Migraines might be a mystery for many, yet sufferers have more tools and knowledge available to them today to combat the debilitating headaches. (Courtesy Spectrum Health Beat)
Migraines affect more than 39 million Americans, and about 4 million of them suffer from the chronic form of the disease of 15 or more migraine days a month.
Those who suffer from these debilitating headaches frequently encounter difficulty in getting appropriate treatment when they seek help. The reason? Misunderstanding and the unfortunate fact there is no concrete test for migraines.
To clear up some of the misconceptions, I’ve compiled a short myths quiz so you can test your own knowledge and challenge those around you to do the same.
Myth 1: My headache is not a migraine because I do not have an aura.
Most people with migraines do not experience aura with their headaches. An aura is a sensory disturbance caused by changes in electrical activity in the brain that can precede migraines and is most commonly visual in nature (flashing lights, zig-zag lines) but can also involve numbness, changes in speech or other symptoms. Only about 30 percent of people with migraines experience an aura.
Myth 2: There really is not much I can do to prevent a migraine.
A healthy lifestyle is important in migraine prevention. Adequate exercise and avoidance of tobacco and highly processed foods often goes a long way toward fewer migraines. Sleep is another common factor. Improving your migraine pattern is difficult when you have poor quality or insufficient sleep.
Myth 3: My headache is a tension type headache.
Remember Myth 1. Most people do not get an aura. The International Headache Society has released diagnostic guidelines on migraines that are based on things like duration, severity and associated symptoms. Headaches that are severe enough to discuss with your doctor and also involve nausea or light and sound sensitivity are usually migraines. However, it’s always important to seek medical advice to rule out other causes of your symptoms.
Myth 4: Medications don’t work to prevent my migraines.
There are a lot of reasons acute and preventive medications fail for any given person. Preventive agents (things taken every day with a goal to eventually decrease frequency of migraines) typically take months to be effective once you are on an adequate dose. Giving up on a medication too soon or before an effective dosage has been determined by your physician dooms the attempt. Maintaining open and consistent communication with your doctor is important. Also, remember to focus on the lifestyle factors mentioned in Myth 2.
Myth 5: Despite my nausea, if I keep my pill down it may really help my migraine.
Let’s talk about why acute medications (those taken at the start of a headache to get more immediate resolution of pain) fail. If you are nauseated when you take a pill, you aren’t likely to see results quickly. During migraines (especially when nausea is prominent) the gastrointestinal system slows. That pill has to not only make it to your stomach, but also move to the intestines to be absorbed. If you’re just barely able to keep it down, then it’s unlikely to provide much benefit. You might want to explore other options such as intranasal sprays, injectable therapies or suppositories. They tend to be a lot more effective when nausea is present.
Myth 6: It’s just a low-grade migraine. I shouldn’t take anything for it until it gets severe.
Imagine trying to put out a campfire with a bucket of water. Now imagine trying to put it out with that same bucket of water after you’ve let the fire significantly spread. Which scenario is likely to work? Clearly, dampening the fire before it gets out of control is more likely to extinguish it. Migraines work the same way. The earlier you take the medication once you start experiencing pain, the more likely you are to successfully stop the migraine before it gets out of control.
Myth 7: I can take an acute medication every day for my migraine.
Studies have shown that acute medications used for migraines can actually increase the frequency of migraines if taken too frequently. Typically, this happens after two to three days per week of acute medication use. This is akin to daily coffee drinkers waking up one morning with a headache because they slept in and missed their morning cup. The same thing happens with acute medication for migraines, but with even fewer days of use. If you are feeling the need to use your acute migraine medications too frequently, then it’s time to talk to your doctor about preventive measures.
If you want to know where someone’s priorities lie, take a look at how they spend their money.
Take, for instance, the federal government.
In 2018, the National Institutes of Health spent $303 million on asthma research and $989 million on autoimmune disease studies. That same year, the agency allocated $23 million to the study of migraines.
This, despite the fact that migraines are 50 percent more prevalent than both of the other illnesses. Migraines affect more than 39 million Americans, and about 4 million of them suffer from the chronic form of the disease (15 or more migraine days a month).
There is indeed a gross inequity in funding migraine research compared to other illnesses, said Jared Pomeroy, MD, a headache specialist with Spectrum Health Medical Group Neurology.
In pointing out the federal data, Dr. Pomeroy said one of the main reasons for the lack of funding is stigmatization—migraine patients are more stigmatized than patients who suffer from more diagnosable diseases such as asthma.
Medical tests can help determine the presence and severity of diseases such as asthma. There are no such tests for migraines.
“A lot involves patients reporting their symptoms,” Dr. Pomeroy said. “If someone is missing an arm or a leg, you can see the problem. It’s obvious there’s a disability.
“But headaches are harder to see and diagnose,” he said. “Doctors must rely mostly on what a patient reports, as opposed to relying on their own observations.”
The human condition
Migraines aren’t just an American issue—they’re a human issue.
The World Health Organization lists migraines among the Top 20 illnesses that cause a disability.
The disorder has a disproportionate economic impact as well, typically affecting people in the prime of their lives.
