Below is a story I wrote years ago when I tried to get my new wife to understand the ungodly pain that she was sure to witness. Maybe some of you can find it useful in your lives.

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My love, you have heard me talk about these "headaches" I get, but there is no way I can adequately tell you the pain that they inflict on my body. But I want you to know how they hit me and how I feel during this time. You'll hear me call it the "beast" or my "demon" at times. These are just my pet names for the pain. So here goes my attempt...

My nose begins to run, my neck stiffens, my pupils dilate, and my eyelid droops ever so slightly. The beast has returned. Tonight it has returned with a fury so intense that my right eye feels like it is about to explode. I writhe in agony as the pain pulses from my eye through my skull to base of my neck. Each drive of the hammer through my eye feels like my head is going to explode. Dealing with this for 20 years, you would think that I would know how to handle this pain. Unfortunately, nothing I can do or take will give me respite - drugs make it worse later. The only relief I can find is to create pain in another area of my body in an attempt to distract me from the menace inside my skull. Luckily, I have learned to avoid this destructive behavior in general, but in a rare moment of weakness, you may witness me banging my head against a door jam or other hard surface. Instead, I will clasp my hands behind my head and try to crush my skull between my forearms.

You will see my cry. You will see me pull at my hair (what little is left). You will hear me scream in pain as I beg to the gods for relief. My body will be full of such rage and energy that I cannot sit still, my legs might even bounce like a child needing to pee. I will pace the halls. Do not leave me in quiet. I need noise, preferably loud music, to distract my thoughts from the pain. I will not lie down. If you make me crawl into a bed, I will thrash about like someone possessed. I cannot sleep, do not ask me to. The fear of the monster’s return will not allow me to sleep. I want to see the bastard coming when he arrives so I can fight him with every fabric in my being.

Amazingly, this all will occur in less than an hour. As quickly as it came, it will leave. Do not feel relief that it is over and let down your guard. The beast will return. I may have one hour or a few before it rears its ugly head yet again. We will continue our battle for my sanity. These epic battles will continue for usually up to three days. The uncertainty of the beast is almost as bad as the pain. Will he return now or is he done with this round of torture? Once I am certain that he has had his way with me, I will collapse into a fatigue that will take me days from which to recover. I will sleep for hours on end if I can. If I am unable, I will be like a walking zombie until my body recovers.

Too many times my family and a few friends have had to witness the beast take control of my life. I do not like anyone seeing me live through these episodes. I apologize in advance if I scream at you – I almost certainly will. I will demand that you leave, do not do so. I will need your love and support as I battle the beast. I know that the first few times you witness these attacks, you will be frightened. The fear is understandable.  There may even be times that I will beg you to take me to the hospital. If this is the case, call my father and speak with him. He has witnessed this since I was six and can tell you what to do. Sadly, I cannot, because the pain has always consumed me during these trips.

As long as I avoid bodily harm, these are not life threatening.  I hope that it will be years before you witness the beast, but I doubt that it will. Above all else, remember that I love you.

The emotional impact has been the toughest on her for sure. She's used to helping people and alleviating their pain, but for this she's just helpless.

If it's a rare daytime attack for me, she'll take the kids out away from the house for the day to give her and them a comforting distraction. If it's at night, she'll give me space and occasionally check in to make sure I'm not beating my brains silly.

As I have gotten older now and I have 3 kids, I have learned to do the dance in a more "quiet" manner where i don't scream bloody murder like I used to.

There's not much I would change in the letter. Instead of the hospital, I would add in notes about the melatonin, valerian root, etc. that we have tried with varying degrees of success.

As far as hospitals go, I grew up in a very small town that had a decent hospital. I knew each doctor and half of the nurses on a first name basis. They were aware of my clusters and knew some of the recommended treatments. But since I moved away a few years ago, I no longer have that benefit

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So beautifully written....honest and straight from the heart.  Wow!!  Thank you for sharing this with us.