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Welcome 01/25/2017
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Oh, good topic. I've found that, most of the time, the worry of having an attack somewhere produces enough stress to fend off an attack. But when I get home, when I can let my guard down and relax, that's when I get hammered. So although I've had attacks at friend's houses or at work, they've never been really horrific ones. But while driving, that's another matter. I can't count the number of times I've pulled over into a layby to wait out an attack.
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Was your husband calling the welding company about getting welding O2 instead of your medical O2? That could turn out to be a more affordable solution for you (cost of tanks + refills + between $45 and $65 dollars for regulator and mask (~$45 is you use a standard mask; ~$65 if you get the mask specially designed for people with CH). Since you're the first person who's been here who has both HC and CH, I have three questions that might help some other folks down the line, but I know you're busy figuring things out, so if this isn't a good time to answer them, I completely understand. (1) What's the difference between your HC attacks and your CH attacks? (2) Does oxygen help with your HC attacks? and (3) I assume it's indomethacin you're taking for the HC -- or is there something else? Quite often people report things to us that at least make it seem like they might have HC even though they have been diagnosed (or self-diagnosed) with CH, so any info that would help sift through that would be great. And we always say that HC is treatable with indomethacin, but that it can be quite hard on the digestive tract, so that's why I'm curious about what you're treating it with.
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Thank you for all the information, Batch! Many of those I was doing, or tried, plenty I haven't yet tried. Thank you! I am such an idiot! I forgot that last month, I'd moved down to 5 to see how little I could get away with using--not because it was the only level I could handle with the higher levels making me vomit. Idiot that I am, I only remembered the vomiting and unsuccessful oxygen times, and entirely forgot that I'd set it so low just to see. Good grief...The times I'd vomited from using the 15 flow rate were times I was having HC (hemicrania continua) attacks at the same time as the clusters. HC makes me vomit, and makes the breathing techniques as described so well by Batch nearly impossible. I'm on meds for HC now, with it 75% under control. My clusters today were HC free, so I was able to use the oxygen without any of the problems I'd experienced before. Thank you so much for the tips! I just got the bill for my oxygen today, it is a seriously dishonest company with a total monopoly (or so we though) they flat out wouldn't tell us how much it would cost before running it through our insurance first. (Last time I needed something from them, I fought with them for hours trying to get an out of pocket cost, they refused. I didn't bother fighting this time.) It is completely un-affordable for us. I'm so angry. Plus: They implied we'd be billed per tank of oxygen (by saying: we can't say how much it will cost because that will depend on how much you use, etc.) , but we just found they go by a flippin' flat rate. No matter how much I use, the price is the same per month. So, all my effort to try to use as little as possible only helped their bottom line. No wonder why they were so "helpful" suggesting I try to restrict use as much as possible. Supposedly, in our area, Norco is the only place we can get medical supplies from, but after calling a welding company, my husband was given information of another company that actually does offer medical oxygen. They're working on giving us estimates now, including an estimate for tank purchase and refill (something Norco refuses to allow--flat rate rentals only). I knew oxygen would be spendy, but I didn't realize how spendy.
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Well I know I remember my first one... riding down the road standing in the bed of a roofing truck in 1979, it was not an odd place but boy do I remember it..
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#4...it was a bitch.......................................
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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
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Thank you, Spiny. My vocabulary is growing daily. I'll do some reading on "shadows". I'm definitely keeping my appointments. I want to figure this out. Thanks for the tip with the pupils. I'll give it a shot
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That 'zero resistance' is pretty darn important for me. I can't go hard if there is resistance from the reservoir. Free flow of O2 = better abort!!!
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Sounds like you are having what are referred to as 'shadows'. I would grab some caffeine for that. Generally we take shadows to mean 'ain't gone yet'. Maybe on its' way out the door, but not gone. Keep your appts. They will understand if they know anything about CH. Two months is a very common length of cycle for many people. You want to be prepared for the next one. Or this one if it decides to revert to the mess you were in. There is no way to know for certain as long as you have shadows. I hope this is a sign that the cycle is ending!!! The neuro should understand. If not, then I would not return to him! He needs to know that you need to be prepared for a return bout in advance. Here's a little trick to try. Go into a low light area with a mirror. Look at your pupils. Are they the same size? Do they dilate at the same rate? My CH eye pupil gets to where it will not dilate nearly as much as the other one. Actually, after all this time, it stays a tad smaller than the other one at all times. Anyway, the neuro I have seen uses the bright light method. Shines it in each eye and watches. Last cycle, I forced him to cut the lights and look. That showed him the difference. Covered one eye at a time and watched them dilate. Viola. It may or may not work for you.
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I have no problem getting back to sleep. Most probably don't. I recall one member saying that they could not. Actually, out of cycle, I will have caffeine about 6 or 8 pm. Just don't want a rogue hit at midnight due to barometric pressure drops. For me, they will come. With caffeine and O2, the pain is gone in 10 minutes most nights in cycle. Then it is back to sleep till the next one. I also spend many nights sleeping in the recliner. Head above my heart. It helps. I wake sooner when hit too.
