plus, my brother has been getting migraines from a very young age. I don’t plan on doing anything as it it moderately entertaining. I wish you guys the best of luck
19 July 2010 @ 10:17 am
Hello,
I am a one eyed person who sees static/pulses in his vision. I also can see my heart pulses in my sight as well, but not bad. Retina specialist says this is common. Not sure if I have VS. Does it look white like snow in the dark or with my eye covered up? How to determine if my shimmering vision is not Visual Snow? I also see many tiny dots in my vision, that may be entopic phenomeron. Any suggestions? Thanks
19 July 2010 @ 1:20 pm
Hi Barry-
I have visual snow intermittenly. For me, it looks like white snow in the dark, but I’ve also seen black snow on a white background. At times, I’ve seen static/pulses too, along with what looks like white blood cells swirling around. The worst is my palinopsia, which is when you see afterimages or negatives of objects. They can last for 15 seconds even. I have a hard time looking at grids, stripes, and text. Looking at Christmas lights is tough too. I’ve also seen balls of light that swirl around in my lower field of vision. I was on Topamax for a while, and it did help with the visual snow and palinopsia, and definitely helped with my migraine headaches, but I started having bad side effects like chest pain and shortness of breath. So I tapered off Topamax and now I’m on propanolol – a beta blocker.
22 July 2010 @ 8:01 am
Betsy,
I do very much appreciate your time in responding to me & I do wish a solution for yourself & everyone else with their problems. I am 64, & my opthalmalogist said my eye is fine and my Retina specialist says the same. I saw a Neuro-opthalmalogist, who said my problem isn’t neurological ( I question that comment) & not to worry, as my problem won’t get worse. He said no tests are necessary. Every now & then I do get Migraine Auras that last about 20 minutes, but I never get a headache. Can’t remember ever getting a headache in ten years. I have never, at least not yet, seen any white snow, but only static, even though it is mild. I was wondering if I should go find a Neurologist, but worry about the drugs he may subscribe that may make my condition worst. Unlike you, I’ve yet to see after images, unless I stare at something for a minute or more, but then, the images disappear after several seconds. So, still not sure I have VS, or something else. No matter what I do, there is presently no cure for vs or what I have. I will try to get more sleep & reduce my stress level. Any comments from anyone is most welcome, As I said before, I wish you all the best & a cure. My wife, who I sometimes drive crazy with my paranoia with having vs, insists that I don’t have it because snow is white. She also told me that, Glenn Beck, recently was told by his Eye doctor that his now has Macular Degeneration, which is a horrible thing to have, whereby one’s central vision gos out & all is left is the peripheral vision. Now, that is terrible. Thanks…Barry- Harrisburg, PA.
6 September 2011 @ 4:31 pm
Hi Betsy,
I share your pain with the afterimages. Mine are horrid…I’ve tried to get used to them but I bet you know what I am talking about when I say that when I read this as I type, lines from above are superimposed on what I am trying to read right now.
I also have the “floaters” I believe you are describing as cells. Mine look like cells too, and they are the worst in bright light.
Can you please share with the group how the beta blocker has helped, hurt, or not affected you? Thank you!!!!
Taylor
1 August 2010 @ 3:51 pm
Hello all, I too suffer from this horrible condition. I get a misty rain like (snow) appearance on dark backgrounds but I’m relieved there are other people talking about this at a more recent date cuz other blogs ive seen have been dated for 2 years ago. my screenname is Emerican7 and i would love to talk to anybody and everybody about this to see if we can find identical causes and possible treatments. I personally have been noticing it for 2 weeks now so it’s fresh for me and I’m freaking out. Daily activities are becomeing rather difficult knowing that my vision isnt what it once was and as of yet, there’s little research being done with no cause. Awareness of VS is a must. I understand doctors don’t view it as “serious”, as it isn’t life threatening nor a cause of blindness, however; it is serious, and it does effect lives. Worst of all, I like many others, have visited my opthamologist twice, and he found nothing. I’m hesitant to go to the neurologist as everyone seems to come out normal after MRI’s. Also, my doctor passed it off as being “caused by stress”… everyone stresses and if you ask me, the VS is the cause of the stress, not the other way around. As for hallucinogens? Never tried them, ever! Which is even more frustrating bc I kno friends who abuse LSD and shrooms all the time and they don’t experience this, (I’ve asked). Anyway, once again, i have VS, I hope it won’t worsen but i’m only 23 so i’ve got a lot of time left for it to, so I’m defly scared. I should note I have floaters, worse at some times versus others, sparkly dots on a blue sky or bright wall, and the misty “snow” visuals on a dark surface such as trees or anything black. I just don’t see how doctors can’t consider this a condition as opposed to psychological issues when increasing numbers of people are reporting ALL of the same symptoms. Please IM me at Emerican7 to discuss VS with me, I’m willing to tell a lot of my history, for sake of finding similarities and perhaps pinpoint VS’s cause.
3 August 2010 @ 4:17 am
Hello everyone, since i stopped taking beta blocker, my VS stopped, too. But my tinnitus went berserk! It seems some of you are helped by beta blockers, some are not. It is really a case-to-case basis and doctors are just taking a shot in the dark.
15 August 2010 @ 8:19 pm
Hi Betsy,
I also live in Colorado. Can you please refer me to the neuro opthmologist you saw at the University of Colorado Hospital? Thank you very much.
Best,
Mike
3 September 2010 @ 10:12 pm
Hi Michael – Sorry – I just now saw this message. I saw Dr. Bennett in the Neurology clinic. He is great! He understood right away what I was explaining. He told me he sees about 10 – 15 cases a year, that there’s really no cure for it, although some people try Topomax, Clonazapam, or other migraine drugs – although they aren’t too successful. I took Clonazapam for a while, which helped me calm down and sleep better – and my visual snow did improve. Also, he said it’s not a problem with the eyes, but rather activity in the brain, so I won’t go blind. He said most likely it will never go away, but sometimes it does for some people.
My symptoms have improved once I started sleeping better. I also was diagnosed by my Neurologist (Dr. Nagel in the same Neurology Clinic), with a severe Vitamin D deficiency, which caused a lot of other symptoms I was having, such as numbness/tingling in my extremeties, neuropathic pain in my hands and feet, and painful joints. I’m wondering if there is a connection there. I’ve been taking a high dose of Vitamin D and noticed some improvement with those symptoms. Hope Dr. Bennett can be helpful to you.
