Migraine aura anyone? Or does the cheese stand alone?

[ZachL]

I started using a CBD tincture about 8 weeks ago looking for solutions to try and minimize or reduce the number of migraines I get. So far these 8 weeks are the longest I have gone in the almost 2 years since my OHS. Highly recommend trying it, but do your research on companies. Being a non regulated substance by the FDA there are some junk companies out there trying to just make a quick buck.

 

[Protimenow]

A spoonful of peanut butter? Does this extra little bit of protein and sugar actually help to prevent the auras? Will this help get rid of auras more quickly once they start? (I'm not being facetious - just curious). If it helps, I can grab something to eat - maybe even a spoonful of peanut butter as soon as I wake up and use it to chase the aura demons away.

---

One obvious thing that I don't think others have asked -- part of the title of this thread 'or does the cheese stand alone?' has intrigued me -- 'the cheese'? Why do they call 'the cheese' 'the cheese'?

 

[Protimenow]

I started using a CBD tincture about 8 weeks ago looking for solutions to try and minimize or reduce the number of migraines I get. So far these 8 weeks are the longest I have gone in the almost 2 years since my OHS. Highly recommend trying it, but do your research on companies. Being a non regulated substance by the FDA there are some junk companies out there trying to just make a quick buck.

CBD tincture? Is this something you put on some part of your body? Is this something that you put into liquid and drink?

I have a friend who provides a service to a manufacturer or distributor of industrial oils, and he claims that his customer sells barrels of CBD oil. I don't know if it's true, but, possibly, the CBD oil is pretty inexpensive and is being marketed by companies making tremendous amounts of profit on it.

Yes, you probably have to be pretty careful which preparation you buy - to be sure that it's pure, and unadulterated (except by the stuff that is intentionally added to it by the manufacturer).

 

[Catie]

Ummm. Protimenow, I confess to eating more than a little spoonful of peanut butter when I'm on the run. It might be more like a heaping gob of PB. But in my case, absolutely. I can tell when I've waited too long and my energy is starting to wane. If I'll quickly respond to that cue with a nutty dose, or heck, just eat something, I can pretty reliably stave off the aura. Whereas if I press on and don't munch at that point, one is quite likely to crank up.

I'm not as certain of food turning off the aura.

 

[Catie]

Oh! And the cheese is the last item in a long sequence that comprises "The Farmer in the Dell" lyrics. I guess they had to end the song some way. Methinks if the cheese performed an action, as all the other characters did, the song would continue on.

 

[Protimenow]

Aah -- I didn't think of The Farmer in the Dell. The association to a song that I last heard decades ago, and possibly heard it all the way through just a few times, completely eluded me. I won't even try to consider what this has to do with auras (other than an association to an old song that I'd forgotten).

I may have to remind myself to eat when I'm extremely empty, to avoid auras. And I'll keep a jar of peanut butter around, just in case. I may even make a sealed box, with a glass front, and a few spoonsful of peanut butter, with a small hammer and a sign that reads: 'To prevent auras, break glass'.

If being empty (as I frequently am) triggers migraine auras, you've done a lot of us a great service by providing a way to avoid them (and giving us a reason to eat when we're empty). And I'm not kidding here.

 

[doclewis]

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 have posted on this thread several times before and return here occasionally to see what others are saying. I was struck by the similarity of our stories. Migraines since puberty always with aura. In thirties changed to ocular migraines with only aura. Occurred only maybe every two months and didn't pay much attention to them. Saw neurologist in my twenties but never went back. I was diagnosed at age 17 by a cardiologist before echocardiograms or ct scans or mri's were even invented. Told I might need a new valve in my 50's but this didn't happen and I never saw cardiologist again. I am a retired physician. I am 75 years old. After retirement I had a physical and sent for echocardiogram. Diagnosed as bicuspid valve and dilated ascending aorta. Had echo and CT yearly. later had them every 6 months then finally in three months. 4 years ago I had open surgery with replacement of aortic valve with cow valve and repair of the aneurysm. Did amazingly well especially for a 70 year old. Only problem has been the ocular migraines. Occurred two or three times a week at first and gradually got a little better. Was 1 year before I went a week without one. For two years I have recorded every episode and what I was doing and what time of day etc. Tried many dietary manipulations and other things but have found no remedy. Don't feel real well for a day after which I guess is "brain fog". I have searched every way I know for an explanation. On line this is the only site which I can find any info on the subject. Discussed with cardiologist, heart surgeon, neurologist and pcp, but all say they have never heard of this. I admit that I never thought of connection between underlying valve problem and migraines. Now have these aura's about every ten days. Longest time I have gone is 30 days and still have them two days in a row on occasion. I am resigned to having them and as I get older I am thankful that this is the worst thing I have to be concerned about.

