Holding on to Hope With Chronic Migraine
A diagnosis of chronic migraine can seem like a life sentence. As the days drag on, it feels like migraine attacks are a permanent fixture and that you will never again function like a normal human being. Despite the fact that people go from chronic to episodic migraine all the time, it’s easy to lose hope. Many of us lose hope and regain it over and over again. I certainly have. But it’s not just having chronic migraine that causes us to lose hope, it’s a confluence of factors. Here are some of the reasons we lose hope… and some of the reasons why it’s worth fighting to regain it.
There are many different treatments for migraine. That’s both good and bad. There’s always something new to try, but you might try multiple ineffective treatments before finding the right one for you. This is discouraging, especially when you desperately want each new treatment to be “the one.” But it’s also a reason for hope; the next one you try could turn out to be exactly what you need or at least one component of a collection of effective treatments.
Even when there are still many alternatives available, some of us have had doctors tell us we’re out of options. That particular doctor may not know what treatments to try next—that does not mean there’s no effective treatment for you, just that the doctor is at the end of their knowledge. Instead of encouraging a person to see another doctor, like a headache specialist, some save face by blaming the patient. And sometimes a patient hears, “there’s no help for you,” when the doctor is trying to say that the patient would be better off with a specialized doctor who has more knowledge in the area.
The people with intractable chronic migraine also tend to have the loudest voices. Most patient advocates have chronic migraine (that’s what made us advocates in the first place) and many stop writing about migraine once they’ve found a treatment that’s effective for them. The same goes for the most vocal forum and support group participants. They’re seeking connection because they need help. Once they get their treatment sorted out, they move on. I don’t blame anyone for wanting to put all things migraine behind them. Still, it skews the perspective, making chronic migraine appear to be nearly impossible to treat.
Then there are the dismal facts about migraine research. It’s horribly underfunded and we absolutely need more money for quality research. What gets lost in that is that there are continual developments in the understanding and treatment of migraine. They pace is far to slow given the number of people who have migraine and how disabling it can be, but they’re still happening. And it’s not just in new drugs or devices that still have to go through FDA approval. There are discoveries about the usefulness of old drugs, too.
“It won’t always be this bad,” my husband told me countless times. It seemed impossible that he was right. He was. My migraine attacks have been less of a burden in the last year than they were in my adult life up to then. I’ve moved from assuming an attack will always come along, to being surprised and frustrated when it interrupts my day. All the symptoms that I thought would be with me forever—extreme sensitivity to sensory input, pretty much every odor triggering a migraine, feeling like my intelligence was gone—have already decreased and continue to lessen. The phrase “hang in there” might seem dismissive, but I've found it to be excellent advice. It's exactly what I've done all these years—sometimes when holding on was all I could do. And now I feel like I have my life back again.
Have you shared your migraine story with us yet?