Vertigo, Visual Disturbances and 'wobbly' feeling

[Heart_Fit]

Hi! This might be a long shot but hoping maybe someone else has had experience with whatever is going on with me lately.

I had my Mechanical Valve Replacement in Nov 2019. In Feb 2020, while I was sick with the flu, i started getting these weird zig zags in my vision and occasionally my vision in one eye would just sort of gray out. At one point, my right eye went completely gray and i couldn't see out of it for about 45 seconds. I was at school (nursing school) when the eye fully grayed out. My teacher did a stroke assessment on me and said i was fine but to go to Urgent Care. Urgent care brushed it off as hypotension.

So the vision stuff faded in a day or two, but then i started getting really weird vertigo. When i would go from laying down to standing up and vice versa, the whole room would spin. That lasted for a few days, and then i just went through this weird period of feeling 'wobbly' for about a week. I had no other signs of symptoms.

The only advice i got during the whole experience, was to increase my warfarin. My cardiologist bumped me up to 3.0 - 3.5 range. Other than that there wasn't any follow up.

So that was in Feb, it all went away for about two months. And then two weeks ago the visual stuff and vertigo started again. I'm currently in the 'wobbly' phase. I have a CT scan tomorrow, but I feel like they're going to say they don't see anything (awesome, but also annoying).

Anyway, im either losing my mind or something weird is happening. Has anyone else experienced anything like this? Are they TIA's???

 

[LoveMyBraveHeart]

Hi there,
My husband had his second valve replacement (also mechanical) in August of 2019. He occasionally sees what he describes as heat waves rising in his vision. This usually happens when he has exerted himself, gotten too hot, or gone too long without eating. His INR stays at about 2.5. He has never lost any vision. Usually a cool shower or a spoonful of honey helps him in a pinch. I'm sorry it's not more helpful (diagnosis wise) but I don't think you're alone! I will say, these "episodes" have gotten fewer as the time since his last surgery passes. I'm glad you are getting the tests to rule anything other than your body adjusting to a major intrusion out. I wish you the very best.
Jill

 

[Heart_Fit]

thank you

Hi there,
My husband had his second valve replacement (also mechanical) in August of 2019. He occasionally sees what he describes as heat waves rising in his vision. This usually happens when he has exerted himself, gotten too hot, or gone too long without eating. His INR stays at about 2.5. He has never lost any vision. Usually a cool shower or a spoonful of honey helps him in a pinch. I'm sorry it's not more helpful (diagnosis wise) but I don't think you're alone! I will say, these "episodes" have gotten fewer as the time since his last surgery passes. I'm glad you are getting the tests to rule anything other than your body adjusting to a major intrusion out. I wish you the very best.
Jill

Thank you so much Jill!! I'm hopeful it's just an adjustment period. It makes since, they really put your body through hell.

 

[DachsieMom]

I don’t have exactly the same thing but I now get migraine with aura (no headache...just flashing sparkles like a kaleidoscope and nausea) after my surgery. If I take a Tylenol within a few minutes, it goes away. If I miss that window, I feel miserable and the sparkles get worse. They seem triggered by bright sunlight or intense exercise. Following my surgery, I think I was getting 3 or 4 a week. Now 5 years out, its about once every two months. I also now find that if I crouch down, I am dizzy as I rise. For example. If I am weeding in the yard. It has to be the warfarin because this never happened prior to my surgery.

 

[pellicle]

to a lesser extent I can identify with that and have found (by experimenting) that if I'm not taking 80mg of aspirin every other day that these things happen.

Hard to explain, but sometimes it feels like I'm a bit dizzy and is sometimes exacerbated by looking around suddenly and rapidly when tracking something moving in the opposite direction .

Rather than move the INR up, give the aspirin a try.

 

[Paleowoman]

Ever since AVR I’ve had episodes of migraine aura (zig-zagging pattern in vision, lasting about 20 mins each time) but no headaches, episodes of double vision which make me feel dizzy, and bright ‘blobs/sparkles of light dancing across my vision. I have a tissue valve, no warfarin. Sometimes I feel exceptionally tired before or after the aura/zig zagging episodes. GP got me to keep a diary of them over a period of months to see if there is a pattern to when they occur or triggers - there aren't - they can start any time, I’ve even woken in the middle of the night having the zig-zags ! I don’t take anything for them.

