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How long did it take for you to get YOUR migraine diagnosis?

How long did it take before you were told that your symptoms were caused by migraine? If you were anything like the sample of migraine patients reported in the February 2011 issue of the journal Headache, it probably took a long time.

Dr. Viticchi and colleagues from the Polytechnic University of Marche in Italy surveyed 250 consecutive patients who were newly diagnosed with migraine to find out how long they’d been suffering. They also tried to identify those factors that led to a longer delay in getting the right diagnosis.

What they found was not good news — it took over five years for more than half of the patients to get their migraine diagnosis. About one in three patients were diagnosed after one to five years and seventeen percent got their diagnosis in less than 12 months.

Those factors that resulted in a delay in diagnosis were a bit surprising:

  • Being a woman did NOT make it more likely that you’d get a migraine diagnosis earlier.
  • Having migraines begin when you were a younger age made it less likely that your migraines would be diagnosed.
  • Individuals with less education were also less likely to get diagnosed.

And did these patients not get diagnosed because they hadn’t seen the right type of doctor? Over two in five patients had already seen at least one specialist while they remained undiagnosed. Over half of the patients for whom the diagnosis was delayed by over five years had previously seen at least one specialist. And interestingly, getting testing done or not didn’t seem to make a difference in how long it took to get a migraine diagnosis.

What did these researchers conclude?

  • Patients and their doctors need to get better educated about migraines
  • Expensive and unnecessary diagnostic tests don’t improve the diagnosis of migraine or reduce patient symptoms

If you think you might be having migraines, a migraine journal to help characterize your symptoms and take the results to your doctor. Don’t wait years before getting your diagnosis.

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

  • Tracey Duffee
    7 years ago

    I started suffering from Familial Hemiplegic Migraine at about the age of 11-12 years but wasn’t diagnosed until the age of 36.

  • Tanya Greig
    7 years ago

    I’d been getting ‘headaches’ for about 10 years, then all of a sudden one doctor, when I told him I also got tingling/pins and needles/numbness down my left side, just said “Oh, sounds like a migraine”! I was soooo happy to know what was wrong with me, and get correct treatment (rather than “oh, it’s just sinus headaches and don’t worry about the other stuff!”).

  • Janice Worden Lamb Clemens
    7 years ago

    I started having them while in hight school but wasn’t doagnosed until I was about 35 years old……I am so over them because I have the daily migraine and no one can figure out what to do for me…….

  • Kathy Jo Horton Bishop
    7 years ago

    I remember bad headaches as a child my first around age 4 1/2 but wasn’t diagnosed with them till about 6 months after a train derailment..being diagnosed hasn’t helped them get any better I fact they have become chronic and I am now on disability due to that fact..spend 3-5 days or more a week in migraine mode or recovering from one….I’m now 44 years old been disabled since 2007…..

  • Lisa Jurcich Kovach
    7 years ago

    A few months, My allergist referred me to a neurologist and he dx me with migraines. about 3 yrs ago, but I have always had them off and on since I was about 16.

  • Ann Gunning
    7 years ago

    When I had my first migraine at the age of 14, my Mother said, “Oh dear, you have my ‘sick headaches’. She made the diagnosis and she was right. Forty-eight years later I still have them. They have changed somewhat over the years, but I have had ENOUGH!

  • Lisa MacDonald
    7 years ago

    I onyl had migraines when I was pregnant and oddly enough, a doctor suggested Coke and even more oddly….. it worked. Crazy. I would dring 8 ounces when I felt it coming and it would just stop and go.

  • Harris Tredeau
    7 years ago

    I was diagnosed at age 15 after numerous head trauma’s including being impailed with a wood bed post and a thirty foot fall through a ceiling and many other head trama’s do to my previous line of work continued I am currently 45 and the migraines still continue to consume my life I have tried many migraine studies with many types of diffrent medications I have allergy’s to triptans so I can not take imitrex, zomig or any triptan drugs, they tried me on beta blockers with no success I do have a couple of triggers they found such as sleep apnea, anxiety, stress and only one food related trigger was wasabi.even certain pain medications I could not take because of the nausia associated with them and already suffering from nausia whith the migraine this fri I try a new nero doctor to see if he has any treatment suggestions for me other than the ones I currently take, wish me luck as these migraines have ruled my life for to long.

