Share this:

agraffia
@agraffia

Posts: 7
Joined: Jul 17, 2012

Visual Snow: Anyone experience this?

Posted by @agraffia, Jul 17, 2012

Has anyone ever experienced “visual snow”? My daughter suffers from this and sees it 24/7. No doctors seem to be able to help her. We’ve been everywhere in Chicago, and nobody can help her so they left it with “sorry, she’ll have to learn to live with it”. She’s only 12 years old! So I’m trying Mayo now. Just wondering if anyone out there has ever experienced this; apparently it’s rather rare.

Reply


EyeOnVision
@eyeonvision

Posts: 4
Joined: Jul 31, 2012
Posted by @eyeonvision, Jul 31, 2012

Dr. Goadsby and Dr. Schankin from UCSF are 100% committed to this research, and are very motivated to help find the cause and hopefully a treatment plan.

To participate in this Visual Snow study you must:

1) Suffer from 24/7 visual snow
2) live in the U.S.
3) Be willing to travel to San Francisco for testing
4) complete a short, very simple phone interview to determine if you are eligible
5) Must be between the ages of 18 – 55

Contact details for the study can be found on http://www.eyeonvision.org or contact the doctors directly at VS-Research@Neurology.ucsf.edu

These doctors 100% believe in this condition, and that is a great comfort to many patients.


agraffia
@agraffia

Posts: 7
Joined: Jul 17, 2012
Posted by @agraffia, Jul 31, 2012

My daughter is only 12 years old. Is there any help for her??

Liked by Grace


EyeOnVision
@eyeonvision

Posts: 4
Joined: Jul 31, 2012
Posted by @eyeonvision, Jul 31, 2012

While she is not old enough for the study, I wanted to let you know that there is one going on. When I was diagnosed, 7 years ago, there wasn’t even hope for research, but now there is. Updates are few and far between, but whenever I have one I’ll post it on eyeonvision.org. Unfortunately there is currently no known cause or treatment for the condition.


agraffia
@agraffia

Posts: 7
Joined: Jul 17, 2012
Posted by @agraffia, Jul 31, 2012

Thanks for responding. So is it actually a migraine type disorder? I’ve been told this is definitely a problem in her brain and not her eyes.


EyeOnVision
@eyeonvision

Posts: 4
Joined: Jul 31, 2012
Posted by @eyeonvision, Jul 31, 2012

Yes, that is the general consensus. However, because research is just beginning it is so hard to tell 100%. Most everyone with the condition have vision exams that check out fine. Brain scans are normally within normal range, but so little is still known about the brain and about the chemistry of the brain it is assumed that the secret to visual snow is hidden there.


Brownde
@brownde

Posts: 11
Joined: Aug 24, 2012
Posted by @brownde, Aug 24, 2012

There is a condition called asteroid hyalosis which causes opaque floating particles in the vitreous, or “jelly” of the eye. These can cause some problems with vision if they are dense enough. I don’t think anyone would do surgery for this in a 12 year old. It’s basically like snow floating through the fluid. No other problems with it. I also am not familiar with the doctor’s from UCSF and recently worked in ophthalmology there. They may just be researchers


Brownde
@brownde

Posts: 11
Joined: Aug 24, 2012
Posted by @brownde, Aug 24, 2012

Perhaps you are describing what is called an ocular migraine?


agraffia
@agraffia

Posts: 7
Joined: Jul 17, 2012
Posted by @agraffia, Aug 24, 2012

Hi, thanks for replying. She’s been tested for any kind of issue with her eye by (from what I understand) the best neuro-opthalmologist in Chicago, among other eye doctors. Apparently it’s been determined that what she has is migraine related, but they’re telling me it’s not an occular migraine because she never has any pain. She only sees visual snow, never resulting in a headache. They call it migraine aura without infarction. We did try a migraine medication and it didn’t seem to work. I just wish someone could help her! Thanks so much for your comment.


mommaj
@mommaj

Posts: 2
Joined: Feb 26, 2013
Posted by @mommaj, Feb 26, 2013

I’ve had ocular migraines – this is completely, totally different. For one thing, it covers the entire field of vision, for another, it’s 24 hours a day, nonstop.

