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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Inefficient O2 usage http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1258789122 Message started by slacker032 on Nov 21st, 2009 at 2:38am |
Title: Inefficient O2 usage Post by slacker032 on Nov 21st, 2009 at 2:38am
So the oxygen is working for me but I feel like it's really inefficient lately. Sometimes I'm blowing through a whole E tank or even more at 25 lpm just to kill one hit.
Not sure if I'm doing something wrong. Using an O2ptimask and trying to hyperventilate as quickly as possible. Can someone give me a step-by-step technique I should be utilizing? |
Title: Re: Inefficient O2 usage Post by Bob P on Nov 21st, 2009 at 8:15am
May want to turn down the flow until you find your minimum effective flow rate. For some hi-flow is a must. For me, I can kill an attack in less than 10 minutes at 7 lpm.
BTW - I grew up in Granada Hills. Ex Valley Boy here. |
Title: Re: Inefficient O2 usage Post by slacker032 on Nov 21st, 2009 at 9:10pm
Thanks Bob. I was originally using a 15 lpm regulator but that wasn't working for me at all. 25 lpm is working but it's just taking a very long time and I'm going through a lot of oxygen. Maybe the beast is just being particularly stubborn during this cycle.
Btw, I grew up in Chatsworth :) |
Title: Re: Inefficient O2 usage Post by FramCire on Nov 21st, 2009 at 9:26pm
I am no expert in higher flow rates, but could you maybe need a slightly HIGHER flow rate that might kick it using less actuall O2?
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Title: Re: Inefficient O2 usage Post by Marc on Nov 21st, 2009 at 10:24pm
In MY experience, Eric is on the right track. I also used waaay more total O2 trying to kill CH's with low flows. Now, I use less total O2 at very high flow rates because it works so darn fast.
An E tank holds roughly 680 liters. At 25 lpm, you are pushing 30 minutes of use - too long. I generally can hyper ventilate at about 45 lpm (sometimes much higher is required) but it only takes 3-6 minutes. The attacks that occur about 45 minutes after I fall asleep take 5-6 minutes to kill, but it's very hard to force myself to breath faster than 45 lpm. The daytime hits are almost always gone in 3 minutes because I'm on my feet ripping away at full flow. Fear of what is about to happen if I don't, is a strong motivator. Over the long haul, I would estimate that I use about 250 liters per CH. Yes, people react to O2 therapy differently but for ME, using very high flow rates also reduces the "re-hits" over time. In other words, when using a lower flow rate, I tend to get more hits. The time to kill a hit is very, very important to me because I am a zero to K10 in 5-7 minutes person. The difference between 3 minutes and 8 minutes is inconvenience vs. sheer pain. Once the pain gets high, it is much harder for me to kill. Again, folks react differently to O2. Bob is a good example: He's bigger than I am, but he has a long history of doing very well with very low flow rates. The ability to have virtually unlimited flow and lots of oxygen in huge tanks has radically changed my life. For what it's worth, each CH costs me about 50 cents worth of O2 to abort using welding O2. Marc |
Title: Re: Inefficient O2 usage Post by slacker032 on Nov 22nd, 2009 at 2:02am
Yea, I'm thinking about biting the bullet and getting a 0 to 60 lpm regulator. Thought I could get away with the cheaper 25 lpm but I guess not.
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Title: Re: Inefficient O2 usage Post by Marc on Nov 22nd, 2009 at 8:41am
Have you tried cranking it down to a low flow, then breathing slowly?
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Title: Re: Inefficient O2 usage Post by slacker032 on Nov 23rd, 2009 at 5:28am
Yup, I've tried 15 lpm, 10 lpm and 8 lpm. Still no dice lately.
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Title: Re: Inefficient O2 usage Post by Jrcox on Nov 25th, 2009 at 9:36pm
I am so going to show this to my neuro!
Thanks PFDAN jrcox |
Title: Re: Inefficient O2 usage Post by Guiseppi on Nov 26th, 2009 at 3:02am
Batch doth know of what he speaks! ;)
Joe |
Title: Re: Inefficient O2 usage Post by Bob P on Nov 26th, 2009 at 7:13am Quote:
False. Be careful when stating absolutes. added: Made me wonder if these effects, described by Batch, could be achieved with medication? I've taken Diamox to avoid altitude sickness. It increases the acidity of the blood to help it transport more oxygen. Is there benifit in increasing the alkalinity of the blood with some knid of medication (the Andromida Strain, maybe we should drink Sterno)? |
Title: Re: Inefficient O2 usage Post by LeLimey on Nov 26th, 2009 at 9:18am
But I can abort in 5 - 7 minutes at 15LPM every time?
