Navigating the Shadows and Ghosts of a Cluster Headache

People who experience cluster attacks often have pain outside of their traditional attacks. While cluster attacks are completely debilitating and the pain is excruciating, shadows and ghosts are also a part of the process, and the emotional toll they bring is very real. Knowing these odd experiences are common has helped me manage my headache disorder. The symptoms of shadows and ghosts can certainly vary from person to person. This is a bit of my experience, and I look forward to hearing what they are like for you in the comments.

The reality of cluster headache shadows

If you think of a cluster headache as the beast, then the shadow is like the dark figure that is creepily following behind. The shadows will give all the hints of an oncoming headache, but the pain never explodes into a full attack. I feel as if I am being stalked and can be pounced upon at any second. I want to run and hide, but the shadow has been hard to shake. 

Because my condition is chronic, I experience these episodes often. Those living with episodic frequency often speak about shadows being a sign they are about to go back into a cycle.

What my shadows feel like

My shadows begin when I feel sensations in my eye. I often feel like I have something in my eye, and my eye may even look irritated and start drooping. My nose may feel irritated, and I’m unable to soothe it. 

A cluster full cluster headache ramps up quickly from this stage, whereas the shadow keeps me in this limbo. I can still function, but the anxiety of feeling like the attack is coming overwhelms me. Sometimes the intensity will notch up and down a bit. When the sensations get a bit worse and stronger, my eye will water and burn. 

Thankfully, shadows typically stay way lower on the pain scale. For me, a shadow can run like this for two to four hours and then go—poof. Still, everything in my brain screams an attack is imminent. I feel as if I move or touch my face wrong, the beast will unleash. Sometimes it does.

How I treat shadows at home

In the past, shadows have been really difficult to treat. A few times, when the shadows ramped up, I used high-flow oxygen. However, oxygen was most effective when the sensation began to progress to a full attack versus when it remained a shadow.

Instead, I often use energy drinks—specifically, any that have caffeine, taurine and B vitamins. When I can, I go for a brisk power walk. The key is getting my heart rate up without sweating. If I’m able, doing intervals of jogging and walking is perfect, especially if it’s cool outside. 

I also just got a Gammacore non-invasive vagus nerve stimulator this month and do the protocol of three stimulations with it, and so far it’s working really well and makes the shadows disappear within minutes.

The definition of cluster headache ghosts

Have you ever woken up at 2:00 AM with the “rush” that a cluster headache is happening, but nothing happens? This is a ghost attack. I started experiencing them when I went on preventative medications. It was the strangest feeling. I have found that the longer I have been on preventatives, more the ghosts have lessened, but I still get them periodically. 

I’m always thankful that it’s not a full-blown cluster attack, but in that moment, I feel like it’s about to hit. Part of the reason why is because when I am woken up in the middle of the night with a cluster attack, I haven’t missed one second of pain. I wake up, feel the rush then the pain begins to unfold and explode. It’s like the cluster attack wants me fully awake to experience every single second of pain. So with the ghost, I wake up just like normal with a cluster, but the attack never happens.

How I identify which symptom I am experiencing

It takes about 60 seconds for me to know if I'm experiencing a ghost, shadow, or cluster attack. During that brief window, my brain automatically assumes cluster attack and goes into hyperdrive preparing for the assault.

Have you experienced shadows or ghosts?  What are they like for you?  How do you manage your shadows?