New oxygen user, flow rate confusion

[RoseCampbell]

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!

[Dallas Denny]

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 

[CHfather]

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.

 

 

[RoseCampbell]

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.

[xxx]

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

[spiny]

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!!!

[RoseCampbell]

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.

[CHfather]

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.

[RoseCampbell]

He called the welding company to ask if they also did medical, or knew where else we could get medical oxygen. We'll probably go the welder's route. Or, since I can sort of get away with such a low flow rate, I may try a machine.

First here with both? I'm surprised, although my Neuro did say I was "interesting" . I'd be happy to answer questions. You guys have been a huge help for me over the years.

Both HC and CH are one sided, wrenching/stabbing sort of pain. CH has more intense blinding flashes of kill me now. HC is more relentless deep writhing ache. Both have autonomic involvement.

CH is much more accute than HC, the pain comes on faster and is much more intense, then leaves faster. However, it often irritates the HC and kicks off a killer HC flare. After a few rounds of CH battles, my head is pretty painful and the HC becomes almost as painful as a nonstop CH attack.

HC is daily pain, with periods of worsening and lessening intensity, but it never ever goes all the way away. Pain is typically 3-8.5 on pain scale, with a steady 9 on CH days between CH attacks. Just as CH often have cycles, HC often has periods of flares. Flares can last a day to weeks to months with an intensity of 9 in the evenings, often lower, starting around level 5, in the early part of the day then creeping up as the day continues. There are also periods throughout the day where pain may become extrememly intense. Currently, I have no way to differentiate between those moments and CH attacks. If I'm in a HC flare, I just assume it's HC. If it keeps going and I get desperate, I try oxygen. 

The only way I've been able to truly differentiate between the two in the beginning is by using the meds to help differentiate-- indomethacin for HC, Sumatriptan and oxygen for CH. Sumatriptan and Oxygen do nothing for HC, indomethacin at the proper HC dose does nothing for CH.

HC also comes with several other odd symptoms, like shoulder, neck, back, upper arm, and chest pain. HC is also more like a migraine in sensitivity to light, sound, smells, and temperature. Stress brings on HC, the relief of stress brings on CH. Weather changes, hormonal changes, heat/humidity can also bring on a HC flare. Strenuous exercise/exertion brings on a flare. HC has many additional flares, but these are the ones I've noticed being among the most common for all HC sufferers. Vomiting is common. As are: blurred vision, confusion, chronic stupids...

This study explains HC symptoms well and why Indomethacin is the criteria for diagnosis. 

http://www.scielo.br/scielo.php?pid=S0034-70942012000200004&script=sci_arttext&tlng=en

There are people out there who believe they have HC, but don't respond to Indo. In my experience from HC groups, those people typically don't have the "typical" experience of HC sufferers. I would think they should keep looking for a diagnosis that better fits their needs--of course, that isn't often possible.

[RoseCampbell]

Oh! I also have lupus, sjogrens, POTS, Fibromyalgia, and many other tag-a long s, so I've kept my comments about my experiences limited to those I absolutely know are common for HC sufferers.

[CHfather]

Thank you so much for that lucid and helpful discussion of HC/CH.  Now if I can just remember who it was very recently that said they had constant 3-level pain, so I can let him/her know to look into HC.

And, for what it's worth, I'm really sorry for all the crap you're going through.

[CHfather]

Rose, FYI.  Who knows -- Your info might have already helped someone.  https://clusterbusters.org/forums/topic/5183-brand-new-and-very-concerned/#comment-53629

 

[RoseCampbell]

Thank you, I appreciate it!

 

& Thank you for sharing that! I hope it does end up being helpful.