Migraine aura anyone? Or does the cheese stand alone?

[ZachL]

follow up on my ocular migraines. 4 years post op. Initially averaged about one every day or two. Now down to one every eight or nine days. I do not feel well for a day afterwards. I guess the brain fog thing. I have tried many dietary manipulations (eliminating alcohol, wine, nuts, cheese, artificial sweetners). Initially I was convinced that exercise caused them. Most were occurring with exercise. I have kept a log for 16 months. Quit exercising 5 or six months ago. Still walk or ride a bike most days but slowly and not nearly as far as I was and I don't time it any more. The four months that I have logs for before and after stopping exercise I find that the frequency has not changed. Still get about half while I am outside walking, biking. I live in Florida so it is hot and usually sunny. Some occur when I first start walking and some a few minutes after I get back. Sunglasses don't help and taking water and drinking while outside does not help. In the past when I was walking five sub 15 minute miles, I found that if I continued walking in spite of migraine that I would get a second one either before I finished or immediately after. Still looking for something I can do to decrease frequency. I am interested if anyone has found a trigger that helps. Others have said that beta blockers have helped, but I have been on beta blocker continuously since before surgery. I think that I may start exercising more aggressively again to see if they get worse.

Like you, initially after my AVR, I started having migraines every few days, which slowly became about once every week or 2 and stayed like that for about a year. I started going to a chiropractor that does not do "major adjustments" like others I have been to over the years. She mainly focuses on stretching and loosening the muscles in my spine and neck. I started going to the chiropractor ever 2-3 weeks and went 12 weeks without a migraine until about 5 weeks ago unfortunately. I have had 1 migraine a week for the past 5 weeks and it has been brutal. I know that is not much help, but might be worth a shot to try and find a reputable chiropractor or even get a back/ neck massage which has seemed to help lower the frequency of my migraines.

 

[Protimenow]

I've been getting the auras since I was 16 years old. The painful migraines for me, fortunately, are extremely rare.

For me, bright light seems to trigger them. I sometimes think that eating certain foods may trigger them - but I can repeat with the same foods and have no problem. Sometimes a chocolate bar helps turn the auras off. Sometimes, it has no effect. Sometimes coffee can help turn it off (and maybe a high caffeine drink will do the same for you.)

I'm hope that your migraines stop completely or, if not a complete stop, that they morph into the much better tolerated (and often painless) migraine auras that MANY of us get.

 

[ZachL]

I've been getting the auras since I was 16 years old. The painful migraines for me, fortunately, are extremely rare.

For me, bright light seems to trigger them. I sometimes think that eating certain foods may trigger them - but I can repeat with the same foods and have no problem. Sometimes a chocolate bar helps turn the auras off. Sometimes, it has no effect. Sometimes coffee can help turn it off (and maybe a high caffeine drink will do the same for you.)

I'm hope that your migraines stop completely or, if not a complete stop, that they morph into the much better tolerated (and often painless) migraine auras that MANY of us get.

I have never heard of having chocolate when the auras arrive to help prevent the headache/ migraine that follows for me. Usually I try to take Tylenol and drink some coffee quickly. Or if I have one available sometimes a small high caffeine drink helps and prevents the headaches from getting terrible after the auras. Unfortunately I work in an office and my job depends on computer work and my partial vision loss/ auras make it to where I can't even track the courser on the screen. If...... WHEN the auras arrive I try and take Tylenol, drink some caffeine and cut out all light until the auras is gone and my vision is back. If I do all that fast enough the migraine will only be painful for 1-2 hours, but I will have "brain fog" for 1-2 days. Recently I have started tracking my blood pressure very closely in hopes of figuring out if my blood pressure is low or high when the migraines hit and see if there is any correlation. Its all a guessing game and slowly but surely I am figuring out ways to deal with it. I will have to try chocolate next time to see if that helps at all.

 

[Protimenow]

I think Dark chocolate may be slightly more effective than milk chocolate (I don't remember which worked best, and they weren't always effective). It can't hurt...

I think you meant 'cursor.'

When I used to drink canned drinks, I found that Diet Coke and a few pieces of chocolate seemed to turn the auras off.

I work at the computer a LOT, and sometimes when the auras hit, it's hard to read the screen. I can sometimes accommodate to it by looking slightly away from the text I want to see - sometimes it moves into another position in the field of vision where it's 'sort of' readable.

