A cluster headache is known to be one of the most painful types of headaches.
It usually occurs on one side of the head with a piercing pain.
A cluster headache is a rare type of headache, affecting a small percentage of people, making them difficult to diagnose.
A cluster headache is a rare type of headache that can feel like excruciating pain on one side of the head. Cluster headaches can last 1 to 3 hours and can occur daily or many times a day.
Symptoms can include:
A sudden pain behind or near the eye
Eye swelling and watery eyes
Runny nose and nasal congestion
Severe head pain
Drooping eyelid on the affected side
Julie Fleck, a 60-year-old former nurse from Saint Louis, Missouri, began having cluster headaches when she was 45. But because they’re so rare, her attacks went undiagnosed for years. There are more than 300 conditions involving headache, which is why they can be so hard to diagnose.
Besides cluster headaches, Julie also gets migraines.
When Julie has a cluster headache, she feels like she needs to move around.
“You can't lay still. You’re rocking back and forth,” she says. “I was once at a physician's office and was banging my head on the floor just because it makes it feel better.”
Julie’s pain is always on her right side. Her cluster headaches occur during the months of October through February, meaning they are cyclic. Her headaches begin and end without any warning. They often wake her up in the middle of the night.
“My cluster headaches are on my right side, and it feels like someone is stabbing me through my left eye,” she says.
Some people with headaches can take triptans, a prescription medication usually prescribed to treat migraines. But Julie gets hemiplegic migraines (a rare kind of migraine that also makes her weak on one side of the body), and her provider said triptans could put her at risk for stroke.
Julie’s insurance covers oxygen therapy, a way to deliver concentrated oxygen into the body, which provides her relief. She also finds support through groups like Clusterbusters, an organization for people who get cluster headaches.
It feels like being stung by a hornet
Anna Williams also found solace in the Clusterbusters group. With their help, she also was able to find relief with oxygen therapy.
Anna, who is 47 and lives in New Albany, Indiana, started getting episodic cluster headaches in 2012. At first, medication was helping. But her headaches returned worse than before, and she began having chronic attacks.
Anna’s headaches can last from 15 minutes up to 3 hours. They occur several times a day. At times, she experiences shadows, a precursor to cluster headaches. Symptoms include eye or nose irritation. During an attack, her eyelid swells. Then, it gets red and droopy. She also experiences nasal congestion and sometimes facial sweating.
Like Julia, Anna prefers to move around during an attack. The pain is tremendous.
“You’re in this space where you will do anything to make it stop,” Anna says. “My brain is like, ‘If I just claw my eyeball out, it’ll stop, right?’ It is so excruciating that it sounds like a great idea.”
Even when Anna is in remission, she experiences shadow activity. It feels as though she’s on the edge of an attack. Her head and nose tingle and her eye waters.
In 2017, when her cluster headaches returned, her pain scale rose dramatically.
“It feels like I’m being stung in my eye socket by a hornet, and every time it stings me my eye just gushes water,” Anna says.
She says oxygen therapy has helped her prevent attacks and spend more time with her two kids.
“I don't want them to be my caregivers, but it does affect what we can and can’t do,” she says. “I’m just now starting to feel like I can be more of who I want it to be now.”
It feels like an urgent pain
Ashley Hattle-Cleminshaw was 18 when she got her first cluster headache.
She was lifeguarding and began experiencing a sudden, immense head pain. At first, she thought she was just dehydrated. She tried to power through the pain.
Eventually, she had to retreat to the bathroom. It felt as though someone was stabbing her in the eye. She paced back and forth before lying on the cold concrete floor with an ice pack, which helped, she says.
Her first attack lasted an hour and a half. The headaches returned daily for 2-week periods. This went on for 6 months.
“It felt like someone was stabbing me in my eye,” she says.
Her dad took her to see a neurologist, who officially diagnosed her with episodic cluster headaches. Her provider gave her a burst of prednisone, which helped. She went on to attend college without any further attacks.
But 6 months later, her cluster headaches came back. She had to get special allowances from her professors and couldn’t study abroad, she says.
“With cluster headaches, it’s an urgent pain that I have to deal with now, and there’s no putting that off,” she says.
She has tried sumatriptan injections and oxygen therapy.
Before a cluster headache, Ashley notices that her neck begins feeling tense. When her ear starts to pop, she knows she’s going into a new cycle. Other symptoms include a runny nose and her eye feeling smaller on the side where her headache is. When her ear starts feeling normal, she knows the cycle is ending.
Coming out of an attack can feel euphoric. “It's like a hallelujah moment, where you’re clear of pain,” she says.
She also connected with the Clusterbusters organization and even met her husband there. He knows what she goes through because he experiences cluster headaches as well.
Since Ashley is currently pregnant, she’s not taking any medications and is only using oxygen therapy. She says she hopes that keeps her cluster headaches stay at bay.
What does the doctor say?
Patricia Pinto-Garcia, MD, MPH
Cluster headaches are a well-described type of headache, but they’re not well understood. It’s not clear why people develop cluster headaches or what exactly causes them.
During a cluster headache attack, the fifth cranial nerve — called the trigeminal nerve — gets activated. People have two trigeminal nerves and each nerve controls one side of the face.
When this nerve gets irritated, people with cluster headaches get pain on one side of their head, usually around their forehead and eyes. They can also get symptoms like runny nose, watery eyes, eyelid drooping, and pupil dilation on the same side as their headache.
Another classic symptom of cluster headaches is a feeling of restlessness. It’s not clear why, but most people need to move or pace during an attack. Usually, people want to stay still when they’re in pain, but some painful conditions (like kidney stones and cluster headaches) actually make people want to move around.
Finding the right treatment for cluster headaches can be tricky as well. Many people who experience cluster headaches also have another type of headache symptom, like migraines.
While many people get relief from cluster headaches using oxygen therapy, they also often need additional treatment for their other headache conditions. Many people choose to work with a headache specialist to develop a personalized care plan which can address multiple types of headache attacks.
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