3 September 2010 @ 10:15 pm
Wanted to know if anyone with visual snow and/or palinopsia has also been diagnosed with a Vitamin D deficiency? I was recently diagnosed with a Vitamin D level of 17 (Normal is 30 – 80). Around the same time my visual snow and palinopsia started, I also had bilateral numbness/tingling/neuro pain in my hands and feet. I also had very painful joints – especially my knees and hips – and I’m only 36. I’ve heard other people complain of visual snow/palinopsia and painful joints at the same time. I’m wondering if there is a connection.
14 October 2010 @ 1:31 pm
My neuro-opthalmologist identified my unusual persistent aura as visual snow related. I see a grayish target pattern that looks much like a macular disk; it becomes “visible” and disappears in rhythm with my heart beat. This aura appeared rather suddenly in the fall of 2003 for no apparent reason. I also have chronic migraine and traditional aura migraines. While nothing has succeeded in stopping any of these problems, the headaches at least have been greatly softened with gabapentin, careful diet, exercise and plenty of sleep. Once I knew that my odd aura was probably a persistent aura and appeared to be benign, it quit bothering me so much. I learned to ignore it.
23 October 2010 @ 10:02 am
Ruth,
I am a one eyed patient who had a corneal graft in it over 45 years ago, & like you, I developed this target vision, especially after working out, when my heart beats faster. Once it calms down, it is not much noticable, although, I can still count my heartbeat in my vision. I also have migriane Auras ( which last about 20 minutes), without the headache, & recently developed Visual Snow, which is really not bad. The retina specialist examine me & did a retina scan, & found nothing. But I am paranoid about macular problems & tend to distrust my eye doctors, that all say the same thing, I don’t have any macular problems. Still, I stare at the sky, searching, looking for anything. How can one see their macular disk, as you wrote? Don’t people with normal eyesight see this if they stare at something? It is seen easier staring at the sky. I am 64 years old, by the way. Thanks…Barry in Pa.
25 October 2010 @ 7:50 am
Barry,
It is nice to know that someone else has the macular disk target. My rather experienced array of eye doctors have been non-plused by it, but like you they assure me there is nothing physically wrong with my eye (It only occurs in one eye) and I have become rather unconcerned by it. I have a theory about its development which I believe to be correct. In reading Oliver Saks book Migraine (which I don’t necessarily recommend, he was fairly chauvinistic and paternalistic in this early writing) I discovered that migraine can cause the eye socket to swell in the same way that it can cause inflammation of of the nasal passages. About the same time I developed the migraine target I also developed narrow angle glaucoma. When I inquired about a possible link between the two, my eye doctors suggested it seemed possible, but they had never heard of it. When the narrow-angle glaucoma was treated by a simple laser hole “punched” (no pain) in the iris to promote fluid flow in the eye, the disk did not disappear. They suggested that it is a brain generated vision – an aura – and may or may not ever disappear. Once I felt I had an answer for what it was and how it might have developed, I quit having much concern about it. I’ve had the aura since the fall of 2003, the glaucoma treatment was in spring 2005. There have been no changes. And if it helps, I am also in my early 60s and it is much more prominent and active when I excercise. If you have lost the vision in one eye, I can imagine that the health of the other eye makes you a bit jumpy. It would me. If you don’t completely trust your eye doctors, and I can certainly understand how that might happen when you have something they have never, ever encountered – the macular disk target. I’ve had a little fun with mine, my migraine clinic is at the local university and I always see a trainee before I see the doctor. In these pre-exams I always mention the target and the student is always looking for some explanation for it, often rather odd. I figure it helps them to come across something unusual – it breaks linear thinking – and who knows, maybe one of them will uncover something more about this odd phenomena.
Hope any of that is of help.
Ruth
15 October 2010 @ 7:55 am
Just as I started reading the comments regarding auras I started having one which lasted about 15 minutes. I, too, have them frequently now but never have the headache with them, I sometimes get nauseated while they are happening but I usually lie down to let them pass. I am 83 years old and also feel that nothing can be done to alleviate what is happening. I have had an MRI and that was normal so the fear of a possible brain tumor happening has been eliminated. Bright sun and lights do affect the frequency and also the slightest feeling of anxiety does trigger an attack. It’s a slight comfort to realize that we aren’t alone while living with this and I have learned to accept what is happening and try to continue to enjoy a good life along the way. Appreciate receiving all updates on what progress is being achieved. Keep up the good work.
20 October 2010 @ 7:16 am
Has anyone tried I.V. prednesone yet? If so, did it work?
Thanks,
Mike
17 December 2010 @ 12:40 pm
Hi Mike,
I have not tried I.V. I did just finish a pack of prednisone that I was really hoping would help…it did not. I am starting lamactil (or lamotrigine, same thing) next week (this is one of the few anti-seizure drugs that has shown to improve some patients). I will update on here if I see any improvement in my symptoms.
25 October 2010 @ 10:44 am
I have floaters and afterimages and a pulse in my eyes. i also have pins and needles on the left side of my head. I cant sleep laying down anymore because I wake up with unbearable pain on the left side of my head and behind my eye. I also get occular migraines. I havent been able to get an mri or cat scan because im pregnant. it seems that some days my vision is better and clearer, but some days i see flashing light anywhere and visual snow, and its scary. The doctors think its pregnancy hormones, but i remember it happening after I got pink eye when I was outside in the woods. I was also wondering if it could be lymes disease? Im really worried, and just want my vision back. I’m only 17.
27 October 2010 @ 12:14 pm
Almost the only thing I haven’t tried for my PMA, which I have had CONSTANTLY for 13 years is prednisone. Please, whoever first suggested it, tell us how much, how often, etc. so we can talk with our doctors about it. I’ve tried everything suggested by Dr. Podell, about 20 migraine drugs, four or five seizure drugs, even the IV flueroniside.
17 December 2010 @ 12:42 pm
Hi Cheryl,
I just completed a 6-day pack of prednisone, 5 mg tablets to no avail. But don’t let that deter you, it has apparently worked for many patients. I am starting lamactil next week. Have you tried that one yet? Look forward to hearing back from you….
15 November 2010 @ 3:12 pm
i’v had the visual snow,and Tinnitusas long as i can remember but never recognized it as abnormal until i read something on visual snow. its not something that gets in the way of life but it just……..annoying. every doctor that i have told has shrugged it off (general physician, Neurologist, ophthalmologist). has anyone had any successful treatment?
