Vertigo, Visual Disturbances and 'wobbly' feeling

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Sunbeam

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I am happy to see these posts and wanted to add my experience. I had about 10 auras per year w/o pain (scintillating scotomas) for 22 years. They last exactly 20 minutes. A neurologist and my primary care physician weren't concerned. I had mitral valve repair surgery (minimally invasive) in October 2018. After the surgery I had 28 up to 12/2018. Then I had 61 in 2019 and so far I've had 26 since the beginning of the year. Fluorescent lights, sunlight, electronic devices seem to be the triggers. I have journaled the foods I am eating, given up foods, vitamins, herbs and medication but no connection. My doctors don't seem concerned. I've seen a couple of neurologists, been told to drink more water, take magnesium, CoQ10 and B2. No results. Interesting to see all the posts online and yet my surgeon and cardiologist aren't familiar with this.
 

Protimenow

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I remember vividly when I had my first migraine. I was standing for hours at a time, taking tickets at a movie theater. I figured out a way that enabled me to stand for long periods by putting one knee behind the other - I didn't think about blocking blood flow. Maybe the issue was circulatory, maybe bright relections of the sun from the windows of passing cars were the trigger, but the aura, then the pain, began.

It happened a few other times when I was doorman at the theater - again, possibly from standing for so long -- and could have been related to my bileaflet valve, undetected blood pressure issues, circulatory issues (from restricting blood flow in one leg), but, in retrospect, I don't think it was neurological at all. Over the years, the painful migraines gave way to the auras that usually last about 30 minutes.

Sometimes a few bites of a chocolate bar can stop the auras dead in their tracks (but I haven't tried this), sometimes a caffeinated drink will stop them. I don't have either in my house anymore, so I just put up with these.

I'm not sure what triggers them, or what causes them -- althugh bright lights ARE definitely one cause. I try to close my eyes or move into a dark area until these things are done.

No - as far as the vision in an eye turning black for a few seconds - in my case, and the case of a friend who had the same symptom, we both discovered a sensitivity to Zyrtec. This sometimes was accompanied by numbness of the tongue and lips and fingers - scary, but they went away. When we stopped taking Zyrtec, these things went away.

This problem may be more pervasive than we think - if you are taking Zyrtec and having these symptoms, try dicontinuing it and see if the symtoms don't recur.

The ocular migraines may not be a big enough issue for doctors or drug companies to be concerned about. In my experience, doctors will listen, nod their heads, and give no answers. They may perscribe tests that don't show anything relevant.

I've seen ads for a recently released (and probably quite expensive) medication for migraine headaches. Although the auras are probably not enough (unless you're driving, and can't see enough around the auras to drive safely) and usually don't last very long, this medication may be overkill - but for some brave person, it may be worth a try (these are, after all, a symptom of migraine - or so they're called).
 

PAN

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Interestingly, In the years leading up my BAV diagnosis I would lose vision in my left eye, top section only. This happened quite regularly and usually in the morning so I put it down to hunger. Once I started taking aspirin and BP meds (Telmisartan) they vanished.
 

Zoltania

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Sunbeam, my experience has been almost exactly the same as yours. I started getting ocular migraines decades ago and had only one or two per year, each lasting twenty minutes. After my mitral valve repair surgery in 2015, the frequency increased to one or two per month. My cardiologist had never heard of this phenomenon.

I haven't found any triggers, and the ocular migraines don't bother me in any way (though they are a bit annoying if I'm trying to read or use the computer). I just look at the clock when one starts and reassure myself that it will be gone in twenty minutes.
 

Protimenow

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I can't believe that cardiologists haven't heard of these. I suspect that they're more common than many of us may think -- and they just dismiss complaints as if they were uttered by people who didn't know what they were saying.

For me, bright light seems to trigger these occasionally.
 

Paleowoman

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I can't believe that cardiologists haven't heard of these. I suspect that they're more common than many of us may think -- and they just dismiss complaints as if they were uttered by people who didn't know what they were saying.
I never had any of these migraine auras or visual disturbances until the day after AVR. The doctor on the cardiac ward said they “often” happen after heart surgery. I would guess he’s come across it a fair amount working on a cardiac surgical ward. Perhaps cardiologists don’t know of the connection because perhaps most people getting these visual disturbances following heart surgery might not make the connection so don't mention it to their cardiologist ? Plus most of us don't seem to get headaches with the visual disturbances so they’re not truly a bother to most of us. I just watch mine - had a zig-zagging aura yesterday afternoon !
 

pekster11

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i also get occasionally weird "grey outs" in my eye...nearly always the left one

i think i may start taking aspirin for this, as having read this thread, it seems to stop it for some ppl
 

Protimenow

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The optical thing - along with brief numbness in the fingers and, often, the side of the tongue was caused by Zyrtec. Once Is stopped taking Zyrtec, the disturbances stopped. I know of at least two others who have the same reaction.

If you're taking Zyrtec, maybe this is doing the same thing to you.
 

dutchboy

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I re-read all the post and wanted to add my two cents worth. Ocular migraines before and after surgery; pretty much what others have stated.

