#517 KarmaSays

"1. Name or screen name (optional): KarmaSays

2. Email (optional):

3. Location (optional): Ohio

4. Age: 31

5. Sex: F

6. Nationality and Race (optional): USA, white

7. Do you have classic migraine (migraine with aura) or common migraine (migraine without aura)? When did it begin?

I had migraines without aura six years ago due to a bad reaction to birth control pills, but the migraines stopped when I switched to a different pill. I never had another migraine until after getting Guillain-Barré syndrome, which is when the visual snow started. Now I have migraines with aura.

8. What do you take for your classic or common migraine and does it help?

I take Axert. Sometimes it helps if I take it immediately when I start seeing the aura, and before the headache really gets going.

9. Have you been diagnosed with persistent aura (prolonged migraine aura status)?

No.

10. What is your visual problem and how long does it last?

I see shimmery static through my entire field of vision, with occasional scrolling black blobs if I close one eye (I never see the blobs if I have both eyes open for some reason). This is always present, never goes away.

11. Any other problems that you think might be related?

When I got Guillain-Barré syndrome, it really messed up my whole body, and since this is when my visual snow began, I wonder if it isn't related to demyelination in some way. Also, I have POTS (postural orthostatic tachycardia syndrome), which increased dramatically with Guillain-Barré syndrome. Because POTS compromises blood flow to limbs and organs and screws up your blood pressure, I also wonder if it doesn't have to do with compromised blood flow to my eyes. But these are just guesses. My doctors have said my eyes look normal and can give no reason why my vision is abnormal.

12. What do you take or do for your vision problem and does it help?

Nothing.

13. Have you found a trigger for your vision problem?

No, nothing seems to make it better or worse.

14. What tests have you had and the results?

MRI showed a few spots in my brain, but they are non-enhancing and my neuro believes they are old, probably from a past virus. Tests with normal results: spinal tap, CAT scans, eye dilation and exam by neuro-ophth, EEG, EKG, echocardiogram, thyroid panel.

15. Drug history (pre VS):

Was taking nothing when GBS/visual snow started.

16. Drug history (post VS - effect on VS - negative, positive, not at all) - no effect:

Yasmin, baclofen, axert, lyrica, phenergen, prednisone, IVIG; mild effect: toprol gives me temporary slight increase in visual snow when going from seated to standing position--but because of my POTS, my blood pressure is a bit off when changing positions, so this is probably related. But before the toprol (which is a beta-blocker to treat POTS), this visual issue did not happen.

17. Do you have a positive family history for migraine? If yes, who is affected?

No one else in my family.

18. Other information you want to provide?"

(KarmaSays [subject #516], Yuku forum Visual snow or static - General discussion - Sticky - Sofia Greene's survey about persistent visual disturbances, February 6, 2008)

"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 (2007), 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 2007, 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-Barré 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-Barré syndrome 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 orthostatic 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-Barré symptoms were increasing. Talk about a diagnostic medical nightmare!

My visual snow started about a week into Guillain-Barré 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-ophthalmologist 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!"

(KarmaSays [subject #516], Yuku forum Visual snow or static - General discussion - Sticky - Sofia Greene's survey about persistent visual disturbances, February 6, 2008)

"Well, one additional comment I will make about GBS and visual snow is that while I was in the thick of my symptoms, my entire body felt like it was full of static. My mouth felt like I had metal shooting through it and I couldn't taste anything. My sense of touch was dulled or gone everywhere, and it felt like staticky pins and needles on every inch of my body. There was ringing in my ears. And finally, my vision was full of static as well (as you know). The difference is that after the second infusion of IVIG (human immunglobulin, the treatment for Guillain-Barré syndrome as well as a huge number of other autoimmune diseases), the static everywhere else in my body went away. The static in my vision stayed. So even though it seems like the VS was caused by the same thing that caused all the rest of the static, the treatment that worked on everything else was ineffective. The question is why? That's what I've been trying to figure out for almost a year now. I kept grilling the doctors about it in the hospital during my recovery, but they were more concerned with getting me to walk again and didn't seem to care much about the VS. And no one has been able to give me any answers at all ever since.

But I do find it interesting that there are others with GBS who have had VS problems. I know it's not common, though, as most people with Guillain-Barre do not experience visual issues unless they have the Miller-Fisher variant, which in that case results in total blindness rather than VS. This is why I thought that most likely, the VS was the result of the GBS activating a pre-existing condition (in my case a predisposition to migraines, or possibly circulation issues due to POTS) rather than causing the VS directly. But you never know!

Thank you for all your comments. I appreciate them immensely!

Oh, and also, I am posting a question about visual snow in my GBS forum to see if anyone else has it, or if it's just me. Totally unscientific research! Ha ha!"

