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Cluster Headache Poem


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No Escape

 

Today is like any other,

Yesterday, today & tomorrow, all blur together.

Day in and day out, everyday the same,

I wish I could escape this game.

 

The Beast visits most when least expected,

My face drains of colour, and I feel quite infected.

Into one eyeball, always just the one, the Beast comes,

Blinding and piercing like I’ve been poked hard, with a thumb.

 

My eye seems to freeze as if turned to ice,

And the pressure builds as if placed in a vice.

My nose starts to run and my eye begins to tear,

As my body is gripped with fear.

 

Red hot nails, they pierce and twist in my eye,

The burning is such that I wish to die.

Sharp blades cut and rip through my skull,

As I pace the room and bang my head on the wall.

 

I can feel my cranium crack,

As all my world turns to black.

For one hour or maybe two,

How long it really lasts, I dare not tell you.

 

For all that time, I pace and I walk,

Sat on my bed, back and forth I rock.

I suck on oxygen and drink caffeine,

I can be quite snappy and downright mean.

 

But eventually the nails are removed, as are the blades,

And the pain within, all but fades.

I am drained, I am spent,

My energy is at zero percent.

 

I need water, I need food,

But instead, I lay here unable to move.

I take one deep breath, and maybe two,

Before the next symptoms ensue.

 

Then the crying truly begins,

As my body shakes from my bones to my skin.

I am racked with hot convulsions in wave upon wave,

To this terror I am now but a slave.

 

Eventually, even this fades to a whimper,

As my body begins to shiver.

Wrapped in a blanket I raise myself up,

Sloshing some water into a cup.

 

Today was like any other,

Yesterday, today & tomorrow, they all blur together.

Day in and day out, everyday the same,

Oh, how I wish I could escape this pain.

 

 

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Thank you Batch.

One day, I'd love to perform it (or get a good actor to perform it) on stage. I think it would be very powerful. 

I might have to approach the local amateur dramatics people and see if I can find someone interested. 

MG

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Thank you Mit. :) 

Here is the best description I've come up with for my cluster headaches, that usually gets, at least a partial, image across to non-headache sufferers. 

Most people have experienced a muscle cramp, which often occurs in their calf muscle. So I ask them to think back and remember what their last muscle cramp was like. I ask them to remember how sharp and fast it came on, suddenly, out of the blue. I remind them of the level of pain, that was so all consuming they were unable to think about anything else, even to come up with a solution to make it better. That level of pain consumes and focuses the whole body and mind for the 30 seconds or few minutes that it lasts. 

Then, I ask them to imagine what it would be like if the pain were doubled. And then, to double that pain again, so now it is 4 times as painful. Then, I ask them to relocate that pain to the inner corner of the eye ball, right where you would get hit by an ice cream headache. And lastly, instead of lasting 30 seconds, imagine it lasting 1 - 3 hours, and there is nothing you can do to stop it, predict it or lessen the pain. 

I then say that what they are imagining, is just a shadow of what a real cluster attack is like. And there was a time when I could have 4 or 5 such attacks in a single day. 

MG

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  • 7 months later...

I wrote this poem early last week laying awake while dealing with shadows..

 

Theres a room inside my head

with the devil locked inside

I'm not convinced that he wants out

but still every night he tries

 

He bites and chews on every nerve

and carves his name into the wall

He plants his back and digs in his heels

and tries to push out my eye ball

 

 

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  • 10 months later...

Gave me goosebumps and almost made me cry, very vivid imagery. The one I use to try and describe it, is ask them if they have ever hit their thumb with a hammer or really badly stubbed a toe, if they remember that one instant of peak, brain flashing, breath stopping pain, which usually then quickly subsides to relatively normal pain. I tell them to think of that, freeze that pain at it's peak, then have it for a few hours. Or simply say imagine a large hook, through your left temple, through the back of your eye, exiting just above the eyebrow, now, someone has the end of that hook and is pulling a steady pressure, just short of pulling it through the bone and out.

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9 hours ago, Brain on fire said:

As a poet I love this. As a performance artist I love this. As a cluster headache survivor I love this. Keep this one going!

Thank you BoF.

What I'd love to do, at a Cluster Buster's Conference, is have someone read it out on stage while a performer acted it out. I think it would be a really strong visual. 

Mox

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Devonrex,

A good descriptor of cluster pain that I've used before, that you just reminded me of...

Think back to the last time you had a really bad muscle cramp, which most people will have gotten in their calf muscle. Remember how the pain came on suddenly, how it crippled you and how it drew in 100% of the focus of your mind. All you could think about was the pain in your leg and how to stop it. Now, double that level of pain. Then, double it again. Then, relocate it to your eye and have it run at that level for 3 hours. 

Mox

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2 hours ago, Brain on fire said:

Mox the idea for the conference rocks! Poetry is always best read by the writer. Are you coming to the conference?

Probably not this year. I'd love to come to one though. But probably won't make it back to the States for awhile. Sadly

Mox

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