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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.

I can not begin to put into words what it is like to experience clusters. Your poem is amazing.

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

Awesome...

I know this may seem odd. But we have to laugh once in awhile at our cards we are dealt. I have had an attack pretty much everywhere cluster heads have had one....work, home, sex, in public at store.... But I have had some attacks in crazy places in my life, and thought what the heck....share.I cant wait to hear your replies. Ill start..... #1 Jay Lenos Garage #2 inside Johnny Cash's Last Limousine #3 Every concert I ever been too, standing 2 ft from Axel Rose and he looked at me like WTF.... #4 recovery room from brain surgery

Hey All, Thank the money grubbers at photobucket for the missing photos of the Redneck Reservoir Bag. Here they are courtesy of imgur. I used white electrician's tape to make the gas tight seals around the Coke bottle and oxygen tubing. You can see the Duck Tape that seals the open end of the kitchen trash bag. You can use a box cutter to cut the bottom off a plastic Coke bottle. This will become your mouthpiece. Remember to keep the bottle top. These things are amazing. I have a $500 oxygen demand valve and the Redneck Reservoir bag has zero resistance during inhale... Not so for the oxygen demand valve. You construct the Redneck Reservoir from a clean Kitchen Trash bag. Start by cutting the oxygen tubing from the mask end of an old disposable oxygen mask. Insert the cut end through the small hole cut in the corner of the closed end of the trash bag and tape with electrician's tape. Make sure the bottle cap is on the Coke bottle and screwed on to prevent any loss of oxygen. Insert the Coke bottle through the hole cut in the other corner from the inside of the back and tape with electrician's tape for a gas tight seal as illustrated in the photo. Put a strip of tape around the middle of the bottle. This becomes your handle. When the oxygen tubing and Coke bottle have been sealed, place the open end of the trash bag on the kitchen counter and use some masking tape at both ends of the opening to hold the open end straight. Fold the open end of the trash bag over at least an inch then seal with a strip of Duck tape for a gas tight seal. To prepare the Redneck Reservoir for use, connect the oxygen tubing to the barb fitting on your oxygen regulator and make sure the Coke bottle cap is on securely. Open the supply valve on the oxygen cylinder then set the flow rate for 5 to 7 liters/minute until the Redneck Reservoir bag in almost full, then turn off the cylinder supply valve. Check for leaks. You can patch them with the electrician's tape. Your Redneck Reservoir bag is ready to rock n roll... The procedure for use of the Redneck Reservoir bag is relatively simple... Edited to add... Drink an 8 oz glass of cold ice water before starting this procedure. It helps to drink it rapidly through a straw so you get a mini brain freeze. If there's no decrease in the pain intensity by the 4th to 5th complete hyperventilation cycle or 4 to 5 minutes, drink another 4 to 6 oz of water. When you've hyperventilated for 30 seconds (ten complete cycles) per the procedures below, unscrew the bottle cap as you wheeze for three seconds, then place the bottle to your lips and inhale oxygen from the reservoir bag rapidly until your lungs are full. Replace the bottle cap asap after inhaling while holding the lungful of oxygen for 30 seconds. When the 30 seconds is up, hyperventilate for another 30 second then repeat the procedure above. A kitchen trash bag should hold 35 to 40 liters of oxygen so there's more than enough to abort your CH if you use the procedure properly. Rose, meditation is good during oxygen therapy... and it is best done after hyperventilating with room air as fast as you can for 30 seconds then inhale a lungful of 100% oxygen and hold it for 30 seconds... This is where you meditate.... Yes... you might get a little dizzy... I do on occasion... usually after too many Rum & Cokes... That said, I've never passed out hyperventilating with room air or the oxygen demand valve even though I wished that would happen to escape the pain... It never did/does... At the end of the 30 seconds holding the lungful of oxygen, exhale with a crunch then do another 30 seconds of hyperventilating with room air. The exhale part of this procedure is important. Exhale rapidly until it feels like your lungs are empty... They're not. At this point you do the abdominal crunch and hold the abdominal crunch and chest squeeze until your exhaled breath makes a wheezing sound for a second then throw your shoulders back and inhale as deeply from the diaphragm as fast as possible then repeat the exhalation with a crunch in one fluid motion. Ten of these complete cycles in 30 seconds should start to push your body into respiratory alkalosis... (Remember the movie "The Andromeda Strain") On the tenth exhalation, hold the squeeze/crunch until your breath makes a wheezing sound for at least 3 seconds... or until you stop wheezing... This will squeeze out another half to full liter of exhaled breath that's highest in CO2 content. You'll know you're doing this procedure correctly when you feel a slight tingling or prickling on your face, lips, hands, lower legs and feet. This is called paresthesia. You may even feel a slight chill across your back after inhaling the lungful of oxygen and holding it as the capillaries in your skin constrict forcing the blood deeper and allowing your skin to cool. Guess what??? the same thing is happening to the capillaries in and around your trigeminal ganglia where the CH pain is originating... The vasoconstriction is part of the abort mechanism that stops the CH pain and ends the CH attack. Rose, if you sing the 'Hallelujah Chorus' from Handel's Messiah at Christmas, you have the breath control to use this method of oxygen therapy as there are several places where you need to inhale a lungful of air in less than a second in order to maintain the tempo... This procedure is not for Bo Peep, but rather for the Wolf who Huffs and Puffs to blow down the pig's house of sticks... In short you huff and puff like a big dog if you're doing this oxygen therapy procedure properly... The meditation comes while holding the lungful of oxygen for 30 seconds... If you're good at this and you will be with a little practice while pain free before your next hit, you'll feel the CH pain start to drain away on the 4th or 5th cycle... Why hyperventilate during oxygen therapy? The answer is simple once you understand a little about respiratory physiology... For starters, hyperventilation means ventilating the lungs more and faster than normal. What this does is blow off CO2 faster than your body generates it through normal metabolism. Once you've reduced the CO2 content of your blood, a few things happen... Less CO2 dissolved in the blood means less acid as CO2 dissolves in water to make carbonic acid... that also means the blood becomes more alkaline (the opposite of acid) and this elevates blood pH - a measure of acidity. The elevated pH and lack of CO2 are detected by chemical receptors in the aortic arch and brain. These chemical receptors in turn signal the lungs to slow the respiration rate, the heart to beat more slowly and capillaries throughout the body to constrict (narrow). All this happens to slow the flow of blood to the lungs in order to allow the CO2 level to rise back to normal... However, as we are intentionally hyperventilating, the lungs keep pumping out more CO2 and the pH goes even higher until we inhale the lungful of 100% oxygen. At this point the elevated pH causes blood hemoglobin to dump CO2 rapidly as it passes through the lungs. The elevated pH also cause blood hemoglobin to have a greater affinity for oxygen so the blood hemoglobin uploads more oxygen than normal creating a hyper-oxygenated blood flow to the brain. The low CO2 and elevated pH cause capillaries in and around the trigeminal ganglia to constrict. This vasoconstriction coupled with the hyper-oxygenated blood flow is the basic mechanism that aborts CH. If you follow this explanation this far you'll see that it is impossible to pass out while hyperventilating... Your squash (brain) is being loaded with more oxygen than normal and this will keep you wide awake... What happens after the CH abort? Simple... we start breathing normally and this allows the CO2 levels to rise and the oxygen levels to drop back to normal... All this happens within a minute or two after you stop hyperventilating... There's one more thing to remember... Oxygen therapy is only an abortive and not a preventative.... Accordingly, your next CH will usually hit right on schedule so you'll need to go though all this again. Some CHers complain when the pain free period ends and that this method of procedure isn't worth the effort... To that I say, balderdash! Seven minutes is the average abort time using this method of oxygen therapy. When you consider the average CH attack lasts anywhere from 30 to 90 minutes... 23 to 83 minutes of pain free time is a very good deal compared to the alternative... Rose, check you PM inbox. I've left you some additional information to discuss with your PCP or neurologist. You'll find my PM by clicking on the envelop icon in the blue border at the top right corner of this page. Hope all this helps. Take care and please keep us posted. V/R, Batch

