The Bermuda Triangle of Migraine Care
Last updated: December 2021
I had no idea how hard it was to find migraine care until my husband had a five+ week migraine attack. I knew there were woefully few UCNS-certified headache specialists and long waits for specialists is the norm. But I didn't know that some specialists turn away patients that aren't considered to have severe enough migraine, and I thought primary care providers could meet patients' needs when necessary. I'm embarrassed by how much I didn't know.
From episodic to status migrainosus
My husband normally has relatively infrequent episodic migraine. It's been worse than usual during the pandemic, ranging from two to six attacks a month. When he was at the higher end of that range, he started taking magnesium as a preventive, which took him back to two attacks a month. And then he went into status migrainosus for the first time.
We couldn't break the cycle
His PCP was initially responsive to his needs. A week into his migraine attack, they prescribed a different abortive medication than he usually uses to try to break the cycle. And they agreed to prescribe some other medications that I know are used to break status migrainosus, which my husband was in. But they'd only prescribe the basics, which didn't do the trick. So they referred him to a big-name headache clinic for further treatment.
Clinics are reserved for severe migraine
When the big-name headache clinic told my husband he had to jump through hoops, I contacted the even bigger-name headache clinic that I go to. Neither clinic would see him because they reserve appointments for patients with more severe migraine than my husband has. Even if they had agreed to see him, the wait for his first appointment would have been so long that he would be in chronic migraine by then.
Urgent care and the ER weren't options
Urgent care or the emergency room seemed like the only other option. But this wasn't an emergency kind of migraine attack. It responded to medications but kept coming back, and his pain wasn't severe. Emergency care wouldn't have been able to help him either.
An NP with a headache practice
After feeling stuck for a couple of weeks, I remembered a nurse practitioner in town who has a headache practice. She has an added qualification in headache medicine from the National Headache Foundation, so I trusted her to know her stuff. (While only MDs and DOs can get UCNS certification, the AQH is available to many types of providers.) Not only did she agree to see my husband, she always has room for next-day appointments and does infusions in her office.
Creating a game plan
She was so understanding and was eager to treat his migraine attack aggressively to get him out of the cycle. She gave him several different options and laid out a game plan. He and I were so relieved to find a provider who understood the gravity of the situation and had the resources to help.
Not all doctors are specialists
When I first sought migraine care 25 years ago, I was disheartened by the number of health care providers who claimed to be headache specialists but had little knowledge of migraine and sometimes recommended harmful treatments. That experience so soured me that when the UCNS began certifying headache specialists, that's what I recommended to people seeking treatment. But there's a huge gap in the number of specialists available, and, as I have learned, only certain patients even qualify for care in some places.
Find a provider near you
If you’re looking for migraine care, the National Headache Foundation’s provider search is an excellent resource. It includes both providers with an AQH and those with UCNS certification. I hope you're able to find a provider near you who can meet your needs. If not, there are some new online options for migraine care, too.
I'm sorry my husband had to endure this, but I am so grateful that his experience opened my eyes to the difficulties in finding migraine care.
Are the family and friends you will be seeing this holiday season understanding about migraine?