What are Cluster Shadows and Ghosts?
People who experience cluster attacks often have pain outside of the traditional attacks. While the cluster attacks are completely debilitating and the pain is excruciating, shadows and ghosts are a part of the process and the emotional toll they bring is very real. Shadows and ghosts have a place in our conversation as well. Knowing these odd experiences are common has helped me in managing my cluster disease. 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.
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If you think of the cluster attack as the beast, then the shadow is like the dark figure that is creepily following. The shadows will give all the hints of a cluster attack coming, but never explodes into the 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. Since I am chronic, I experience this often. Those with episodic often speak about shadows being a sign they are about to go back into cycle.
My shadows begin when I feel those first 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 attack 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 it'll notch up and down a bit. When they get a bit worse and stronger my eye will water and burn. They typically they stay way lower on the pain scale. For me, it can run like this for 2-4 hours and then go - poof. 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.
In the past, shadows have been really difficult to treat. A few times when the shadows ramped up I have used oxygen. However, it was most effective when it began to trigger an attack vs when it remained a shadow. So, I often use energy drinks (any that have caffeine, taurine & 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, to do intervals of jogging and walking are perfect especially if it’s cool outside. I just got Gammacore 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.
Have you ever woken up at 2 am with the “rush” that a cluster attack 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 the longer I have been on preventatives these have lessened, but I still get them periodically. I’m always thankful that it’s not a 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.
It takes about 60 seconds for me to know if it's a ghost, shadow, or cluster attack. So 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?
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