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Title: Re: Inefficient O2 usage Post by Marc on Nov 26th, 2009 at 9:36am
Bob and I have discussed this at length and I've come to the radical conclusion that folks respond differently to O2 - wow, what a thought.
Fortunately for me, I discovered that very high flow is just short of miraculous for me. I had given up on O2 because "it didn't work" when I had a lower flow regulator. My CH's ramp up very, very quickly so a few minutes in the abort time is a really big deal to me. With high flow rates, they never have a chance of getting high on the Kip scale because they are killed in 3-6 minutes. It is important that both sides of the O2 story be explained to new folks in particular. I can't stand the thought of someone potentially enduring agony simply because they didn't know that they MAY need high flow. Think of all the people who have come here and said that they tried O2 in the past - but it didn't work........ Respectfully, Marc |
Title: Re: Inefficient O2 usage Post by Garys_Girl on Nov 26th, 2009 at 2:36pm
Batch/Marc/Anyone with any thoughts....
Gary continues to not be able to abort attacks with 02. He is clearly someone for whom the 02/C02 exchange is a problem with the C02, as physical activity is a major trigger. He's been on high quality vitamins, magnesium, calcium, Vit D and Zinc for some time, so there should (theoretically) not be a problem with his blood pH. He has had 02 on demand for some time. My understanding this has the effective ability to deliver 02 up to 160 lpm. ???? Anyway, hyperventilating, crunching have still not enabled him to abort an attack. So far, it just increases the level of the attack. Is he just not human? Of course, because of the many asymptomatic issues he's had, at this point I'm not convinced he actually has clusters. Just something that, on the outside, looks a lot like them. Any thoughts or recommendations on other methods of using the 02 - or other supplements, perhaps, that may affect his body's ability to manage the 02/C02 exchange better - or even just differently? Thanks in advance if anyone has any suggestions. Happy Thanksgiving. Laurie |
Title: Re: Inefficient O2 usage Post by Bob P on Nov 28th, 2009 at 7:45am
I agree with Marc. Like most other things, to each his/her own. Marc needs to hyperventilate, Helen has success w/15 lpm, I have success w/7-8 lpm.
I just have a problem with stating absolutes. That's what got me at odds with the Busters in the very beginning. |
Title: Re: Inefficient O2 usage Post by Marc on Nov 28th, 2009 at 8:01am
At least I do it right..... ;)
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Title: Re: Inefficient O2 usage Post by Bob P on Nov 29th, 2009 at 7:41am
but do you do it often?
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Title: Re: Inefficient O2 usage Post by Marc on Nov 29th, 2009 at 5:42pm Bob P wrote on Nov 29th, 2009 at 7:41am:
Depends on what we're talk'n about - answer would have to be: - Not as often as I used to be able to - Way too often - Only as needed Marc |
Title: Re: Inefficient O2 usage Post by Garys_Girl on Dec 5th, 2009 at 4:53pm
Someone suggested looking into blood diseases, one specifically mentioned is haemochromatosis. This is a disease where there is too much iron in the blood, and the oxygen binds to the iron, not the hemoglobin (if I understand correctly). We'll check with Doc when we're there next week.
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Title: Re: Inefficient O2 usage Post by Headache Boy uk on Dec 5th, 2009 at 10:06pm
I'd like to say that I find Batch's post on CO2 levels interesting as i seam to have most of my full on attacks when I'm at work and rarely at the week end .
I guess this is the link between attacks and exorcise |
Title: Re: Inefficient O2 usage Post by -johnny- on Dec 6th, 2009 at 8:15pm Garys_Girl wrote on Nov 26th, 2009 at 2:36pm:
when gary uses o2 does he inhale and exhale all the way in and all the way out? |
Title: Re: Inefficient O2 usage Post by peep_nugget on Dec 8th, 2009 at 12:22pm
I've just started O2 therapy again, and it seems to work. I'm able to abort an episode in approx. 10 mins (plus 5 for good measure). However, it seems that my CHs come back bigger, badder, stronger, faster approx. 2 hours later.
has anyone else experienced this? |
Title: Re: Inefficient O2 usage Post by Garys_Girl on Dec 9th, 2009 at 12:17am
Batch, I always appreciate the detailed explanation. Thank you.
