I posted a similar post to this one on another site a while back. You may have seen it, and you may recognize part of it, but…I think it bears repeating.
It might help someone else.
I suffer from Horton’s Syndrome. It is a form of Classic Chronic Cluster Headaches usually found in men. The cluster headaches started UP about 12 years ago. In the rare cases when women have them, they often say it’s as bad as childbirth. I won’t make that claim, I’ve never given birth, I’m a man, and that would be presumptuous.
The pain is excruciating. And comes out of nowhere. No real warning, just a slight burning in the nose and then Bang! There they are.
They are unilateral, one side of the face and all. And they are really not headaches, but face aches. My teeth hurt, my nose burns, my tongue burns, and my head throbs.
I have one now. And I’ve had it for 10 days!
They make me unpleasant.
Some would say grouchy.
Some would say intolerable.
Some would say things I can’t put in print!
The real cause isn’t known. But there are things that exacerbate them. All the things that are supposed to be healthy for me do the trick. Avocados, walnuts, strong cheeses, DARK CHOCOLATE, many of the things I love, many of the things that are good for me. They make them kick in.
Some last for a few minutes. I take OTC pain killers, a mix of Excedrin, Tylenol, and Advil along pure oxygen from a tank and with an ice pack on my face, and I can usually get them to go away…for a while.
I use a product called “Sinus Busters” too. They aren’t sinus headaches, but they mimic them, and “Sinus Busters”, which is made of capsasian C aka pepper spray, and burns like crazy, can knock them out for a while.
The worst one lasted for 57 days. It was horrid. I wound UP in the ER.
The headache pain and experience is depressing, and we Cluster heads call it “dancing with the devil”.
You have suicidal thoughts. It would just be easier to die than live like this.
After the headaches subside, or go away completely, the depression kicks in. I don’t know if it’s that way for everyone, but for me, it’s deep, dark, and devastating.
The anger gets turned inward. For years, no one, and I mean NO ONE believed I was in as much pain as I was.
I was “emotionally fragile”, overstating it, being weak. Faking it.
But I was in pain, and I was depressed.
And even now, when they go away, I get dark, I get depressed.
Therapy helped. The doctor I saw showed me a few “tricks” to use on myself to bring me out of the funk that the headaches leave me in. I refused medicine. I have an aversion to alcohol or any possibly addictive drug, so I steered clear of all that.
Walking helps. With cluster headaches, a dark room, quiet, solitude: they don’t do the trick. There has to be light, noise, action, movement. So I walk, I read, I write.
And I talk. Talk to anyone who will listen, keep company, and keep the dark thoughts away. I usually try to steer clear of telling the listener what’s going on with me, it just scares them off. And I need them. I need the interaction. I need the company, I need the comfort. I need to avoid the anger. I need to keep from turning on myself.
So, talk to me, tell me your story, hell, tell me a lie. I don’t care. Listen, and talk.