Awicher...hiya and welcome...you're in the right place....and aint no such thing as a "rant" in clusterville...we all been there When episodic and in cycle I used to get BLASTED at night...8 times...once per hour..so I may have compensated by becoming a light sleeper. Anyway, I would set up my O2 buddy right next to me...turn the dial to 0 and crank the valve open. The instant I was awakened I would slam the mask on (non rebreather purchased from ch.com...my FAVORITE possession!) and turn the dial up all the way (easier than trying to find the valve handle and fumbling in the dark). For some reason...also I know not why...these hits were more subject to successful O2 abort than day time hits (perhaps learning to wake before the hit got too bad, dunno).....5 mins or so and I could go back to sleep. Ya gotta work the mental aspect too. YMMV...this is what worked for me: Early on I used to get all agitated... screaming, thrashing, cursing, pacing, sweating, ADRENALINE by the bucket full. Learned the HARD way this was getting me NOWHERE...for any hit at ANY time...life got a whole better after I figured that out. Next I realized besides remaining calm I needed to remain "not fully awake" which allowed me to go back to sleep nearly immediately. Left the lights off, kept my eyes closed, stayed on the edge of the bed with minimal movement, and most importantly concentrated on BREATHING only...no thoughts of anything else....'breath in-breath out" rinse and repeat.... Finally....the next morning...on the way to work....rather than cursing the bad luck of constantly interrupted sleep....I rejoiced that "HEY...I got 6 hours last night" (which was WAY better than before)......it got to be a game that me and the beast played. Attitude...it's all in the attitude... CH as well as life................ Best Jon