Migraine aura anyone? Or does the cheese stand alone?

[harrietW]

Workmonky
I sure do appreciate what you had to say here. I struggle with Visual problems since my first surgery 4 yrs ago next month but l am 5 mths post my second surgery ( both valve replacements) and struggling every bit as much if not more so than before. I have been to both my eye doc and opthamologist most recently. I've had three new sets of glasses most recent new set last week. I struggle with a lot of Aura I can totally relate to the feeling of watching like TV reruns over and over. I really experienced that post-op for the first few weeks in the hospital and often at home here since. Vertigo is extremely bad. I agree with you they look at me like l've lost my mind it's like I was the first person that ever brought it to their attention or something. I know that I can't be the only one then experiences these things and it would be nice if they were more aware.

In fact the visuals are so insane and intense l am traumatized by the trauma of my latest surgery in July 9/19
I am seeking outside help - counseling to try and deal with the psychosis & delirium I experienced the first week or 10 days post-surgery. Truly horrifying. I am praying that these visuals will lessen over time.

 

[johnmarkos]

I've had migraines with aura, sometimes with a painful headache and nausea, from time to time, since I was a teenager. I used to get them every few weeks -- now it's maybe three a year. I treat them with aspirin and coffee while I have the aura, and I usually don't get much of a headache. I learned about that treatment from Oliver Sacks' book, Migraine. I guess if I get a mechanical valve, I'll skip the aspirin and just drink the coffee.

 

[bizinsider]

Hi. I am 67 and have been getting auras since my mid-20s, roughly about the time I was diagnosed with "murmur," which years later was identified as a bicuspid valve. I have not yet had surgery, am generally asymptomatic, but with my ascending aorta having expanded to 4.8 - 4.9 cm (MRA vs echo), and changes in a few other measurements, I'm now on the there every three-month-scan-plan and the "not 'if' but 'when'" section of the waiting room.

I was always told these were ocular migraines, but in some recent searches I found some definition that differentiated between ocular and visual migraines. I'm not sure it matters - we're all experiencing the same thing.

Mine typically occurred multiple times a year (as in several, to the best of my recollection.) Lately, they have been more frequent: Monthly, if not more. (Not sure if there is a connection but I've also had an increase in broken blood vessels in my eyes - probably unrelated but maybe others have noticed something similar?) That prompted me to do a bit of re-researching, and stumbled on a number of stories over the past year, such as this one, citing a study that suggests ocular migraines are linked to atrial fibrillation, leading to strokes and other issues.

Yet, here we all are and none of us likely have been diagnosed with atrial fibrillation and we're still standing!

That has me wondering if for those of us with valve issues, even before surgery, there is another connection that the medical community has not yet studied or identified. My only "electrical" problem is a right-bundle-branch block, which was diagnosed in my 20s via an EKG and which I've been told is nothing to worry about.

Could it be oculars are also an indication of other valve-related issues? Doctors tend to be very myopic, with a "not in my backyard" attitude. Every now and then there is one with a much broader view.

I just put this out there because maybe there is a physician or research reading this who can connect the dots.

I was a financial journalist for more than 40 years. I like to think I can see things where others don't. I have really good medical care, a top-notch, thoughtful cardiologist and an exceedingly high-level, research-oriented consulting cardiologist (I take the belts/suspenders approach.) When the time comes it will either be CC or Mayo, and you can bet I'll be asking about this along the way, as I've been doing.

Best,
Herb

 

[johnmarkos]

My hunch is that migraines are just really, really common, but maybe there is a connection.

That has me wondering if for those of us with valve issues, even before surgery, there is another connection that the medical community has not yet studied or identified. My only "electrical" problem is a right-bundle-branch block, which was diagnosed in my 20s via an EKG and which I've been told is nothing to worry about.

 

[Catie]

I had migraines from age 4 till 51. They abruptly stopped with menopause. Fast-forward to my heart surgery in 2016, after which they cranked up again. I still get ocular ones but can't remember any with pain for some time now.

