Migraine aura anyone? Or does the cheese stand alone?

[doclewis]

Just curious if you recall how far past surgery was it where they switched from several times a week down to say every 10 days that you're experiencing now. I'm currently almost 4 months past surgery and they seem to be settling on about once a week. Doing my best to just learn to live with them, which is a great mindfulness practice that I clearly need to continue to work on.

It was very slowly over five years. It was almost exactly one year before I went a whole week without episode.

 

[doclewis]

I'm six years out of surgery, and in the past few years have found a noticeable moderation and reduction of my ocular migraines. They occur less frequently, and when they do occur, it is for less time. Some of it is just gaining awareness of what the triggers are (for me: strenuous exercise, caffeine, and lack of sleep. Anything messing with blood pressure.). The addition of Propranolol to my daily pill intake was a big help as well (it's a beta-blocker commonly prescribed for ocular migraines). And frankly, they stop disrupting you over time, to the point you almost ignore them.

On the theory side, I've recently been reading articles about concussions in sports - specifically, in football and certain winter Olympic sports (like bobsledding). A common thread in these articles is that one of the first, and lingering, symptoms of a concussion is flashing lights, auras, sensory sensitivity, and headaches. This continues for months/years after the concussion. Just yesterday, there was a story about an NFL player held out of the game because of migraines following a previous concussion.

Just a hypothesis here: But being on the bypass machine, temporary lack of blood flow, aortic clamping, and additional traumas put upon your body during the heart surgery process, could result in a soft concussion, or a similar brain injury. I've written about it before, but I woke up from my surgery with massive flashing lights, which continued almost every hour for days after my surgery. When you throw in the fact that those with valve issues, aneurisms, and similar circulatory problems are prime candidates for migraines, the surgery could be a huge trigger.

But because no doctor or surgeon seems to have any interest in researching the connection between heart surgery and migraine severity, we are all left to speculating on our own. There was a period of my life after surgery when the migraines forced a change to my lifestyle, and became one of the most frustrating and disruptive results of my surgery - which is why I've focused on it in these forums. The good news is it does lessen and subside, to the point you almost forget entirely about it. Good luck.

My experience similar. I am five years post op and 75 years old. I have not been as successful as you in eliminating triggers. These mlgraines are still a significant factor in my life. Exercise is definitely a tigger. I walk on the beach five miles. I have had to slow down and walk shorter distance. I avoid walking when it is hot. Still get them sometimes with walking. Also watching my grand children play baseball is one of my favorite past times. I have noticed that watching game through the heavy chain link backstop or fences will bring on migraine, especially sitting in shade and watching when bright sun. Also I do not feel well after getting migraine. Minimal headache, slight nausea, and no energy. This doesn't occur every time but often enough to be a problem. It lasts a day or two, I saw my second neurologist yesterday. He said he was very aware of this problem after heart surgery and even specifically after aortic valve replacement. His point is that migraines are usually hereditary and a life long problem. How they are manifest and how frequent, changes from multiple factors as we age. One factor is obviously heart surgery. They never go away. Something happens during surgery alters how sensitive you are to triggers. Another possible reason for the change is the sudden change in blood flow to the brain after surgery. The neurologist that I saw 4 years ago told me that she had seen this sudden migraine change after carotid artery surgery and that she attributed it to the increased blood flow to the brain. At any rate migraines almost always change throughout your life, but regardless, there is only one migraine disease. Treatment are the same for all of them. He suggested putting me on one of the new monoclonal antibody injectable pens that you use once a month. I think I am going to give it a try.

 

[slipkid]

The #1 thing I wish for when I get a migraine is that visible flames/auras would shoot out of my head looking like a firework display so that people KNOW I have a migraine. At least then I might get some measure of sympathy/understanding/support/backing off of demands at work when I feel like I just want to crawl into a hole with the lights out. Instead it is no rest for the wicked and everything continues to be thrown at me 100 miles an hour with endless crises that I have to deal with, like everything is "normal" (even when it is "normal" my job is usually more than I can bear most days and with a migraine I really tend to lash out at people during their never ending demands on my time)....

 

[Freebird]

My experience similar. I am five years post op and 75 years old. I have not been as successful as you in eliminating triggers. These mlgraines are still a significant factor in my life. Exercise is definitely a tigger. I walk on the beach five miles. I have had to slow down and walk shorter distance. I avoid walking when it is hot. Still get them sometimes with walking. Also watching my grand children play baseball is one of my favorite past times. I have noticed that watching game through the heavy chain link backstop or fences will bring on migraine, especially sitting in shade and watching when bright sun. Also I do not feel well after getting migraine. Minimal headache, slight nausea, and no energy. This doesn't occur every time but often enough to be a problem. It lasts a day or two, I saw my second neurologist yesterday. He said he was very aware of this problem after heart surgery and even specifically after aortic valve replacement. His point is that migraines are usually hereditary and a life long problem. How they are manifest and how frequent, changes from multiple factors as we age. One factor is obviously heart surgery. They never go away. Something happens during surgery alters how sensitive you are to triggers. Another possible reason for the change is the sudden change in blood flow to the brain after surgery. The neurologist that I saw 4 years ago told me that she had seen this sudden migraine change after carotid artery surgery and that she attributed it to the increased blood flow to the brain. At any rate migraines almost always change throughout your life, but regardless, there is only one migraine disease. Treatment are the same for all of them. He suggested putting me on one of the new monoclonal antibody injectable pens that you use once a month. I think I am going to give it a try.

