—Maddy, 41, home-schooling mom
Finding the right migraine doctor is a little like finding the perfect pair of shoes. Sometimes you have to try on a lot of different styles until you find shoes that look great, fit perfectly, and feel comfortable. In the same way, your ideal migraine doctor may not be easy to find. But if you do a little homework, you can make the search a lot easier and more successful.
Why see a doctor? For one thing, you must make sure that your headaches are not something more serious than migraine. A medical diagnosis by a trained physician can eliminate other potential sources for your headache.
Should everyone with headaches see a doctor? If they are frequent and/or interrupt your life, then yes, you should. If you’re taking over-the-counter medicines more than a few times a week to treat your headaches, you should see a doctor. You need medical advice.
Many migraineurs who have had unsuccessful experiences with doctors have simply given up on finding a good one. But I strongly recommend that you work with a doctor. Although this book has a lot of information to help you, optimal treatment comes from working with a physician.
If you are interested in prescription migraine medications—which are effective for more than 80 percent of migraineurs—you need a doctor to make sure you can use the drugs and to prescribe them. Even if you don’t want to use medication, you should see a physician to make a diagnosis of migraine before you begin other treatments such as biofeedback. You also want a doctor to have a complete and accurate record of your migraine history.
Getting back to our shoe-shopping analogy, finding the right doctor may take time. You may have to meet with several doctors before you get the right fit.
What are you seeking in a migraine doctor?
Expertise—someone who specializes in headaches, especially migraines, and is up to date on the latest research
Sympathy—someone who will listen to you, treat you as an individual, and not force medicines or anything else on you
Open-mindedness—someone open to complementary and alternative treatments such as biofeedback, yoga, and massage
Patience—someone who will continue to work with you as you hone your treatment plan, and who will adjust your plan if it no longer works
A partnership approach—someone open to your suggestions about your health and who doesn’t resent the fact you are an informed consumer
Expertise.
Even today, as migraine is gaining prominence and attention as a disease, many doctors know very little about it. In general, they receive little training about headaches in medical school and may not have kept up with the latest research and medicines.
You want someone who’s treated a lot of headache patients and stays current with recent developments in migraine research and treatment.
Sympathy
Lack of sympathy by doctors is a huge complaint by migraineurs. I’ve heard more stories than I can count from my patients who say that doctors have treated them condescendingly or downplayed their pain.
“One of the first things I ask a doctor is, ‘Do you get migraines?’ I want a doctor who has migraines or used to get them. I prefer that because then they can’t just say, ‘Here’s a prescription. Oh, it isn’t working? Oh, well, too bad.’”
—Brandy, 34, writer
You don’t necessarily need a doctor who gets migraines. But you do need one who recognizes that this is a disease and that your pain is real and debilitating. You deserve to be treated with respect.
Open-mindedness
Migraine is a bizarre and intriguing disease. Your doctor should believe you when you describe your symptoms, no matter how strange they may be. Your doctor should also listen with an open mind to whatever treatments you think might help. That does not mean she should let you do something dangerous such as trying untested treatments that might harm you. But she should not force anything on you, either. If you don’t want to take medication, she should support your decision. If you want to try biofeedback or acupuncture, she should support that, too.
Patience
Treating migraines takes time. You need a doctor who’s in it for the long haul and will stick with you while you find what works. She should not get frustrated if you don’t get better quickly.
You should never feel that your doctor is bored by what you’re telling her. She should never act like she’s heard it all before (because, chances are, she hasn’t).
A Partnership Approach
Your doctor should respect your involvement in your own health and be happy to work as a partner in your wellness plan. He shouldn’t be threatened by your knowledge about migraines. I’m always delighted when my patients have read about their illness or condition, which is far more common now because of the many medical sites on the Web. Sometimes the information my patients have is incorrect, however, or they didn’t quite understand it; in that case, I’m happy to explain further.
What Kind of Doctor Should You Choose?
You need a doctor who specializes in treating headaches—who’s interested in them, has received training in treating them, and has seen a significant number of headache patients. Much that we know about migraine is the result of studies released in the past few years. Unless a doctor has taken a keen interest in the latest developments and seen many patients with migraine, it may be very hard for her or him to treat you with optimal results.
Your doctor’s goal should be more than to simply stop the pain. He or she should be interested in preventing your headaches entirely, if possible. Don’t hesitate to push your doctor if you’re not getting the results you want.
In general, there are two types of doctors who can be headache specialists: a primary care physician and a neurologist.