A few days after my surgery I started getting a different visual anomaly that still occurs at times. It happened again today! The field of vision in my right eye temporarily disappears, all but a bit. Looks all grayed out or something. It's hard to describe. I had to stay in the ER for observation the first time it happened and had neuro & ophthalmology checks. Followed up with local neurologist and specialist eye doc, as well. No explanation for it, but it's quite startling every time and it takes a few minutes for things to return to normal.

 

[johnmarkos]

Fun fact: my parents were worried about my teenage migraines 32 years ago, because they were pretty debilitating, so I got a CT scan to find out if there was anything wrong with my noggin. They didn't find anything, but the CT contrast dye made me break out in hives, so I have to take prednisone and Benadryl before my pre-surgery CTA scan. My cardiologist wants to rule out any coronary artery disease -- it's unlikely, given my diet and exercise habits, but if it was present, the surgeon could presumably fix it while he's in there.

 

[bizinsider]

They didn't find anything, but the CT contrast dye made me break out in hives, so I have to take prednisone and Benadryl before my pre-surgery CTA scan

John, seems like you drew the short straw! Actually, all of us did, in one way or the other. On the other hand, we're winners b/c there are no surprises like folks who didn't know they had an aneurism or heart-damaging valve issue until it was too late!

 

[tom in MO]

To bastardize an an old hippy joke: A guy complains to a hippy about how he regularly gets dizzy, hallucinations, auras, random strange sounds and lights due to his medical problems. The hippy responds "Hey man you're lucky, I have to buy drugs to get that kind of high."

 

[Protimenow]

Catie: Including myself, I know of three people who've had that temporary blindness --- and all took Zyrtec. In addition to that scary, but temporary, los of vision in one eye, I also experienced strange numbness in my mouth and in my hands. After a few days off of Zyrtec, these phenomena disappared. Is it possible that you were taking Zyrtec when these things happened.


Johnmarcos - you don't have to avoid Aspirin when you have an aura. A little aspirin for a few days shouldn't cause any abnormal bleeding - just don't take the 325 mg tablets daily.

I take one 81 mg enteric coated aspirin every night. I'm not sure if it helps, but I don't think it's done any damage. Others on this forum are also taking the 81 mg aspirin.

 

[Rapidman]

I have a long history of classic migraines with the typical visual aura. Headaches have only been minor. Since my surgery in 2016 the auras are more intense, last longer and occur more frequently. I have now had 4 episodes of a gray “curtain” obscuring my vision for up to a minute or two. Have seen ophthalmologist, cardiologist and primary docs with no explanation. INR each time was 2.5. Had CTA and MRI of my head along with repeat echos and CTA of chest all of which were negative. Obviously concerned about ischemic event in eye but never any evidence.

 

[workmonkey]

Workmonky
I sure do appreciate what you had to say here. I struggle with Visual problems since my first surgery 4 yrs ago next month but l am 5 mths post my second surgery ( both valve replacements) and struggling every bit as much if not more so than before. I have been to both my eye doc and opthamologist most recently. I've had three new sets of glasses most recent new set last week. I struggle with a lot of Aura I can totally relate to the feeling of watching like TV reruns over and over. I really experienced that post-op for the first few weeks in the hospital and often at home here since. Vertigo is extremely bad. I agree with you they look at me like l've lost my mind it's like I was the first person that ever brought it to their attention or something. I know that I can't be the only one then experiences these things and it would be nice if they were more aware.

In fact the visuals are so insane and intense l am traumatized by the trauma of my latest surgery in July 9/19
I am seeking outside help - counseling to try and deal with the psychosis & delirium I experienced the first week or 10 days post-surgery. Truly horrifying. I am praying that these visuals will lessen over time.