Visual disturbances have been discussed many times by several forum members over the years - you’d be surprised the number of threads about them ! They seem a relatively common occurrence after heart surgery but with no explanation as to why.

 

[KSS]

Hi! This might be a long shot but hoping maybe someone else has had experience with whatever is going on with me lately.

I had my Mechanical Valve Replacement in Nov 2019. In Feb 2020, while I was sick with the flu, i started getting these weird zig zags in my vision and occasionally my vision in one eye would just sort of gray out. At one point, my right eye went completely gray and i couldn't see out of it for about 45 seconds. I was at school (nursing school) when the eye fully grayed out. My teacher did a stroke assessment on me and said i was fine but to go to Urgent Care. Urgent care brushed it off as hypotension.

So the vision stuff faded in a day or two, but then i started getting really weird vertigo. When i would go from laying down to standing up and vice versa, the whole room would spin. That lasted for a few days, and then i just went through this weird period of feeling 'wobbly' for about a week. I had no other signs of symptoms.

The only advice i got during the whole experience, was to increase my warfarin. My cardiologist bumped me up to 3.0 - 3.5 range. Other than that there wasn't any follow up.

So that was in Feb, it all went away for about two months. And then two weeks ago the visual stuff and vertigo started again. I'm currently in the 'wobbly' phase. I have a CT scan tomorrow, but I feel like they're going to say they don't see anything (awesome, but also annoying).

Anyway, im either losing my mind or something weird is happening. Has anyone else experienced anything like this? Are they TIA's???

 

[KSS]

I also had the auras (starting years before AVR surgery), but now post-op surgery, I now also have “stars”, small flashes of light in my vision quite frequently. The auras come & go, but I experience the “stars” frequently every day.
No Dr has been able to tell me what may be causing the flashes of lights. I have a bovine valve, so only take baby aspirin daily.

 

[Sheenas7]

Hi! This might be a long shot but hoping maybe someone else has had experience with whatever is going on with me lately.

I had my Mechanical Valve Replacement in Nov 2019. In Feb 2020, while I was sick with the flu, i started getting these weird zig zags in my vision and occasionally my vision in one eye would just sort of gray out. At one point, my right eye went completely gray and i couldn't see out of it for about 45 seconds. I was at school (nursing school) when the eye fully grayed out. My teacher did a stroke assessment on me and said i was fine but to go to Urgent Care. Urgent care brushed it off as hypotension.

So the vision stuff faded in a day or two, but then i started getting really weird vertigo. When i would go from laying down to standing up and vice versa, the whole room would spin. That lasted for a few days, and then i just went through this weird period of feeling 'wobbly' for about a week. I had no other signs of symptoms.

The only advice i got during the whole experience, was to increase my warfarin. My cardiologist bumped me up to 3.0 - 3.5 range. Other than that there wasn't any follow up.

So that was in Feb, it all went away for about two months. And then two weeks ago the visual stuff and vertigo started again. I'm currently in the 'wobbly' phase. I have a CT scan tomorrow, but I feel like they're going to say they don't see anything (awesome, but also annoying).

Anyway, im either losing my mind or something weird is happening. Has anyone else experienced anything like this? Are they TIA's???

I had the vision loss like a screen going to all black and then slowly rising so I could see. It was a long time ago. My cardiologist put me on baby aspirin. It didn’t happen again until I went off the aspirin for my heart surgery and then it appeared again. I was immediately put back on the aspirin and has not happened again . Ask your doc but for me I must stay on the aspirin forever. Good luck.

 

[Quarry1]

Hi! This might be a long shot but hoping maybe someone else has had experience with whatever is going on with me lately.

