I have a quick question for those of you who have visual problems with MAV. I’ve seen some people complain of “visual snow” and was wondering what was meant by that. The problems I have with MAV and vision are: lights, even looking at dim lights for just a second or two and then looking away, I still see the lights. It takes more than a few seconds to clear up. Also, having trouble focusing. When reading something I focus but then quickly things seem to get a bit blurry. In general it just doesn’t feel like my vision is up to par. Not enough to affect my driving but just not quite right.
Again though, just wondering what visual snow meant to people. I have no way to describe it but I have a feeling I am having a bit of it. Thanks for reading, hope you are all doing well!
Hi there, I complain about my vision all the time. I cant describe it either, but this is how I try:
I can read, and see the words, they are not moving or real blurry, just hard to focus, and keep my place. Reading makes me more dizzy.
Not sure if that is relates to you or not. I can watch TV pretty good, a few dizzy times when alot of twirling or fast movement, but usually okay, and driving
is fine to.
To me it has been hard to describe as well, but something like wearing swim goggles all the time, and that processing all the visual stimuli is an effort as opposed to natural. When my csf leaks have been sealed, that is the first most amazing relief that I notice, is that my vision is cleared up, and I can’t explain it, but it is also a relief to my brain, which has had to work so hard to process what I see. Also bright lights and busy environments are a huge chore.
Hi. I have visual snow and the best way for me to describe it is to compare it to what a static screen on TV would look like - when you’re changing channels and get to one that doesn’t have anything but isn’t black - it’s almost like a snowstorm on the screen…That said, my visual snow isn’t that bad - it’s all over in my visual fields but I don’t really notice it unless I look at a while computer screen or a bright blue sky. Then I can see all the “snow”. I also have a more pronounced palinopsia (I think that’s the right word) - where the after image of something is imprinted on my retina longer than it used to be. This effect is very bad with bright lights - store lights, sunlight hitting cars, things like that.
I also have trouble with focusing due to the slight constant shimmer of oscillopsia - it just shimmers enough to take the sharp edges off things. I can squint and bring the sharp edges into focus but that takes a lot of effort to sustain and will, in time, make my eyes hurt and give me a headache. I also get pulsatile oscillopsia from time to time.
Because of all of these things, reading can be quite tiring and difficult. I’ve learned to look for larger print in books & magazines. The letters seem to shimmer so more effort is required to read - it’s easier, although not easy, if the font is larger.
Using a computer, tablet or smartphone can be a problem as well. With those you have the flickering effect, even if it can’t be seen. If I scroll too fast I’ll make myself nauseous.
My eyes are totally different as well which only adds to the mess of trying to see straight. I have one far-sighted eye and one near. When I was younger it wasn’t that big of a deal but as I get older I can feel my eyes adjusting from looking at the distance and switching to up close. I now have to rest my eyes a few minutes to make the switch. I can’t wear bifocals - I have a pair of distance glasses and a pair of reading.
I don’t want to give up reading so I try to do it in big chunks of time (1-3 hours) knowing that I’ll need to give my eyes 10-20 minutes to adapt when finished.
I think the visual issues of MAV & SCD are what bother me the most out of all the symptoms. It’s quite frustrating at times and when my anxiety level is up, it can cause pretty strong fear until I talk myself out of it. (Visual issues make me think of strokes & aneurysms - I had a brain aneurysm which was clipped before it ruptured, thank goodness but it was a visual issue that prompted me to start seeing doctors. So, the emotional connection is there. I’m trying to retrain my brain to not automatically go there! Time will tell…
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:
- Suffer from 24/7 visual snow
- live in the U.S.
- Be willing to travel to San Francisco for testing
- complete a short, very simple phone interview to determine if you are eligible
Contact details for the study can be found on VS-Research@Neurology.ucsf.edu
These doctors 100% believe in this condition, and that is a great comfort to many patients.
Thanks for posting but please do not carpet bomb the forum with this message. One post is sufficient. Good luck in your recruiting.
I actually participated in the study Just wanted to share that.
Now to answer the question, my visual snow is like tv static. I also have the afterimages as well.
I realise this is an old post but thought I’d share my experience with visual symptoms.
Lately - well for the last 12 days I have had very Dry eyes and I feel like I can feel my eyeballs inside my eye sockets which is quite a peculiar symptom, along with my vision being very distorted in that I cannot focus properly, writing this now is very strange. Everything is a little blurry. It looks asif some pieces of the letters are slightly missing and I cannot seem to focus on it. Same this morning trying to put some makeup on I couldn’t focus enough to do that. This symptom has waxed and waned over a good 12days now (checks the diary) it still very much here and it can be unnerving for sure. I try and keep calm and that does help
I’ve seen a lot of MAV symptoms since my relapse in March and it seems I’m having trouble getting on top of them. We all know there is no quick fix to chronic MAV eh?! 😮💨
Gosh, and I thought I must by now have read something about every symptom there is but apparently not. Never heard of pieces missing from words til today but it seems pretty commonplace if the content of the internet is anything to go by. Hope it soon resolved for you.
We are always learning eh? Thank you Helen. I’ll have a read of that when I am more visually capable. I’ve had the eyes aren’t working in tandem with migraine when I had my flare up in March. If I recall correctly I might have had this in the last also… very unnerving, I’m just very symptomatic at the moment even though I’m still able to do a lot more I haven’t drove for the last few days as my eyes are just not playing the game.
I battle the very dry eyes too. Especially when I wake in the morning… I use eye drops and sometimes they help immediately, sometimes my eyes just don’t respond. That’s when I know it’s likely not going to be a good day. Strange, but what isn’t with this condition?
Awful Renèe, I just want to be able to see properly again! God knows how long it’s going to last…
Dry eyes so often a side effect of the medication. Common with both Tricyclics and beta blockers.
Disadvantage of eye drops is they just top up the fluid levels briefly. A warm, damp compress used regularly can actually unplug a blocked tear duct and/or encourage it to flow more freely. I used a home-made (flannel and boiled water still warm) three/four times daily for several years but my eyes have rarely needed it for years now, despite the increase in drugs dose. Pharmacies here do sell warm compresses that are heated by a microwave and can be reused for a full year for anybody who doesn’t want the home-made sort.