Migraine aura anyone? Or does the cheese stand alone?

[workmonkey]

As this has been a topic on this forum for years, and I finally have some answers, I wanted to provide an update.

After years of "migraines" and "auras" that started directly after my aortic aneurysm repair and valve surgery (10 years ago) that were never taken seriously by my cardiologists, two weeks ago I had a grand mal seizure that sent me to the hospital for three days. Turns out my "migraines" were actually focal-point seizures that a subsequent brain MRI linked to some white matter and brain bleeding that the neurologists suspect was connected to my time on the bypass machine (or aortic clamping) during my heart surgery. Or possibly a connection between the carotid arteries and impact from the surgery. Perhaps I always had epilepsy that the surgery triggered. They can't say with certainty, but some connection seems self-evident to them.

I've since started on seizure medication that has finally stopped my "migraines" in a way migraine medication never did. And I feel normal, so I don't want anyone about to undergo surgery to add this to their anxiety list - But frankly, it does p*ss me off how unserious cardiologists have taken this obvious issue for so long, especially knowing how common a complaint it is on this forum. If anyone is experiencing flashing lights, body tingling, deja vu, gastric rises, fuzzy brain, etc after a heart surgery, my advice is to find a good neurologist and insist on a brain MRI - One day, a study will be done on this, but until then, we'll need to be our own advocates.

I appreciate this forum as always - When I was in the hospital, I couldn't help but think "wait until my family at valve replacement hears about this!"

 

[Zoltania]

Nice to see you back here, @workmonkey. I'm glad you got the correct diagnosis and are doing well.

Thanks for sharing!

 

[rlsantucijr]

As this has been a topic on this forum for years, and I finally have some answers, I wanted to provide an update.

After years of "migraines" and "auras" that started directly after my aortic aneurysm repair and valve surgery (10 years ago) that were never taken seriously by my cardiologists, two weeks ago I had a grand mal seizure that sent me to the hospital for three days. Turns out my "migraines" were actually focal-point seizures that a subsequent brain MRI linked to some white matter and brain bleeding that the neurologists suspect was connected to my time on the bypass machine (or aortic clamping) during my heart surgery. Or possibly a connection between the carotid arteries and impact from the surgery. Perhaps I always had epilepsy that the surgery triggered. They can't say with certainty, but some connection seems self-evident to them.

I've since started on seizure medication that has finally stopped my "migraines" in a way migraine medication never did. And I feel normal, so I don't want anyone about to undergo surgery to add this to their anxiety list - But frankly, it does p*ss me off how unserious cardiologists have taken this obvious issue for so long, especially knowing how common a complaint it is on this forum. If anyone is experiencing flashing lights, body tingling, deja vu, gastric rises, fuzzy brain, etc after a heart surgery, my advice is to find a good neurologist and insist on a brain MRI - One day, a study will be done on this, but until then, we'll need to be our own advocates.

I appreciate this forum as always - When I was in the hospital, I couldn't help but think "wait until my family at valve replacement hears about this!"

I am glad you're getting relief. I had a TAVR a few weeks ago. I had a mild headache for a least two weeks (finally gone), still seeing stars and auras, and serious brain fog that is almost gone. I mentioned this to my cardiologist and had a CT scan which showed nothing. I will tell my neurologist next visit. Yes, you have to be your own advocate!

 

[Paleowoman]

As this has been a topic on this forum for years, and I finally have some answers, I wanted to provide an update.

After years of "migraines" and "auras" that started directly after my aortic aneurysm repair and valve surgery (10 years ago) that were never taken seriously by my cardiologists, two weeks ago I had a grand mal seizure that sent me to the hospital for three days. Turns out my "migraines" were actually focal-point seizures that a subsequent brain MRI linked to some white matter and brain bleeding that the neurologists suspect was connected to my time on the bypass machine (or aortic clamping) during my heart surgery. Or possibly a connection between the carotid arteries and impact from the surgery. Perhaps I always had epilepsy that the surgery triggered. They can't say with certainty, but some connection seems self-evident to them.

