Diagnosis Isn’t a One-Time Thing

Diagnosis Isn’t a One-Time Thing

“That’s a lot of blood,” I said to the lab tech as she filled up vial number 10.

She laughed but nodded. It was a lot of blood.

When I came in with my orders — a stack of papers weighing more than the homestead exemption paperwork that required two stamps to get across town — the tech at the front desk raised her eyebrows. As the labels for the tubes began to print, all three of the techs behind the desk looked shocked. I wasn’t. Those labels represented the search for answers that most of us with a chronic illness know well.

Seeking diagnosis

Over the previous five days, I’d had 13 vials of blood drawn (to supplement the six drawn in March) and dozens of x-rays. As I recounted my time scurrying between doctor visits, lab tests, imaging scans, and blood work to the lab tech, I experienced a moment of medical déjà vu. For a split second, it was 2008 all over again.

Until that moment in the lab, I’d remembered my 2008 journey to migraine diagnosis as relatively straightforward. And, in some ways, it was. My doctors had a working hypothesis of what was wrong with me (migraine), and they simply put me through a variety of tests and scans to rule out other things before finalizing my diagnosis. That’s very different — and much simpler — than using the tests as a basis for a hypothesis. But it still took months before “chronic intractable migraine with aura” showed up on my chart.

Diagnosis is rarely simple

Getting diagnosed with what can be for some a chronic, progressive brain disorder is never simple. While I received an official diagnosis in relatively short order, that diagnosis has continued to be amended throughout the years. And many of those amendments were a long time coming.

It took two years of hearing tests, let’s-see-what-this-does medication, and visits to ENTs, for instance, before the doctors were satisfied I didn’t have Meniere’s disease. They then added “with migraine associated vertigo” to my chart and moved on. That diagnosis will likely change again, as it seems my vestibular migraine is really MBA (migraine with brainstem aura), though many patients with chronic migraine will concur that getting a long-time doctor to modify an existing diagnosis can be difficult.

Why it matters

Doctors don’t want to be wrong. That’s why it takes so long to get a diagnosis in the first place — whether you’re being diagnosed with an accurate version of migraine or something completely different — and why it takes even longer to get an existing diagnosis updated. The problem, of course, is that diagnosis matters.

We all want to know what’s going on inside our bodies. We want to know the expected symptoms, the long-term prognosis, and if what we’re currently experiencing should be considered our new “normal”. That was true for me in 2008, and it is true for me now. But aside from the understandable desire to have knowledge of our own bodies, the diagnosis matters objectively. An effective treatment hinges upon it.

Differences in treatment

Treatment for episodic migraine varies dramatically from treatment for chronic migraine. Treatment for hemiplegic migraine can differ from treatment for migraine without aura. Someone with migraine and Meniere’s needs completely different drugs than someone with vestibular migraine.

We’ve all played the waiting game

That’s why it matters. And that’s why it takes so long to get. Looking back, I hadn’t remembered how frustrated I felt in 2008 awaiting that diagnosis — all the while going from MRI and MRA to cervical x-ray to EEG to blood work. Now, undergoing the same thing again, I do. For anyone out there still awaiting confirmation of migraine or of a specific type of migraine, please know you’re not alone.

All of us with migraine disease have been where you are. We’ve all spent hours getting poked, prodded, and scanned. We’ve all held our breath waiting to get confirmation of what is going on inside of us. For some of us with a particular subset of symptoms, that journey continues. For others, the diagnosis is firm. Either way, we understand. And we’re here, holding our breath for you, hoping you get answers—soon.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (7)
  • glassmind
    3 weeks ago

    Ah, yes the litany of tests. I meet the diagnostic criteria for three types of headache (two migraine), but my provider is pressured by the healthcare plan to put only one diagnosis. This limits the availibilty of treatments.

    Diagnosis can be so critical, as you say.

    Thank you

  • rlc25e
    9 months ago

    I was diagnosed at ten with no scans or MRIs and I don’t really remember any blood work. It wasn’t until last year that I talked them into doing an MRI. After 25 years of having migraines. I have never been successful trying to get disability and I wonder if my lack of testing and hospitalization has contributed to that. I’m not even sure what my exact diagnosis is at this point.

  • Sarah Hackley author
    9 months ago

    Migraine diagnosis has certainly changed over the years. I think more and more doctors require MRI now, but I could be mistaken. I know mine did. Disability applications do often require extensive documentation, and I’m sure testing is a big part of that. I’m sorry you’ve been unsuccessful with your efforts. You’ve probably seen this article, but I’m linking to it just in case. It has some good tips for applying if you decide to go that route again: https://migraine.com/migraine-basics/chronic-migraines-and-applying-for-social-security-disability/.

  • drboone
    9 months ago

    I’ve been diagnosed several different times. First, with Meniere’s Disease in 1996 by a ENT, then BPPV ( a form of vertigo) by another ENT. The last one was Phenomenon Migraines by a neurologist. Basically, I have self diagnosed that I have vertigo migraines. I manage the pain of the migraine it’s the nausea from the vertigo that can take me down for days. It is frustrating that a doctor cannot confirm your illness.

  • Sarah Hackley author
    9 months ago

    I struggled with a diagnosis related to my vertigo as well, and I can absolutely relate to the nausea being a major disability. For me, the vertigo is often more disabling than the pain of migraine because it makes it nearly impossible to stand/walk. Do you find any anti-nausea medications work for you? I have several on hand, though they’re all in pill form which isn’t always helpful when I can’t keep things down.

  • musical-whovian
    9 months ago

    There’s a movie that just came out on Netflix called “Brain on Fire” and while it didn’t end up having to do with migraines (spoilers), I did find it an interesting and relateable watch still because of how the main character is treated. Just watching how she isn’t taken seriously by… well anyone (including doctors) was really relateable to the frustration we go through trying to prove that our migraines are real sometimes. I comment about the movie here because the main character also gets a few other wrong diagnosis that end up making her worse. Makes you wonder if the stuff you’re taking isn’t doing more harm than good sometimes!

  • Sarah Hackley author
    9 months ago

    I just saw the trailer for that move on Netflix. It looks interesting and relatable, even if it doesn’t have to do with migraines. Though I will say, the trailer had me wondering about that. The main character certainly seems to experience some migraine symptoms. Thanks for sharing with us!

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