9 January 2011 @ 2:55 pm
I have been on glutenfree diet for almost half a year now and the tinnitus became a bit quieter. Maybe you should try it?
7 January 2011 @ 12:02 pm
Hi Guys,
I think only the IV prednisone works and not the oral form. I had a really weak and short treatment of IV prednisone for an un related illness and it took my PMA away. However, I got sick about 6 months later and it came back. I also just finished a treatment program of oral prednisone for PMA with no results. So, from my experience, I think that only the IV form works.
1 March 2011 @ 9:55 pm
Michael,
Can you tell me more about your IV prednisone treatment please? Were you hospitalized? How long was the treatment? How much?
Thanks,
Taylor
8 January 2011 @ 6:29 am
I thought my fuzzy, tv snow like vision and floaters had to do with my less than perfect vision. I had no idea that it was also linked to my tinnitus as well. I’ve only been recently ( in the past 6 months ) been diagnosed with migraines after getting all my life apparently – they only appear with headache some of the time and watching the attached clip made me cry with recognition. So did another list of symptoms I stumbled across earlier on this site. Finding out finally that the reason I’ve felt like rubbish most days of the week has always been hard to explain to doctors. I am almost grateful now that I got hit with such severe daily headpain for a few months which finally got me a CT scan and then when the atrophy showed up a booking with a Neuro and a MRI and then the diagnosis. Now I am able to recognise when the fuzzies start ( and other stuff ) it’s time to slow down and batten down the hatches so to speak. I’m still in a bit of denial land – particularly since I don’t get the blinding, piercing headpain (and because I’ve been living with this weirdness for so long it’s do-able to keep going) – that some of you seem to get but my Neuro has explained to me that I am in severe pain I just don’t feel it in the same way. It’s really hard to explain to people who don’t get migraines. :s
So glad I found this blog/site. 🙂
8 January 2011 @ 3:02 pm
Your comment “It’s really hard to explain to people who don’t get migraines.” is something I have said to people, but it makes no sense to most. Your comments remind me that what I’m feeling isn’t just felt by me, isn’t a figment of my imagination. It helps manage it better. Thanks.
26 January 2011 @ 9:50 pm
Hi I’m 16 years old and a dew months ago I gOt hit on the head and didn’t think anytjkn of it and I then went to my friends house and we smoked some weed and I had an anxiety attack bc of it and this wasn’t my first anxiety attack from weed. 2 hours later I wAs fine and back to normal an then we to sleep. The next day I was wiu my friends and I felt my adrenaline pumping and I started to have an anxiety attack. This was my first attack not smoking. So for the next 4 days I would keep having them and break down crying in front of my parents because I was scared an they didn’t know why was goin on with me. It took 8 doctor trips, 1 eye doctor trip, and 2 theraPy trips. Finally I went back to the doctors and mentioned the bein hit in he head and he diagnosed me wiu a mild concussion… So my anxiety got better and I thought my blurry vision was improving which now I know is visual snow and I thought after my anxiety and concussion disappear so would the VS. It’s been almost 5 months and my VS hasn’t disappeared and sometimes it gets better. My VS isn’t that snowy it’s almost really faint and I only notice it when I try to or when I’m looking at a solid color whether it’s a wall or somethin dark. It tts worth during the night. I just want my vision to get back to normal again and I’m really scared bc nobody seems to know how I feel and I feel alone and sometimes I get so frustrated I jut lock myself in my room and start crying. The whole time I was typing I’ve been crying because I dont want to keep living like this. PleAse help someone I don’t know what to do and I’m scared! P.S this was typed on an iPod so I apologize for the really bad spelling. but can somebody please help! Anything that might help me or even give me hope! Please
27 January 2011 @ 1:54 pm
Reed,
My problem isn’t visual snow exactly, but the docs say it is VS related. It’s a pulsatile aura with a pattern that interferes dramatically with reading. I’m uncommonly sensitive to drugs which prevents me from trying most, but what has helped – much to my astonishment – was psychotherapy. It took a while, but now I often do not notice it. It’s there alright, I just somehow don’t really see it. I don’t know if it would work for standard VS, but I’ll tell you, it is worth trying to find out if it can work for you.
27 February 2011 @ 1:38 am
Ruth:
Could you tell us a bit about the type of psychotherapy you had? Was it cognitive skills or something else? Might be very helpful for of the folks here. Thank you and glad you’re doing better.
27 February 2011 @ 9:06 am
Michael,
The therapy I received was both cognitive and psychodynamic, probably because the therapist was trained in psychodynamic methods. It’s pretty clear to me that when you are highly concerned about something, in my case the sudden appearance of an unidentified problem which interfered with my vision, that it is easy to focus on it – way too easy. Vision, after all, is terribly important to everyone. A threat to it, or interference with it, is a threat to our well being. The therapy – not to mention a specific diagnosis – helped relieved me of worry about the problem and allowed my attention to focus elsewhere. Hope that helps.
14 April 2011 @ 8:01 am
Hi Reed,
I have had a very similar experience to you, keep strong because it can be something you adapt to.
I was at a house party in August 2009 when I smoked a few puffs of someone’s joint. I have no idea to this day if it was just really strong weed or if it was laced. Either way I had never done weed before and it had a really strong effect and freaked me out.
I went home and sobered up but was left with blurred vision, visual snow, feeling off balance, numbness and a really foggy brain. This all made worse by the anxiety of worrying about it all.
It’s been 1 1/2 years since then and I had a lot of psychological treatment to help deal with it. All my other symptoms went away apart from the damn Visual Snow. To be honest I get on with life ok now even though it is still with me.
On a sunny day I hardly notice it and I live for those days, but try to ignore it and accept it and it will reduce in severity. I also hope more than anything one day they will find a cure.
