Hi, everyone! I am so happy to find this community since my visual snow problems have gotten zero attention from my doctors, so reading post after post in this
forum has been amazing to me. I have learned so much! And for the first time I feel like I'm not crazy and am definitely not alone in this experience...
and I feel a great sense of relief in knowing that most likely this is a problem that will not progress any further. I appreciate this forum more than I can
say.
Here is my story...
My vision had always been normal for my whole life, and I'd never been prone to migraines or anything, with only one exception. In January of last year, for about ten minutes I had this staticky, bright, shimmery thing across the left half of my vision all of a sudden. Then after a short while, it went away. In hindsight, all I can figure is that it must have had an ocular migraine with no headache. It was the weirdest thing! But anyway, this was the only strangeness I'd ever experienced in my eyes.
Then in April, just a few months after that, I got a horrible virus that knocked me out for a day... It didn't last long, but I was reeeeeally sick for that one day! Then after I was over it, it was clear that something else was horribly wrong. I'll spare all the painful details of the crappy time I had getting a proper diagnosis, but the bottom line is that the virus I got prompted my immune system to go haywire, and I ended up with Guillain-Barre Syndrome. Basically my immune system wouldn't stop attacking things once it knocked out the virus, so it decided to attack my nerves instead. I was paralyzed from the waist down and severely weakened in my face and upper body. My breathing muscles were also severely weakened, but thankfully were not paralyzed, so I didn't have to be intubated like some GBS patients do. But it was still a neurological nightmare, and I haven't been quite right ever since.
Guillain-Barre places such a heavy strain on your body that oftentimes, other things that you might have had a minor case of are able to get a stronger foot-hold in your body while you are in a weakened state. In my case, it turned out that for many years I have had a minor case of POTS (Postural Orthostatis Tachycardia Syndrome), which is a rare autonomic nervous system disorder that affects your heart rate and blood pressure, and that compromises blood flow to your limbs and organs. I didn't know about the POTS, though, and only recognize that I've had it for a while now in hindsight. But I started having serious POTS symptoms at the same time as my Guillain-Barre symptoms were increasing. Talk about a diagnostic medical nightmare!
My visual snow started about a week into Guillain-Barre symptoms; because of the POTS, my heart rate suddenly shot up from a normal rate to over 200 beats per minute, then slowly went back down. I was standing in my kitchen when it happened, and after the jump in heart rate, I remember standing there feeling unable to speak, and seeing all of this mad static shooting all over the place in my vision. When I finally could put words together, they were very slow coming out, even though I was thinking clearly. My husband thought I'd had a stroke! But there was no stroke. However, because of the verbal difficulty, I do think that my oxygen level was temporarily compromised for some period of time when this happened, and I've had the visual snow ever since.
There's a lot more I could write about all of this, obviously, but the bottom line is that the visual snow never got any better even after I began to recover from the GBS. It was very discouraging to be getting better in every other way, but to see no improvement in my vision. Then when I was additionally diagnosed with POTS, I was hopeful that treating the POTS would also improve the visual snow, but unfortunately, it hasn't. I'm on Toprol to control my heart rate and blood pressure, and it does a stellar job in treating my heart, but it doesn't do squat for my vision.
I finally went to see a neuro-ophthalmalogist to see if he could help me with my eyes, but he was unable to tell me anything. He gave me a thorough exam and informed me that everything looked normal. Easy for him to say!
The only abnormality that we've come across is that I do have several spots in my brain that show up on my MRI, but all the spots are non-enhancing and my spinal fluid is normal, so my neurologist is confident that they don't indicate MS. He says that the spots in my brain are probably old, possibly the result of an encephalitic virus that I had earlier in life, and have no relation to what is going on now. But I do wonder if there could be some correlation between these "old spots" and my visual snow. I don't know.
Since the GBS struck, I have also started getting migraines with aura, which I've never gotten in my entire life until now. So I suppose it's possible that the visual snow and these new migraines are related. I never thought to connect them before, but it does seem like a lot of people on this board have found a connection between migraines and visual snow, so this is something that might make sense. Perhaps I've always had sort of a minor tendency toward migraines that never came out until Guillain-Barre unleashed it (just like the POTS), and that short staticky thing I experienced last January was sort of a preview as such.
Another theory of mine, though, is that the POTS condition has compromised the blood flow to my eyes in some measure, and this has caused the visual snow. It is well-known that POTS causes either too much or too little blood flow to various systems (different people have different systems affected more strongly than others), and for me, it could be my eyes. I don't know. It's all very confusing.
My neurologist has seemed unconcerned about the visual snow, but to me, having to see static and floaters all day long, every day, with no relief is something that heavily affects my quality of life. This is not my only residual symptom of all that I've been through, of course, but it's one of the most vexing because there seem to be no answers and nowhere really to go for answers either. I hope to learn more about this condition and grow more confident as to what it all means the longer I remain within this forum.