If you go the route of the injectable therapy, please share your results with us. Thanks for sharing the info from your neurologist.

 

[LadyChicken]

Late to the game in replying to this, but the cheese does not stand alone -- I get them too. I've had migraine with aura since I was 10. They started with the blur, then went to headaches and vomiting. The vomiting stopped in my late teens, but the headaches and auras continue.
Google migraine aura and heart disease and everything will click. I had no clue the two were related and neither do most doctors, which really sucks.
The thing I can't seem to get any answer to is why I get more migraines (mostly aura with zero headache) more frequently since having my aortic valve replaced. Truly odd, and my surgeon dismissed the idea that there must be something to this.
Go figure.

 

[Protimenow]

I think I found a trigger (actually, my wife did). I started eating chunky peanut butter SPREAD - the kind with oils and other crap mixed in so it's spreadable. It took hours, sometimes a day or so, but the auras would happen.
I don't think that JUST peanut butter - without the oils that make it spreadable - were associated with auras.

I think that I may be mildly allergic to some peanuts - perhaps a particular variety, or the molds and things that are on the surface - but SOME nuts make it just slightly more difficult to swallow than if I hadn't had the nuts. It hasn't been severe enough to really worry about -- yet.

I usually avoid peanuts JUST IN CASE.

So - again - peanut butter spread may be a delayed trigger for my auras.

 

[slipkid]

I've never been able to find a trigger, other than seems like more than 50% of my migraines start within 30 minutes of waking up. Had two in two days last week, both around start of my day, absolute torture at work but I've grown to prefer having my workday ruined than a day off.

 

[cldlhd]

I've had migraines since I was 10 and they always started off with the little flashing aura and then ended with a headache behind the eye and vomiting. Very frustrating as a kid, especially when you have a step mom who thinks you'e lying and won't help you. Needless to say, migraines are a topic that I don't discuss with people due to some pretty messed up childhood b.s. lol. Fast forward to the age of 34 and I hardly get them anymore. Maybe 1-2 a month and I can cure them quickly if I pop Ibprofen as soon as the aura shows. With that said, I'm a bit frightened that something may have happened during surgery to make things worse No joke, I'm getting these ocular migraines 2-5 times a day since surgery (November 14). I don' eat much at all, so I know it's not triggered by food. In a way I'm hoping I'm the only one as it would make me sad to think anyone else has to go through this, however, on the selfish side, I kinda hope somebody has experienced this too and can assure me that this period of cluster migraines doesn't last long.

Very interesting post to me personally. I've had anywhere from 0 to approximately 3 to 4 migraines a year since I was 12. I would get the visual aura followed by massive headache, nausea, vomiting etc and I would be down and out for the day. After I had my OHS to replace my aortic aneurysm I don't get them anymore but I get the visual migraine aura much more often. Sometimes I'll get it twice in one day, or four or five times a month. Sometimes I don't get it for a couple of months but when I get it it almost always goes away within 15 minutes and I don't get this subsequent migraine. Sometimes I'll get a slight headache or just feel a little blah But that's it.

 

[cldlhd]

After my surgery and I started experiencing this I went to a neurologist at the same hospital where I had the surgery. Interestingly he told me that he sees plenty of patients who go on " the machine" during heart surgery have this problem. Although the cardiac team said they never see it and it has nothing to do with it.... The neurologist basically said my brain was tickled

 

[Superman]

After my surgery and I started experiencing this I went to a neurologist at the same hospital where I had the surgery. Interestingly he told me that he sees plenty of patients who go on " the machine" during heart surgery have this problem. Although the cardiac team said they never see it and it has nothing to do with it.... The neurologist basically said my brain was tickled

The cardiac surgery team never sees it because we talk to neurologists about it.

 

[Amy]

The #1 thing I wish for when I get a migraine is that visible flames/auras would shoot out of my head looking like a firework display so that people KNOW I have a migraine.

Yes! Just saying “I have a migraine,” particularly to people who’ve never experienced one, does nothing whatsoever, does it?

I’ll chime in and say I’ve also had frequent ocular migraines since I was a teenager, with the definite triggers of coffee, alcohol, MSG, most black teas except Assam; letting my neck get cold when my hair’s wet; and since OHS, chocolate. I also have had more migraines than usual since my AVR.