I empathize with your struggles. One thing I learned over time is that this is not eye-related - it's definitely an issue with the visual cortex in the brain, where vision is processed. A doctor once theorized that the heart-lung machine impacts the tiny blood vessels within the brain, which can then become sensitive to changes in blood pressure. The reduced blood flow causes the occular migraines (and other odd sensations). As other commenters have noted, this tends to occur in people who already have a predilection for migraines.

The good news is that the episodes are always temporary and lessen over time, and aren't dangerous. Just uncomfortable and annoying. I do think they cause anxiety and panic, as they are such odd sensations. And you feel like your brain is out of whack, or maybe it has something to do with your heart. But eventually you learn to stop fearing the episodes.

I do think counseling or therapy helps for anyone. Surgeries like this (and the resulting side effects) can cause severe, lasting anxiety, and it certainly helps to talk through the experience with someone. And you always have the forum for support! Be well.

 

[Catie]

Protimenow and Rapidman, I really appreciate your posts. I thought I was the lone ranger!

I have never had Zyrtec. In fact I had to look it up to see what kind of medication it is. Do you still get the temporary loss of vision in one eye like I do?

Rapidman, a gray curtain about sums it up! I thought it was white the first time it happened but since then it seems to be grayish. They gave me an MRI right away too, fearing a stroke.

A couple of times a few weeks after surgery I had transient aphasia, which I learned is a different kind of migraine. I was trying to speak and trying to write notes but there was a vast disconnect between what I was trying to express and what came out. Words were garbled and twisted up, making no sense.

There also were a few exertion / thunderclap headaches. One night I was airing my tire and bore down hard to make the connection. My head felt like it exploded. if I hadn't been alone I might have had somebody take me to the ER. Five or 10 minutes later it was over.

I'm grateful these kinds of episodes don't last long!

 

[workmonkey]

Hi. I am 67 and have been getting auras since my mid-20s, roughly about the time I was diagnosed with "murmur," which years later was identified as a bicuspid valve. I have not yet had surgery, am generally asymptomatic, but with my ascending aorta having expanded to 4.8 - 4.9 cm (MRA vs echo), and changes in a few other measurements, I'm now on the there every three-month-scan-plan and the "not 'if' but 'when'" section of the waiting room.

I was always told these were ocular migraines, but in some recent searches I found some definition that differentiated between ocular and visual migraines. I'm not sure it matters - we're all experiencing the same thing.

Mine typically occurred multiple times a year (as in several, to the best of my recollection.) Lately, they have been more frequent: Monthly, if not more. (Not sure if there is a connection but I've also had an increase in broken blood vessels in my eyes - probably unrelated but maybe others have noticed something similar?) That prompted me to do a bit of re-researching, and stumbled on a number of stories over the past year, such as this one, citing a study that suggests ocular migraines are linked to atrial fibrillation, leading to strokes and other issues.

Yet, here we all are and none of us likely have been diagnosed with atrial fibrillation and we're still standing!

That has me wondering if for those of us with valve issues, even before surgery, there is another connection that the medical community has not yet studied or identified. My only "electrical" problem is a right-bundle-branch block, which was diagnosed in my 20s via an EKG and which I've been told is nothing to worry about.

Could it be oculars are also an indication of other valve-related issues? Doctors tend to be very myopic, with a "not in my backyard" attitude. Every now and then there is one with a much broader view.

I just put this out there because maybe there is a physician or research reading this who can connect the dots.

I was a financial journalist for more than 40 years. I like to think I can see things where others don't. I have really good medical care, a top-notch, thoughtful cardiologist and an exceedingly high-level, research-oriented consulting cardiologist (I take the belts/suspenders approach.) When the time comes it will either be CC or Mayo, and you can bet I'll be asking about this along the way, as I've been doing.