I hope this introduction hasn't been too long or boring to read... but trust me, I cut out A LOT of stuff!!! Ha ha!
So... hi!
Here is my story...
My vision had always been normal for my whole life, and I'd never been prone to migraines or anything, with only one exception. In January of last year, for about ten minutes I had this staticky, bright, shimmery thing across the left half of my vision all of a sudden. Then after a short while, it went away. In hindsight, all I can figure is that it must have had an ocular migraine with no headache. It was the weirdest thing! But anyway, this was the only strangeness I'd ever experienced in my eyes.
Then in April, just a few months after that, I got a horrible virus that knocked me out for a day... It didn't last long, but I was reeeeeally sick for that one day! Then after I was over it, it was clear that something else was horribly wrong. I'll spare all the painful details of the crappy time I had getting a proper diagnosis, but the bottom line is that the virus I got prompted my immune system to go haywire, and I ended up with Guillain-Barre Syndrome. Basically my immune system wouldn't stop attacking things once it knocked out the virus, so it decided to attack my nerves instead. I was paralyzed from the waist down and severely weakened in my face and upper body. My breathing muscles were also severely weakened, but thankfully were not paralyzed, so I didn't have to be intubated like some GBS patients do. But it was still a neurological nightmare, and I haven't been quite right ever since.
Guillain-Barre places such a heavy strain on your body that oftentimes, other things that you might have had a minor case of are able to get a stronger foot-hold in your body while you are in a weakened state. In my case, it turned out that for many years I have had a minor case of POTS (Postural Orthostatis Tachycardia Syndrome), which is a rare autonomic nervous system disorder that affects your heart rate and blood pressure, and that compromises blood flow to your limbs and organs. I didn't know about the POTS, though, and only recognize that I've had it for a while now in hindsight. But I started having serious POTS symptoms at the same time as my Guillain-Barre symptoms were increasing. Talk about a diagnostic medical nightmare!
My visual snow started about a week into Guillain-Barre symptoms; because of the POTS, my heart rate suddenly shot up from a normal rate to over 200 beats per minute, then slowly went back down. I was standing in my kitchen when it happened, and after the jump in heart rate, I remember standing there feeling unable to speak, and seeing all of this mad static shooting all over the place in my vision. When I finally could put words together, they were very slow coming out, even though I was thinking clearly. My husband thought I'd had a stroke! But there was no stroke. However, because of the verbal difficulty, I do think that my oxygen level was temporarily compromised for some period of time when this happened, and I've had the visual snow ever since.
There's a lot more I could write about all of this, obviously, but the bottom line is that the visual snow never got any better even after I began to recover from the GBS. It was very discouraging to be getting better in every other way, but to see no improvement in my vision. Then when I was additionally diagnosed with POTS, I was hopeful that treating the POTS would also improve the visual snow, but unfortunately, it hasn't. I'm on Toprol to control my heart rate and blood pressure, and it does a stellar job in treating my heart, but it doesn't do squat for my vision.
I finally went to see a neuro-ophthalmalogist to see if he could help me with my eyes, but he was unable to tell me anything. He gave me a thorough exam and informed me that everything looked normal. Easy for him to say!
The only abnormality that we've come across is that I do have several spots in my brain that show up on my MRI, but all the spots are non-enhancing and my spinal fluid is normal, so my neurologist is confident that they don't indicate MS. He says that the spots in my brain are probably old, possibly the result of an encephalitic virus that I had earlier in life, and have no relation to what is going on now. But I do wonder if there could be some correlation between these "old spots" and my visual snow. I don't know.
Since the GBS struck, I have also started getting migraines with aura, which I've never gotten in my entire life until now. So I suppose it's possible that the visual snow and these new migraines are related. I never thought to connect them before, but it does seem like a lot of people on this board have found a connection between migraines and visual snow, so this is something that might make sense. Perhaps I've always had sort of a minor tendency toward migraines that never came out until Guillain-Barre unleashed it (just like the POTS), and that short staticky thing I experienced last January was sort of a preview as such.
Another theory of mine, though, is that the POTS condition has compromised the blood flow to my eyes in some measure, and this has caused the visual snow. It is well-known that POTS causes either too much or too little blood flow to various systems (different people have different systems affected more strongly than others), and for me, it could be my eyes. I don't know. It's all very confusing.
My neurologist has seemed unconcerned about the visual snow, but to me, having to see static and floaters all day long, every day, with no relief is something that heavily affects my quality of life. This is not my only residual symptom of all that I've been through, of course, but it's one of the most vexing because there seem to be no answers and nowhere really to go for answers either. I hope to learn more about this condition and grow more confident as to what it all means the longer I remain within this forum.
I hope this introduction hasn't been too long or boring to read... but trust me, I cut out A LOT of stuff!!! Ha ha!
So... hi!