Primary Care Physician
This kind of doctor used to be called a GP, for general practitioner, but today we call them primary care providers (PCP). This is the doctor you see for all your regular health needs, annual checkups, and for referrals to a specialist when you need one.
A PCP can be trained in family medicine, internal medicine (in which case he’s called an internist), pediatrics (for children), or gynecology (as a large number of women rely on their gynecologist for all their basic health needs). He may be a physician’s assistant (PA) or a nurse practitioner.
Many PCPs are interested in headaches and have taken steps to educate themselves about this illness. If your PCP is also your headache doctor, you’ll be getting all your health care needs from her, which means she’ll see headaches as part of your overall health needs rather than as an isolated condition.
In selecting a PCP, make sure he is board-certified in his field—whether it’s family medicine, internal medicine, pediatrics, or obstetrics/gynecology—which means he’s passed, at a minimum, a written test and completed a residency (clinical training) in that area. You can get this information from your state’s board of medical registration, which lists every physician in the state, his credentials, and whether he’s ever been sued for malpractice. (To get this information, you can Google “board of medical registration” plus the name of your state.)
Also check credentials of any nurse practitioner or PA.
Neurologist
A neurologist is a physician who specializes in treating brain disorders. Some neurologists are headache specialists, but not all! Neurologists can choose to concentrate in particular aspects of the brain such as multiple sclerosis, seizure disorders, or muscle disorders. They will have general training in headaches but aren’t necessarily interested in them or experts in them.
If you are considering seeing a neurologist, find out if she specializes in headache treatment. If not, you need to keep looking. In selecting a neurologist for any reason, make sure she or he is board-certified in neurology.
How to Find a Headache Specialist
You probably have a primary care physician already. If she is not a headache specialist, ask her for a referral to someone who is. Talk to her about the expertise and partner
ship approach you expect.
Your PCP may feel comfortable treating your headaches herself even if she’s not a headache specialist. She may want to avoid sending you to another doctor unless your headaches are really complicated. Some health care plans put pressure on PCPs not to refer patients out since specialists are more expensive, but if you want to see a specialist, you have a right to do so. If your PCP, despite her best efforts, isn’t helping your headaches improve, insist on a referral to a specialist. Be persistent! It’s your right to feel better.
On the other hand, your PCP may be very happy to refer you to a headache specialist. PCPs are under tight time constraints and often are pressured to treat patients as quickly as possible. But migraines aren’t easy to treat. It may take months for you to find the right treatment plan. That’s why many PCPs are delighted to send headache patients to specialists who have the time to sort out a treatment plan.
List of Migraine Specialists
A number of migraine and headache organizations maintain lists of headache specialists around the country, which you can find through their websites. See the appendix.
Headache Centers
A handful of centers in the United States concentrate on treating headaches, and you may be lucky to find one near you using Google or a referral from a physician.
I opened my own headache clinic on March 1, 2006. The Women’s Headache Center at the Cambridge Health Alliance in Somerville, Massachusetts, is one of the first clinics of its kind in the country: designed by women, for women, through focus groups of women migraineurs.
At the Women’s Headache Center, we use a true team approach to patient care. All of our providers work together to ensure that each patient is treated with respect and gets thorough, comprehensive care for her headaches.
Word of Mouth
Another good source of referrals is word-of-mouth recommendations. One in ten people gets migraines, and you may be surprised to find who among your friends and colleagues has migraines, once you start asking.
Talk to your friends, relatives, co-workers, neighbors, people at your gym, other parents on the playground—anyone you can think of! Find out who your fellow migraineurs are, and ask whether they like their doctor and her style of treatment.
Does the doctor:
listen to them?
take a comprehensive approach to migraine, looking at their lifestyle, health habits, family history?
stay open to alternative approaches such as yoga and exercise?
work with them to develop a personalized treatment plan (taking into account their particular symptoms, triggers, preference or not for medicines)?
perform the physical and neurological exam of the patient herself instead of delegating this task to a nurse or other assistant?
Explain the benefits and the drawbacks of any medications he or she is prescribing?
And, of course, find out whether their headaches are fewer and less painful than before they began treatment with the doctor.
Check your state’s board of medical registration to find out if there are any malpractice claims or disciplinary actions against a doctor you are planning to see.
Also, check to see if the doctor has a website or is affiliated with a medical center. Look at that center’s website to find its treatment philosophy.
