A Migraine with Aura Story
I was going to call this "Scotoma and Sons," but it seemed a bit obtuse.
This is so weird. I’m at the DHAI conference in Boston. It's going well. I was going to be writing about these nifty new glasses that a colleague from Google was wearing.
Alas, before I could finish writing about that, I had the abrupt onset of a strange disturbance in my visual field. Welcome, dear readers, to migraine with aura. Migraine headaches are a neurological phenomenon, and as someone who has had migraine since I was a young child, they suck. I'm here to tell you— they suck. Migraine headache is a deeply unpleasant experience. Migraine headaches differ from more common tension headaches in some important respects. They are both more disabling in the amount of pain they experience and have other sensory phenomena associated. Nausea and sensitivity to light and/or sound are common with migraine, but not tension headaches. Migraine is traditionally not understood to be as bad as cluster headache, which is rarer, and has another name—suicide headaches—so-called because they are bad enough to make one consider killing oneself.
This article, however, is not about migraines. And it's not about cluster headaches. And it's not about hemicrania continua, which is another type of headache I've actually also experienced, I'll be more recently, in which half of your head and face in neurological pain in almost a perfect half of the head distribution. It's not about any of those things, although it's worth mentioning that one medical device can treat all of the above headaches: the GammaCore nVNS device with some caveats. Yes, I prescribe those in my medical practice (there is some data on its use in psychiatric illness that I consider promising, so when I have patients with co-occurring headaches, this is a go-to treatment option).
Dear readers, I admit to you that I’m proving myself a liar. I didn't plan to be a liar, but I said this article wasn't about migraine. It's going to be about migraine now. It's turning into an article about migraine, with aura, the treatment of migraine, and, finally, those glasses I mentioned.
The GammaCore device was studied in a randomized control trial; they used an intent-to-treat analysis and then did a reanalysis with what they call a modified intent-to-treat, in which they evaluated the data on the intent-to-treat sample, but in that secondary analysis, only included those who had high adherence with the device. Yes, that sounds suspicious. The authors highlight this in their writeup, however, that many people didn't bother to use the device regularly. It's a device you hold up to your neck for four minutes in the morning and four minutes in the evening, and that's it. You can use it up to 60 minutes a day. It stimulates the vagus nerve noninvasively with a patented stimulation waveform that doesn’t accidentally slow down your heart.
In any of these neuromodulatory interventions, there is often a group that does GREAT vs. a group that doesn't get much benefit. I suspect this is one of those treatments…
Well, look at that. It looks like people with migraines with aura do quite a bit better. And especially people with high adherence—which probably means people for whom that Device works better—noticed it working better, so they continued using it with a high rate of adherence. They also crossed over both sham and active arms to an open-label continuation phase, in which the benefits were sustained.
So, for patients in this clinical trial who had migraine with aura, it was a predictor that if they used the device, they would get excellent benefits. It's worth noting that breaking out of the data is crucial to avoid “non-comparison.” By this, I mean comparing people who didn't reliably use a device versus those who didn't reliably use a sham device isn't much of a comparison:
Modified intent-to-treat population (mITT)
Upon observation of suboptimal rates of adherence to treatment (Supplemental Table 2), a post hoc analysis of patients who were ≥ 67% adherent was performed. Significant therapeutic gains were observed with nVNS compared with sham for the reduction in migraine days, headache days, and acute medication days …Therapeutic gains for migraine days were more pronounced in the aura subgroup (nVNS, −2.96 days; sham, −1.38 days; p = 0.055) than in the no aura subgroup (nVNS, −2.29 days; sham, −1.47 days; p = 0.049).
There are other studies on the gamma core device that I won't waste your time with now. It's not the end all of migraine treatment, but if it works, it's awesome to have something that works and isn't a medicine. The fact that it also works in cluster, and hemicrania continua, which has minimal treatmen options is a bonus.
Migraine with aura, as mentioned at the top, is the phenomenon of having a visual premonitory neurological syndrome before the pain starts. That happened to me tonight!
The Mayo Clinic describes aura thusly:
Most people who have migraine with aura develop temporary visual signs and symptoms, which tend to start in the center of the field of vision and spread outward. These might include:
—Blind spots (scotomas), which are sometimes outlined by simple geometric designs
—Zigzag lines that gradually float across your field of vision
—Shimmering spots or stars
—Changes in vision or vision loss
—Flashes of light
Which is say, it's weird. I'm not like a Republican Vice-Presidential candidate weird, but still weird enough. Visually, it looks rather stunning. Those zigzag lines that gradually floated across my vision got in the way of me finishing the article earlier because I couldn't see the screen without the squiggly lines getting in the way! Oh no!
People have tried to re-create these migraine aura images for non-migraine suffers, and they look something like this:
Which is a fair representation of the visual thing floating across my vision getting in the way of me finishing this newsletter article earlier. This is all ironic because what I wanted to write about, and I'm going to have to kick the can down the road on, were these fantastic glasses that put text in your field of vision that no one else can see! I know, ironic. Here's what those glasses look like:
And then say more about them, but now I have that headache.
I inherited migraines and chronic headaches from my mother, and she inherited them from her mother. None of us have ever experienced aura altho my vision is affected in a way that I've never found the words to describe it other than "googlie eyes". I had my first migraine at aged 7 or 8 altho the chronic headaches started creeping in more slowly in my 20s. I am lucky that they started in childhood as I have found them easier to cope with and my mother was a great model for showing me the line between powering through vs having to through in the towel.
All of my siblings have developed migraines later in life, some of which were triggered by peri-menopause, and one experiences migraine with aura. Peri-menopause has also triggered the occasional completely disabling migraine for me: I am so sensitive to light, sound, smell, and movement that any of those 4 things causes even more pain (the worst headaches of my life) which triggers vomiting. I wake up with them and they last till about noon. Only thing that helps is to lay motionless with an ice bottle on my head.
I would recommend an ice bottle for migraines. My heat sensitivity tends to be screwed up so either the ice bottle feels so cold it burns hot or I don't feel the cold at all and can hold it to my head for hours. For the last decade it is the only thing that works. I swear that RLS is a vascular disorder and use ice bottles on my feet. My RLS is worse in the summer and my feet get so hot you can feel the heat radiating off them. Cooling my feet down is quite effective for my RLS. I spend most of the day barefooted. An ice bottle is good for ear pain too!
Optical migraines are also weird, and even more weird is that my two brothers and I have all had episodes within days of each other this month, each of us living in a different city. What’s that all about?