3 Ways the Pandemic Impacts Cluster Headache Patients

The COVID-19 pandemic has affected all areas of health care in the United States. Those of us with medical conditions that require appointments with specialists have paid a higher price during the lockdowns. While we're happy to do our part to save lives, many of us have experienced more cluster headache attacks with little to no access to our medical providers or in-person support.

Access to headache specialists and neurologists

Treating and diagnosing cluster headache patients could be considered an art form. We tend to go through countless primary care physicians, nurse practitioners, and specialists before finding a medical professional we trust to listen to our concerns and effectively treat our episodic or chronic cluster headaches. When we do find that needle-in-a-haystack provider, they may not be nearby. My headache specialist is in Denver, but I live in Southwest Michigan. My husband's neurologist is in Boston. We each travel one or more times a year to see our doctors and update our treatment plan.

The COVID-19 pandemic is going on a full year of restricted travel, which means neither of us has seen our headache doctors since 2018. When I was pregnant in 2020, my local OBGYN was my only option for treating cluster headaches. She renewed my prescription for oxygen because my headache specialist was unreachable. My husband relies on virtual visits with his neurologist.

Delayed or missed in-office procedures

I am lucky my episodic cluster headaches respond well to treatments such as high-flow oxygen and sumatriptan injections. My husband is not as fortunate. He has been treatment-refractory since his chronic cluster headaches started 17 years ago when he was 12. Chronic "clusterheads" have what we call high-cycles when they experience double or triple their average number of daily attacks. Every January through March, my husband's treatment plan has to change to combat the increase in frequency and intensity of head pain. One of those treatments is the occipital nerve block performed in the neurologist's office that requires skilled hands. The COVID-19 pandemic took that opportunity away as it's not safe to travel to Boston and risk contracting or spreading the coronavirus.

Instead of the occipital nerve block, he's trying a combination of 3 other therapies, hoping they will make just a slight difference. We've heard of other cluster headache patients having to delay or miss their treatments too. However, some of our clusterhead friends qualified for COVID-19 vaccinations early because of their condition.

No in-person support groups or events

One thing that gets us through the pain of each attack is knowing that we're not alone. Each year we count down the days to the annual Clusterbusters conferences because it's the only time we get to see other people going through the same issues as us. I miss the hugs, lamenting about insurance woes or treatment issues, and catching up with those I've come to view as family. We didn't get that in 2020.

The conference was virtual, and yes, there was a "hang out" space on Zoom, but there's nothing like getting a drink or a meal with a fellow clusterhead. The new attendees missed out on the amazing experience of walking into a room and realizing there are 100 people there who truly understand what you're going through with cluster headaches. Our monthly support groups also had to stop last year because many in our cluster headache community are classified as high-risk for complications from COVID-19.

The vaccinations available in the U.S. give us hope that we may soon return to a somewhat normal existence. For us, that means reconnecting with our headache doctors and finally seeing our clusterhead friends again.