Migraine medication has been used on some patients with little to no success. You can see what visual snow looks like at the eyeonvision site – just do a search to find it. The images they provide are very, very much what I see.


hamilton456
@hamilton456

Posts: 2
Joined: Aug 27, 2012
Posted by @hamilton456, Aug 27, 2012

Since it appears there is little to no research taking place on visual snow and since doctors are inclined to feel it is is a migraine without infarction, perhaps treating it as a migraine is the way to go. Try and determine what her “triggers” are for the migraine. I realize that she is apparently suffering from this continually and thus a trigger seems unlikely, but you may have to become your own research specialist on this in order to help her. When the snow started had she recently changed dietary habits? I suffer from severe migraines and I have a host of triggers. Try cutting all of the following out of her environment and/or diet: perfume, aged cheese, nuts, soy products, chocolate, diet beverages, msg, caffeine, etc. If she has even one day or several hours without the snow, note what she ate that day. Unfortunately there can also be environmental triggers such as mold, etc. A better way to approach it might be to limit her to fresh fruits and vegetables and home-prepared meets for a while or and limit her to just water as a beverage. See if she shows any improvement when her diet is limited to healthy meals you have prepared. Oh, and get her sunglasses…as dark as you can get them and make sure she wears them whenever she is out in the sunlight (sunlight and/or strong light reflecting off of surfaces can also be a trigger). Hormonally, her “snow” could also get worse during her cycle (if she has started that).

Anyhow, become your own scientist and keep a log (have her keep one too, but your age will make your log more reliable…)


LASchroeder
@laschroeder

Posts: 2
Joined: Nov 20, 2012
Posted by @laschroeder, Nov 20, 2012

I don’t know whether this is in the same category, but my granddaughter, age 13, has had problems with “flashing” eyesight. She recently saw a strobe light and said that’s how she sees. She has blackness rather than snow. She has also described an experience where her field of vision is covered with overlapping black circles (light spaces in-between), and a “sparkling” effect in the black areas. This happens only once every several months. Her flashing started about 2 years ago and was intermittent. She went through this last summer without the flashing, but it started up about three weeks ago and is now 24/7. She’s been to a number of doctors, even a neurologist at MD Andersen, but no diagnosis. Migraine headaches was suggested and she was put on medication, which caused severe forgetfulness, so she came off of that. I will check out the UCSF research, but can empathize with your frustration in getting help for your daughter. My granddaughter’s school won’t provide any help for her until she is classified IEP, which requires a diagnosis. Her parents are working on getting her help under a 504 classification. Like you, I would appreciate hearing from anyone who may have any experience with this.


agraffia
@agraffia

Posts: 7
Joined: Jul 17, 2012
Posted by @agraffia, Nov 27, 2014

Hi. Have you gotten an IEP established for your granddaughter? We have an extensive 504 plan for my daughter due to visual snow. Her plan includes rest time while taking tests, all print outs on colored paper, and extra time. We were also having trouble getting the right diagnosis but we went to her regular pediatrician who gave the right letter because she said while we try to figure out the diagnosis, there is no dispute she can’t see. So she wrote us a letter listing temporary blindness. The schools could not argue against that diagnosis. Hope this helps.


LASchroeder
@laschroeder

Posts: 2
Joined: Nov 20, 2012
Posted by @laschroeder, Nov 28, 2014

Yes, she has had an IEP for a while now, and it is helping. Thanks for
sharing your suggestions! Still no answers, as I know from reading other
posts.


mommaj
@mommaj

Posts: 2
Joined: Feb 26, 2013
Posted by @mommaj, Feb 26, 2013

I’ve had this since early childhood – as long as I can remember. It’s getting worse with age. (I’m 46.)

It wasn’t until my 20s when I realized it wasn’t normal. Then the eye doctors I asked had no clue what I was talking about. Only yesterday did I find a name for it. Here I had begun to believe I was the ONLY one — so glad there are others!

There doesn’t seem to be a cure at this time, or even much in the way of research. I have read there seems to be a connection with auto-immune disorders, particularly Lupus. I have several symptoms of Lupus including butterfly rash and positive ANA, but it doesn’t seem doctors want to diagnose it without kidney damage. (Which makes no sense to me.)

Have you had much bloodwork done on your daughter?


agraffia
@agraffia

Posts: 7
Joined: Jul 17, 2012
Posted by @agraffia, Nov 27, 2014

Hi. My daughter is now 15 and we know she does have Hashimotos Disease which is an auto immune disorder. Apparently it’s now known that a side by product of hashimotos is the visual snow. She has received some relief from taking topomax. This was prescribed by her neurologist. Hope this helps.

Please login or register to post a reply.