Best,
Herb

I do know they have connected heart valve problems with migraines in the past. High blood pressure, as well. There is a definite link. In my case, I had a bicuspid aortic valve, with my surgeon explained is a circulatory defect formed while in the womb. It follows that the genetic markers that would cause a bicuspid valve might also affect circulation in the brain or elsewhere, which could be a direct cause of migraines. What most interesting to me is that the repairs they make to your heart valve seem to exacerbate the migraine issue. It's almost as if by fixing one broken thing, the other broken thing gets out of balance. Or perhaps the surgery itself causes a change in circulation that impacts the migraine center ... Whatever it is, smarter people than me should look into, to help prevent it or manage it ... It's the total lack of acknowledgement from the medical community that causes as much angst as the migraines themselves.

 

[Protimenow]

Protimenow and Rapidman, I really appreciate your posts. I thought I was the lone ranger!

I have never had Zyrtec. In fact I had to look it up to see what kind of medication it is. Do you still get the temporary loss of vision in one eye like I do?

Rapidman, a gray curtain about sums it up! I thought it was white the first time it happened but since then it seems to be grayish. They gave me an MRI right away too, fearing a stroke.

A couple of times a few weeks after surgery I had transient aphasia, which I learned is a different kind of migraine. I was trying to speak and trying to write notes but there was a vast disconnect between what I was trying to express and what came out. Words were garbled and twisted up, making no sense.

There also were a few exertion / thunderclap headaches. One night I was airing my tire and bore down hard to make the connection. My head felt like it exploded. if I hadn't been alone I might have had somebody take me to the ER. Five or 10 minutes later it was over.

I'm grateful these kinds of episodes don't last long!

I don't take Zyrtec, and the ocular 'gray screen?' episodes completely stopped.

Like you, I also get the transient aphasia - it's scary as hell (and especially scares my wife), but, gladly, only temporary.

 

[Protimenow]

"Whatever it is, smarter people than me should look into, to help prevent it or manage it ... It's the total lack of acknowledgement from the medical community that causes as much angst as the migraines themselves."

Unfortunately, it doesn't appear to be common enough for the drug companies to try and create an expensive magic pill for it, or for doctors or researchers to devote part of their careers worrying about, and are so unreliable (these don't happen regularly enough to anticipate) that research will be difficult. Even physicians who get these things apparently don't commit to figuring out what they are, how to prevent them, or how to treat them. And, FWIW, I don't think that I'd be willing to take a pill that may have interesting side effects, once or twice daily, to prevent or shorten these episodes.

So - it appears that these ocular migraines, transient aphasia, and other things will probably remain orphans, until some accidentally comes up with a 'cure.'

 

[Catie]

Protimenow, I'm with you--even if they had it figured out, I would not try to medicate something that shows up so randomly and (gratefuly!!) ebbs away quickly. But I'm thankful to know I'm not the only one experiencing these odd things.

 

[Protimenow]

Catie, I'm sure that there's an army of people out here who deal with the same issues. It certainly would be nice if someone accidentally found something that was inexpensive, readily available, and 100% effective at stopping these transient events. (I know chocolate and caffeine are supposed to turn them off). It would be helpful if there was some way to know what triggers them (if anything detectable) so that we can a) stop activating the triggers or b) get an early warning so we can take whatever stops them before they start.

I think, though, that this would be a fortuitous accident, rather than the result of actual research.

 

[Catie]

I hear you! Would be very nice to prevent them altogether!

My two triggers I'm aware of, are going without eating for too long (leading to auras) and catching light in my eyes a certain way. But I don't really understand and can't prevent the latter, it just happens.

 

[Protimenow]

Bright light also triggers them for me - but not always.

I'm almost constantly without food - so I may check that out, too.

I sometimes get them a few times over a day or two - then no auras for many days. I think being overly tired may have something to do with it.

Thanks for sharing your triggers.

 

[Catie]

Light is a rarer trigger here, too. But that not-eating trigger is really consistent for me. I knew should've grabbed a spoon of peanut butter on my way out, even today, since it was lunch time and I'd only had coffee. Soon as I sat down at the restaurant, here came the aura. If I even eat something small sooner, it goes a long way to preventing another migraine for me.