 

[Catie]

My pleasure--happy to chat. We're all wired differently--the original poster LadyChicken, who thought she might be the only one struggling with ocular migraines, said she doesn't have food triggers.

I remember seeing various mentions of the skipped meals and migraine association in the past. Here are three that came up quickly with a googling.

American Migraine Foundation states, "Migraine sufferers often note that missing meals can trigger headache. Long periods of time between meals may trigger migraine attacks, or cause headache to be more severe because of low blood glucose levels. The risk of developing a headache increases with the amount of time between meals. Migraine patients should make time for small frequent meals. Regular daily meal times, in addition to regular sleep schedules and exercise, are associated with less frequent migraines." https://americanmigrainefoundation.org/resource-library/migraine-and-diet/

And there's this, from a PubMed piece titled, Nighttime snacking, stress, and migraine activity. "Among the putative “triggers” of migraine and tension-type headache (TTH) attacks, missing meals/fasting is frequently endorsed in self-report studies among adults.1,2 Though estimates vary from 39–82% across most studies,2,3,4,5 the largest recent study on 1207 migraineurs with and without aura, found that not eating was a headache precipitant for 57% of patients, ranking it alongside stress, hormonal fluctuations (among women), and sleep disturbance as the most common and consistent migraine triggers.6" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959563/

A quote from The Migraine Trust's website. Their context is discussing hypoglycemia, but still... "Fasting, eating high-sugar foods, dieting too rigorously, and skipping meals can all trigger, or make people more likely to have a headache or migraine. Even delayed or irregular meals can make a difference. This is usually due to people’s blood-glucose levels falling too low." https://www.migrainetrust.org/about-migraine/trigger-factors/hypoglycaemia/

 

[Catie]

Doclewis, you've been most diligent to seek out the source of your episodes. I wish something definite had come to light. I'm sorry they bring on a day of feeling crummy and that they happen frequently.

 

[workmonkey]

Only problem has been the ocular migraines. Occurred two or three times a week at first and gradually got a little better. Was 1 year before I went a week without one. For two years I have recorded every episode and what I was doing and what time of day etc. Tried many dietary manipulations and other things but have found no remedy. Don't feel real well for a day after which I guess is "brain fog". I have searched every way I know for an explanation. On line this is the only site which I can find any info on the subject. Discussed with cardiologist, heart surgeon, neurologist and pcp, but all say they have never heard of this. I admit that I never thought of connection between underlying valve problem and migraines. Now have these aura's about every ten days. Longest time I have gone is 30 days and still have them two days in a row on occasion. I am resigned to having them and as I get older I am thankful that this is the worst thing I have to be concerned about.

When we all talk about triggers, it seems the biggest trigger is heart surgery itself. I remember waking up from my surgery with a massive occular migraine. At the time, it occurred to me how odd it was that under all of the anesthesia, blood pressure control, pain medication, etc., that I could possibly be getting a migraine. They continued as daily experience during my time in the hospital. As with all others here, I had occasionally experienced in my youth, but only once or twice a year almost always under periods of stress. From the moment of my surgery, it all changed: They became much more frequent, and grew in scope. Whereas before surgery, I had only ever experienced flashing lights; after surgery, they began to cause double vision, tingling extremities on one half of my body, deja vu, dreamlike states, and other odd brain issues. Perhaps the most frustrating change was that they began to be caused by "good" behavior - Exercise always causes one, as does eating too little.

We don't need medical research to tell us there is a link between bicuspids and predilection for visual migraines - this forum is data in itself. Likewise, it's obvious heart surgery changes the nature and intensity of the migraines. The medical community may not be interested the link, but that doesn't make it any less relevant. As doclewis and others remind us, it is an annoyance more than a threat, and it could well be worse. Acceptance makes them easier to handle.

 

[Protimenow]

Workmonkey : In my case, I don't recall the frequency of ocular migraines changing after surgery. Although others have noted an increase in frequency - or having them start after surgery - I'm not sure that heart surgery is 'the biggest trigger.' In fact, when we talk about triggers, I think about whatever causes an incident to occur (bright lights, perhaps lack of food, or whatever causes them to happen) - not a broader 'surgery' explanation.