Tom
27 January 2011 @ 12:21 pm
Hi Reed,
I am so sorry for what you are going through…but trust me, you are not alone, and you don’t need to feel like you are. I know it is very frustrating because your doctors probably didn’t know what you were talking about right away – mine didn’t. I’ve had VS for over 3 months now. Through my own research, I have found a few medications that seem to have worked for a few patients before. I am trying one now, it’s an anti-seizure med called lamotrigine. Doctors don’t really understand VS or epilepsy, but there seems to be some parallel between the parts of the brain that both conditions affect. I have not had any change yet but I am trying to stay hopeful. Another medication that I have found is divalproex. Go to this website, and scroll down to “Treatments”…you will see that there is not much information, because there’s simply not that much research on it. But I would encourage you to work with your parents to see a neurologist, and if they think it’s okay, you can try some of these medications. There is no guarantee – they have not worked for everyone. But it’s worth a shot.
http://www.migraine-aura.org/content/e25968/e26078/e26305/index_en.html
It is completely normal to be depressed about this…it’s a very difficult thing to adjust to and you’re right – no one who doesn’t have it will understand how uncomfortable it is. I am 25, and after the onset of my vision problems (I have a lot more than just VS) I cried for 90 days straight…I am better now, but it still gets me down sometimes. Hang in there and good luck…let’s keep in touch on this forum and I will let you know if lamotrigine works for me. I plan to try every medicine possible until my health insurance runs out in 9 months. One thing you’ve got going for you is that you’re young, and probably have your parents’ insurance for a while yet to come. 🙂
28 February 2011 @ 10:46 am
Hi Taylor,
I was wondering if you’ve had any success with the Lamictal? I just started mine on Saturday and seemed okay but then by Sunday night I woke up having a panic attack, which I haven’t had for a very long time. Now I am convinced my afterimages are worse. Maybe it’s just me thinking that, but now I am scared to take anymore. Please let me know how your treatment is going. Has anyone been tested for a clotting disorder. I heard there is a Dr. in the UK doing a trial on the blood plavix for people who have chronic migraine.
Thanks,
Candi
1 March 2011 @ 9:43 pm
Hi Candi,
I tried lamictal for 5 weeks, and saw no change so I stopped taking it. Nothing got better or worse – just the exact same. I too, have after images (palinopsia), visual snow, and severe floaters.
However, I just saw another neurologist today – and this is exciting news and everyone should take note of this. His name is Dr. John F. Rothrock, and if you look at my comment to Reed posted above, you will find the website link from which I got this doctor’s name. Birmingham at the University of Alabama and has successfully treated a handful of patients like us before with certain meds. From my own research, there are only 7 doctors on earth who have successfully treated persistent migraine aura (visual snow, etc.) and he is one of them. He prescribed me to a new drug today and said it may or may not work, but if it does, it will be immediate and I will see results within a month. I actually do not have the name of the drug on me right now, because I dropped it off at the pharmacy and have not picked it up yet. After I pick it up tomorrow, I will repost the name on here. Don’t give up on lamictal yet, it does work for some people. But based on my own experience, if you don’t see any change or if symptoms worsen within 1 month, I would stop and move on to something else. Another thing to note, you may want to take a look at lamictal side effects…If I remember correctly, during the initial first few weeks of treatment, some uncomfortable side effects can occur and I believe I remember anxiety/depression being one of them, so that could explain your panic attack. For me, I had bad headaches the first 2 weeks on lamictal – how ironic, a migraine med that causes headaches 🙂 but the headaches subsided quickly and I had no adverse reactions after that. Keep hope alive. I will get back to you with the name of the new drug. Another side note, the neurologist I am now seeing actually helped develop the drug he prescribed to me…
p.s. I have not been tested for clotting disorder. Have you?
7 March 2011 @ 11:17 pm
Candi –
To follow up on my previous response, the med I am trying now (started it last night) is Depakote, or generic Divalproex. I will be sure to notify everyone on here if I see any changes with my visual snow/palinopsia/floaters.
Hang in there with the lamictal! How’s it going?
Taylor
1 June 2011 @ 4:09 pm
Taylor, any update for us on the Depakote?
1 June 2011 @ 4:17 pm
Candi – see comments below on depakote…no luck is the moral of the story. did you have any with lamictal?
27 January 2011 @ 2:06 pm
Thanks I’ve noticed with more sleep the better my vision gets and the less sleeP the more I can see it. I also thinks it’s stress related in some way
21 February 2011 @ 12:02 am
I’ve had VS since I was 16 (now 53–yikes). My onset was fast and not related to drugs—just suddenly noticed “stuff” in my field of vision. Made for a very tough freshman year at Berkeley: fear that I was actually hallucinating and schizophrenic in the making. Horrible time.
Most MDs were no help: “nothing wrong”, etc. Neuro-ophthalmologist at Scripps in San Diego (where I now live) was the first to have any insight. For me, the best strategy has been to try to control anxiety and not focus on the VS. When I’m very engaged in something else––sports, movie, thought, book, conversation, etc.––I’m barely aware of the VS. Recommend exploring this, if your meds (or other strategies) aren’t working too well. I guess it might fall under the category of Cognitive Therapy. Anyway, it’s great to connect with people who have experienced similar concerns, fears, struggles, etc. You can feel very alone when something is real to you but not to anyone else, particularly less-than-sypathetic docs. Hang in there!
22 February 2011 @ 5:51 pm
Hi everyone,
I’m 30yo, female. I’ve had infrequent migraines with aura since puberty, and palinopsia and low-grade VS my entire conscious life (the VS is always present, worse in dark conditions).
Michael I resonate completely with your analysis–in the absence of a definitive treatment, the key is deflecting your attention.
The times in my life when I’ve been most bothered by the VS and palinopsia are when I’ve been trying hardest to find out what causes them and fight them off. And when I’m anxious about other things, they seem worse, and I persuade myself that they’re worsening. But when I’m busy and active, they are not at all debilitating. I’ve found that the more I exercise, draw, and work, the happier I feel. I run about 25 miles a week and work 50-60 hrs per week (lab research–nothing like a lifetime of auras to nourish an interest in biology!), and I find that the more physically tired I am when I go to bed, the easier it is to fall asleep and not be psychologically distressed by the sparkling confetti I see in the dark . And I second everyone else’s advice about getting plenty of sleep–being well-rested but not over-rested helps tremendously with the palinopsia (I actually find the VS is worse if I sleep too much).
I really think that for me at least, my degree of anxiety and state of self-satisfaction have a huge impact on at least the perceived degree of my symptoms, if not their actual severity.
2 March 2011 @ 12:57 am
Because my VS diminishes significantly in bright sunlight, a San Diego neuro-ophthalmologist thinks I’m not experiencing PMA but am just hypersensitive to normal visual “noise.” I think she’s right. Does anyone else’s VS dissipate when bright light shines into their eyes?
I think really good lighting (no fluorescent, for sure) is important to living with VS.