But, as with others, avoiding bright lights DOES help - sometimes, for me, it reduces the time that I'm having the aura from a half an hour all the way down to 30 minutes. (Avoiding bright light during the aura seems to reduce the annoyance or disruption - bright lights are not good when you're having an aura -- as anyone who has had these more than once can tell you). I've never found that Tylenol did anything for me.

 

[Astro]

I already get at least one migraine with aura per week. The idea of increased frequency is an aspect of my booked surgery that I am not looking forward to.

 

[AZ Don]

I get the ocular migraine/aura ever since my OHS 6 years ago. But they are not accompanied nor followed by headache, last only 15-20 minutes and are just a distraction. They tend to be triggered by light or if I get overheated during exercise.

My daughter gets classic migraine aura followed by migraines. The best recommendation we got from the neurologist was to take vitamin B2 (Riboflavin). It is one of the most effective preventions for migraine (google it). My daughter doesn't always take it but I do and I get way less headaches. Not sure that it has any effect on the aura's, I still get them from time to time.

 

[harrietW]

I started getting them after my first OHS terribly. I am now 8 wks post my second surgery 3.5 yrs later and they are ever so present. Frustrated !! I have had vision problems also that become increasingly worse.

 

[Astro]

I started getting them after my first OHS terribly. I am now 8 wks post my second surgery 3.5 yrs later and they are ever so present. Frustrated !! I have had vision problems also that become increasingly worse.

Good luck with the migraines. Hope you are gathering strength after your ordeal.

 

[Astro]

I started getting them after my first OHS terribly. I am now 8 wks post my second surgery 3.5 yrs later and they are ever so present. Frustrated !! I have had vision problems also that become increasingly worse.

Good luck with the migraines. Hope you are gathering strength after your ordeal.

Sorry about the double message. Can’t see how to delete. Anyway, best wishes

 

[harrietW]

Astro
Thank you !
Hopefully one day some of these symptoms will disappear.
I will keep it posted.

 

[MrsBray]

I may have previously chimed in on this. Anyway.... I started having aura migraines around age 20 (before diagnosis) and chalked them up to college life - heavy drinking, copious caffeine, and little sleep. They continued, along with dizzy spells, and I just went along with them. Primary doc didn't seem concerned, optometrist didn't seem concerned. the got progressively worse, triggered by bright flashes of light (usually sunlight glinting off windshields or chrome). I was up to 4-6/month pre-op at age 42. Post op for 5 years, I have less than 1/month, probably less than 6/year.

Caffeine/darkness/quiet makes mine go away, it's not painful, and the brain-fog lingers for a day-ish. Naps help

 

[Protimenow]

MrsBray -- yours sound a lot like mine. I had my first migraine (with the aura) when I was 16 years old, a doorman at a movie theater, taking tickets for a Saturday Matinee, or early evening shows. The reflection of the sun off of cars driving past the theater started my first migraine. After a few years, these changed to auras, most often not accompanied by pain.

Bright lights are often triggers - or, at least, if I can't avoid bright lights, they seem to make the auras worse.
And, yes, caffeine, darkness, (maybe quiet?) make these more tolerable, but I don't think that, in my case, they helped them to go away. Occasionally (rarely) caffeine or chocolate may turn the thing off, just like flicking a switch, but these don't seem to be helping much. I haven't recorded the frequency of these things - it seems like they're coming a bit more frequently than they used to.

 

[Solar Rays]

Update on my experience with auras. I was told to take B2 and magnesium and feverfew by a neurologist. I cant take the feverfew due to coumidan. I posted awhile back that Ive had a huge increase in the auras since mitral valve repair probably from the heart lung machine. Drs. dont seem concerned. Ive had approx. 60 since Oct 2018. Sun glare and fluorescent lights are triggers. Has anyone had experience with anything that helps? What about antireflective eyeglasses? Thank you.

 

[Protimenow]

I take magnesium -- 200 mg of a mixed source (citrate, oxide, and another form) that I get from Trader Joe's. Sometimes I take 200 twice a day - too much gives me digestive issues.

I don't intentionally take B2.

Sometimes something caffeinated helps, sometimes chocolate helps. In the past, when I was drinking Pepsi (I think that it was only Pepsi that helped), one sip will turn the damned auras off. I haven't had anything carbonated, aside from filtered water, in years.

The only thing that consistently stopped the auras was TIME -- after about 30 minutes or so, they usually fade away.

