You come in from work; makes a person feel good to have gotten something accomplished. You shower, eat and sit down at your favorite thing to relax and enjoy the evening for a while. Then you notice the shadows, your mind goes on total alert, you mind searches every nerve every feeling inside you to make sure if possibly you are wrong. You dismiss the feeling saying it is your mind playing tricks on you the shadows are not really back. Your heart speeds up you know what they bring, you can handle the shadows, but what they bring will cause you terror. You don’t say anything to anyone it is hard to explain to people. Maybe one or two know, they try to understand, they try help, and they truly care. Once you let someone in, let them see what the shadows bring, what you become they understand part of the terror the shadows bring. They understand the shadows are the bringers of something much worse. They are just the bringers of the beast that will cause the pain, destruction and total despair. They can’t see, hear, or feel the shadows so it is hard for them to understand they just know they bring something that once gets there it will be the total destruction of you, who you are; the person they know will cease to exist.

It is getting dark, the fear in you starts, the shadows are close waiting for you to drop your guard waiting to get in you head. That is when they turn the most terrible thing you have ever known loose in your brain. You know if you fall sleep it not take them long before they slip inside and start their evil work of bringing your destruction, bringing you total despair. You fight sleep until you are exhausted and can not fight it off any longer. You have gotten all of your battle items ready they are on nightstand, in the bathroom, in the kitchen all over the house. You have dealt with the shadows and what they bring many times before. You are ready for the battle to the best you know how. You are exhausted, afraid but have to sleep, have no choice must sleep. So you turn out the light lay your head down and close you eyes praying the shadows do not make it inside your head.

Then thirty minutes or an hour maybe two later who knows, you awake from you sleep. They are getting in, you can feel them coming in you’re your right nostril. Your right nostril stops up solid like its glued shut. No way to stop them now they are in and now they have turned loose the beast in your head the one thing cause you more pain, more fear, more terror  than anything you have known in you life. The beast starts tearing at your temple. Then the beast tries to push your eyeball out of your head. Then the pain increases more and more you think he has a jackhammer trying to break thru your eye into your brain the pain is just so intense. You reach to the nightstand get the cold wet washcloth to put on right eye. You get up go to the bathroom more water needed, stick your head under the faucet cold water more cold water all that goes thru your head. Not helping you get the washcloth wet with cold water leave the bathroom head for the stairs. You need space to walk and pace. You are putting so much pressure on your head you think it going to bust your skull. You pace for a minute do not help at all the pain getting stronger the beast is having a good time at you expense. The beast likes to hear you beg, you won’t, and you not giving in yet still have fight in you. You decide best thing is take the battle outside, so you head toward the door. It does not matter you are wearing pajama bottoms, no shoes, no shirt and it 25 degrees outside with snow on ground. It doesn’t matter at all. You have defeated the beast like this before. You open the door the cold feels good. You walk barefoot out on the snow kneel down put your hands on the snow. Stick your face and head in the snow for a couple minutes it helps you are winning this battle. The pain easing some you sit there in the snow cold shivering thinking. You stay out here try figure out how long you can stay there before too long. You notice your face, hands and feet are numb from the cold now, but the pain is a lot better, at least can bare it like this. You get up stagger in house go to frig get ice put on eye and temple rubbing around in circles. You sit looking around the room. From the past times you know when the beast has you like this, look from one thing to another in room very fast only fix eyes on one thing for a second or two will help keep the beast busy. Finally you are exhausted you sit back in chair put the ice in a bowl you already put out earlier. You feel better the pain almost gone you are ready go lay down again your exhausted so weak barely make yourself get up and move. You get to bed look at clock it is 1:30 am time to try get some sleep. Then you think just maybe you won this one well enough the beast not come back, but you know in your head the beast is not done with you yet. You really believe you will be back up between 3:30 am and 4:00 am dancing again. You lay down to sleep once again hoping one thing and pray no more dancing with the beast tonight please let me rest.