5 March 2011 @ 3:55 pm
Michael — how strange that you say it made for a tough freshman year at Berkeley. I live in Berkeley now, just graduated from UC Berkeley when this VS began several months ago. Maybe there is just something about the air here in this city, huh? 😉
8 March 2011 @ 7:46 am
Michael,
Yes, I believe that my VS gets better in the light as well. I’m going to see a neuro-ophthalmologist as well in a few weeks and I’ll report back here what she says.
Mike
8 March 2011 @ 2:28 pm
Look forward to the input, Mike. Thanks.
5 April 2011 @ 12:59 am
Hey Mike:
Just curious if you saw the neuro-opth. Thanks.
Michael (go bears!)
8 March 2011 @ 2:30 pm
Chad:
Does the VS get better (seem to dissipate) when good, bright light shines into your eyes? If so, might just be “normal visual noise” that you’ve become hyper-aware of and not persistent migraine aura. At least, this is the opinion of a neuro-opth at the Shiley Eye Institute in SD.
8 March 2011 @ 5:04 pm
My VS is way better in daylight, unless I’m looking at the sky, which is always really buzzy with snow. The palinopsia is worse in bright light, though–I get instant afterimages off shadows and white objects, and some degree of afterimage off everything else if I let my gaze rest on it for longer than a second or so.
(I also live in Berkeley; have been here 8 years. Huh. My VS was noticeable before I moved here, though the palinopsia has gotten stronger while I’ve been here).
5 April 2011 @ 1:02 am
Berkeley: the VS capital of the world:-)
30 April 2011 @ 2:49 am
Hi My daughter has had visual snow for 6 years. Next investigate pinched nerve in neck or stroke symptoms or optic nerve inflamation (take clawsfoot to help ) or auto immune disorder( free radicles) or some plant she touch or snius blockage form inflamation 0r INFLMATION is causing sleepless night ,tingling hands and feet. headaches, Or apnia? We are still trying to find her some relief.
1 June 2011 @ 3:57 pm
Hi, Have you found an answer for your daughter yet?
30 May 2011 @ 7:47 pm
Taylor, how is the depakote going? I have some on top of my fridge too scared to take hhehe. One of my 5 neurologists recommended it but I never took it. Please let me know. My email also is skimordiegirl@yahoo.com
1 June 2011 @ 4:13 pm
Hi candi –
unfortunately depakote was unsucessful. i did a one month trial and saw zero changes. there are 2 more medications that my doctor wants to try…i will post here when i start the next one next month. for all our sake, let’s hope it works.
2 June 2011 @ 12:24 pm
Hey Taylor,
Thanks for getting back to me and us 🙂
Yes, please let me know what else you are planning on taking.
Can I ask, how did yours start?
Thanks,
Candi
30 May 2011 @ 7:49 pm
Also I started a blog as well on blogger.com called life through sunglasses if anyone would like to follow.
7 June 2011 @ 8:45 pm
Taylor, No I believe the Lamictal made it worse for me. I started noticing a lot more trails. How did you get your VS? I am unsure with mine… I was on beta blockers the first time I noticed anything weird, and then stress and going off a medication made it come on very strong.
7 June 2011 @ 8:47 pm
Also, Dr. Peter Goadsby who is working at UCLA is studying this condition in hopes to figure it out. Anyone near there I’d recommend you go see him and please let us know if you’ve had any luck with him, as some have. I live in FL and can not afford to go unfortunately.
14 August 2011 @ 1:12 pm
Hi everyone! Just curious if you’ve had any luck with treatment or if Vs ever went away? I was diagnosed by a neuro-opt 3 weeks ago with.visual snow.. And was told it would go away on its own but I beg to differ from the research i’ve done. i was sick for 6 weeks with acute sinusitis prior to visual static symptoms and am.wondering if it causes it? Please let me know if anuthing helped you get rid of it.
16 August 2011 @ 12:31 pm
Hi Jenna, i am sorry you are going through this too. Do you only have the static or do you have the afterimages and trails?
Some people their vs has gone away on their own….. I have had mine however for 3 years now. I am not sure if it was stress, an illness or going off antidepressants to get pregnant that caused mine. I am still searching. Hey i too get sinusittis and infections a lot. Did you take any medication for it maybe we have something in common. You can email me at skimordiegirl@ yahoo.com
I hope to talk to you soon,
Candi
6 September 2011 @ 4:49 pm
Hi Jenna,
I don’t want to tell you to lose hope, but I want to be honest with you and give you the best advice I know as an experienced VS veteran among other visual problems: Cope.
And yes, your sinusitis was most likely the trigger. The trigger is different for everyone. For me, it was a bout of seveeeeere dry-eye one month post-op from LASIK surgery. For another person I read about, they did a head stand, and when they came up they had VS. It’s a funny thing, and there are so many triggers it’s amazing.
I went to see a world-class neuro-opth at Emory in Atlanta, and after giving me a diagnosis of “Persistent Positive Visual Phenomena” that was her advice to me: “Start coping.” At the time, I was incensed. I could not believe this woman was telling me that the only thing she could do for me was prescribe Valium because this condition would give me great anxiety. However, in the end she was right.
I have tried the following medications to no avail, these are 4 of maybe 7 meds that have any indication of working for people like us: Lamotrigine, Depakote, Prednisone, Furosemide.
BUT, they HAVE worked for some people – not anyone on this board, but Dr. John F. Rothrock at the University of Alabama in Birmingham has successfully treated patients with both Depakote and Furosemide. Just depends on the individual. I have been working with Dr. Rothrock since March, but after 4 failed attempts, and starting grad school last month, I decided to give it a rest for a while and just try to handle myself as best I can.
Sorry to be so blunt, but I wish someone had been upfront with me like that when I first struggled with this. Good news is, as horrible as it is, you will get through it. I have gone on with life and did things I did not believe I could with VS. Hang in there, and know that we are all here to support each other. E-mail me any time at taylorking11@gmail.com.
6 September 2011 @ 4:59 pm
Great post, Taylor. Very honest but still encouraging. Sometimes I wonder if oxygen level in the brain is a factor—-my VS looks very much like when you stand up too quickly after a hot bath. Has anyone every had their O2 levels tested—very simple non-invasive test now, usually on the fingertip.
My other theory is that the vitreous humour (jelly) in the eye is, for some reason, pressing on the retina more than normal—so the effect is like rubbing your eyes hard.