I’ll keep an eye on whether bright light or exercise set them off too - haven’t noticed that. Very interesting to hear all your stories - it’s crazy how many medical unknowns there still are, despite, if nothing else, so many (self-) case studies.

 

[cldlhd]

Yes! Just saying “I have a migraine,” particularly to people who’ve never experienced one, does nothing whatsoever, does it?

I’ll chime in and say I’ve also had frequent ocular migraines since I was a teenager, with the definite triggers of coffee, alcohol, MSG, most black teas except Assam; letting my neck get cold when my hair’s wet; and since OHS, chocolate. I also have had more migraines than usual since my AVR.

I’ll keep an eye on whether bright light or exercise set them off too - haven’t noticed that. Very interesting to hear all your stories - it’s crazy how many medical unknowns there still are, despite, if nothing else, so many (self-) case studies.

I was told coffee and alcohol were triggers but I noticed when I stopped drinking coffee I would get them more. I wasn't willing to not drink at all either But then again I never really got them that often. If I got them a couple days a week then I probably would have stopped I sometimes wonder if they really know what triggers them, they seem the list almost everything.

 

[esvaja]

I think I found a trigger (actually, my wife did). I started eating chunky peanut butter SPREAD - the kind with oils and other crap mixed in so it's spreadable. It took hours, sometimes a day or so, but the auras would happen.
I don't think that JUST peanut butter - without the oils that make it spreadable - were associated with auras.

I think that I may be mildly allergic to some peanuts - perhaps a particular variety, or the molds and things that are on the surface - but SOME nuts make it just slightly more difficult to swallow than if I hadn't had the nuts. It hasn't been severe enough to really worry about -- yet.

I usually avoid peanuts JUST IN CASE.

So - again - peanut butter spread may be a delayed trigger for my auras.

I believe there has been a study (it's not just anecdotal) That people with aortic valve problems most of them have auras, & very rarely with headaches. I've had auras since high school & I still have them. I've been telling people that I meet that complain of auras & have murmurs to ask to have their valves checked out. Also I read an article in WebMD that mentioned if you have small striations in your fingernails that may also indicate a valve problem. I just retired as a tech from a large midwest hospital so I had access to a lot of info, sometimes too much

 

[doclewis]

If you go the route of the injectable therapy, please share your results with us. Thanks for sharing the info from your neurologist.

I did try the monoclonal antibody treatment Emgality. I have had the injection for five months now. The frequency of my migraines has actually increased over these five months. However, I must say that the annoying symptoms I had after many of the episodes have not been a problem. Neurologist suggested continuing with the injections thinking that this improvement probably related to the medication. I am not as convinced. I will continue for a year and then may stop. Copay of 75 dollars a month for a month. Before injections, I frequently did not feel well for a day. Slight headache a little nauseous and no energy. Without these symptoms, I have not let the frequent auras interfere with my life. Used to lie down and close my eyes if possible when I got an aura. Now just keep doing what I am doing. Auras also don't seem quite as dramatic and may not last as long. Certainly no less frequent.

 

[esvaja]

I believe there has been a study (it's not just anecdotal) That people with aortic valve problems most of them have auras, & very rarely with headaches. I've had auras since high school & I still have them. I've been telling people that I meet that complain of auras & have murmurs to ask to have their valves checked out. Also I read an article in WebMD that mentioned if you have small striations in your fingernails that may also indicate a valve problem. I just retired as a tech from a large midwest hospital so I had access to a lot of info, sometimes too much

opthy tech.

 

[Amy]

Found this in a book called Power to the Patient:

 

[slipkid]

That migraine trigger list left out breathing, sleeping, & simply waking up. All of those seem like my triggers!

 

[Amy]

You know, you’re right... I’ve woken up mid-aura a few times this week already - it’s not fun. I sometimes associate that with my neck having been in a weird position for too long, or my neck getting cold, but I don’t know for sure.

 

[slipkid]

I've probably already said in this thread but I even get migraines (auras) WHILE I am sleeping. I know because sometimes my conscious mind sees them and tells the dreamstate me something like "godammit, look at that shimmering ****, yer getting a migraine!!", then I slowly come back to waking state and see it. Then I just think so what? Better to sleep it off and I go back to sleep...

 

[SteinBizzle]

As a newb to this forum, this was an odd, surprise finding. I've been having an ocular migraines for as long as I've been diagnosed with my TAA. Starts off as some unfocused light diffraction on the periphery that slowly turns into unfocused sparkling halo's, making it difficult to read as it washes away my ability to focus my vision. The halo's seem to travel from one side of my vision to the other where they eventually dissipate and leave me a (not terrible) temple headache. I never considered that the taa and migraines could be related.