If you have had chronic migraine for any length of time, you have heard some version of this…’you need to see a headache specialist.’ It’s a true statement. However, when the number of headache specialists in the United States is up to a whopping 569 to treat approximately four million chronic migraine patients…scheduling to see one of these specialists can feel like scoring slightly better odds than spotting a unicorn.
The reason why we as a community are always talking about headache specialists is because migraine is a significant problem. Let’s break down some facts about migraine so we can all be on the same page. According to the World Health Organization:
- Migraine is the 3rd most prevalent illness in the world;
- 12% of the population has migraine – including children;
- Migraine is most common between the ages of 25-55;
- About 90% of migraine is hereditary;
- Migraine is the 6th most disabling illness in the world;
- Every 10 seconds, someone in the U.S. visits the emergency room complaining of head pain…1.2 million visits are for acute migraine attacks;
- More than 4 million people have chronic daily migraine (at least 15 attacks a month);
- More than 90% are unable to work or function during an attack;
The reality of the situation is there aren’t enough headache specialists around to treat all of the chronic migraine patients let alone the 40 million episodic patients. And medical students are receiving minimal training about headache in medical school even though one in four patients in a general practitioner’s office is being seen for headache related issues.
Realistically, what’s a person with migraine to do? We are fortunate to live in a time when we are able to share information around the internet. Excellent information is available online and you can become your own best migraine advocate. With education on your side, you can approach your current general practitioner or neurologist and partner with them to treat your migraine more expertly than before. Dr. David Dodick, headache specialist at the Mayo Clinic says, ’Migraine patients should demand the care they deserve and take an active role in educating their physicians.’
1. Partner With Your Doctor
How do you determine if your doctor is willing to learn about migraine treatments and partner with you? I think the best way is to be direct and ask. If there is a treatment you wish to try or a study you are curious about, email the doctor through the patient portal before your appointment to see if they have time to review. Call if you don’t have access to a patient portal, and see if there is a way to get the information to the doctor. If not, you can try discussing it during the appointment, but understand that they may need time to review the information before making a decision.
But, perhaps your current doctor is not interested in learning about migraine and the various treatments available, then it may be time to look for another doctor to partner with. The American Migraine Foundation has a search tool on their website that will allow you to search for doctors that aren’t just headache specialists, but also providers that have an interest in migraine. When I ran the search for within 100 miles of my home in Northeast OH, I came up with 33 possibilities. While 100 miles might seem like a long way, it could be well worth the travel for an advocate that holds the key to helping you manage your migraine.
2. Assemble Your Migraine Knowledge
Assuming you have found a doctor to partner with, you might be wondering how to find the best and most accurate migraine information online. It’s easy to find information about migraine online, the problem is making sure the information you are locating is accurate and factual. We have a list of resources that is a good place to start. They are trusted websites and references in the migraine community and will provide you with the latest in migraine research and news. Below, we have assembled some other options for places to get information to build your migraine knowledge and become your own migraine advocate so you can partner with your doctor.
- Purchase the Migraine World Summit – Each year the Migraine World Summit assembles a group of renowned migraine experts to discuss the latest and greatest migraine treatments and information. The topics covered include things like sleep, research, treating migraine attacks, vestibular migraine, drug interactions, hormonal migraine, diet, CGRP, Botox, medical marijuana, refractory migraine, ditans and gepants and the list goes on and on. Each talk is posted online for free for 24 hours, but the transcripts of the talks come with the purchase of the Summit. These transcripts can be used as references for your doctors when you want to try something new. Almost like a referral. Also a copy of the Medical Treatment and Non-Medicinal Treatment Guides are really great information all in one place.
- Find Information from trusted sources like Timothy C. Hain, MD. Doctor Hain specializes in otoneurology and vestibular disorders. This flow chart shows his path for migraine prevention.
- Listen to experts, like neurotologist Dr. Michael Teixido, give talks on YouTube like this one explaining the pathophysiology of different types of migraine and their associated symptoms. Dr. Teixido specializes in hearing and balance disorders including vestibular migraine.
- Here, headache specialist Dr. David Dodick of the Mayo Clinic is interviewed and explains what migraine is, how it is ‘not just a headache’ and all about Move Against Migraine to remove the stigma of migraine. This is a great video that can be shared with those that don’t understand migraine and how it differs from the headaches they might experience.
3. Travel To A Clinic Near Or Far
If you have assembled your knowledge and worked with a local doctor and still haven’t been able to make any headway with your migraine, it might be time to consider traveling to see a specialist. Check with your insurance to see how they will cover your trip to a clinic that might be out of your county or even out of your state. There are some specialists that might be willing to see you online after an initial visit, or provide you with some guidelines that your local doctor can follow.
- Find a Headache Specialist or Clinic that will see you online – The Cleveland Clinic has developed an Online Headache Education Program (OHEP) which offers eight interactive online visits with a PA-C who provides recommendations and tips to help improve headache pain and manage triggers. The support is customized and medications can be adjusted. The program requires an evaluation with the Headache and Facial Pain team at Cleveland Clinic’s main campus or its regional facilities. The service is billable to health insurance and the program costs $49 per session out of pocket.
- Visit a Headache Center – These centers will offer more options including some inpatient therapies if needed. Some of them will offer migraine specific programs and others will tailor a program specific to you after your evaluation. The Migraine Research Foundation will help you locate a center in the United States.
4. Get Involved With Social Media
I have found that many headache specialists are on Twitter and they share lots of information on that forum. While Facebook is the home of support groups, Twitter seems to be the home of migraine advocates. It’s easy to follow the leading headache specialists and advocates and keep abreast of the latest news and studies in headache medicine through their tweets. Find Migraine Strong on Twitter and check out who we follow for a good start to locating some of these migraine advocates.
This is by no means a comprehensive list, but merely a place to start. Do you have a favorite migraine information source not included here? Have you successfully partnered with a non headache specialist to successfully manage migraine? We’d love to hear from you. Come join our closed Facebook group for more in depth discussions.
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