6 September 2011 @ 5:15 pm
Thanks Michael. The O2 levels could be related. And I also agree with your theory about the vitreous humor…that is a common cause for floaters, but floaters can also be a manifestation of PMA, so it’s impossible to tell. Also, if the floaters are because of issues with the vitreous humour, the only treatment is surgery, which is highly discouraged by most docs except in very specific cases.
Thanks for the feedback Michael.
19 August 2011 @ 9:03 am
Hey Everyone,
Man, I’ve had VS for about 5 years and it sucks. I’m in the process of working with a very good functional medicine doctor on this. He thinks that it is immune derived, which is affecting our brains somehow. He thinks that our immune systems go haywire because of the drugs we took, stress in our lives, bad diets, etc. and by fixing the immune system, we can eliminate the vs. He had me run a ton of blood tests and we’re waiting on those to see what direction in treatment we should go in. I’ll keep y’all informed as my treatment progresses. Hopefully this works and you can share it with your local docs!
19 August 2011 @ 12:55 pm
Hey Michael, please keep me updated on anything going on. Skimordiegirl@yahoo.com
Where are you located
6 September 2011 @ 4:41 pm
Michael, I too am curious as to how you are doing.
Please post here or e-mail me at taylorking11@gmail.com.
Good luck and godspeed!
20 August 2011 @ 1:10 pm
Because of its flicker, fluorescent light aggravates VS. Avoid it and make sure you have good quality incandescent lighting for reading, etc.
23 August 2011 @ 7:00 pm
Hi Everyone
I live in Australia and i have had VS and tinnitus for 2 years. i have been to many doctors and specialists to no avail. They dnt even know what i am talking about. I have an MRi which was normal. It seems to get worse when i think so much about. i am going to the Sydney Eye Hospital on Friday. i will let u guys know what happens.
Also Micheal can u pls tell us how ur going on any results?
23 August 2011 @ 7:02 pm
Im thinking on going on a diet to see if that helps as well, only fruit and vegetables…..
25 August 2011 @ 2:19 pm
Let me know how it goes. I bought a juicer but havent used it much.
Ttys
Candi
21 March 2015 @ 10:22 pm
Metabolic diet meat/veg/ no salt/little carbs/vit sup
25 August 2011 @ 2:15 pm
Hi Aprill, my name is Candi. If you ever want to talk, im always here. Skimordiegirl@yahoo.com
Its been almost 3 years for me now. raising a little boy on top of tuis stuff has been trying to say the least, but i have faith this will resolve.
Hope to talk to you soon!!
Candi
1 October 2011 @ 8:32 am
I’ve had visual snow as long as I can remember (even as a child). I’m about to start on topomax. Anyone else try this? wondering what your experiences were.
6 October 2011 @ 8:50 pm
Hi, it seems that its hit or miss with some meds. Some people do good some not. Topomax has helped some and it has caused vs for others too. Just work close with a dr who has seen this before and treated. Where are you located?
6 October 2011 @ 4:51 pm
Hi Guys If you live close to Wisconsin there is a nueroscientist that wants to speak with VSers. Unfortunatly i live in Australia so i have missed my chance. But if you know anyone who dose pls let them know. If you yourself can pls go see him. My email is edisonyildiz60@hotmail.com pls spread the word so that people may go see him. This could be the start of something big.
7 October 2011 @ 5:56 am
ive only recently found out that i have visual snow, ive had my eyes checked and been to retina specialists who say everything looks normal. im at the point now where i cant deal with it. i have it 24/7 and it just annoys me so bad i feel so alon and depressed where can i go to get help?? sorry to moan im just feel so down i just want it to go away. thankyou
7 October 2011 @ 2:36 pm
Chloe:
Hang in there! You are not alone and we all know what you’re going through. Keep us posted on this site and try not to focus on the VS. I know that’s not easy but, until an effective treatment is found, it’s a good strategy, I think.
You might consider cognitive therapy and, possibly, some anti-anxiety medication. In my case, the anxiety is worse than the VS itself.
Keep in touch with us, please.
michael (in san diego—there are 2 michaels in this group)
9 October 2011 @ 9:50 am
Hi Chloe,
It breaks my heart every time I see a new person join this board…but that was me a year ago. As Michael said, we all know what you are going through. I had a terrible time adjusting to my new vision and cried every day for the first 3 months. I was so depressed I didn’t even recognize myself for a while….I share this, because you need to know that that is how the normal person reacts to VS. It was hard for me to acknowledge that my life would be different, and it was not a temporary change. But I also want you to know that not only will you get used to it, you can still succeed with it. I know right now you may feel hopeless, but trust me when I say you can live with this. For me, VS was only the beginning…that is something else you need to be aware of. Sometimes VS is the first of many bizzare visual manifestations of Persistent Migraine Aura, or in my case, Persistent Positive Visual Phenomena. New symptoms can be very startling and frightening. I don’t want to overwhelm or discourage you, but it is something to keep in mind. If you ever want to compare symptoms, coping strategies, or anything at all, please feel free to e-mail me at taylorking11@gmail.com. And we all feel your frustration that there is no cure for this. I wouldn’t wish this on my worst enemy, but if only one doctor on earth could actually experience this, the medical community might realize how seriously it affects quality of life, although it may not be life or vision-threatening…then maybe we could make some progress.
Hang in there and keep us posted on your progress…..reaching out to one another and creating a community of advocates is the only weapon we have right now to convince doctors to take this seriously. So it’s important that we support each other, and update on what treatments have been tried, failed, or worked.
7 October 2011 @ 6:16 pm
Chloe, I think we’ve talked before, you can email me any time. All of us feel the same as you do. This is a tough disorder….symptoms, whatever it is. It pains me to see someone else going through what i go through because i understand how depressed it can make you feel. My best advice i can give aside from try your hardest to ignore it as Michael in san diego said, is to continue your normal routine with life, family and friends. I secluded myself from all normalcy and i am paying for that now. We create friendships and love around us…. So when we seperate ourselves from that we get more and more alone.
Skimordiegirl@yahoo.com
Also, as April is best at, be proactive at stirring interest in Dr.s. some are too busy, yesbut there are others out there who have the drive to take something like. this on. Lets make a universal letter and mail it to every single dr we can find. Neuro research, neurologist, neuro opthalmologist. We. cant wait for them to come to us……Light a fire right April???
Anywho write anytime Chloe!
