As I sit here writing, I perceive a scintillating band of zig-zags in the shape of a reverse C on the left side of my visual field. I sense the scintillating reverse C with either, or both eyes closed, and I first noted it when the letters in the New Yorker article I was reading became obscured by the C. Attempts to focus on the crescent are futile: it moves as I move my eyes or head. Within its body are vague browns, blacks and whites, and overall it is reminiscent of an Egyptian or Art Deco piece of art.
I have a friend in Brooklyn, a flaneur, and one in Florida, a raconteur; I have now become a migraineur: one who suffers from migraine headaches or, in my case, the visual or tactile hallucinations known as migraine aura that precede the headaches.
I go to my bookshelf and find Oliver Sacks’ book “Migraine: Understanding a Common Disorder, which I purchased long ago when I was not a migraineur (primarily to complete my collection of Sacks’ unique and brilliant writing). On page 62, figure 2b, I find a drawing which closely approximates what I’m “seeing.”
I had asked Siri to start the timer on my Apple watch when I first noticed the visual disturbance, and now note that at 16 minutes 32 seconds, my vision was back to normal. At 25 minutes 16 seconds, I experienced a very subtle ache in my left frontal region which persisted for 5 minutes.
I have observed patients with severe migraine headaches: suffering from nausea, intense pain, photosensitivity and requiring dark and sleep and powerful analgesics to cause remission. I am fortunate because my after-aura headaches, if any, are minimal and brief.
The first time I experienced the visual hallucination was five years ago. I was not blogging then, but made a detailed note of the experience, complete with paranoid rumination on brain testing and side effects of MRIs. What follows is the transcript with the comments of the present day skeptical cardiologist in green or red.
“I had a crazy day Thursday. I gave a talk to the echo lab from 7 to 8 AM and then rushed over to the hospital to see the most urgent of the 9 inpatients I had. I had seen 4 patients by the time I got paged to see my first patient in the office. I headed over there and saw 6 patients . Then I hurried back to the hospital to grab the EKGs I was supposed to read that day. I was a little stressed because I needed to read these and try to see more of my inpatients before heading over to the outpatient testing facility which I had to be at by 1230 to supervise stress testing. I sat down in my hospital office and started reading the EKGs. After I had read a few, I became aware of a defect on the left side of my vision. It felt like when you have looked at a bright light and it leaves a residual on your retina.
At first I thought it was due to the fact that i was reading the EKGs with only the desk lamp on my left on. I turned on the overhead light and it didn’t help. I then realized that I had a hockey puck shaped defect in my left visual field in both eyes. When the defect covered key portions of the EKG, I couldn’t read it. It was filled with a jagged, prism like filling. Otherwise I felt fine. My first thought was that I was having a scintillating scotoma and that this was a migraine aura. Other things seemed much less likely-TIA for example. I called Dr S, my favorite neurologist, on his cell phone and told him what was going on. He suggested I visit him in his office right then. His office was in 400 East which would necessitate a right turn from my office. Instead, I took a left turn down to the West office building, took the elevator up to the fourth floor and finally realized my mistake when all I could find were office numbers that ended in W. (At the time young Dr. P felt this disorientation was related to the aura but perhaps it was due to distraction) By the time I reached his office twenty minutes after the visual symptoms started, they had resolved.
Dr. S did a neuro exam and history, and concluded that I most likely had a migraine aura but thought that I should get an MRI to be certain there was no structural brain disease. After I left his office I began feeling slightly nauseated with a slight headache. Over the next two hours the headache became a moderate frontal headache associated with a sense of fatigue.
I got the MRI yesterday and Dr. S thinks it is normal, although the radiologist read it as showing small subcortical defects which could be consistent with “chronic migraine, small vessel disease, or demyelinating process.”
I almost didn’t get the MRI. This is one of the classic situations in medicine where the history and physical alone makes the diagnosis with near certainty (young Dr. P is correct, see what Choosing Wisely says here), but because a very small number of cases might have something more serious (a brain tumor or vascular lesion in this case ), (perhaps also fueled by medical legal concerns and patient’s love of fancy tests) an expensive imaging test is ordered.
If you took 1000 people with my symptoms and the normal neuro exam with low atherosclerotic risk factors, and did brain MRIs on them, the vast majority of findings would be incidental, probably false positives (I believe young Dr. P made up this statistic but the national migraine center in the UK says :
“The main problem with MRI scans is ‘looking for a shilling and finding a sixpence,’ in finding abnormalities that are unrelated to headache, entirely by chance. The risk of a minor abnormality of no medical significance is 1 in 4. The risk of a chance abnormality that might need treatment is about 1 in 40. Once these ‘incidentalomas’ have been found, the patient may then find it difficult to obtain insurance (for example travel) and there is often a temptation to repeat the scan time and time again to check that the ‘incidentaloma’ is not changing..)