I had my Mechanical Valve Replacement in Nov 2019. In Feb 2020, while I was sick with the flu, i started getting these weird zig zags in my vision and occasionally my vision in one eye would just sort of gray out. At one point, my right eye went completely gray and i couldn't see out of it for about 45 seconds. I was at school (nursing school) when the eye fully grayed out. My teacher did a stroke assessment on me and said i was fine but to go to Urgent Care. Urgent care brushed it off as hypotension.

So the vision stuff faded in a day or two, but then i started getting really weird vertigo. When i would go from laying down to standing up and vice versa, the whole room would spin. That lasted for a few days, and then i just went through this weird period of feeling 'wobbly' for about a week. I had no other signs of symptoms.

The only advice i got during the whole experience, was to increase my warfarin. My cardiologist bumped me up to 3.0 - 3.5 range. Other than that there wasn't any follow up.

So that was in Feb, it all went away for about two months. And then two weeks ago the visual stuff and vertigo started again. I'm currently in the 'wobbly' phase. I have a CT scan tomorrow, but I feel like they're going to say they don't see anything (awesome, but also annoying).

Anyway, im either losing my mind or something weird is happening. Has anyone else experienced anything like this? Are they TIA's???

I am having almost the identical symptoms. Had an AVR on 5/2/17 with a bovine valve. About 3 or 4 months later the zig zags started and have continued ever since. Doctors just brush it off. Recently the gray areas have appeared and it could be in either eye. Last for a few seconds up to a minute or so. Now I also get vertigo like sysmptoms as well. These come and go lasting a few seconds to a minute or so. Also am wondering if these are TIA's. Cant get to Cardio for another two weeks due to Covid. Am very anxious to here the results of your CT scan

 

[Heart_Fit]

I am having almost the identical symptoms. Had an AVR on 5/2/17 with a bovine valve. About 3 or 4 months later the zig zags started and have continued ever since. Doctors just brush it off. Recently the gray areas have appeared and it could be in either eye. Last for a few seconds up to a minute or so. Now I also get vertigo like symptoms as well. These come and go lasting a few seconds to a minute or so. Also am wondering if these are TIA's. Cant get to Cardio for another two weeks due to Covid. Am very anxious to here the results of your CT scan

Hey! Thanks glad you found this! I'll have my CT scan today at noon and hopefully have results by tomorrow. From what I've seen above, aspirin might be a good thing to add to my regime. I'm going to call my cardiologist today and see what they think. I remember right after surgery my surgeon told me to keep taking aspirin, but then my cardiologist took me off it at my follow up appt. So who knows.

 

[Heart_Fit]

I had the vision loss like a screen going to all black and then slowly rising so I could see. It was a long time ago. My cardiologist put me on baby aspirin. It didn’t happen again until I went off the aspirin for my heart surgery and then it appeared again. I was immediately put back on the aspirin and has not happened again . Ask your doc but for me I must stay on the aspirin forever. Good luck.

Thanks Sheena! Im going to call cardiologist and see what they say about aspirin today.

 

[Heart_Fit]

Ever since AVR I’ve had episodes of migraine aura (zig-zagging pattern in vision, lasting about 20 mins each time) but no headaches, episodes of double vision which make me feel dizzy, and bright ‘blobs/sparkles of light dancing across my vision. I have a tissue valve, no warfarin. Sometimes I feel exceptionally tired before or after the aura/zig zagging episodes. GP got me to keep a diary of them over a period of months to see if there is a pattern to when they occur or triggers - there aren't - they can start any time, I’ve even woken in the middle of the night having the zig-zags ! I don’t take anything for them.

Visual disturbances have been discussed many times by several forum members over the years - you’d be surprised the number of threads about them ! They seem a relatively common occurrence after heart surgery but with no explanation as to why.

Thank you for responding! I've started to see the other posts! Its crazy how many people talk about this.

 

[RAS]

This all sounds familiar. I had AVR in 2006. A couple months after I had brief cloudy vision and then a few days after that, a vertigo/dizzy incident. Nothing else until another couple months later when while walking, I experienced a feeling like I was going to faint, legs felt heavy, losing control of my feet. This lasted only about 15 seconds. I sat down and was back to normal quickly.

Long story short, I had some tests done including an ultrasound of my carotid artery and an echo of my heart.