-johnny- wrote on Dec 6th, 2009 at 8:15pm:
To our knowledge, yes. He's tried numerous different breathing methods at this point. And different breathing methods combined with different positions: lying flat on his back, standing up, sitting upright, breathing very deeply in and out... breathing deeply in and out with an "extra" push on the exhale (like a double exhale for each inhale). Then I read up on blood pH, and he tried breathing in and out very rapidly for 5 or 6 breaths, then giving an extra long exhale and squishing forward to like scrunch his abdomen up forcing air out of his lungs and repeating this.. All of this is on a demand valve now. His GP was of the opinion there was no reason to look into blood diseases as he's had so much blood work done that something in his hematocrit would have pointed to further studies. We're at the neuro at Montefiore again next week though, so we'll ask him too. The people at LifeGas mentioned that Dr. Rozen is based in Philly now, so we'll also look into the possibility of going directly to the source, so to speak. |
Title: Re: Inefficient O2 usage Post by gizmo on Dec 9th, 2009 at 3:50pm
From: Pathophysiology of trigeminal autonomic cephalalgias, The Lancet Neurology, Volume 8, Issue 8, August 2009:
Quote:
From: Oxygen Inhibits Neuronal Activation in the Trigeminocervical Complex After Stimulation of Trigeminal Autonomic Reflex, But Not During Direct Dural Activation of Trigeminal Afferents, S Akerman, PR Holland, MP Lasalandra & PJ Goadsby. Headache (2009) 49: 1131-1143 Quote:
Sounds like the vasoconstricting effect of O2 is (mostly ?) irrelevant in the treatment of clusters and that vasolidation isn't the problem either. |
Title: Re: Inefficient O2 usage Post by godsjoy777 on Dec 9th, 2009 at 10:50pm
I don't know much, but I know that O2 at a slower flow rate used to work ok for me but this last bout of clusters lasted for 16 weeks with one ER visit and lots of painful days and nights.
I am fully planning on getting a very high flow regulator for next year and hopefully get a chance to go see Dr. Rozen if at all possible. Thank you Batch for doing so much research. Blessings! karen |
Title: Re: Inefficient O2 usage Post by Skyhawk5 on Dec 11th, 2009 at 12:15am
One more trick with the O2 is to take a deep breath of O2 and hold it as long as you can.
I sure hope Gary finds some help, I know it's not easy for either of you. Often I think, what would I do in his situation? Prayers to you, Don |
Title: Re: Inefficient O2 usage Post by Bob P on Dec 11th, 2009 at 7:54am
You've educated yourself well Batch! And. yes, I do remember the bird on the plane and party lines.
After my last cluster, I did buy a 25 lpm regulator and optimask so I will experiment with your process (if I ever get hit again). |
Title: Re: Inefficient O2 usage Post by Marc on Dec 11th, 2009 at 8:17am Bob P wrote on Dec 11th, 2009 at 7:54am:
"IF" being the key word here, Bob. Here's to hoping you maintain a brand new unused regulator. Marc |
Title: Re: Inefficient O2 usage Post by NovellRed on Dec 14th, 2009 at 9:14pm
I have found that this works best for me most of the time.
1. Get heart and respiration up with vigorous exercise 2. Empty my lungs as much as possible 3. Fill lungs with pure 02 4. Hold in the 02 for 15 ~30 seconds Repeat steps 2 - 4 until you feel the Beast subside or you are convinced it isn't going to work. If it doesn't seem to be working go back to step 1 and exercise harder then try the 02 again. Nothing works the same for everyone, sometimes things that have worked in the past suddenly stop working. Keep trying different methods till you find what works for you. |
Title: Re: Inefficient O2 usage Post by Garys_Girl on Sep 1st, 2010 at 7:18pm Batch wrote on Dec 7th, 2009 at 10:39am:
Batch, did you ever write the follow-up: what happens when things aren't normal? If so, I'll just go search for it. You don't know how much I appreciate the hard work you're doing, the support you've provided, and the REALLY detailed information. "Thank you" hardly seems to cover it. We still haven't gotten 02 therapy to work, but he's ready to try yet again. (He gives it a try every month or so. The main problem is that the failed attempts result in even worse rebounds immediately, so it's hard for him to just keep trying and trying). I am becoming more and more convinced that Gary is, in fact, an alien. ...I will add... that with the fevers he gets, I do think that his hypothalamus is truly just "broken," and perhaps there is nothing that will help. Laurie |
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