At a Medical Center
If you’ve tried these methods and still haven’t found a headache specialist who seems right for you, find the nearest medical center and look for a physician there. A medical center is a teaching center, and almost certainly will have a physician on staff who specializes in treating headache. Go to the medical center’s website to try to identify a headache specialist, or call to ask for help.
If You Can’t Find a Headache Specialist
If you can’t find a headache specialist within a reasonable travel distance, you may have to rely on your primary care physician. If you’re fortunate, he will be interested in migraines and be willing to work with you on treating yours.
See a Specialist—Once
Another option is to schedule a consultation with a headache specialist at a distant medical center. Get a treatment plan that you can bring back to your local primary care physician, who can take over treatment from that point. If you need follow-ups, you can make appointments when possible.
What Your Doctor Should Not Do
No medical professional should ever make you feel that your migraines are not a serious medical problem. If someone says something demeaning, scoffs at your disability, or implies that it’s your fault that you have headaches, you should leave immediately. Don’t be afraid to break off a relationship with a doctor who isn’t giving you what you need.
If you seem to know more about headache than the physician, that should concern you. If you’ve read the first couple of chapters of this book, and the doctor says, “It’s just a headache! Take some aspirin!”—it’s probably time to leave. Unfortunately, many of my patients have had this experience with other doctors.
If your doctor suggests Fiorinal or Fioricet without discussing other options with you, you should be concerned. Think twice before accepting this prescription. See Ch. 9.
Do not let your doctor push you into participating in any clinical trials or research studies if you don’t want to. There are plenty of approved drugs and other treatments for migraine, so there is no need for you to participate for new things unless you want to.
The First Appointment
Migraine is a chronic illness, which means that, for most people, it will be a constant part of their lives. Treatment may continue throughout your life. Creating a treatment plan that works for you can take time, and your doctor must monitor it to make sure it’s helping you. It can also stop working, in which case you’ll need a new treatment plan. This is not a failure on the part of you or your doctor. It’s just the way migraine behaves.
That’s why the physician-patient relationship is different when treating migraine. It’s an ongoing process. Unless your headache improves right away and never changes again, you’ll need regular, ongoing contact with your doctor.
Since you’re going to have a long-term relationship, you need to feel comfortable in your doctor’s office. It has to be a place that you like visiting and from which you leave feeling better—if not immediately better physically, then at least emotionally, in that you know you’re being cared for.
Your impression of the doctor begins with your first contact with her office, and then the first visit. Your experiences will help you decide if this relationship is going to work for you.
When you call to make an appointment, is the receptionist polite and caring?
Do you receive an appointment in a reasonable amount of time? What is reasonable can be tricky, though, since a good headache specialist may be overwhelmed with patients. Sometimes, new patients have had a two-month wait to get in to see me. If this is the case, the receptionist should be sympathetic and explain why there is a long wait, and offer some help in the meantime, such as letting you know about a headache support group, or an alternative clinic.
Is the doctor’s office comfortable for a migraineur? Is the lighting soft or are there fluorescent lights shining in your face? Is it noisy? Are there strong odors such as cleaning agents or magazines with perfume ads?
Does the office offer literature about headaches and migraines for you to read?
Is there a water fountain or water available?
How long did you wait before you saw the doctor? If the doctor is running late, did a nurse or the receptionist apologize and let you know there is a delay?
In the exam room, is there a comfortable chair where you can sit and talk to the doctor, in addition to the exam table? This is a nice feature, since much of treating migraine is a result of dialogue between you and your doctor.
This is an ideal list but you should find most of these features, especially if your doctor is a headache specialist. Don’t hesitate to make suggestions to your doctor for
making the space more welcoming for migraineurs, like making the waiting room perfume-free and lowering the lighting, for example. You also need to feel comfortable with the other people in the office—nurses, the receptionist, the physician’s assistants—because they should be part of your treatment team and feel involved in your care.
What to Bring to the First Appointment
Every new patient is a challenge to me. Together, we’re on a kind of treasure hunt to figure out what kind of headaches she has, and, if they are migraines, their unique features and characteristics. All doctors want to make the right diagnosis, but you have to help. The more information you can provide at your first appointment, the quicker we can figure out what you have and how to help you. Much as I would love to spend ninety minutes with every new patient, the medical system simply won’t allow it. So, the more advance work you’ve done, the more efficiently you and your doctor can work together and the faster you can feel better.
At the Women’s Headache Center, we send out a six-page questionnaire ahead of a patient’s first visit that they bring back in for me to review before I meet with them.
The Migraine Brain Page 17