False positives lead to unnecessary anxiety in patients and in some cases unnecessary testing (Dr. S told me that he sees tons of patients who have had normal MRIs with readings similar to mine who are convinced they have MS) (MS=multiple sclerosis, a demyelinating process. Although my MRI was read as having abnormalities possibly due to a “demyelinating process” I must not have had one because 6 years later I have had no other symptoms)) and in some cases unnecessary additional testing.
As I was lying in the MRI gantry listening to the “ratatat “of the scanner, I wondered if we really know the consequences of rearranging the molecules of brain tissue with giant magnetic fields.
Dr. S had ordered the MRI with gadolinium. I recalled seeing adds from law firms seeking “victims” of MRI scans (one man was awarded 5 million dollars after developing nephrogenic systemic fibrosis after one dose of gadolinium (NSF). I knew that gadolinium had been linked to some really serious disorders. The tech had said nothing to me about adverse effects of the “dye” she would be using. My nose began itching like crazy, then my left eyelid. I couldn’t scratch until I emerged from the scanner. After the initial images were done and I was brought out of the scanner, I scratched my face like crazy and asked the tech if there were any side effects from gadolinium.
“Why yes, she said, you can have severe allergic reactions,” but we’ve only had a couple.” Also, she said, there is some disorder… she couldn’t remember the name or what it did but knew that it was only a problem if you had kidney failure or had diabetes and were over the age of 60.
As I was lying in the scanner after receiving the gadolinium, I began trying to estimate what risk I would be willing to assume in this situation. The disease you can get if you have severely impaired kidney function and receive gadolinium is nephrogenic systemic fibrosis.
Would I accept a 1 in 1/1000 chance of NSF in exchange for diagnosing something other than migraine 1/1000 times? I couldn’t and can’t easily and logically make that call. I have no idea how patients can make these decisions.
Here’s a video of an aura similar to mine (one of many posted at visual migraine animation)
Migraine experiences have served as a major source of artistic inspiration in both past and contemporary painters, sculptors, film-makers and other visual artists. Check some of their work out at migraine aura foundation.
21 thoughts on “Paranoid Rumination From A Freshly-Minted Migraineur”
Jeffrey Patten: After over 35 years experience as a migraine, I know all the triggers. Stress was the trigger of my first migraine at age 18. I did not have another migraine for 9 years. Then I had my first of many monthly migraines starting at age 27.
Grammar mistake correction in first sentence: migraine sufferer, …
I thought you might find this interesting: I had never had aural migraines before I was pregnant with my first child. Later in my first pregnancy I had two or three: the vibrating crystal “C” that was all nice and rainbowy, but made it hard to read or work until it passed. It started in the center of my vision, then expanded until it disappeared at the periphery. Then as soon as I delivered, I didn’t have them any more. My next pregnancy was with twins, and the aural migraines came back and were far more frequent, and again ceased as soon as I delivered. Luckily there was never an actual headache involved, but I started to worry I’d get one while driving. Do you think this could have to do with the increase in blood volume during pregnancy creating more pressure on the blood vessels that are involved in migraines?
Thanks for sharing your story. I don’t think the migraines your experienced during pregnancy would be directly related to increased blood volume.
The “vascular hypothesis” you are referencing and which I was taught in medical school has been discredited.
Fluctuating hormones, specifically serotonin and estrogen are now thought to be playing a role. Clearly pregnancy is a major cause of fluctuating hormones. From the John Hopkins page on migraines:
Today, it is widely understood that chemical compounds and hormones, such as serotonin and estrogen, often play a role in pain sensitivity for migraine sufferers.
One aspect of migraine pain theory explains that migraine pain happens due to waves of activity by groups of excitable brain cells. These trigger chemicals, such as serotonin, to narrow blood vessels. Serotonin is a chemical necessary for communication between nerve cells. It can cause narrowing of blood vessels throughout the body.
When serotonin or estrogen levels change, the result for some is a migraine. Serotonin levels may affect both sexes, while fluctuating estrogen levels affect women only.
For women, estrogen levels naturally vary over the life cycle, with increases during fertile years and decreases afterwards. Women of childbearing age also experience monthly changes in estrogen levels. Migraines in women are often associated with these fluctuating hormone levels and may explain why women are more likely to have migraines than men.
Some research suggests that when estrogen levels rise and then fall, contractions in blood vessels may be set off. This leads to throbbing pain. Other data suggest that lower levels of estrogen make facial and scalp nerves more sensitive to pain.
I figured that out myself (the estrogen connection) when I began to have recurring migraines (I was a computer programmer at the time). This was prior to the Internet in the early 1980s. The pattern was obvious to someone who was working in a pattern recognition field.
I have HRHS. I have these or something akin to it, except it takes up most of my field of vision, can last all day, and there’s no pain. It may be in one eye or both. A dr suggested I take a baby aspirin when it happens and surprisingly it works.
