A few days after the last issue of 6FPS dropped, I sat down with my neurologist to discuss how things were going. During that chat, he gave me his diagnosis: I have Vestibular Migraines. They are the key driver for the vertigo issues I’ve been chasing.

So.

Vestibular migraines are an uncommon cause of vertigo, but this is a known syndrome. It is not like typical migraines, in that there’s no headache or pain involved. But like migraines in general, there’s no test that can definitively diagnose them — instead, it’s a process where, effectively, you try a treatment, and if you get better, then that’s proof you have migraines. And if not, you try other things, to see if they help instead.

I’m somewhat lucky in that the initial treatments we tried helped — a lot. That made the diagnosis complete. The neurologist I’m seeing basically has five phases of treatment for migraines, with each phase more or less defined by an increased level of side effects to the treatment (whee!)

I’m currently working in the first phase, which includes taking a suite of supplements, including Riboflavin, Coenzyme Q10, Melatonin, Zinc and Vitamin D. They give specific dosages for each, but since I’m not giving treatment advice, talk to your doctor about that. I was amused at the treatment guide I was given noting that there is no evidence that either higher or lower doses will improve things further. (aka “don’t megadose you idiot”, but very nicely)

The second treatment he suggested is an optional one (because insurance doesn’t pay for it), which is a device. There are a few of them on the market, but I chose one called Cefaly. It’s something you attach to your forehead and it runs a small 100Hz electrical charge through your forehead, designed to target the trigeminal nerve to stimulate and desensitize it.

The way I think about a migraine is like this: take a capacitor. Various things that go on can add to the charge the capacitor stores. If enough things add to the capacitor for it to fill up, it discharges, and now you have a migraine. The Cefaly device is intended to drain some of that charge back out of the capacitor to reduce the chance of it filling up, or to try to remove the charge if you use it during a migraine attack.

Key things that can cause that capacitor to fill up and discharge you into a migraine include stress and anxiety and caffeine, and also aspartame. There are lots of other smaller/minor factors, of course, but from my reading up about all of this, those are the biggest factors. Another one I’ve long had was that things that cause eyestrain — like sitting and writing at a computer — clearly made things worse as well, which at times limited how long I could spend sitting at the desk working on things.

I found that I felt better after my first use of the device than I had in months. Over the first few days, I started having symptom-free days for the first time in over a year. It’s really been a huge help, to the point I’m considering getting a spare for that “oh, oops” moment. If you’ve ever had a monitor attached to your body for something like an ekg, this is familiar: there’s a small piece of plastic covered with goo that you attach to your forehead, and the device uses magnets to attach to it, and it sends the electrical pulses out both ends of the goo-thing. Those goo-things are re-usable to a point; I find I can get a week or so out of each one, so the ongoing costs aren’t bad at all. I use it every morning, and if I start having an off day, I’ll often put it on again, and I find it does a nice job of neutralizing symptoms.

The third attack on this are a class of drugs known as Triptans. I’ve got a prescription for Sumatriptan, which I’m supposed to take half a pill if I start noticing symptoms, and if that doesn’t relieve them, a full pill 20-30 minutes later. I’ve used about five pills in the last six weeks, and I tolerate them well and they seem to work for me.

A final recommendation the neurologist offered was a book: Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain by Dr. David Buchholz. It offers a good introduction to migraines and offers a series of suggestions for trying to manage them. A big chunk of his suggestions involve diet, and the two big monsters hiding under this bed seem to be Aspartame and Caffeine. These days I’m not a big caffeine user, but after reading this I’ve made some changes and gotten my after daily use from 70mg or less down closer to 40mg or less. And yes, now when I drink coffee, which isn’t often, it’s decaf. Since I’m a more serious tea drinker, I’ve been resisting going to full decaf there but I’m doing more herbal stuff (I love mint iced tea anyway!).

This book really resonated with me, but I also have some issues. Buchholz has a long background in treating migraine issues, but the book has a bit of “I am the expert and I know better than the medical community how to deal with this”, which at some level I believe he’s correct, but he doesn’t back up his recommendations (and bombasts) with much data from research and studies; and actually talks a lot about how most of the studies out there are badly designed (which is likely true, to be honest). But the end result is he comes across like so many hypsters plugging some cure or another, whether it’s liver pills or copper bracelets.

I mention this as a warning to other thinking about reading this book: I do recommend it and I have adopted a number of his recommendations, but I do wish there was more data to back up his (probably correct) claims and recommendations. Has it helped? All things considered, it’s hard for me to say. It certainly hasn’t made things worse, and I feel like it really helped me understand the migraine syndromes better, even if it’s primarily aimed at sufferers of the painful versions.

There’s a period of time — at least a couple of months — where I will be using these tools to manage the migraines, and then we’ll review and see if we need to go further into treatments. It takes time to, more or less, rewire and desensitize the nerves involved in creating these migraines, and I’m in a way just starting down that path. But having said that, my typical day is very close to symptom free, and I’ve only had two days since starting treatment that were as bad as a typical day for me prior to starting. So, big win.

I had kind of hit a point where the day to day symptoms had worn me down emotionally; I’ve gotten a new enthusiasm since we’ve started treatments, which is part of why I finally started the big push to finishing up the shop and making it usable. We’ll see where this leads, but I now no longer feel like I’m on that path towards turning into a house hermit.