What I Wish I Knew Before, About Migraine

If you experience chronic migraine you know just how difficult it can be. The pain and disability caused by frequent, debilitating attacks steals your happiness, time and energy. It leaves you feeling depleted and more vulnerable to a subsequent attack. Many of us call on everything we have within to cope with the physical suffering, stress and anxiety caused from relentless attacks. 

Beyond the pain and agony of an attack itself is the fear of the next migraine attack striking at the worst possible time. It keeps you constantly on edge, making it difficult or impossible to be fully present, driving a wedge between you and everyone else.

And just when we are at our most vulnerable – we are forced to face another unexpected monster. Discrimination and ridicule. We’re judged for being “weak” or “overreacting” and we’re told “it’s just a headache”.

First time here? Welcome. The Migraine World Summit is a community and annual event that has been organized for patients by patients to discover the latest new treatments, research and best practices from dozens of headache experts. Attend this virtual patient event from the privacy and comfort of your own home from March 16-24, 2022. Don’t miss out. Learn more here >>

How common is it to struggle with migraine?

A groundbreaking study was recently published by a team of scientific researchers that showed that just 1 in 10 people living with migraine see a doctor, receive an accurate diagnosis and get a minimally effective, guideline recommended treatment.¹

That means the vast majority, 9 out of 10, people living with migraine are either being misdiagnosed, mistreated or aren’t seeing a doctor at all. 

With these odds, you could be forgiven for not seeing your doctor about migraine. It also means that you can be smart, disciplined and follow your doctor’s instructions and still fail to improve. 

This is a huge problem. 

Why is it such a problem?

According to the World Health Organization report in the Atlas of Headache Disorders and Resources, doctors learn about migraine for an average of just 4 hours in their entire undergraduate medical degree.²

So where do we turn? 

Most people then seek out a neurologist. 

But a neurologist is not necessarily a headache specialist. Neurologists look after a whole range of neurological disorders, diseases and injuries including: 

• Multiple sclerosis (MS)
• Seizures or epilepsy
• Nervous system infections (meningitis, encephalitis or brain abscesses)
• Neurodegenerative disorders (alzheimers)
• Spinal cord disorders including autoimmune and inflammatory disorders (rheumatoid arthritis)
• Headache, such as migraine cluster headache & other headaches

A headache specialist, on the other hand, focuses on just migraine, cluster headache, new daily persistent headache, chronic tension headache & other headache types. These are the preferred doctors for those with a difficult migraine condition.

But there’s another problem.

There is less than 1 headache specialist for every 70,000 people with migraine.³

The truth is that most people living with migraine will never see a headache specialist in their entire life. 

To see one, you need a referral from your family doctor to a neurologist, then from a neurologist to a headache specialist. That’s two referrals. 

Most headache specialists also have a long waiting list. Some aren’t seeing any new patients. Consultations are not cheap and insurance coverage varies. And that’s if you happen to have a headache specialist in your area. Many people don’t.

Most people also assume that any progress you can make needs to come from the doctor.

It is true that doctors are essential to make sure any treatments you are taking are safe and appropriate with your unique medical history. 

But this is the mistake that many people make – they rely almost entirely on a doctor who may not be an expert in migraine or headache.

We now know how many people have been given either the wrong diagnosis or an inappropriate treatment. Given how the odds are stacked against us, we have a responsibility to ourselves to get answers and make sense of our options.

As an informed patient, we still work with our doctor, but it’s much more of a partnership where you can also bring suggestions or treatment ideas to the table.

Migraine is complex and multifactorial. 

Prescription medication is often only one piece of the puzzle.

We know from the world-leading experts we have interviewed that even without changing your prescription it is very possible to still achieve significant reductions in migraine frequency or symptoms.

Doctors will consider treatment or therapy effective if it reduces your migraine days in half. There are lots of potential treatments and therapies that have achieved this for others. But nothing is guaranteed to be effective for everyone.

The tricky part is prioritizing the different options you may not realize you have. It may also involve treatment combinations and strategies that form your overall migraine management plan.

That’s where the Migraine World Summit comes in. It’s ideal for those who:

• Experience two or more days of migraine per month
• Have attacks that often “come out of nowhere”
• Feel trapped in a cycle of frequent attacks
• Who may also have some level of anxiety or depression
• Who may not have many other people around them who really understand

If you’re nodding “Yes” to any of these, then the Migraine World Summit can make a meaningful difference.

According to a recent poll of our audience, 60% have seen a reduction in migraine days since participating in the Migraine World Summit. 73% feel more in control of their health and participants take or plan to take an average of 4 actions as a result.(4)  

Don’t let a difficult situation get worse or continue on for years or even decades.

These world-leading experts can give you the answers and ideas that help you turn the corner in your migraine journey.  

It’s often just one piece of information that can completely change the course of your migraine health. Now is the time to act. 

The 2022 event starts March 16th with dozens of world-leading headache specialists, doctors and experts sharing the latest new research, treatments, and best practices. 

Get free access during the event when you register today >>

References

1) Buse, Dawn C., et al. “Barriers to care in episodic and chronic migraine: Results from the Chronic Migraine Epidemiology and Outcomes Study.” Headache: The Journal of Head and Face Pain 61.4 (2021): 628-641.

2) World Health Organisation & Lifting the Burden. “ATLAS of Headache Disorders And Resources in the World 2011”. Report, 2011.

3) There are 40 million people with migraine in the USA. There are less than 600 board-certified headache specialists registered with the United Council for Neurologic Subspecialties

4) Migraine World Summit Online Survey, April 2020, n=962