A person looks at confusing direction and road signs to decipher their diagnosis journey

Cluster Headaches - Journey to Diagnosis

Growing up, my grandpa had cluster headaches. I remember he would say, "It feels like a hot poker stabbing me in the eye." I remember thinking, "How would you know what that feels like?" He passed away in 2003, only knowing that he suffered from cluster headaches.

He had no idea how to stop his attacks. He would have an ice pack on his head and would pace the floors. Being a welder, he had access to oxygen tanks at home and at work. He never knew oxygen used according to a specific protocol is the best way to abort an attack!

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New headache symptoms emerge

When I was about 30 years old, I started having new headache symptoms. Since I had migraines for years, I knew this was something different. I would get intense head and eye pain at 2 pm every single day. It would last 2-3 hours and then it would go away.

At my next appointment with a headache specialist who suffers from migraines himself, he simply told me, "Since you have migraines, it is just a migraine." However, I only had triptans, no preventative medication. After talking options, in his frustration at the lack of medications left for me to try, he tossed me a prescription as a "Hail Mary". It was a calcium channel blocker. It worked!

Trying to understand this new headache

I was so excited, but also confused. When I reported to my headache specialist that this had worked, he simply shrugged and had no more insight. I remember feeling as if this medication should not have worked and it was my imagination.

Something happened with my prescription refill and I decided to not fight his office for the refill and stop the medication. Within days the headaches returned. I was still confused about this headache and what it meant. However, I made sure I always refilled this prescription.

A strange pattern in one eye

November 2017, I woke up at 7 am to take my kids to school. I had an intense pain in my eye. It literally felt like I had something in my eye, but worse than I had felt before. I had some eye drops, so I tried to "wash out" whatever was in my eye. It didn't work. My eye was red and tears were flowing. My eye hurt and watered so badly. I couldn't keep my eye open. My nose was stuffy and running. Of course, it was only on one side.

My other side was unaffected. I grabbed sunglasses and thankfully I only live a mile from the school. It was the longest mile of my life trying to drive. However, about 2 hours later, it was like it never happened. I convinced myself that maybe whatever was in my eye, had finally left! At 7 am the next morning, it all happened again. I was so confused. This continued for a few days, 7 am every single day, then it stopped. I was relieved. This recurred several days a month unpredictably.

Road to diagnosis (again)

However, that would not be the end, but only the beginning. In March of 2018, as spring began to surface, not only did my pattern continue, but it intensified. By the time I got to my family doctor, I was having about 4 attacks per day, every day for 2 weeks. I was terrified. They always came at the exact same time, every single day. A couple of days prior to my doctor's appointment, I found myself pacing the floor because laying down or even sitting made the pain so intense I had to jump up.

I flashed back to my grandpa. I realized his analogy of "a hot poker stabbing me in the eye"! So I grabbed ice packs and paced the floors every time an attack occurred. While it did not stop the attack, it did help me manage until it stopped. Also, making this connection somehow gave me a bit of relief. I finally had an answer to that question I'd had years before.

My doctor wanted me to have my eyes checked by an ophthalmologist, since I had eye pain, while I waited to get into a new neurologist that she recommended. This neurologist sat and listened as I poured through my many symptoms. I left the office with a new diagnosis that day, cluster headaches, in addition to my diagnosis of migraine with aura. While the words did not wipe away my pain, it gave me hope that I now knew my diagnosis and could begin searching for ways to manage.

Yes, you can have more than one headache diagnosis

I had a follow up with my neurologist recently. In going through my symptoms and diagnosis list, he updated my cluster headache diagnosis from episodic to chronic. The other day I had an attack and the image that came to me was a bee stuck in my eye socket stinging me over and over and over.

What I hope for others to know is, it is possible to have more than one headache diagnosis. It is so important to advocate for your health and make sure you share your symptoms with your doctor so that you can receive the best treatment possible for your condition.

Those who have cluster headaches, what imagery would you use to describe to someone who wonders what a cluster headache feels like?  What has your road to diagnosis been like?

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