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.

Quote:

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's an interesting problem a lot of us have where the emotional impact on the partner being as much of a problem during the cluster as the cluster is. I know there are a lot of posts dealing with the subject, but how does your partner cope, and what strategies do you use to help her?

How would you revise your letter now if you had the chance to write it again, and what would do you verbalise these days?


Quote:

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.

Has hospital ever helped? In Australia, even the oxygen is limited to 15LPM and the abortives take hours to get via the hospital pharmacy. ER/ED takes up to 14 hours to get through, especially at the time of night I usually get the most horrific clusters (Friday and Saturday nights at 10PM aren't good for queuing). Driving is impossible with a bad cluster, and being driven isn't much better. Hospital staff aren't particularly good with males younger than 35 in particular (beginning not to be a problem for me), or those they think are drug seeking - so what makes hospital even an option, never mind the desirable one (e.g. wouldn't you curl up in bed and thrash around there instead if possible?)

thanks for posting!

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 :(

theacerbic1 wrote on Oct 3^rd, 2013 at 10:41am:

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. ------------------------ 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.

Your Letter is as gripping as a hit of the Beast can be.  Thank you so much for sharing.  I would like to repost this on Facebook (giving full credit obviously) with your permission, please let me know.

PFDAN Wishes!!   :)

I am honored by your comments. Feel free to post.

Shared and proudly done.  The words fellow CH'rs come up with at times still astounds me  8-)

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

I always find posts like this hard to read, especially those that really hit on the emotions and pain that you go through during a hit. The more accurate the writing, the harder it is and this one really hits the mark. So well done for writing so well.