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Migraines: Why they are misdiagnosed and what to do about it | American Migraine Foundation

The American Migraine Foundation is a non-profit organization dedicated to the advancement of research and awareness surrounding migraine, a disabling condition that impacts more than 39 million men, women and children in the United States. Dr Christine Lay, an expert and patient herself, along with Nim Lalvani, a patient and advocate, sat with me to discuss the dynamics of migraines, the symptoms and how they manifest in individuals, as well as solutions. We also discuss the dynamics of the challenges in finding a provider who can help you and practical solutions for you to find relief as you are looking for that expert.

Summary

The American Migraine Foundation is a non-profit organization dedicated to the advancement of research and awareness surrounding migraine, a disabling condition that impacts more than 39 million men, women and children in the United States. The AMF was founded in 2010 to provide global access to information and resources for individuals with migraine as well as their family and friends.


Working alongside the American Headache Society, the AMF mission is to mobilize a community for patient support and advocacy, as well as drive and support impactful research that translates into treatment advances for patients with migraine and other disabling diseases that cause severe head pain.


In this episode, guests Dr. Christine Lay, an expert and patient herself, and Nim Lalvani, a patient and advocate cover:

  • The challenges with getting diagnosed with migraine given the dynamics of our healthcare system

  • How to get properly diagnosed and tools to help you do just that

  • The impact of migraines on individuals and loved ones

  • How to manage migraines including available treatments

Transcript


Georgie Kovacs: Is there a difference between a headache and migraine?

Dr Christine Lay: Definitely there is a big difference. A headache is one of the most common human ailments worldwide. A review was done a number of years ago, looked at 110 different countries worldwide and found that headache was extremely common.


However, migraine is a brain disease, where one of the clinical symptoms of migraine is a very disabling often moderate or severe headache, but it's associated with a number of other brain or neurological symptoms. This distinguishes migraine as a very unique entity compared to something like tension type headache, which is the most common type of headache worldwide, but it's rarely disabling, unlike a migraine.

Georgie Kovacs: Can you define what debilitating looks like for migraine sufferers, specifically?

Nim Lalvani: It can be different for everyone, and even within one individual, no two attacks can be identical. The key feature is that your life is really disrupted in the lead-up to an attack, the attack itself, and even the recovery from the attack. Often, people associate migraine with severe head pain, but there's also people who don't get the head pain but get everything else that's associated with migraine.

There's a lot of stigma that the 1 billion people worldwide face when living with migraines, not only from a personal interpersonal level, meaning as the individual, they feel embarrassed to talk about this debilitating experience, because they don't want to see be seen as irresponsible or complaining.

Dr Christine Lay: Migraine is variable amongst different patients, and it's variable within an individual. Some people have one migraine their entire life, and there are other people that live with a migraine attack every day. It is a spectrum and often, there is a delayed diagnosis.

Someone in the more common and full blown part of a migraine attack will have a severe headache, and it's debilitating. One of the diagnostic criteria is you can't get done what you need to get done. Eighty percent of individuals during a migraine attack are unable to function, where some are even bed bound.

A smaller percentage aren’t able to do most of what they need, but the majority of patients are really finding it hard to function even with moderate activity such as light housekeeping, driving your children to a soccer game, getting your work done at the office. Making social plans with friends can be ruined because of these migraine attacks.


A headache is one component of migraines. There are all these other neurologic features - intolerance to light-intolerance to sound, intolerance to smell, even intolerance to touch. Many patients in the midst of a migraine attack will say, “I gotta take my necktie off, I need to take my glasses off or take my ponytail out or I can't stand the tag on the back of my clothing, I just had to take my socks off.” Everything was very bothersome. We call that cutaneous allodynia. In addition, there can be neurologic features such as tingling numbness and paraesthesia, which is rare.


In general, patients during the migraine attack will say, “I had a hard time finding the right words, I had a hard time coming up with the ability to balance my checkbook, I went into the kitchen to get something and two hours later I was in the laundry room doing something else and completely forgot that I had to unload the dishwasher.” So there can be some degree of confusion associated with this episode.

That's where the terrible stigma comes in for individuals with migraine, because it's thought of as just a headache. And even well-meaning co-workers or family or friends will say, “Oh, I have some over the counter medicine, I get headaches. Here. Take this, you'll be fine.”

But migraine is so much more than just a headache, and it requires very targeted and specific therapies, lifestyle therapies, vitamin therapies, mindfulness, meditation, wellness, and acute therapy. Acute therapy is a medication an individual will take as an attack is coming on to turn it off to stop it in its tracks. There are also medications that people will take on a daily basis and an oral formulation to prevent the episodes or make them less burdensome and less severe.


There are newer therapies available, which are wonderful, targeted therapies for individuals with migraine, which is a once-a-month or once every three-month injection to be given at home. There's also an intravenous one available now, and we have many new migraine medications on the horizon. It's a really great time for people who suffer with migraines because there's so much hope right now.

Georgie Kovacs: Is it common to not have a headache with a migraine episode?

Dr Christine Lay: It's rare. It's much more common in individuals who are older; we call it acephalgic migraine. They have a lot of the migraine features but not the headache. There are other individuals who have what we call vestibular migraine, which is an imbalance in the vestibular balance system of the brain. These are individuals who will feel like they have vertigo or they're off balance or they're spinning or they're nauseated and unwell, but the headache is very mild. Other individuals more commonly will have a pretty severe or at least bothersome headache as part of the migraine attack, but the acephalgic migraine, a little bit more common in the older individual, but certainly we do see it across the ages. And that makes it hard to diagnose.

Nim Lalvani: The other thing people would be surprised to hear or learn is that migraine does not discriminate against age, race, or gender. While it is predominantly prevalent in females, that doesn't mean men or children don't have it. It’s interesting to see that full spectrum and even how individuals will probably not get diagnosed till later in life, but when they finally are diagnosed, they look back and recognize what they were living with all of those years.

The American Migraine Foundation is trying to hone in on educating all populations and subpopulations about recognizing migraine as a disease and disorder of the brain and when to seek help. There are many individuals who've taken decades to get to a diagnosis, and they've had everything from a sinus headache diagnosis to having their teeth pulled because they thought the pain that's originating in their face area was related to dental issues when really and truly it was a headache or migraine feature that they weren't sure of.

As Dr. Lay said, there's a lot of stigma that the 1 billion people worldwide face when living with migraines, not only from a personal interpersonal level, meaning as the individual, they feel embarrassed to talk about this debilitating experience, because they don't want to see be seen as irresponsible or complaining. That means that it affects their relationships with their partners, their families with their loved ones, their children, they feel like they're not reliable, or they're not showing up 100%.


That gets carried over into the workplace. If there's not an understanding work environment that understands accommodations for invisible illnesses, then you're talking about managers who won't give you that flexible work schedule, who won't dim the light above your