Chronic Migraine Awareness

Many people use the term “chronic” according to its dictionary definition. Dictionary.com lists the definitions as:

1. constant; habitual; inveterate: a chronic liar
2. continuing a long time or recurring frequently: a chronic state of civil war
3. having long had a disease, habit, weakness, or the like: a chronic invalid
4. (of a disease) having long duration

Based on these definitions, “chronic migraine” can be used to describe anyone who has been living with migraine for many years. Because migraine is an incurable disease, the term “chronic” could apply to anyone diagnosed with migraine. But that’s not the medical definition of Chronic Migraine.

Most people actually have Episodic Migraine

You see, Migraine is a spectrum disorder. Some people experience infrequent attacks, going months or years in between the next one. A person with a mild version of the disease has very little disruption to his or her life.

• My dad gets an attack once or twice a year that lasts for a day or two. He takes a sick day, rests, recovers, and returns to his normal life.
• My husband’s Migraine Disease is a little more severe. He gets attacks a few times a month. Sometimes he can take Aleve or Excedrin and continue working with minimal disruption. On occasion he must use Imitrex and cannot work until the attack subsides.
• Neither man has a medical need for preventive treatment and our family’s financial stability was never threatened by their Migraine Disease.

Other people can have more frequent attacks.

If not treated with preventive therapies, these people can lose several days a month to migraine attacks. Migraine disease has a significant impact on their lives. Medical treatment is absolutely necessary to allow them to live normal lives and reduce the risk of worsening the disease.

• My daughter doesn’t need a lot of interventions, but a small dose of a common preventive medicine helps keep the attacks to a minimum so she can work and care for her preschool daughter.
• I fell into this category for many years, too. I would get attacks 1-3 times a week, often missing school and work. Because there were limited treatments available during my childhood, my Migraine disease was left largely untreated. Over time, the attacks got more severe and more frequent. I had High-Frequency Episodic Migraine — almost Chronic, but not quite.

Chronic Migraine is different.

The vast majority of people living with Migraine have the milder, episodic variety. Unfortunately, 20% are much, much sicker. They have Chronic Migraine, which is defined as having migraine attacks 15 or more days every month. More than half the time, these patients are feeling the debilitating effects of Migraine attacks. They are in pain, feeling nauseated, sensitive to light, sound, and odors nearly all the time.

Preventives are essential.

Because it is not recommended that patients take abortive medications more than 2-3 times a week, most of their attacks go untreated. Some attacks can last up to 72 hours. Often these patients will experience Status Migrainosus — a condition in which the attack does not end — and be forced to seek care at the Emergency Room to get relief.

It is imperative that patients with Chronic Migraine find an effective, tolerable preventive in order to reduce the number of attacks. Unfortunately, Chronic Migraine is the most difficult type of Migraine to treat. Many patients try dozens of preventives (sometimes two or three at the same time), alternative therapies, and struggle with comorbid Major Depressive Disorder. Few can work full-time jobs and all struggle with maintaining healthy relationships, housekeeping, and even personal care.

Chronic Migraine is hard to treat.

There is only one treatment that is FDA-approved for the prevention of Chronic Migraine. That’s Botox. It’s expensive, insurance companies make it difficult to get the treatment approved, and it doesn’t even work for everyone. When Botox fails or the treatment is denied, patients with Chronic Migraine are left with very few options — none of which have FDA approval or much good science to support their use. Plus, they are expensive and rarely covered by insurance. They may consider long-term opioid therapy, nerve decompression surgery, neurostim implants, or enrollment in clinical trials.

No two patients are alike.

• I’ve have Chronic Migraine for 17 years. I’m one of the 30% for whom Botox is effective. It has dropped the frequency of attacks down from 15+ to an average of 5 a month. That doesn’t mean I’m “cured” or change my diagnosis to Episodic Migraine. If I stopped getting Botox injections, the attacks would gradually increase again. There is also a chance that Botox may stop working at some point. If that happens, my doctors and I will have to get creative to keep my disease under control.
• I have several friends who experience Migraine attacks all the time. They never get a break. To make matters worse, no medicine or treatment has been able to relieve their pain. Most get moderate relief from narcotics or the occasional infusion at the ER. All have experienced more than one doctor who gave up on them, saying they would just have to learn to live with the pain.

Make no mistake, people diagnosed with Chronic Migraine are seriously ill. Their depression and anxiety are often a result of decades of failed treatments and widespread discrimination. They are not lazy, weak, fragile, or mentally ill. They have an incurable disease with few effective treatments. It is a lonely, depressing life…so much so that some choose to end their lives instead.

Yet there is still hope.

New treatments are currently in late phase clinical trials. These new drugs are the first to ever be developed specifically to prevent migraine. Having a class of drugs to call our own is a game changer, finally giving legitimacy to a disease we’ve always known was real. We await their arrival with much anticipation and pray they are affordable…or at least covered by insurance.