A bout with migraines can cause an otherwise healthy person to miss work or school, and in some cases it can lead to job loss. It can also cause a person to miss out on precious family time.
It’s truly an ailment that knows no social or economic boundaries, striking the rich and famous just as often as it strikes everyday people.
People with migraines can sporadically—and temporarily—escape the battle.
When they seek treatment, however, they sometimes find it difficult to gain understanding from people who have never suffered a migraine, Dr. Pomeroy said.
“A lot of people who don’t suffer from migraines see them as a character flaw, not as a physical ailment,” the doctor said.
Society’s conventional knowledge of migraines doesn’t always mean the public, or even employees in the medical field, will understand the nature of the beast.
Generally, migraines can be accompanied by nausea, vomiting or pulsating on one side of the head. Routine activity can aggravate them.
A migraine patient is often sensitive to light and sound.
Some patients will also experience numbness in their face or body, and the headaches may cause weakness in an arm or leg. Seeing a flashing light, experiencing tunnel vision or even temporarily losing sight are also symptoms.
Treatments
While science is still pursuing a full understanding of migraines, there are treatments available.
They usually entail over-the-counter or prescription drugs. For more severe pain, doctors have used injections or other specialized drugs to provide immediate relief.
“In the 1990s, Triptan medications were developed for acute treatment of migraines,” Dr. Pomeroy said. “Since then, we haven’t had any new classes of pharmaceutical agents developed specifically for migraines.”
Researchers have developed new drugs within existing pharmaceutical classes, the doctor said, and some medicines meant for unrelated disorders have been used effectively for migraines.
Botox has become a godsend for some, although it involves 31 tiny injections that must be repeated every 12 weeks. Others may find relief simply by placing an ice pack on the back of the neck, or on the primary location of the pain.
Patients may also see symptoms improve by changing lifestyle factors such as diet and exercise, Dr. Pomeroy said. Cutting out caffeine and nicotine can be a big help.
Interestingly, the migraine sufferer’s keen intuition is often one of the best defenses.
People who frequently experience migraines can sense when a new one is approaching.
When it strikes at work or at school, they’re better prepared—even if they know their best course of action means returning home to rest in a dark, quiet room.
Some experts think migraines may be hereditary. This much is certain: There’s typically no known cause, and there is no cure.
And until there’s enough funding to help researchers develop a cure, migraine suffers must muddle through the attacks. With guidance from a good doctor, their outlook can improve.
Connie Gall, whose fibromyalgia led to her early retirement, has found a new sense of purpose in the adoption and care of older dogs. She’s pictured here with her dog Prince. (Courtesy Spectrum Health Beat)
What do actor Morgan Freeman and Irish singer-songwriter Sinead O’Connor have in common with Connie Gall, a retired college financial aid officer?
All three suffer from fibromyalgia, a chronic pain disorder with debilitating effects.
Gall, 59, has lived with fibromyalgia since 1990. Just four months after having back surgery that year, she was in a car accident that gave her severe whiplash.
The whiplash triggered a series of symptoms: migraines, widespread joint and muscle pain, TMJ trouble, restless legs, burning and cold skin sensations, sleep problems, fatigue, tinnitus and polyneuropathy.
Although Gall’s symptoms began 28 years ago, it wasn’t until 2004 that a rheumatologist connected the dots and diagnosed her with fibromyalgia.
Joshua Brinks, NP, is a family nurse practitioner who works in the Spectrum Health Medical Group East Grand Rapids Family Medicine office and specializes in working with fibromyalgia patients. He and Gall, one of his patients, would like to shed some light on fibromyalgia and debunk some of the common myths associated with it.
Myth No. 1: Fibromyalgia isn’t real, it’s all in your head.
Fact—Fibromyalgia is a central nervous system pain processing disorder.
“It’s a chronic pain syndrome,” Brinks said. “We don’t know what causes it and we don’t have a cure. And so for patients to actually have a name (for their disorder) and to know that … it’s not in their head is very comforting or relieving to them.”
Gall agrees. When she finally found a doctor who “could put a name on what was going on with me, it made me feel validated … and it all started to make sense,” she said. “It’s (your) central nervous system playing games with you.”
In the last decade, more and more health care providers have accepted and acknowledged the reality of fibromyalgia, Brinks said.
“That’s a big step,” he said.
The next challenge is getting more people to understand it.
“It’s hard to explain to people it’s something that’s going on in your brain—that it’s your central nervous system that is controlling how you feel pain,” Gall said.
Myth No. 2: Health care providers diagnose fibromyalgia when they can’t find a “real” diagnosis.
Fact—There are defined diagnostic criteria for fibromyalgia. If a patient meets these criteria and if other diseases are ruled out, the diagnosis is quite clear.
“I can diagnose it in a single visit,” Brinks said, giving two main diagnostic criteria:
Widespread pain above and below the waist on both sides of the body for three months or longer.
Eleven out of 18 classic tender points—again, above and below the waist on both sides of the body.
“There’s no blood test for it, although sometimes we do a blood test to rule out other things that can mimic it,” Brinks said.