Candi
8 October 2011 @ 5:58 am
Thanks for your comments micheal and candi i just cant believe the dr’s in the world dont have a cure its so depressing to live life with vs ud think they wuld research to fix this problem for everyone. Keep me updated with ur progress i had a dr’s app on fri so hopefully ill get reffered to the neurology deptartment.
9 October 2011 @ 9:55 am
One more thing Chloe…there is a Dr. who has had experience and success in treating this…Dr. John F. Rothrock at University of Alabama in Birmingham…if you’ve done your research, you’ll see he’s also one of 6 people who have ever published on this, as it relates to migraine aura disorders. Unfortunately, he tried all the meds on me and none worked…but everyone is different, and it’s important to keep hope that one could work for you. He’s very compassionate and concerned doctor. Let me know if you would like more info.
9 October 2011 @ 5:31 pm
Hey Chloe……. firstly I would like you to know the good things of VS because everyone seems to write down the bad things. Vsers are extremely intelligent. I have learnt that from the amount of infomation that each VSer processes. VSers are very good looking people. ( check out everyones pic at Facebook – there is a group of us there with i think 138 members strong.Just type in Visual Snow). VSers are kind considerate and very helpful. I have learnt that when I too was like you, scared and depressed. Thanks to the support of each and every VSer I have accepted this as my life and have learnt to go on regardless. VSers are unique people. VSers are stronger. Without VS i would have never known these people and when i think about I would be missing out on alot. We all know what you are going through. Pls be strong and do no tdo anything stupid. If you are depressed and need someone call me : 0061469773775 – My name is April and I am on a cause to fight VS. Candi my girl your right i have to start my letters again. Yes im writing the universal letter. Light a fire ??? I m going to burn the world with my light!!!!!!!!!!
9 October 2011 @ 6:12 pm
April your positivity is refreshing!! You know, I was wondering just today what the demographics of VS folk are…and somehow, I have a feeling we all have a lot more in common than VS. Could you post the link to the facebook page? I tried typing in VS but a group did not come up. Thanks!
9 October 2011 @ 7:58 pm
Hi Taylor
I agree we have alot in common
Try this link its a closed group so we have to add u but then ur free to chat or add any ideas u want! Cant wait to see u there!http://www.facebook.com/#!/groups/229020277110681/?id=292207207458654¬if_t=group_activity
April
9 October 2011 @ 8:06 pm
Hey Group,
A couple of things that I have learned in the past few months about this whole thing. One, since it is a migraine disorder, your immune systems should be checked as a lot of migraines are caused by faulty immune systems. I had mine checked and it turns out that I have Hashimoto’s Disease. Second, your thyroid gland, adrenals glands, Pituitary gland, sexual glands, etc. should be checked to see if they are functioning properly. I also had mine checked and discovered that all of my hormones were low. Since I have been treating all of these, my VS has gotten better. So, just a thought.
10 October 2011 @ 12:37 am
April thank u so much!! Everyone here is so encouraging and thoughtfull, i really do appreciate everyones kind words. I just wish i was in america as it seems to have all the good neurologists. In the uk ive been trying to track down a neurologist that has dealt with this and so far no luck! Keep me updated with ur progress everyone and hopefully we will find a cure x
11 October 2011 @ 6:03 pm
QUALITY OF LIGHT: Does anyone else feel their VS is worse under flourescent light and better in clear, direct light?
I love it when the sun is “in my eyes” because my VS practically disappears––it’s overwhelmed by the real light.
I guess the direction I’m headed with this is how importance is the quality/quantity of light to the condition––and whether that might assist researchers.
11 October 2011 @ 6:05 pm
Anybody else think it should be renamed Visual Static? Doesn’t Visual Snow sound too fun and pretty?
11 October 2011 @ 6:21 pm
Hey Michael my vision is much better in light I hate the dark coz i feel blind and yes i think it should be renamed. Why dnt u join us on Facebook? I have posted the link on this site. Also I received a new letter from the researcher and he needs people to go and see him to actually start research on VS. If anyone can go to Wisconsin pls email me so i can give u the details. Pls let others know!
12 October 2011 @ 12:19 am
Hey April: I joined the FB group and would like to hear more about this Wisconsin researcher––can you forward his contact info, etc.?
Thanks. mfraser29@cox.net
12 October 2011 @ 6:43 am
Has anybody else had weird feelings in there arms and legs?
13 October 2011 @ 8:43 pm
Hi guys
Firstly Micheal have u received the infomation I have sent to you?
And Chole i also get that feeling in my legs and arms
Pls join us at Facebook there u will find many VSers that support each other. the link is on one of my posts. Ill see you there!
16 October 2011 @ 3:13 pm
hi guys,
hope everyone is ok …. ive got some interesting news that i thought i would share. when looking into our problems i came across a medication that has seem to dramaticall decrease all our syptoms. i was wondering if any of you have tried Flunarizine 5mg?? i have heard that it can be quite expensive though if you are not in the UK, but im not sure if this is true. Please let me know if you have tried this as i am deffiantly thinking of going to the doctors this week and trying it while im waiting to see the neurologist??? So far i have found 4 people that now find there symptoms dont even bother them anymore…. How exciting if this actually works. ..
Let Me Know
Thanks
Chloe 🙂
16 October 2011 @ 3:21 pm
Thanks, Chloe. Good info. I tried Verapamil (also a calcium channel blocker) 20 years ago—didn’t help me. But all sharing of information is valuable. Can I suggest you invite the 4 people you mention who benefited from Flunarizine to share their info on this site? The more direct the connections we all have, the better.
Thanks again. And pleae keep us posted if you decide to try the med.
michael
16 October 2011 @ 3:42 pm
Hi Chloe,
Its good to see you in good spirits. I actually know someone who had bad vs and took the flunazarine recently and said he is 80% better, so that is wonderful news. I myself have thought about taking it but i was on a better blocker, well 2 weeks after stopping one, when my symptoms started so have been hesitant at taking it even though it could he my best chance lol. The side effects can be bad including depression which ive had a history of years ago. But my friend who is taking it says hes had no side effects. So that is hopeful!!!
Please let us know your results!!!
