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?
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Im thinking on going on a diet to see if that helps as well, only fruit and vegetables…..
Let me know how it goes. I bought a juicer but havent used it much.
Ttys
Candi
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
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.
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?
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.
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
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)
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.
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
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.
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.
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!!!!!!!!!!
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!
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
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.
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
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.
Anybody else think it should be renamed Visual Static? Doesn’t Visual Snow sound too fun and pretty?
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!
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
Has anybody else had weird feelings in there arms and legs?
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!
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
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
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
Hi Guys
) 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!
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
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!!!!
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
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.
leonardodiliso@gmail.com
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
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.
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