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My Diagnosis Story

Hi fellow migraine warriors! Do you have a diagnosis story? Today I’m going to share mine. I was diagnosed in 2011 when I was an art student in New York City. The diagnosis came as a complete surprise. Watch the video to learn more:

Now I would love to hear your diagnosis story. How long did it take you to get diagnosed? What did your doctor recommend? How did the people in your life react?

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


  • chica22
    3 years ago

    I had my first migraine in 1963. The doctor had no name for my “headaches”. Had a head injury in 1977 and had daily migraine for 2 years….no diagnosis yet. Then was bitten by a snake in 2001 and had daily multiple migraines for 16 months…..after hospitalization and MRIs it was called a migraine HOWEVER they had no treatment that could stop them. Went to a Mayo Clinic Scottsdale as a last resort….my quality of life was gone after the snake bite. There I finally got a diagnosis and a treatment that stopped them…Topomax, hormone patch and Migrainal. I spent most of my life hiding my migraines because I knew no one, including doctors, would understand. They would say I was neurotic or in need of therapy….at Mayo Clinic they did a psychological workup….not crazy or depressed. They addressed menopause and the blood pressure spikes and treated me with respect. Interestingly, now when I need them again they refuse to take new patients….been too long since I was a patient. Now I am back to square one looking for a doctor who has expertise in Migraine….easier than 1963 but not much. I am hopeful though as now as can travel to a headache clinic. It has been quite the journey over 54 years and almost 40 years without a diagnosis.

  • Maureen
    3 years ago

    I was diagnosed with migraine in 2010. However, I believe my first migraine struck in 1993 in dramatic fashion. I had been sick for approximately six weeks and became acutely sick again. I awoke one morning with what felt like an axe in my face. I fainted on the toilet, awoke to paramedics in my home, and spent the next four days in the hospital being over-pumped with iv fluids and given antibiotics to cure my severe sinus infection. BUT no doctor ever addressed the “axe in my face” or the “weird feeling like I am watching myself in a movie” and “the weird feeling in my lips” and “I just know I have to lay down”. They thought for sure I’d need sinus surgery, but No blockages. For almost twenty years my “chronic sinusitis” had me on and off antibiotics and sudafed. Fast forward to 2010. I hit my head on the trunk of a car. I don’t know if that had anything to do with it, but soon after, my sinus headache would not go away…ever. I began a 10 week, non-stop headache. After 10 weeks, I got a 3 day reprieve, then began a year-long almost daily headache. About a month in, the doctor (a doctor in my practice, but not my personal doctor who was on maternity leave) said the word “migraine.” Almost casually. What? I don’t have any family history. None. Take this medicine. Ok. It did not help AT ALL. ZERO RELIEF. I still wasn’t convinced of this migraine business, until I started doing my own research, because the doctor told me almost nothing useful. I had to start my own advocacy almost immediately, as I was a chronic case with difficult treatment results IMMEDIATELY. When my own doctor returned, she was a much better fit with me in my search for relief, but it has been years of trial and error, and I even preferred her care over one neurologist I tried. I have happily found better success at the Jefferson Headache Center. Had my diagnosis come earlier in my life, it may have helped my son with his health care, as I believe he suffered from abdominal migraine when he was young. However, at the time, we always answered “No” to “Any family history of migraine?” Thankfully, he grew out of it at puberty.
    Thanks for the opportunity to share.

  • DonnaFA moderator
    3 years ago

    Thanks so much for sharing the story of your journey, Maureen. You had some very scary turns! I’m so glad to hear that you found some relief and a doctor who helps you feel heard, that’s so important. We’re glad that you’re part of the community! -Warmly, Donna ( team)

  • Luna
    3 years ago

    I would like to request that transcripts to be provided with any video. I know that I am not the only one that can not watch the video. Thank you.

  • Lisa Robin Benson moderator author
    3 years ago

    I’m so sorry to hear you both are having trouble viewing. I’ll look into the possibility of transcripts for videos that haven’t been submitted yet.
    -Lisa Benson

  • marycr8on
    3 years ago

    Luna, you aren’t the only one. Sadly, I can’t watch it, either. Transcripts would be great!

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