Arteries looked very good, but the echo revealed that I had fibrin strands on my valve. The probable cause of my symptoms is that one or more strands had come off the valve and temporarily blocked blood flow. I was put on a daily aspirin and my INR target was raised to the upper end (3.0-3.5) of the standard range. It was at this point that I initiated doing home INR testing so I could more closely monitor.

It is not easy for Cardiologists to see these strands especially on an external echo. My Cardiologist reviews all echos 'blind" in other words he does not know who he is looking at when first looking at an echo so as to prevent any unconscious bias in his evaluation based on previous diagnosis and knowledge of a given patient.

Over many years, the fibrin strands appeared to lesson with each echo. It has now been about six years since any strands were visible on my valve. Although I still take the daily aspirin, my INR target is now expanded back 2.5-3.5. I have had no further incidents since that first year.

Fibrin is formed as part of the body's effort to heal injury. It starts as fibrinogen that forms strands and could eventually become a clot. Strands can occur on both mechanical and tissue valves.

It's been a long time, since I researched this, but I recall a couple studies. One study assessed the prevalence of fibrin strands on patients at intervals after AVR. The conclusion was that most strands appeared within the first six months. In other words, patients who did not have strands within that time did not later develop them. It was a small study and I think it lasted only five years. The authors recommended that more aggressive anti-coagulation be considered in days and weeks after surgery.

The second study I recall was done to determine prevalence of fibrin strands in the population of AVR patients and also to compare diagnosis using external vs internal (TEE) echos. I don't recall much about this, but what I do remember is that nearly half of patients who had a TEE echo had fibrin strands noted. A much smaller percentage were diagnosed using external echo. This is simply because of the greater clarity of an internal echo vs external. In addition, there were variances in how many doctors diagnosed fibrin strands for a given echo. They all looked at the same echos, but some saw strands and some did not.

Here is my recommendation: If not already scheduled, add an echo to your planned tests. Make sure your cardiologist does a blind review so no bias creeps in one way or the other. Also get a second or even third opinion. Have at least one other cardiologist review your echo.

 

[Heart_Fit]

This all sounds familiar. I had AVR in 2006. A couple months after I had brief cloudy vision and then a few days after that, a vertigo/dizzy incident. Nothing else until another couple months later when while walking, I experienced a feeling like I was going to faint, legs felt heavy, losing control of my feet. This lasted only about 15 seconds. I sat down and was back to normal quickly.

Long story short, I had some tests done including an ultrasound of my carotid artery and an echo of my heart.

Arteries looked very good, but the echo revealed that I had fibrin strands on my valve. The probable cause of my symptoms is that one or more strands had come off the valve and temporarily blocked blood flow. I was put on a daily aspirin and my INR target was raised to the upper end (3.0-3.5) of the standard range. It was at this point that I initiated doing home INR testing so I could more closely monitor.

It is not easy for Cardiologists to see these strands especially on an external echo. My Cardiologist reviews all echos 'blind" in other words he does not know who he is looking at when first looking at an echo so as to prevent any unconscious bias in his evaluation based on previous diagnosis and knowledge of a given patient.

Over many years, the fibrin strands appeared to lesson with each echo. It has now been about six years since any strands were visible on my valve. Although I still take the daily aspirin, my INR target is now expanded back 2.5-3.5. I have had no further incidents since that first year.

Fibrin is formed as part of the body's effort to heal injury. It starts as fibrinogen that forms strands and could eventually become a clot. Strands can occur on both mechanical and tissue valves.

It's been a long time, since I researched this, but I recall a couple studies. One study assessed the prevalence of fibrin strands on patients at intervals after AVR. The conclusion was that most strands appeared within the first six months. In other words, patients who did not have strands within that time did not later develop them. It was a small study and I think it lasted only five years. The authors recommended that more aggressive anti-coagulation be considered in days and weeks after surgery.