Myth No. 3: If your muscles hurt so much, there must be something wrong with them.
Fact—The problem isn’t in the muscles themselves, but in the way the brain is interpreting signals.
“The fact is,” Brinks said, “they’ve done studies to look at the muscle fibers, they’ve looked at biopsies, pathology studies—they can’t find anything wrong here.”
So if you have fibromyalgia, you need to “retrain your brain into thinking that if (your) husband gives (you) a hug and that causes pain, it’s not actually causing harm to the tissue,” he said.
Myth No. 4: Fibromyalgia is a syndrome that affects only women.
These statistics match the patient demographics Brinks sees in his practice.
Myth No. 5: Fibromyalgia is rare.
Fact—Experts estimate that more than 5 million adults in the United States have it.
“It’s actually one of the most common pain disorders,” Brinks said.
Myth No. 6: Fibromyalgia is hopelessly untreatable.
Fact—Although fibromyalgia has no cure, several treatments can be helpful. Patients respond best if they keep a positive attitude and try various treatments to find what works for them. Brinks mentioned several:
Education
This is where treatment should start for every patient, said Brinks, who spends extra time helping newly diagnosed patients understand what he knows about fibromyalgia.
Gall advises people to find out as much as they can about their illness and its symptoms.
“One of the things that helped me was to really learn about it,” Gall said. “I found reading about it, understanding what all these things are, it made them less scary.”
Maximize sleep
Almost all patients with fibromyalgia experience non-restorative sleep.
“We don’t necessarily know why, but … the quality of their sleep is not good, so they wake up feeling tired,” Brinks said. The result: intensified pain.
Brinks tries to help patients develop good sleep behaviors and patterns. He also looks for underlying sleep disorders, such as obstructive sleep apnea, and works to treat them.
Low-impact aerobic exercise
Using an elliptical machine, swimming, riding a bike, going for a fast-paced walk—any of these exercises can improve a patient’s sleep and mood, and they can also reduce pain. “Initially it makes your pain a little worse, but then it gets better with time,” Brinks said. Activities like yoga and tai chi can help, too.
Cognitive behavioral therapy
Try a multidisciplinary approach to treatment, Brinks suggested. Working with a therapist or pain psychologist, some patients experience improvement through relaxation and breathing techniques or through guided imagery.
Drug therapy
Brinks often starts patients on a low dose of amitriptyline, which can help improve sleep and pain. He might also prescribe drugs that block the reuptake of serotonin and norepinephrine in the brain, which can help improve a patient’s mood and reduce pain. Some patients also find that anticonvulsant medicines help reduce pain.
The medications’ effectiveness can vary from patient to patient. “Sometimes it’s just one drug, sometimes it’s a combination,” Brinks said.
But narcotics are not in the mix: “Research has shown over and over again that narcotics do not help fibromyalgia,” he said.
Address underlying mood disorders
Treating anxiety and depression, which often go hand in hand with fibromyalgia, can ease the burden of living with the disorder.
Well-balanced diet
Gall is a firm believer in eating right.
“I don’t know what shape I’d be in if I didn’t eat so well,” she said. “If you let that slide, it’s like a domino effect.”
Overall, attitude makes a big difference for people with fibromyalgia, she said.
“I love life. I think this is a pretty cool place to be, and if you’re always talking to the people you run into about the latest thing your doctor has told you to do, that means you’re concentrating on your condition,” she said.
“Except for those days when I’m screaming through those stabbing pains or curled up like a ball with a migraine for three days, I’m going to try to do the rest of life with a smile on my face,” she said.
Brinks said people who have good attitudes and a willingness to try new things will experience better outcomes.
Three P’s
One strategy Brinks recommends is the “three P’s” approach:
Prioritize—“If you have a day off work and you have 12 errands you want to run, you need to shorten that list,” Brinks said. “What are the things that are most important?” If you take on too much, the stress can impact your sleep and “all of that is like the perfect storm for fibromyalgia to flare up,” he said.
Plan—Based on your priorities, think about how you should approach your tasks and what’s reasonable to expect of yourself.
Pace yourself—If you have three errands to run, don’t try to do all of them in the first two hours. Space them out, Brinks said. Gall told of a day when she didn’t pace herself as she prepared the house for a family gathering. She ended up in so much pain, she could hardly enjoy the party.
Above all, Brinks said, don’t let pain rule your life. Recognize there will be good days and bad, and remind your brain that your pain is “not life threatening—it’s annoying and frustrating, but it’s not going to cause terminal illness,” he said.
Still, it may bring about major life changes. For Gall, the pain and other symptoms of fibromyalgia became so bad she eventually had to retire early from a job she loved.
Looking to fill the void, she and her husband began adopting older dogs from animal shelters, giving them a safe home in their later years. The sense of purpose this gives her is a tremendous help, Gall said.
After decades with fibromyalgia, she’s found the best strategy is to face it with grit and resolve.
“Even if I have to do life in pain every day, ranging from a pain level 3 to a pain level 10, I don’t get to go back and do it again,” she said, “so I’m going to try to be as good at it as I can.”