Visual disturbances, squiggly lines, going left to right, 10 per year, sometimes I feel a little out of sorts and are you ready for this?? 20 minutes long almost without exception. My cardiologist and optometrist are not concerned.
 
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I am happy to see these posts and wanted to add my experience. I had about 10 auras per year w/o pain (scintillating scotomas) for 22 years. They last exactly 20 minutes. A neurologist and my primary care physician weren't concerned. I had mitral valve repair surgery (minimally invasive) in October 2018. After the surgery I had 28 up to 12/2018. Then I had 61 in 2019 and so far I've had 26 since the beginning of the year. Fluorescent lights, sunlight, electronic devices seem to be the triggers. I have journaled the foods I am eating, given up foods, vitamins, herbs and medication but no connection. My doctors don't seem concerned. I've seen a couple of neurologists, been told to drink more water, take magnesium, CoQ10 and B2. No results. Interesting to see all the posts online and yet my surgeon and cardiologist aren't familiar with this.
My situation was a bit more extreme. I had auras followed by migraines for perhaps ten years prior to my first AVR--a couple per month. Immediately following the surgery I began to have them daily--and over the next year I probably had 5-6 per week. Sometimes I would experience the aura twice per day. So perhaps 250 episodes in that first year? Over subsequent years the frequency gradually declined to about 1-2 per week. I get them in clusters, so if I get one, I am almost certain to get another within a day or two. Now, 7 years post first surgery, and 4 yours post-second AVR (don't ask!), I get them regularly when I exercise hard (in the middle of a spin class, say); and perhaps once per week otherwise. (I expected the frequency to return to daily post-second surgery, but that didn't happen). Thankfully, my actual migraines are mild, and so I've just come to ignore them. But I do take butalbital with tylenol (a very old migraine drug) when they are more intense. My cardiologist speculates that the new valve increased blood pressure (as does exercise) and so triggered the daily migraines after the first surgery. He predicted that over time they would reduce in frequency as my body adapted to the change, and he turned out to be correct.
 

Protimenow

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I started having my auras 25 years before my AVR. I'm not sure if I had more auras immediately following surgery.

Sometimes my auras come in relative clusters - a few one day, maybe one or two the next day, and often many days between them. I've learned to kind of see around the areas with the aura. If I'm driving, so far, I haven't had to pull off the road until the auras are gone. Sometimes getting away from bright light helps. Once or twice, a bit of a chocolate bar turned these things off - sometimes it didn't work at all.

It would be good if these were somewhat predictable and if there was something, readily available (chocolate bar? Hot coffee?) that would reliably stop these immediately.
 

Elmo

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I had migraines for nearly 30 years before my AVR, After surgery I tended to get more with just the aura but after a few years the pattern was very much back to what it used to be although on the whole they are less severe. However, every so often I get one which affects me over a couple of days - something that didn't happen in the years before the surgery. I've never had a total loss of vision, which sounds very frightening, only the classic aura which for me is a pain but I get warning of it, so just live with it.
 

coffeelover

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Interesting discussion. Today I experienced a wierd visual disturbance. My depth of vision was off..stuff looked closer than it should be, and the ground looked a little curved. I felt word, kind of wobbly and light headed. Maybe it was the heat ..hot humid day but and I was weeding in the flower garden, maybe low BP, maybe Unisom.. I decided to quit weeding and headed indoors. Feeling alot better. But I was a concerned about visual symptoms.. With history of AVR and a Mechanical valve, I realize I need to pay attention to symptoms of anything wierd .Since symptoms passed I'm feeling fine
 

Protimenow

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This sounds like it was related to heat. You were wise to react to the symptoms and get out of the house to cool off. This may have been the early start of heat stroke, or, perhaps, if you were bending down, then standing up quickly, and doing this many times, changes in blood pressure (and the relative inability of your heart to pump blood to your brain when you stood up) might also have produced some symptoms.

You may have triggered a vasovagal reaction.(This can sometimes include unsteadiness/dizziness, nausea and, worst case, fainting)

Or maybe, cofeelover, you've had too damned much caffeine.

I'm glad that you're in the house and doing well.
 
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DachsieMom

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Yes, could be the bright sun or the crouching and standing up. When I weed, I have to stand up every few minutes. Something about the crouching too long must affect my blood pressure because otherwise I am dizzy when I rise. This never happened pre-surgery.
 

Protimenow

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As I understand it, you probably aren't describing the issue with auras, as much as you're describing an Orthostatic or Vaso-Vagal issue.

When you're crouching - or laying down - or sitting, then stand up quickly, there's a drop in your blood pressure. There's a drop in your blood flow. It takes a while for the blood to get to the brain. A brain that hasn't gotten enough oxygenated blood can make you dizzy, faint, and possibly cause you to faint. The cure for this is to stand up less quickly, and wait for your head to clear a bit. (I used to jump out of bed when the alarm went off, then rush out the door. I can't do that anymore).

Vaso-vagal occurs when the vagus nerve, which seems to run all through your body, gets activated. Quick rising, and other activities can cause this to happen. When it does, you often feel llike crap. Your heartrate can increase, you can get dizzy, nauseous, and possibly faint.

Neither of these are any fun. But neither of these are usually paired with the migraine aura.
 

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