On a personal note, let’s talk about VESTIBULAR migraines

Why, yes, I am shouting

A big thank you to the folks at the Vestibular Migraine Community on Facebook for providing the words and weight to generate the word cloud.

After two days in the hospital waiting for the neurologists to decide whether my imaging studies meant my head was going to blow up, I was released without a firm diagnosis, but the attending neurologist shrugged and said “It could have been a migraine.”

I rolled my eyes hard every time I had to tell someone about it. I knew what a migraine was, dammit. I’d had 3-5 per week for at least seven years before they’d stopped about five years before. This was no migraine. I was right and wrong: it wasn’t the common, classical migraine I’d become so intimately acquainted with. It took five months for me to find out that it was probably the first big moment of the vestibular migraines that would become my daily life.

Last March, after other, less drastic symptoms, I started having a vestibular migraine which, for all intents and purposes, hasn’t stopped. I have fluctuations in the intensity and mix of the symptoms, but it never really ends.

It took six weeks to get a diagnosis, because when you hear that dizziness is the primary symptom, “migraine” is not the first thing you jump to. Like me, most people hear “migraine” and have a completely different idea about what’s happening. A VESTIBULAR migraine is a different animal, but, even though I’ve explained it multiple times to people, they still ask me, “How are your headaches?” It’s upsetting and frustrating because it feels as though my struggles to explain were completely ignored—and it is now a struggle to explain.

Even when I had the “regular” migraines, the headache part was never the worst part of it. For me, it was always the photophobia and phonophobia that made it worse. When every noise has the same effect as fingernails on a blackboard, and light feels like someone has thrown a dagger into your eye, it’s just as debilitating as an extremely painful headache. I had a hard time talking, because my own voice hurt. It was a period of isolation and darkness, and when I wasn’t actively having a migraine, I was having a migraine hangover.

In some ways, vestibular migraine (VM) is worse, although arguably, it’s also what I’m experiencing now, so that could account for it seeming worse. It’s always dangerous to compare suffering, so don’t take this as saying my vestibular migraines are worse than your regular ones. All I’m saying is that, for me, VM has some features that I have more difficulty with.

I can probably sum it up with this: The persistent symptoms of VM that are most troublesome for me, and have lead to an inability to work, are ones that go to the very heart of my identity: the ones that make up “transient aphasia.” I have always feared Alzheimer’s, which runs in my family, because of the way it eats away at the sum of who the sufferer is. The vestibular migraines are not in any way the same as Alzheimer’s, but that erosion of your cognitive self is there, albeit in a less dramatic way. And the lack of drama in itself is part of the problem.

Here’s the deal: Although dizziness is the hallmark of the vestibular versus the common migraine, it’s by no means the only one. When the VM first started, yes, the dizziness was the most salient symptom. It was constant, and I was always sure I was on the verge of falling over–my shorthand description was that I felt like I’d slammed a couple of margaritas all the time. So I thought that it was the dizziness itself that made reading and writing impossible. But when the dizziness was banked down to a low level of instability most of the time subsequent to botox treatment, I still found issues with reading and writing—transient aphasia.

I read about aphasia for the first time in a linguistics survey course in undergrad. I remember thinking it sounded horrifying—to have the words in your head but not be able to force them out of your mouth. It’s no fun, although, like most things, the reality isn’t quite as awful as imagining it (and it’s mitigated by the fact that it comes and goes). But while it’s going on, it’s extraordinarily frustrating to be trapped in your head with the words that literally will not make the trip from the brain through your mouth and into the air.

Even when fluency is less of an issue, I still misspeak. I write something and later realize I’ve said what I meant backwards, or said something baseless or inane that wasn’t what I was trying to say, or had an episode of non-sequitur theatre. I struggle to spell words that never gave me problems before (for some reason, for example, “female” is always “femail” on the first try now.) I feel like I need a warning label on everything I write to say “It may be social awkwardness, or it may just be my VM acting up.” But the need to engage in some kind of conversation coupled with my ADHD pressure to say something RIGHT NOW because, well, impulse control, makes me continue to try to talk or write and then repent later.

That’s the outgoing version. There’s also the incoming version, where words stop making sense. It’s as though the words start dancing around, text devoid of meaning. I don’t know if it’s true of everyone, but for some reason, it happens more frequently for me on electronic devices, and is worse reading on a laptop than on my phone. My guess is that it has something to do with the lighting and with the amount of eye movement involved, but that’s pure speculation on my part.

I also start having trouble processing what someone is saying to me if a phone conversation goes too long. It happens some in live conversation, but, again, for some reason it’s worse when it’s purely a telephone call.

The ability to make sense of text is also dependent on the complexity of text. For some kind of context, my husband has always referred to me as his mentat, and I’m trained as a lawyer. But now, I have been having difficulty figuring out if I’m eligible for Social Security Disability or if it’s only SSI that has a need component (like the Medicare/Medicaid distinction) because it’s all situated in more difficult texts and I cannot get it to stay still long enough to puzzle it out.

A novel that’s too oblique—the kind I used to enjoy hugely—now baffles me. One with too many characters is too hard to keep track of. Nonfiction is down to a page or two at a time (on a good day). Magazine articles of any length have to be taken at several sessions.

Given that the constant in all my various careers has been the ability to process language, it’s unsettling that this disease attacks that particular faculty. I’ve never been athletic, so a disability that would limit my physical speed wouldn’t affect my sense of self in the same way that the limitations on my language abilities have. Thanksgiving was almost comical because of the mistakes I made in preparing the dishes I’ve done every year for decades—substituting two sticks of butter for two tablespoons, for example, more than once.

You may read this and think, well, but you’ve written this post. But what isn’t readily apparent is the number of times I’ve had to come to the computer and write a little, revise a little, write a little more, for a document that I could have done at one sitting a year ago. I can’t write, edit, and proof effectively for hours at a time now, and I have to take the times I’m relatively clear to work on it.

So if you come across something in the blog and think, wait, that doesn’t make sense, or see a typo, please feel free to point it out. Odds are I missed it—of course, that could have happened in the past as well, but my frequency of errors is much higher.

If you someone tells you they suffer from vestibular migraines, realize that the modifier “vestibular” is very important to the person who is letting you know: it’s something more than or different than a headache going on. It may have come on quickly with devastating consequences’ almost 89% of the 56 respondents to a question about the onset posted at Vestibular Migraine Community said it did (“Like a lightning strike”). It may be completely different for another VMirate than for me; I have almost all of the symptoms in the cloud (I think I counted five that I’ve never had), but not all of them have affected me as profoundly as others. Different VMirates will have a different cocktail. And it may be a struggle for them to explain, so if they’ve said “vestibular,” or if they’ve described it, that takes an effort, and repeating the song and dance is just that much more frustrating.

VM is poorly understood, but there’s some research to indicate it involves more of the brainstem than classic migraine. It’s also not even all that well known among doctors. I was fortunate that both the ENT and the neurologist I saw the first time for it were aware of the syndrome; there are stories of people taking years to get a diagnosis.

Treatments are pretty much the same as for a classic migraine, and probably will remain that way for a good while, as only about 1% of the populations suffers from VM versus 12% for classic migraine, and not all VMirates had classic migraines before the VM hit (about 17% of 36 respondents). Treatments are like any other drug—some work for many, some work for a few, but all of them take trial and error. There’s not much more than anecdotal data out there, but it’s not uncommon to hear that folks took around three years from the initial onset to getting back to a normal life.

So I’m about a third of the way there; I guess I’ll take that as a glass-half-full observation.

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