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:
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