Community Responses: How Long Did It Take to Receive Your Diagnosis?

Community Responses: How Long Did It Take to Receive Your Diagnosis?

Migraine can be a very difficult condition to identify, and it usually becomes a diagnosis of exclusion after other possibilities have been exhausted. Unfortunately, there is no specific test to confirm a diagnosis of migraine, which often challenges doctors to rule out other conditions with similar symptoms to ultimately get to migraine. For some, this process can take years and years of doctor’s appointments, specialist visits, and tests to get an actual diagnosis, while others may have followed a much shorter path. Some estimates have predicted that nearly fifty percent of individuals with migraine wait over five years to receive their diagnosis. Additionally, approximately thirty percent of patients receive a diagnosis within one to five years, and only seventeen percent received a diagnosis in less than one year. The variety in time to diagnosis can be great.

We recently asked our community members how long it took them to receive their migraine diagnosis and the responses were so great that we thought we’d share some highlights.

Starting young

For many of our community members, having migraine develop at a younger age seemed to lead to difficulties in diagnosis.

  • “I started suffering from migraines at about the age of 11-12 years but wasn’t diagnosed until the age of 36.”
  • “I started having them while in high school but wasn’t diagnosed until I was about 35 years old.”
  • “I started having migraines around age 11, I was not diagnosed until I was 20 years old. Nine years!”
  • “I was 16 when I was finally diagnosed with migraines. I had been having severe headaches since I was about 7 years old.”
  • “4 years old when I got them but could have been younger…that was only when I knew the words to say my head hurt. I didn’t get diagnosed until I was 18.”
  • “Started getting them when I was 10. Doctors would just test my vision and say it’s stress. I was finally diagnosed at age 25.”

Swift diagnosis

For some members of our community, the diagnostic process was fairly quick and easy.

  • “I was diagnosed in a few weeks at age 11.”
  • “The only time I can say I’ve been lucky where migraine attacks are concerned is with my diagnosis. My diagnosis came 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…”
  • “I was diagnosed the first time I went to my doctor about it 20 years ago.”
  • “My story is quite unique, I started having migraines when I was about six years old and it scared 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.”

Taking the long road

On the other end of the spectrum, many other members of our community experienced a long and difficult diagnostic process.

    “10 long years. I just happened to have a doctor’s appointment the same morning I had a debilitating migraine and was finally diagnosed.”
  • “In my case it took about 15 years 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.”
  • “About 25 years. Every doctor I went to told me it wasn’t migraines because I didn’t throw up and I was too young to have migraine.”
  • “More than 15 years… It took a really good neurologist to diagnose it.”
  • “I am 70 years old and had severe headaches from the time I was 5 they gave me everything in the book that left me half out of it and it was until I was about 50 years old that the doctor finally said these are migraines and gave me the right medication.”

Misdiagnosis

Additionally, migraine can be hard to diagnose because its symptoms are similar to those of other types of conditions involving headaches. Many of our members reported being diagnosed with sinus headaches at first only later to discover they had migraine all along.

  • “Many years! Lots of different drugs that didn’t help. Not to mention the many sinus infection diagnoses that led to unneeded antibiotics….it took nearly 60 years, but my doctor finally decided to listen to me.”
  • “2 years, after I switched doctors. Once I found a new doctor, she immediately knew what was wrong with me…. migraines. My old doctor kept treating me for sinus infection I didn’t have, for 2 years.”
  • “25 years. I started at age 7 and was told a lot of different things but never migraine. Think I had the world’s longest sinus infection.”
  • “Many, many years because I was misdiagnosed with something else for a very long time due to my unique symptoms.”

It’s clear to see from our community responses that diagnosing migraine can be difficult at times, and can vary greatly from person to person. However, diagnosing migraine is only one of the first steps in the lifelong journey with the condition. Living each day with a migraine diagnosis and managing its accompanying symptoms can be even more challenging at times. No matter how your migraine battle began, how long you’ve been on this journey, or where you’re at now, we hope you’ll continue to share your story with us.

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