I've since started on seizure medication that has finally stopped my "migraines" in a way migraine medication never did. And I feel normal, so I don't want anyone about to undergo surgery to add this to their anxiety list - But frankly, it does p*ss me off how unserious cardiologists have taken this obvious issue for so long, especially knowing how common a complaint it is on this forum. If anyone is experiencing flashing lights, body tingling, deja vu, gastric rises, fuzzy brain, etc after a heart surgery, my advice is to find a good neurologist and insist on a brain MRI - One day, a study will be done on this, but until then, we'll need to be our own advocates.

I appreciate this forum as always - When I was in the hospital, I couldn't help but think "wait until my family at valve replacement hears about this!"

Thank you for posting this @workmonkey I do hope some research is done on this as there are a number of forum members get these migraine auras following heart surgery.

Keep well !

 

[workmonkey]

Hi All -

Thanks as always for the support and kind words.

Wanted to add another update to this running chain. As part of the the sequence of brain scans resulting from my epilepsy diagnosis, they ultimately found a brain aneurysm in my left MCA. A subsequent cerebral angiogram found it to be unstable, and thus this morning I had an endovascular, stent-assisted coiling procedure to seal up the aneurysm.

I know there has been some talk on this forum about the connection between aortic aneurysms and brain aneurysms. My doctors, at least, are uncertain, but say the coincidence is probably connected to a connective-tissue disorder or yet-to-be-identified genetic marker. I'm a tall guy and this seems more common among that subset.

As you can probably deduce from me writing the same day, brain surgery for aneurysms is WAY easier than heart surgery for aneurysms. Once I was put under, I was told the whole procedure took about a half hour, and required nothing more than a knick into my femoral artery. I'm staying overnight, and, assuming no complications, home tomorrow. The primary risk is stroke/clots, but it is low with the endovascular method.

The primary summary here is that unlike heart aneurysms, which present symptoms beforehand (murmur, shortness of breath) that can be detected by primary care doctors, brain aneurysms usually present no symptoms whatsoever until after they rupture. They are usually found incidentally. In this odd way, my seizure (unrelated to the aneurysm) was a fortunate event, as it led to the brain scan that caught the aneurysm. And just as with the aorta, a ruptured brain aneurysm is bad news. That doesn't mean everyone that has had a heart aneurysm should run out to get a brain MRI, but just a point to discuss with your doctor (it's estimated that 5 million Americans have undiagnosed brain aneurysms. Only 1% of those rupture each year, and many people can live forever with one, but good to be mindful of).

Reminder to all of us that we are extremely lucky to live at a time where they can catch and fix these things before they cause us damage. Previous generations were not so lucky. It is natural to feel anxious with an aneurysm diagnosis (as we hear often on this forum), but it is just as important to focus on the good fortune to live in the time we do.

Best of luck to everyone and wishing everyone good health.

Mark

 

[Timmay]

Hi All -

Thanks as always for the support and kind words.

Wanted to add another update to this running chain. As part of the the sequence of brain scans resulting from my epilepsy diagnosis, they ultimately found a brain aneurysm in my left MCA. A subsequent cerebral angiogram found it to be unstable, and thus this morning I had an endovascular, stent-assisted coiling procedure to seal up the aneurysm.

I know there has been some talk on this forum about the connection between aortic aneurysms and brain aneurysms. My doctors, at least, are uncertain, but say the coincidence is probably connected to a connective-tissue disorder or yet-to-be-identified genetic marker. I'm a tall guy and this seems more common among that subset.

As you can probably deduce from me writing the same day, brain surgery for aneurysms is WAY easier than heart surgery for aneurysms. Once I was put under, I was told the whole procedure took about a half hour, and required nothing more than a knick into my femoral artery. I'm staying overnight, and, assuming no complications, home tomorrow. The primary risk is stroke/clots, but it is low with the endovascular method.

The primary summary here is that unlike heart aneurysms, which present symptoms beforehand (murmur, shortness of breath) that can be detected by primary care doctors, brain aneurysms usually present no symptoms whatsoever until after they rupture. They are usually found incidentally. In this odd way, my seizure (unrelated to the aneurysm) was a fortunate event, as it led to the brain scan that caught the aneurysm. And just as with the aorta, a ruptured brain aneurysm is bad news. That doesn't mean everyone that has had a heart aneurysm should run out to get a brain MRI, but just a point to discuss with your doctor (it's estimated that 5 million Americans have undiagnosed brain aneurysms. Only 1% of those rupture each year, and many people can live forever with one, but good to be mindful of).