Sure, it's convenient (and probably very accurate for many of us) to say that having had heart surgery makes them happen more than previously, or to happen at all in people who haven't experienced them before, but as far as triggers are concerned, it would be great to know what triggers these things and to perhaps avoid them so they don't happen as often.

Some of the things that you've listed may be a result of post-op medications, rather than a direct result of the surgeries. (In my case, some numbness and loss of vision in one eye was related to taking Zyrtec - when I stopped taking Zyrtec, the numbness and visual issue stopped. I know of three others who have had the same reaction to Zyrtec).

 

[doclewis]

As someone else has said previously on this site. Something that happens to ones brain at surgery causes it to be more sensitive to triggers. Since we really don't know what causes migraines it is hard to say what happens. Seems there must be some spot or spots in the brain that cause the "wave of polarization or repolarization" seen on eeg before migraines. Don't know much about subject but seems similar to a seizure. I thought that exercise was my trigger as I noted that most occurred with exercise. So, I quit exercising just walking slowly for a mile or two daily. Frequency did not decrease just had them at other times. Now back to exercising with no increase. As a youngster and immediately after surgery I would also have other symptoms with the visual aura, primarily numbness of one hand and one side of my face. Did not occur regularly after surgery but occasionally. This has gotten better in that I have not had this in two or three years. Other factors associated with exercise such as bright lights and dehydration (I would walk fast for five miles or ride a bike on the beach) did not pan out either. Wore sunglasses, tool water. and was careful not to look directly at the water or sun.

 

[ZachL]

CBD tincture? Is this something you put on some part of your body? Is this something that you put into liquid and drink?

I have a friend who provides a service to a manufacturer or distributor of industrial oils, and he claims that his customer sells barrels of CBD oil. I don't know if it's true, but, possibly, the CBD oil is pretty inexpensive and is being marketed by companies making tremendous amounts of profit on it.

Yes, you probably have to be pretty careful which preparation you buy - to be sure that it's pure, and unadulterated (except by the stuff that is intentionally added to it by the manufacturer).

CBD tincture is CBD oil that I take orally with a dropper, but can be used mixed in things. I take 1 ml in the morning and in the evening when I take my other pills. I take it by dropping it under my tongue and holding it for 30 sec to a min before swallowing. There are many different versions (pills, tincture, gummies etc) of all different strengths. I believe some people also put it in a drink, like coffee or tea, but in my research I have found that your body could possibly digest/ break down the CBD before you actually absorb the helpful properties of the CBD, thus rendering it useless.

I found the company CBDMD has a THC free CBD oil tincture. For personal preference and employment reasons I do not want THC. Many CBD oil products have THC in them so you just have to be aware.

 

[Protimenow]

In the United States, you have to live in an area where ANY THC is legal. If you want CBD with THC, you'll probably have to go to a marijuana dispensary to buy it.

Thus, most (if not all) over the counter CBD preparations won't have any THC.

 

[Agian]

A marijuana dispensary LOL.
Every neighborhood has one.

 

[Protimenow]

If you were in states where it's legal, every neighborhood WOULD have at least one.

There are probably a half dozen within two or three miles from me (but I live near a University, so this may explain it).

Marijuana, within certain limits, is legal in California.

(I haven't tried, but I suspect that it's AWFULLY DAMNED DIFFICULT to get seeds)

 

[tom in MO]

On the TV show Cops, they have shown CA homes where the owners have legal back yard pot gardens.

 

[Protimenow]

Actually, it's legal to grow one plant (I think this is the limit), but I doubt that law enforcement would spend its time arresting Californias who grow more for recreational purposes (and maybe, although they don't admit it) sales or gifts to friends.

And, of course, they're not growing the plants for marijuana - they use the hemp fibers to make ropes.

 

[Agian]

Many moons ago I got an angry phone call to complain about 'your friend'. The dude gave his girlfriend a bag of marijuana for Valentine's Day. She was not amused... but I was.

 

[Protimenow]

A friend's daughter visited from out of town, and rented a car. She found some packages of marijuana in the glove box. Apparently, either the rental agency didn't clean the car out well enough, or the employee stashed it in the car, expecting that it wouldn't get rented before he could go back and retrieve it.

I don't know what happened to the marijuana that was in the car.