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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 migrainerus. Take care, V/R, Batch
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So, it has been 4 days since my last attack. I'm super grateful for that since I am an electric lineman and working really long hours right now to restore and repair after Irma. I had my MRI done yesterday and am going to see a neurologist on Wednesday. I have never been so confused over a test. I really do not know what I want the results to be. It sucks. Even though I have not had an attack for four days, I just feel "off". Not sure if it is fatigue from working long hours or if this is what it feels like when a cycle is broke and going in remission. I constantly feel as if I'm going to have another attact at any second. Pressure in my temple area, sometimes slight pain, congestion in my one nostril that comes and goes. Is this signs of remission or am I just getting a break? All opinions are welcome. Thanks all
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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
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Thank you for the tips! Sorry for the jumbly post--my brain is mush from a HC flare. I do use caffeine and find it helps. I'll try the bigger bag idea, thank you for the link! I've been waiting to buy the clusterbuster mask that has the mouthpiece option. Thank you for sharing your experience, Dallas Denny, I'll move it higher up my priority list.
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I'd bet that you're right and the pediatric mask has a bag that's too small. I don't know that for a fact, and I'm not sure I completely understand the situation you are describing (I think maybe there's a typo in there that's throwing me off). Pulling away to take deep breaths is of course harming the process, since you're getting room air into your lungs that now has to be expelled. Some people remove the bag and instead attach something bigger -- an unscented turkey roasting bag, for example, or an unscented garbage bag. There's a description of a different method here that includes creating a different bag -- https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ -- but unfortunately the images are not appearing, at least for me. I'm going to contact Batch and ask him what we might do about that. If your physical condition can handle it, many people start on the O2 with some strong caffeine -- a strong cup of coffee or, usually better, some kind of "energy shot" (such as 5-Hour Energy) or "energy drink" (such as RedBull). That almost always speeds abort times. If there are open holes in your mask (a circle of small holes not backed by a gasket), be sure they are blocked when you inhale, so you're not taking in room air.
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G'evenin Rose! 15 minutes isn't bad for an abort time but it can work quicker....I typically abort in 5 to 8 minutes. My technique is standing by my tank....I exhale forcefully when the bag is full (I use the mouthpiece that comes with the optiO2mask as I can't tolerate anything touching my face during a hit), and then I do a mini crunch to force as much air as possible out of my lungs and then suck as much O2 as possible....hold while the bag refills and repeat. Dallas Denny
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Hello all, after 25+years of clusters (22 years after first diagnosed) with almost no medical help, I've finally found a great doctor who prescribed oxygen for my clusters. I'm set up with a non re-breather, 15L flow rate valve, and massive tank. My question is, I can't breathe fast enough for the 15 rate to do much more than blow in my face. I have learned to breathe slowly and go into a deep meditative state during attacks. When I tried to breathe faster, I just ended up with my head spinning and puking. I slowed the rate down to 5, at that, it fills the bag, then I breathe in the entire contents of the bag. It usually fills again before my next breath. For me, this works to lessen an attack and sometimes abort it after 15 minutes. Although it works, I have a (not so sneaky) sneaky suspicion that I could get faster/better relief by doing something or other differently. For those using a higher flow rate, are you actually able to breathe in all that air that fast? Or is that not the point? Even with the 15 rate, I was having to pull away from the mask for a deep breath every few minutes as the air in the bag wasn't enough to satisfy my lungs. The short fast little breaths I was getting through the bag were too short and too fast. At the lower flow rate, I'm better matching my natural RPM, but still having to pull away every so often for a full breath of air. I should mention, I'm tiny and using a peds mask as the adult mask was too huge. Is the problem likely that the bag on my peds mask is too small? I have a muriad of other health issues that cause my breathing to be naturally slow and shallow. I constantly set off the RPM alarms in the hospital. Usually 9-11 RPM Any advice would be greatly appreciated!
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Tis a question of adaptation...eventually got to the point where I could drink a caffeine beverage right before bed and fall asleep no problem....but didn't need to. We are all different so maybe keep a journal and look for a pattern.... It's rarely spoken about now but I remember in the 80's reading an article in National Headache Foundation newsletter advising Doctors that "clusterheadache patients tend to present with a journal/diary of their headache experience"...it was a diagnostic tool...imagine that. We tend to be detail oriented/obsessive/compulsive perhaps? Now the info in the journal is considered more important...... And re "riding the devil"...with O2... the ride is OVER much quicker
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Chicago 2017 was great glad I was able to experience it. My 2nd conference and plan on more thanks to all for the support and help !!!!!! Thanks Bob and all that made it happen!!!!! Once again I learned a lot, got to know lot of new people and you all keep me thinking positive that relief is around the corner and help me learn to fight thru it !!!!! Thanks All !!!!
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Great. I assume you might discuss with your wife what might be the best approach. Needless to say, a lot of doctors don't like patients doing their jobs for them, even when that's warranted.
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Does the caffeine keep you awake after the hit is over? That's what I'm worried about if I'm slamming caffeine at 2 in the morning. As it is right now I can usually fall sleep when it starts to come down. I just have to ride the devil for an hour or two first. Sucks, but at least I can sleep after.
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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.
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Jon, Ive definetly noticed that staying calm and not thrashing around is helpful. I let myself get worked up sometimes and I just end up waking everyone up, smashing into things, and generally just making it worse.
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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.)