(KarmaSays [subject #516], Yuku forum Visual snow or static - General discussion - Sticky - Sofia Greene's survey about persistent visual disturbances, February 6, 2008)

Describing the onset of her persistent snow, KarmaSays recalled: "Well, I had been playing in the floor with my kids, and I started just not feeling right. My heart started beating faster, and my vision started to feel kind of 'tunneled,' and this is when it first started getting staticky. I knew something was wrong. I stood up and walked into the kitchen to tell my husband, but then as I stood in front of him, my heart suddenly started racing super-fast, as in an overwhelming adrenaline rush. (This was the first of many such episodes over the past year before I went on the beta-blocker meds; it has happened while I was hooked up to a heart monitor in the ER and my heart rate went from 70 to 210 in a matter of seconds.) The heart rate peaked rather quickly and then started to slowly lower on its own. As it lowered, though, my speech was slow coming out. My brain was thinking totally clearly, but when I tried to form words, they came out like I was in slow motion. The words weren't distorted or anything just... slow. Like the words were moving through molasses making it from my brain to my mouth. It only lasted maybe two or three minutes, because my the time the paramedics got there, I was speaking more or less normally again. But by that time, the visual snow was fairly intense. And it's been here ever since.

Interestingly, in subsequent episodes of sudden tachycardia similar to this one, I have NOT had the speech problems that I had that first time, and my visual issues have never gotten worse. It was only during that initial attack. It's like something about that first episode shocked my system so badly that it affected my speech and vision as well as my heart, whereas later episodes seemed to ONLY affect my heart. Weird, eh?

Oh, and I can't recall getting a headache immediately afterwards. I'm pretty sure I didn't."

(KarmaSays [subject #516], Yuku forum Visual snow or static - General discussion - New here! Visual snow after Guillain-Barre, February 7, 2008)

"Since the GBS struck, I have also started getting migraines with aura... When I get migraines with aura, I often don't realize that the aura is starting until I'm a few minutes into it. For example, I may be watching TV and start to think, 'What is wrong with her face?' and then a minute later, someone else's face will look distorted, too. Then I'll realize that everyone's faces are distorted (like they're collapsing in on themselves or are really uneven or asymmetrical)... and that's when it will click that I'm about to get the headache. Just subtle distortion of whatever I'm looking at. At other times, the aura appears as a zig-zaggy, sparkly, breathing line that moves slowly across my field of vision, distorting whatever it passes. It usually starts at the very edge of my vision and then moves toward the center very slowly. But it always moves. It never, ever stays still. This type of aura is easier to recognize, and as soon as I notice it, I take my Axert, and about half the time this will prevent the headache (when it comes) from escalating to the point where I can no longer function. It's just more of a nuisance than anything. So I'm actually grateful that I get the auras now because their appearance gives me a shot at medicating myself in advance of the headache. Back when I'd get migraines without aura, they would just hit me out of nowhere and I'd be out of commission for hours at a time. I was never able to take my Imitrex soon enough. So I much prefer it this way!"

(KarmaSays [subject #516], Yuku forum Visual snow or static - General discussion - New here! Visual snow after Guillain-Barre, February 7, 2008)

"I had migraines without aura during ages 23-24, at which time I switched oral contraceptives and they stopped. I never got another one until after the GBS/VS.

Do you recall the date when you got the persistent vs? Actually, yes! It began on April 1, 2007.

Did you have symptoms of POTS before the onset of Guillain-Barré syndrome? There are several low-level symptoms that I believe indicated POTS before GBS, starting in 1997 (when I was 21). For example, I would often get dizzy upon rising from a lying down position. I can also think of several times when I got woozy and my vision got all fuzzy and I fainted or almost fainted at really odd times. I also could not kneel down and stay on my knees longer than a minute or two before feeling light-headed and thinking I might faint. And I had trouble keeping my arms raised for longer than about thirty seconds before they started hurting badly and I had to put them back down (this is a common POTS symptom, apparently). I was also especially prone to dehydration, which makes sense if I had low blood volume. Additionally, I was very heat-intolerant and would feel faint and get fuzzy vision, racing heart, light-headedness, etc. if I were to get too hot. All of these symptoms escalated tremendously after the GBS. They are also on the POTS symptom list, and many of these things have been helped (they're not gone, but also not as extreme) by the beta-blocker I am taking.

The VS I got after GBS was more like the type of static you see on a TV screen, fairly light but all over my visual field. I also get after-images for a while when I look away from things that are bright or well-defined. The static that I saw in January 2007 was much more intense, very white and shimmery, and only on the left half of my vision. Interestingly, the static that I saw in January was almost identical to the static that I am seeing occasionally on the Toprol (usually only with a rapid shift in positions, and only for a couple of seconds, and more like a 'tunnel' on either side of my visual field but not in the middle). Since I'm already used to living with the VS, the Toprol static doesn't really bother me. Since this med helps me so much with my POTS symptoms, I'm willing to put up with the occasional visual side effects, especially since it also minimizes my migraine headaches as well."

(KarmaSays [subject #516], Yuku forum Visual snow or static - General discussion - New here! Visual snow after Guillain-Barre, February 7, 2008)

top