The second study I recall was done to determine prevalence of fibrin strands in the population of AVR patients and also to compare diagnosis using external vs internal (TEE) echos. I don't recall much about this, but what I do remember is that nearly half of patients who had a TEE echo had fibrin strands noted. A much smaller percentage were diagnosed using external echo. This is simply because of the greater clarity of an internal echo vs external. In addition, there were variances in how many doctors diagnosed fibrin strands for a given echo. They all looked at the same echos, but some saw strands and some did not.

Here is my recommendation: If not already scheduled, add an echo to your planned tests. Make sure your cardiologist does a blind review so no bias creeps in one way or the other. Also get a second or even third opinion. Have at least one other cardiologist review your echo.

Hey RAS, thank you so much for this. I just had my CT today. Called my cardiologist afterwards and asked him to move my echo up. Surprisingly i haven't had one since my surgery in November. I'm going to push for the echo's and a TEE if i can. Even if it's not a life threatening situation, the amount of worrying i'm doing is making me crazy. I just want to know what the hell it is and this sounds totally plausible.

 

[egar]

I have had many, if not all, of these symptoms on occasion since my mitral valve replacement (mechanical) in October 2018. The incidents rarely last longer than 30 seconds, but recently the frequency seems to be increasing. My cardiologist thought it might be a transient ischemic attack (TIA, mini-clot), so she increase my INR goal to 3.0-3.5. The opthamologist said it was a temporary drop in blood pressure. I tend to agree more with the opthamologist's theory, but the events are over so quickly, I haven't been able to get a blood pressure during one.

 

[Heart_Fit]

UPDATE: CT Scan came back totally normal - I don't know if that totally rules out anything from my valve being involved? Hoping my cardiologist calls back tomorrow with his input.

 

[Cork]

I also have had the symptoms of dizziness and migraines without headaches. I had mechanical AVR & MVR 15 years ago. Never had any of the issues before but they started immediately after surgery. Occasionally it would get to the point where I would almost feel like I was going to black out but never did. Felt like I was spinning and vision would go blank for 15 to 20 seconds. Even some nausea. Took a few years but I finally ended up at a neurologist that diagnosed vestibular migraines. Put me on a low dose med and had me do some vestibular PT. It helped a lot. I used to only be able to go a few weeks or maybe a month without an episode. Now I only have 1 or 2 episodes a year at most and they aren't as severe and it doesn't last nearly as long. I know what you mean about the worrying though. Hang in there.

 

[Protimenow]

I have been getting those Ocular Migraines for 53 years -- long before my OHS. Originally, I got migraines, but in a few months the pain stopped and all I got were the ocular symptoms. These usually last for about 30 minutes. There didn't seem to be any change in intensity or frequency after my OHS.

As far as the temporary blindness -- the only time I got these was when I took Zyrtec. There's something about it that makes my vision turn to black, and sometimes made one side of my tongue tingle, sometimes transient numbness in a finger or two, and general **** that you wish would stop and not return. I stopped taking that stuff.

I used to take an 81 mg aspirin at night. This, too, had no influence on my ocular migraine attacks.

As far as getting dizzy or having vertigo if you stand up quickly - maybe your blood pressure is too low. When I was in the hospital last month, they did an orthostatic test -took my BP when I was laying down, took it when I was sitting on the bed with my feet on the floor, then tested again when I stood up. I was okay.

Still, standing up too quickly or, perhaps turning your head quickly - could cause the dizziness and vertigo -- after a while, you learn to do those things slowly. After a while, you'll convince yourself that it's a good idea, when you get out of a chair, bed, or whatever, to make sure that you have good footing and good balance. Without those checks, you could wind up with a real problem.

 

[Rapidman]

I had classic migraines with visual aura followed by a mild headache several times a year before my AVR in 2016. After my surgery I have lost my vision 3 times for about 30 to 45 seconds in one eye and my ocular aura that I had with my classic migraines without the headache occurred several times a week. That has lessened to once a week. I also get disequilibrium spells randomly. I have seen an ophthalmologist within minutes of loosing my sight briefly with no evidence of a clot. I had an MRI of my brain, CT angiogram of my brain and my annual echo all about the same time and all were normal. Cardiologist thinks it’s more neurological than cardiac related.