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What does diagnosis mean to you?

Getting a diagnosis is a crucial moment in our experiences with the healthcare system. A diagnosis organizes our symptoms and gives us a name to use when describing how we feel. A diagnosis also provides us with a map, of sorts, which helps guide medical care and treatments. Bureaucracies depend on a diagnosis — for example, health insurance companies use diagnosis to decide how much to pay doctors. And the National Institutes of Health, the largest funder of biomedical research in the world, allocates research funding by diagnosis.

Diagnosis also helps determine which symptoms are part of a disease and which aren’t. As a result, the experience of getting a diagnosis can be really validating for patients. It can give patients a sense that what they’re experiencing is legitimate and real. It also helps organize patients’ attempts to find help for their symptoms. Most medical websites and electronic support groups are organized by diagnosis, (Migraine.com included).

Unfortunately, it can take a long time to get a migraine diagnosis. In the US, only about a third of people who have symptoms consistent with migraine report that they have received a diagnosis of migraine. Those who have a diagnosis may have had to wait years to learn what is wrong with them.

It took me about 17 years to get a proper diagnosis. I only really understood that I had migraine when I discovered that Imitrex made me feel better. It was a very liberating experience. If a pill could eliminate my pain, then maybe I wasn’t crazy. Plus, now I had a name to put to my experiences. I could finally seek appropriate help.

How did you feel when you received your diagnosis? Was it liberating? Or was it frightening?

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

  • tucker
    6 years ago

    I was just telling a coworker the other day that technically I don’t KNOW my diagnosis. She sees a local neuro she really likes and has gotten 3-4 different diagnoses after she dumped the same bad neuro I saw before I decided to drive 2 hours for a headache specialist. But I guess if my new insurance just approved my Botox for 1 yr then they must agree that I at least have chronic migraines, no matter what other definition you attach to them!

  • tucker
    6 years ago

    Oh Sharron, I was also just rereading your reply. I have found that both of the docs at the headache specialist clinic I go to are super smart. I have a cardiologist who is good and nice and has run a gazillion tests but I keep fainting and last summer wound up in the ER getting over a dozen stitches in my face. At a visit last fall, the neuro asked for the cardiology notes and in the meantime ran more neuro tests just to rule out seizures and other goobly stuff and came up with a diagnosis that technically the cardiologist should have made and treated.

    But she said that I should have less headaches in general b/c my blood pressure wouldn’t be falling out so much and for several other reasons. So, while she is technically treating my migraines, she is also smart enough to look at my migraine journal and ask the right questions (if I put enough info on there) and add to her diagnosis. I can’t say the new med has cured my headaches but I haven’t fainted since I started it about a month ago so that’s a good thing!

  • body
    6 years ago

    I agree with you , Joanna. When I got my diagnosis it was very liberating. It was nice to know I had a disease and was not the “stressed out freak” I’d thought I was. It also made me aware of triggers and the fact I could do something to decrease the frequency and severity of my migraine attacks. I would add that an accurate diagnosis is helpful to rule out secondary headache disorders and identify comorbid diseases that may mask or exacerbate migraine attacks. To you benttree79, I found physical therapy to be of tremendous benefit for a bulging disc in my neck. If you haven’t see a therapist you might check with your doctor and see what he/she recommends.

  • Demi
    6 years ago

    i got my diagnosis when i was 10 and im 17 now, so needless to say when i was 10 i didnt really understand what was going on but now that im older i do

  • benttree79
    6 years ago

    My headaches are caused by bulging discs. What kind of pain relief short of surgery will help…..Are there any economical medications out there???????

  • mjsymonds
    6 years ago

    I don’t remember any doctor telling me I had migraine until I started saying “I have migraine” as soon as I walked in the door. For years visiting a doctor about my “headaches so bad they make me throw up” was not in the least liberating or validating. Mostly it was a case of having to steel myself against not being taken seriously or deal with my concerns being put down or brushed aside in some way. It didn’t help that during all this time nothing they gave me ever helped. I remember taking all of the following, in turn, with absolutely no effect: prescription strength Ibuprofen, Naproxen Sodium, muscle relaxants, Elavil, Paxil, and Midrin. It wasn’t until I was around 40, when I had yet again gone through (and “failed”) another trial of drugs from this list, that my doctor finally prescribed Maxalt for me. I’ll never forget the look of real shock on her face when I came back and said, “Maxalt worked!” That was the first time I ever felt validated, like, “See, I really do have migraine, and yes, it really has been THAT bad all this time!”

    Since then I have learned to be more proactive on my own behalf, especially since my migraines became chronic and I sought out the help of a migraine specialist to help me manage my condition.

  • Laura
    6 years ago

    The first diagnosis (“migraine”)was validating, but the second (“some sort of Trigminal autonomic cephalgia’), and the third (atypical trigeminal neuralgia) just led to confusion and ambivalence. I wondered what was so wrong with me that the doctors could not settle on one diagnosis. “Was my condition changing or had I been misdiagnosed or did I have all 3 diagnoses?” I’ve decided that that it is probably the latter, but that to me it doesn’t really matter any more. I just want a treatment that works. I’m sure the medical researchers need to name a diagnosis on their grant applications; I just hope it leads to something helpful.

    but has not led to any really successful treatments for me.

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