Reminder to all of us that we are extremely lucky to live at a time where they can catch and fix these things before they cause us damage. Previous generations were not so lucky. It is natural to feel anxious with an aneurysm diagnosis (as we hear often on this forum), but it is just as important to focus on the good fortune to live in the time we do.

Best of luck to everyone and wishing everyone good health.

Mark

Hi @workmonkey - Was your MRI with contrast? Probably - but just asking. Do you have a Mech or tissue valve?

 

[Still Ticking]

I have a history of infrequent migraines with aura, which increased significantly before my open heart surgery three months ago. I was getting about one aura event every month frequently accompanied by nausea, confusion, and sometimes headaches which followed shortly afterwards. Trigger was usually related to lighting conditions, particularly "blue" light and overhead fluorescent bulbs were particularly bothersome.

Since surgery and valve repair, I now seem to get aura symptoms more frequently (a couple times a week right now), but interestingly they are more benign in nature and I seem to get none of the migraine symptoms just the optical aura symptoms. These aura symptoms are also somewhat diminished in intensity. It starts with a blind spot at the focal point of my vision which lasts a few minutes and is replaced by a crescent shaped jagged string which drifts around the periphery of my vision which lasts a while longer. The whole thing is done in about 20 minutes or so, and in the past the crescent shaped string had much more dramatic scintillating triangles which are now greatly diminished. The migraine aftereffects are so diminished I even worked out about an hour after having an aura recently, something I would have never been able to do in the past.

So medications wise I have been taking baby aspirin before and after surgery, so don't think this is a factor in the change. I am now taking a very low maintenance dose of metoprolol (12.5 mg per day), not sure if that would be enough to do anything. Also food and drink don't seem to have much effect, it is still almost always bright lighting conditions which trigger the events. Finally, my heart rate and blood pressure are very normal even during auras, so also can't seem to correlate my episodes with those.

 

[pekster11]

Since I've started taking low dose aspirin every other day I haven't experienced any more incidence of flashing lights or grey outs in my left eye.
I'm convinced now this was being caused by micro-emboli

 

[workmonkey]

I have a history of infrequent migraines with aura, which increased significantly before my open heart surgery three months ago. I was getting about one aura event every month frequently accompanied by nausea, confusion, and sometimes headaches which followed shortly afterwards. Trigger was usually related to lighting conditions, particularly "blue" light and overhead fluorescent bulbs were particularly bothersome.

Since surgery and valve repair, I now seem to get aura symptoms more frequently (a couple times a week right now), but interestingly they are more benign in nature and I seem to get none of the migraine symptoms just the optical aura symptoms. These aura symptoms are also somewhat diminished in intensity. It starts with a blind spot at the focal point of my vision which lasts a few minutes and is replaced by a crescent shaped jagged string which drifts around the periphery of my vision which lasts a while longer. The whole thing is done in about 20 minutes or so, and in the past the crescent shaped string had much more dramatic scintillating triangles which are now greatly diminished. The migraine aftereffects are so diminished I even worked out about an hour after having an aura recently, something I would have never been able to do in the past.

So medications wise I have been taking baby aspirin before and after surgery, so don't think this is a factor in the change. I am now taking a very low maintenance dose of metoprolol (12.5 mg per day), not sure if that would be enough to do anything. Also food and drink don't seem to have much effect, it is still almost always bright lighting conditions which trigger the events. Finally, my heart rate and blood pressure are very normal even during auras, so also can't seem to correlate my episodes with those.

I also had "migraine with aura" for decades before my heart surgery - They increased in intensity and frequency in the years after my surgery, adding symptoms such as intense deja vu, brain fog and vertigo to the flashing lights I had always experienced. The "migraines" (also often triggered by lights) rarely caused headaches or pain and usually passed within twenty minutes, so I always just accepted the doctor diagnosis of "complex migraines" and left it at that.