Dear son. I have had zig-zag flashes for many years now. Mine are not associated with pain or discomfort. They usually last about 20 to 30 minutes. The eye dr said they were harmless. He thought allergies might contribute. Dad
My experience was much the same as you described. But there was never any headache. Back in 1988 I had just had a mitral valve repair, and that meant I had to undergo MRIs and even a course of Warfarin before docs decided it was migraine. But I also had some rarer episodes which were in just one eye or the other. A neurologist, based on blood tests, said I was positive for anticardiolipin and put me on low-dose aspirin for years. That may have reduced the migraines. Subsequent tests for aCL were normal. MRIs were normal. Aspirin was discontinued. I am experimenting with riboflavin 400 mg/d. Episodes seem rarer. In any case, 29 years after onset, my vision is good and I am surprisingly healthy. But the medical maze I have traversed was interesting…
Your doctors were likely troubled that some episodes occurred in one eye. Such a visual disturbance in one eye strongly implies a small clot flying off into the retinal artery.
I’m wondering if you had anything done to your left atrial appendage at the time of mitral valve repair.?
Yes, that has been the concern. No, my LAA was untouched in my 1988 mitral repair. A little more of my story:
In 2008, I began having afib episodes and was soon put on a NOAC. I also had two ablation procedures which were relatively successful. I have remained on the NOAC (now Eliquis). The migraines and single-eye events have continued as before.
I was referred to a neuro-ophthalmologist a couple of years ago. After much testing–MRI, MRA, EEG(!), etc–he suggested I was having spasms of the arterioles supplying the retina. Suggested a Ca channel blocker if it worsened.
My reading makes me think we don’t really understand migraine. In particular, we don’t know how vascular and neural processes interact. My guess is that I actually have a migraine-like process that occurs in my eyes.
I found a good description here:
Note that my textbook migraine auras and my ocular migraines both started at essentially the same time.
I began having identical migraines about 6 years ago (age 57 the) while working in the ER one evening. I was wondering why the lights were so bright, and why I could not focus on the laceration I was suturing. Then I noted the zig/zag pattern you describe. No real pain, trace of nausea maybe, gone in about 20 minutes. A few weeks later, same time (about 11 PM) same thing happened again. I took motrin, better in about 20 minutes. I suspected the cause of the problem was another colleague on duty both nights who irritated me, but now they come and go at different times. I’ve learned they go away in 20 minutes with or without meds.
Your scenarios closely mirrors mine except fortunately I was reading EKGs rather than doing a procedure on a patient.
I have no irritating colleagues to blame (or rather I don’t find the auras related to contact with irritating colleagues :))
While initially they seemed to be related to stress the last few were random.
Resolution in 20 minutes is reassuring and I’m thinking if one lasts more than 30 minutes I might be calling my neurologist buddy.
My later life migraines (without aura) seemed to occur most often when a period of particularly trying emotional stress was OVER – or near enough to anticipate.
Does that fit others’ experience?
I first experienced the flashing C 12 years ago. The 2nd time it happened, I noticed the blurred vision preceded it. But there was no headache at all.
At that time I’d been taking Aspirin, Prinivil and Zocor for 5 years.
I had a Brain scan which was negative.
Episodes would occur occasionally for the five years, then disappeared.
I’m hoping the flashing C stops visiting me after 5 years!
Sounds like what I have that began when I was 14.
I am 65 now. Now I get the aura and almost no headache.
I am not a headache prone person and usually go several years between migraines. I think they might be called Ocular Migraine?
They can mimic stroke. I only had that once ever and that was unpleasant.
I take no meds and if this is all I have going on, that is ok. I am blessed. 🙂
There are interesting connections between stroke and migraine.
-Shunting across a patent foramen ovale is associated with migraine and stroke and studies have examined (for the most part without success) closure of a PFO with a catheter-based device for treatment of both recurrent migraine and stroke.
-Also, the incident of small vessel disease in the brain which may indicate minor strokes in higher in migraineurs. Of course, some of that association may be because “A growing body of evidence has also suggested that migraineurs are more likely to be obese, hypertensive, hyperlipidemic and have impaired insulin sensitivity, all features of the metabolic syndrome.” and these factors are also associated with small vessel disease.
Bill has had these for several years. The doctor called them ocular headaches. He said you described his perfectly only his is on both sides.
Both sides meaning on the left and right visual fields? By definition the migraine aura occurs in both eyes equally.
I prefer acephalgic migraine (meaning no headache) to ocular headache mostly because I like the word acephalgic because I can trace it back to the Latin roots a (not). ceph (head) algia (pain) because that makes those two years of Latin at Bartlesville College-High Highschool all worthwhile 🙂
It’s not paranoia if it’s really after you!
My high school years were marred with migraine.
Ever come across a migraineur whose aura totally blinded him/her?
It’s rather like putting your nose to a large lit cathode ray TV screen after broadcast hours.
I get these, too, typically when I have been more stressed out than I realize. Very disconcerting when it first happened a few years ago while seeing patients! 🙂 I ended up not doing an MRI…