 

[doclewis]

I have posted on this thread several times so this is follow up. As several others I started with severe migraines with aura at about age 14. Morphed in to ocular migraines at about age 25. Had them about every 3 to six months. Were not much more than a nuisance. Lasted every only 20 minutes. Sometimes on right and sometimes on left of visual field. Certainly in central nervous system since they were in both eyes. Post op (AVR and ascending aorta repair 4 years ago) } began getting them daily to every other day. Gradually got a little less frequent. Now about every 8 days on average. Many dietary manipulations without success. Logged when they occurred for a year. Thought due to exercise. Quit exercising completely. Before that about 75% occurred during exercise or immediately after. However when I stopped exercising have not changed frequency just get them first thing in the morning or even at night. Just had one this AM when I turned on computer. I really dont feel myself for a day or so after (i guess brain fog). May start back on my exercise program. Was walking five sub 15 minute miles before. Will try the B2 and magnesium tablets as suggested. Have about decided to just live with it and be thankful that it is not worse. I have discussed with neurologist, surgeon, cardiologist, and PCP and nobody has ever heard of this.

 

[lilyofthewest]

I'm so sorry and commiserate with those who are getting these so frequently. Thankfully mine have reduced to only occasionally, though I had one today. I just don't understand why so many doctors, including my cardiologist, refuse to recognize this after affect of the surgery.

 

[Malleus]

I'm just about 4 months post-op (OHS, AVR), and the frequency of my visual auras has decreased substantially since the enormous spike right after surgery. Prior to surgery, while on metoprolol for about 3 years, I had around 1 / 3 months. Immediately following surgery (and interestingly, immediately following my pre-op catheterization test) I had multiple episodes of auras per day. They decreased in frequency over the weeks, and now I have one every couple weeks or so. I just had two back-to-back this morning though. Thankfully (and weirdly) I no longer get the brain fog / slurred speech that I'd get after an episode pre-surgery. This suggests to me some connection between these migraines and brain vascular perfusion. I'm grateful that my body seems to be getting used to the change!

My sincere empathy for those who share this malady and especially those who have it worse than I do. Good luck!

 

[Protimenow]

Malleus - I'm glad you mentioned brain fog, slurred speech. The speech issue is one that I haven't seen mentioned. I occasionally get that - for me, it's not really slurred speech - I want to say a word, and something else comes out of my mouth. Sometimes slowing my speech helps. Sometimes it doesn't. Extreme episodes seem to include this speech issue.

I can tell my wife when I get the aura. She understands. But, when I start with word soup, it's an even more recognizable symptom of these things. It scares her.

As all of us who get these symptoms have learned, or will learn if they haven't experienced these before, these things are, fortunately, temporary. Give them some time to resolve, relax (if you can), and you'll back to normal 'soon.'

 

[ZachL]

I now have a close relationship with my local hospital that just overhauled their cardiology department and I will be bringing this to the new cardio-thoracic surgeons attention to see if he has knowledge of this seemingly common side effect, and if not maybe start doing a study on it.

 

[workmonkey]

As I approach my six-year anniversary, it's interesting to note that the only lasting side effect of the surgery has been the vision troubles. I've generally returned to the same physical shape I was in before, the scar has faded into irrelevance, I rarely think about my heart outside of my cardiology check-ups (I was a repair, so no blood thinners or mechanical noises). But all these years later, I still get flashing lights EVERY time I exercise. Even when not exercise, anything that might raise blood pressure (bike rides, climbing stairs, playing with my kids, etc) will result in some sort of visual distortion: double vision, compressed sight lines, vertigo. Bright lights and sunshine are a secondary trigger. If not vision trouble, it manifests as what I can only describe as intense bouts of deja vu or dreamlike states: i've had dreams and old memories replay in my consciousness as if I was watching a TV show. It used to freak me out the first few years, but now I've realized it is no threat, and will always pass.

I mentioned in a previous chain that Propranolol has helped mitigate the frequency and power of the episodes, although it has not altogether cured them. It is just something I've wrapped into my daily life experience.

It's not that doctors dismiss the connection between the surgery and the vision troubles, it's just that they don't really care. As long as the heart is OK, everything else seems unimportant to them. But I am surprised and annoyed that the medical community has never looked into this more deeply, as there is such an obvious connection between the bypass machine, Versed (and other anesthesia drugs) and vision troubles. Over time, I stopped even asking doctors about it. They just didn't have answers, and weren't interested in finding them.

Regardless, we have this community, which remains as important to me as the day I first learned (out of the blue) I had an aortic aneurism, a bicuspid valve and needed immediate surgery. The visual migraines are a small price to pay, I suppose. If we keep supporting each other and sharing information, eventually we'll figure it out together.