I look up it 3:45 am and the SOB is back he still wanting dance why the hell he not leave you alone for just one night, just a few hours of peaceful sleep is all you ask. You get up and go to the bathroom grab washcloth, then upstairs fast grab ice. Put the ice on your head start the circles, you think the beast really pissed this time, you won the last one, he is going to make you pay good this time, this time the pain more intense than before. You start go outside then realize you have ice in your hand.  So you start pace around in circles in one room then the other. You notice yourself cursing your brain. Asking what did you do to get this every night. The pain gets more intense by the second which in turn makes you angry over the pain. You pace for a while then you finally kneel down take your hands put on each side of the coffee table. You lean over and slowly bang you head on the table not hard but just enough to try making the beast look other way stop for a second give you a chance to catch your breath. The beast ignores it, so you bang harder and a little faster rhythm. Try getting him to stop the drilling into your head. You beat head harder still nothing then you sit up put your hands on the sides of your head and squeeze your skull with all you have, tears rolling down you face. You are now begging God to please make it stop over and over while you rock back and forth like a child. You take your hands make a fist and beat the sides of your head gradually harder and harder. You are just trying beating the beast out of your head. The pain is too much, got to find a way to get some relief. Wait my nose starting to open up, starting to run and drip. You start to laugh some still sitting in floor, your hands on each side of your head still rocking like a child. Then within two to three minutes the beast is gone. You try to stand up but you are so exhausted so weak from the battle hard to stand or walk but you manage to make it back to the bed. You look at the clock it is now 4:25 am. You try decide if you should try to stay up or try sleep, is the beast going to come back at 6:30 am - 7:00 am or will he leave me be. Finally you have no choice body makes you go to sleep. The next thing you hear is the alarm clock at 7:00 am time gets ready for work so you drag your butt out of the bed try get ready. Everything is in slow motion because you are so tired. You try clean up your mess from the dancing all night. You try act like all is normal maybe the shadows will not show up today maybe you have run them off and that way they can not bring the beast to me tonight. You know from the past they will be backing most likely. You also know each night you dance you get a little weaker; a little more exhausted a little more withdrawn. But you are a strong person, you survive the meanest, cruelest and most terrorfying beast that man knows and you do it several times a day for months at a time. For anyone reading this that does not know or understand what I am talking about the beast is called a cluster headache. For those who live with the beast or have loved ones that suffer the beast wrath I have one thing say. You are the bravest, strongest individuals known as far as I am concerned. My hat is off to you. You have my greatest respect.

See I have suffered from cluster headaches since I was 23, I am now 52. I have gone as long as 7 years without session. I have had sessions last 16-17 weeks with as many as 16 CH in 24 hours. I am lucky in that with mine a long CH is 45 minutes with the average peak time being around 10-15 minutes. The shorter ones seem to be a lot more intense as do the ones at night. The shadows for me are terrible, I know they bring the beast, I know what I am in for. I have dealt with them for so long. I am lucky that I can control mine to a point, if I am awake, I can hold the beast off, hold it at bay so to speak for couple hours, but the down side is normally they more intense when I do. As of the last session nothing I have tried in the way of medications has been any help so far. Since I am a heart patient some they rather I not take. I have tried several of them and the O2 not help when had some in the hospital once before. All I can say is this session has lasted 6 weeks now with mine getting up to six CH a day now. I hope and pray not last much longer. The only thing I have seen that seems to help during the peak is cold, such as the ice or the snow. Many times I have just walked outside no shirt just shorts or pajama bottoms and sat in the cold air seems to shorten them. Another thing I have found to help with them is to sit calmly deicide let it happen not fight it look around room focus on one thing then the other. Not move my head just my eyes focus on a small light on the television switch then the clock then the dvd power light. Then I will sit with hands on my head try relax the harder I fight it sometimes the worse it gets. I know as the session continues the weaker I get, the more withdrawn I get, the more exhausted I get. Finally they danced enough and leave me alone for months or even years. I found this site and like it much is good to know others care and understand. Thank you and Best of luck to all.

MasBass welcome to the board. What you describe sure sounds like what I see my dear husband (guiseppi) experince. They're just horrible.

Have a sit and read the info we have here. Do tell us if you've tried any prevent methods - if not, perhaps some mentioned here are worth discussing with your doctor. Seems like you're riding out the dance, have you tried 02 to abort the hits? And if you've tried before and it didn't work, read up on what we have posted about it. So many doctors haven't prescribed it correctly.

Let us know how we can help.

Christy

Yes i have tried several medications to prevent and to stop them. The O2 i was in the hospital for with a heart issue and they had me on 100% O2 and did not phase it at all. My last session was in 2008, I have been through several doctors my GP who is great tried several of the meds with no help. He got me in touch with a head doc, as i call him, who put me on one but was at end of session so we were not sure if it helped or not. I made call today to try get it refilled (of course he is out of town my luck), they going to send the script info to my GP so he can get it started until he gets back. He told me in 08 the most promising med he had seen for CH in 08. So i will let everyone know what I find out.
yes I have danced many a night away in 29 years. Learned much, like do not let them give you nitro cause they think it cause you BP up, take all the fabreeze, candles, fabric softener sheets, scented oils anything with a strong odor out of the house and tell everyone not bring them until session over, oh no onion either, i learned not crazy just a little mentally disturbed LMAO

well said.. You try to carry on normally during the day, but after a few months, the beast gets the best of you and you wonder how long it will be before its leaves, even if it just for a few months of solace.

Welcome to the board! If you're getting the wake up hits, do look into melatonin, an OTC sleep aid available at health food and vitamin stores. Look for this formula as we've seen best results with it:

n-Acetyl-5-Methoxytryptamine

Start with 10 mg about half an hour before bedtime, give it a few days to see if it works. Many are avoiding the wake up hits this way.

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Take a second and read this link as many have tried 02 in the past only to find out they weren't using it correctly. Took my 90 minute rides down to 6-8 minute aborts.

Glad you found us, read like crazy. An educated CH'er hurts a lot less. :)

Joe