It is only after I had a eventually had a full-blown tonic clonic seizure (ten years after my heart surgery) and was observed at a hospital for three days that I was finally informed my "migraines" were actually clinical focal point seizures, and I had epilepsy. The relationship and symptoms between migraines and seizures can overlap , and seizures are hard to diagnose unless you have one while wearing an EEG cap ... The neurologist would not speculate if the heart surgery triggered my epilepsy, but didn't rule it out either.

This isn't to say that everyone on this forum who describes "migraines with aura" has epilepsy, but only to say that since I started on Keppra (traditional treatment for epilepsy) my brain has felt clearer than it had for the ten years after my heart surgery, and I no longer have any migraine symptoms whatsoever (including flashing lights). I regret not asking more questions about my "migraines" earlier, and just accepting the symptoms as part of life, as I spent many years with a brain that wasn't at 100% ...

 

[workmonkey]

Since I've started taking low dose aspirin every other day I haven't experienced any more incidence of flashing lights or grey outs in my left eye.
I'm convinced now this was being caused by micro-emboli

That's completely possible - My brain MRI revealed evidence of mini-strokes that my neurologist thought may be caused micro-emboli or TIA ... there is evidence of a connection between being on a bypass machine and micro-emboli. I'm on blood thinners now as well and seems to be helpful.

 

[Protimenow]

I've been avoiding a neurologist for a while - I stopped seeing my last neurologist after his receptionist/office staff member/? lied to me about calling and mailing me regarding an address change and the fact that he no longer accepted my insurance. My PCP has been prescribing my medication for focal point seizure for the past few years.

I get auras. A few days ago, I had what seemed like amaurosa in my left eye - partial blindness in part of the field of vision that cleared up after a few minutes.

My car was broadsided by a big, heavy, pickup truck two weeks ago. I've had occasional numbness in my left thumb, and occasional numbness in the palm of my right hand. Perhaps there was more damage than I noticed - spinal cord twist? Neurological thing? I hate hospitals, and can't go to one because I have to stay with my wife, but I see my PCP tomorrow and may again get involved with a neurologist.

(I was diagnosed with focal epilepsy about a decade ago, but have had it since around 1993, if not earlier. Medication has so far stopped these episodes, but I still get auras - they probably last 30 minutes or so. At one point, I was able to stop these episodes by drinking coke (caffeine seemed to help) or having a chocolate bar, or both. I haven't tried this approach for years- but it may still work, and may work for others. )

 

[workmonkey]

I've been avoiding a neurologist for a while - I stopped seeing my last neurologist after his receptionist/office staff member/? lied to me about calling and mailing me regarding an address change and the fact that he no longer accepted my insurance. My PCP has been prescribing my medication for focal point seizure for the past few years.

I get auras. A few days ago, I had what seemed like amaurosa in my left eye - partial blindness in part of the field of vision that cleared up after a few minutes.

My car was broadsided by a big, heavy, pickup truck two weeks ago. I've had occasional numbness in my left thumb, and occasional numbness in the palm of my right hand. Perhaps there was more damage than I noticed - spinal cord twist? Neurological thing? I hate hospitals, and can't go to one because I have to stay with my wife, but I see my PCP tomorrow and may again get involved with a neurologist.

(I was diagnosed with focal epilepsy about a decade ago, but have had it since around 1993, if not earlier. Medication has so far stopped these episodes, but I still get auras - they probably last 30 minutes or so. At one point, I was able to stop these episodes by drinking coke (caffeine seemed to help) or having a chocolate bar, or both. I haven't tried this approach for years- but it may still work, and may work for others. )

I think the thing I regret the most is never really being honest with my PCP - I'd write things off in the spirit of trying to be tough, or knowing (as you do) that doctor visits can be annoying and a wild goose chase, so I wouldn't bring up anything that might cause more trouble for me ....

All that said, partial blindness and numbness are not things to just write off ... It took a major twenty-minute seizure for me to finally pay attention (if my wife hadn't been present at the time I was told there was a real chance of the seizure causing significant damage) ... So while I fully empathize and understand that it can be a pain in the ass, i'd bring up these symptoms sooner than later, because I've learned there are easy enough fixes neurologists can offer to reduce risk ...

Best of luck and keep us updated!