Hugs and prayers,
Candi
16 October 2011 @ 4:24 pm
Hi Guys
Chloe i am very happy to see u using ur energy in something productive. It is much better then being depressed. Today my eyesight is worse i dnt know why but i m not stressing about it. Ok good news (Candi listern up girl!) i have been able to get into contact with Lucia M. Vaina M.D.Ph.D.Professor of Neurology, Neuroscience and Biomedical Engineering and she is actually doing research not on VS but something like it. She wants to do skype with me ( i dnt really know what that is 🙁 ) but ill do it she wants info on VSers. So i will be ready to chat with her as soon as I work out what Skype is…i will let u guys know whats happening!
16 October 2011 @ 7:21 pm
Good news April!!!! Hahah skype… Just type in skype on your search engine and download it and register. Give her your skype user name and she will request you. You have to have a video for it to do it that way.
Sorry your vision is worse today hopefully it settles back down.
Hugs!!!!
18 October 2011 @ 1:16 pm
hello people, i have just realised that i dont just have visual snow i thought it was just visual snow…… until i googled what somebod elses put “Blue field entropic phenomenon” …. does any body else have this and is this one also uncurable like vs??
Thanks girls and guys 🙂
Chloe
13 December 2011 @ 2:17 pm
Hi everyone, this is Leonardo from Italy. I would thank everyone who shares his/her experience here because it certainly it’s important to know not to be alone living wit this condition.
I’ve been living with visual snow and tinnitus since I was borne, now I’m 34, continuosly, 24/7.
All the doctors I’ve consulted so far are not aware people could have this simptoms continuously, mostly don’t admit they don’t know the cause and consecutively how to cure them. I would keep in contact with anyone is willing to share feelings and informations about visual snow hoping it will be useful to support each other (not complaining but supporting, helping). Thanks 🙂 leonardodiliso@gmail.com
23 December 2011 @ 9:25 pm
Hi everyone! I’m so glad I found this discussion. I am 27 and I have suffered from VS, PMA and lots of floaters for as long as I can remember. I saw a few opthamologist who couldn’t find anything wrong and finally saw a neuropthamologist last week. He ordered an MRI and I suppose he will progress from there. Besides the typical VS symptoms, does anyone suffer from dark floaters that are in the center of their vision and moves like almost in a tunneling motion? I only see those whole driving with the blue sky in the background. This is on top of the basic vs symptoms. I am not sure of its related and I notice it more when I’m tired. By the way, I have never done any hallucinagentic drugs. I live in Las Vegas and of anyone knows of a specialist that is familiar with this, please let me know.
22 September 2013 @ 12:03 am
Two years later than your post, I’m sorry, but just found this site. Anyway, I am going to guess that you are near-sighted and wear glasses or contacts, am I right? It is very common for near sighted people to ‘see’ more floaters. They don’t ‘have’ more floaters, they just notice them more easily. Once you reach about 42 yrs of age, the floaters will Increase and become even more annoying. In time, your brain will “edit” them out, so don’t worry.
Now, the Visual Snow: a dark room is not ‘black’, but instead, a hyper active array of moving pinpoint lights, all the time. I figure it’s neurons continuing to fire, in the absence of light. The Persistent migraine auras: (sparklies, flashers, purple spinners, etc), can be a major annoyance. I have had them since I was about 4 years old, my first memory of seeing the weird flashing structures. Sometimes, they go away, or, you simply ignore them.. But, when under stress, or right after a full-blown migraine with the “big zigzag aura”, you will notice once again, the persisting flashing light auras and sparklies. For me, these symptoms usually last a year or two, then go away for a few years, only to return years later, and repeat the process. It’s quite annoying. For this reason, I try to avoid loud sudden noises, bright lights, flashing emergency lights, etc. Because for me those are triggers. Also, certain strong smells tend to trigger the migraine auras again. I hate it. But, I have never taken any drugs for it. This condition runs in my family so I just cope with it.
Does all of this ‘really’ mean you are more at risk for a stroke? I don’t think so, because my great grandmother had migraines with aura, and persistent auras, but she never had a stroke and lived to 96. I think these auras are more like brain activity that, for some reason, we have become aware of visually. Also, I believe it is entirely neurological in nature and most likely nothing to worry about. Perhaps those who have had stroke, just so happened to also have migraines. I don’t really believe migraines weaken vessels. I challenge any doctor on this point, because it’s well known that vessels in the body regularly dilate and contract as part of their normal function, based on circulatory necessities. They are designed to do so.
20 March 2015 @ 6:12 pm
I’ve had this “Visual Snow” for about 4 months and have even contemplated suicide because its so annoying but now that i have seen there are others i think may be able to hold out. I’m 14 and live in Florida i also have a sinus infection so it may be just an inflamed optical nerve but my foster parents neglect me and wont take me to see a doctor
22 March 2015 @ 6:39 am
Elijah Watt, I’m in FL too, which part for you?
Suicide is not an option…. Your brain will slowly adjust after time.
There is a 2nd study starting up soon so hold tight, okay?
Candi
22 March 2015 @ 6:43 am
Elijah, I just read the last part of your message. That is not good about your foster parents. Can you contact a case worker and let them know about your complaints? Let me know… I’m sure there is something that can be done to get you checked out.
21 June 2017 @ 7:57 am
Hi Candi,
I am new to VS and as you can imagine, the feeling that my life is ruined and I will never be happy again as taken over to an overwhelming degree. My panic attack was so bad, I had to go to the ER. I just feel like my life is over. Just wondering if you’ve had any success in coping or treatment. Thank you.
9 May 2016 @ 7:58 pm
Hi folks. 44 y.o. male, with no previous migraines or eye problems. 5 days ago I began to see bright cyan/blue splotches in my right eye and felt a bit weird. I had weakness, tingling in hands but no headache. I thought I was having a stroke or something so got my wife to take me to the hospital. My BP went from my normal 125/82 to 158/108 at home and then 158/118 at hospital. I still don’t know if my BP was the start of the problem or a reaction as I may have been having a panic attack. Tingling through arms and chest, really cold hands and feet, blue fingernails…I thought I was going to die. After a few hours at ED and a check of my eye, I was sent home feeling much better. Unfortunately my eye didn’t improve. Still seeing bright blue/pink “static” in that eye and the constant feeling someone had just flashed me with a camera. I also had what looked like blood veins in my vision, blurry blind patches and things appeared darker through that eye. Anyway, saw an optometrist today and he found retinal bleeding as well as some in the macular as well. Guess I am off to see a specialist now but for anyone who has sudden onset of symptoms, I recommend seeing an eye doc as soon as you can.