  • Joe Desmond
    7 years ago

    Wow, Nice cousin, huh? Hope it was the gentle cycle at least!

  • Donna Duffy-Barney
    7 years ago

    Good luck Harris!

  • Joe Desmond
    7 years ago

    Just to lighten it up a little Harris-Have you tried a helmet? LOL!

  • Marie Adams
    7 years ago

    about a year.

  • Robin Harris
    8 years ago

    I started having migraines at six years old and was diagnosed at 10 years old, my doctor suffered from them too so he knew what I was going through.

  • Lynne Heller Smith
    8 years ago

    I was not diagnosed with Migraine until my late 30’s when I started getting visual aura. I am now 59 and was just diagnosed with chronic hemiplegic migraine. I wonder why my previous doctors did not suggest this specific type of migraine?

  • Lisa Cooper Ray
    8 years ago

    I started having migraines around age 11, I was not diagnosed until I was 20 yrs old. Nine years! Family doctor, neurologist…finally was my new doctor, after I was married, that figured it out.

  • Bea Cl
    8 years ago

    10years

  • Bonnie Krisanda
    8 years ago

    I was 16 when I was finally diagnosed with migraines. I had ben having severe hed aches since I was about 7 years old. ””””””””””””i

  • Kaleesi
    9 years ago

    In my case it took about 15 years and two emergency room visits before a medical professional suggested I see a neurologist. I barely knew what a neurologist was and certainly had no idea that this was the kind of specialist I should have been seeking out. Not in my wildest dreams had I considered migraines. My first debilitating headache was in my late teens/early twenties. In my late twenties they became bad enough and frequent enough I started seeking medical help. Mine felt as if they were in the sinuses so I thought they were sinus headaches of some kind. An internist put me on OTC Afrin nasal spray. HUGE mistake and a real PIA to ween off of, but had to be done so I could breath again. On two separate occasions, doctors sent me to have head xrays and in both cases my sinuses were shown to be clear and I was sent home w/o a diagnosis. During my second emergency room visit someone (and if I recall correctly, it was NOT a doctor, but was a nurse or technician) suggested that I see a neurologist, which I subsequently did and he was the one who diagnosed migraines. I was in my mid thirties by this time. Then began the usual array of preventative medication trials. I am now in my 60s and suffer chronic daily migraines.

  • Ellen Schnakenberg
    9 years ago

    The only time I can say I’ve been lucky where Migraine attacks are concerned is with my diagnosis. Having nearly blinding aura made the task much easier and my diagnosis came fairly quickly. My kids’ diagnoses were easy as well because family history helped to lead us in the right direction from the beginning. I wish getting appropriate treatment were as easy as getting the diagnosis…

  • Diana-Lee
    9 years ago

    My story is pretty unique. I started having migraines when I was about six years old and it scared the crap out of my parents so they started taking me to doctors. Since none of the testing indicated anything else was wrong and we have a strong history of migraines in my family, I was diagnosed at that time.

  • mj71
    9 years ago

    the first doctor i went to about it said, “well, it COULD be migraine, but it’s probably allergy-related.” she prescribed 2 allergy medications, and then she gave me 2 sample doses of imitrex. when i went back and told her both seemed to work, the allergy meds seemed to get my allergies under control and the imitrex took care of the headaches, she said, “well, it was probably the allergies,” and did not prescribe the imitrex for me. nevermind that she’s the one who told me my symptoms sounded exactly like migraine symptoms.

    it was 7 years later that another doctor finally took a realistic stance and treated me for my true disease, migraine. my brother and my mom get them, but my brother has isolated his primary trigger, which is great, so he almost never gets them anymore. my mom is still in denial and believes it’s sinus. she has yet to speak to a doctor about it, regardless of my encouragement. i hope to get her proper treatment, maybe with a beta blocker such as i’m on to prevent them altogether.

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