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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

Hey Doug, You've got the Michigan Headache & Neurological Institute (MHNI) 47 minutes away in Ann Arbor, MI. This is one of the top headache centers in the US with a medical staff of experts in treating patients with primary headaches. It might be worth giving them a call. It appears Dr. Joel R. Saper is accepting cluster headache patients episodic and chronic for studies of a new intervention, likely one of the mAbs tested earlier on migraineurs. Take care, V/R, Batch

My wife used to work at the clinic I go to about 4 years ago so we know a lot of people there, and I've known my doctor for probably 5 years. If I show him good information I think he will take the time to look at it. Getting an appointment is difficult because he is usually booked two weeks out. I wouldn't see anybody else at that office, it would be a waste of time.

Yes, at least try to get oxygen from your GP. They have some kind of book or online reference that they are supposed to refer to when treating things they're not familiar with. One of them is called "Up to Date." You can see here that it recommends O2 first: https://www.uptodate.com/contents/cluster-headache-treatment-and-prognosis?source=search_result&search=cluster+headache&selectedTitle=2~41 Any such reference will have oxygen listed as the #1 evidence-supported abortive (along with injectable Imitrex). Do you know someone at the doc's office, a nurse or assistant or something, who you could contact before your appointment to look it up? This is a link to the core study of the effectiveness of oxygen: http://jamanetwork.com/journals/jama/fullarticle/185035 Maybe you could send it over in advance, or at least bring it with you. To be honest, some of us theorize that doctors don't prescribe oxygen in part because they don't know how to prescribe it. The prescription should read something like "Oxygen therapy for cluster headache. 15 minutes at 15-25 lpm with non-rebreather mask." Ideally, the doc would fax it to a medical oxygen supplier, but even if s/he gives it to you, you can call suppliers on your own. (The "15-25 lpm" in there is an attempt at an end run. Most doctors who do prescribe O2 will only prescribe up to 15 lpm, but 25 is better, so it's worth a try if you have any voice in what gets written.)

Most of us old timers are all about educating neurologists about CH... The sad fact is CH is so rare, most neurologist have never treated a patient suffering from CH, let alone have a CHer present with an actual attack... Dr. Todd Rozen did a survey of CHers then added the insight that from his perspective as a seasoned headache specialist having worked out of the top neurological headache institutes and centers, that most neurologists have never treated a patient with CH during their entire career in neurology... The path of least resistance is usually the best course of action. Take a copy of the anti-inflammatory regimen CH preventative treatment protocol to your PCP and ask for the 25(OH)D lab test. It's a very safe bet your results will come back < 30 ng/mL and for sure < 40 ng/mL. Ask for the Rx for oxygen therapy. The script should read "Oxygen therapy at 15 to 25 liters/minute with a non-rebreathing oxygen mask as an abortive for cluster headache." If I'm correct, pick up the needed supplements and get started. When your appointment comes up with the neurologist in October... you'll have something new to talk about. Please let us know when you do start this regimen as there can be a few bumps in the road that are easily taken care of if we know you've hit one. Take care and please keep us posted. V/R, Batch

Thank you guys for the information. I really appreciate all the work everyone does here to help people figure this thing out. The shocking lack of public awareness to this condition is really pretty amazing. I was shopping neurologists this week looking for the right doctor and I would ask the schedulers who they had who specialized in treating cluster headache. And of course the response every time was "well all of of our doctors can treat headaches." And I then very politely told them that was not what I asked. Finally found my way to the recommended doctors list here and found a neurologist that had confirmed positive experience with this. Of course he can't see me until the end of October. I was originally going to go to my primary who diagnosed me 4 years ago and go back on verapamil which worked pretty well for me in past cycles, but in the last year or so I have become more wary of doctors and there obscene over reliance on prescription drugs and would like to avoid them if possible. Things like oxygen and vitamins sound like a far better way to go if they work. Should I see my primary and just bring him the information he needs to get me the right treatment. Seems ridiculous that people with CH literally have to educate their own doctors in order to get appropriate treatment. When I was diagnosed initially, there was no discussion about the various methods of treatment. It was verapamil and imitrex. End of story. I guess I was lucky that my GP was able to identify it at all since he had a patient that also had CH so he was at least a little familiar with it. I have a neurology appt on October 25th, but in the mean time I should probably see my Primary and do a test for vitamin D and try to get a script for oxygen, yes? If he will do it that is. I have heard people have had problems getting GPs to prescribe it. They look at everything through the "we have a drug for that" prism. Yea, I don't like doctors very much. This was kind of a rant, but thanks for listening.