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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> What's your tried and true oxygen method?
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Message started by slacker032 on Dec 18th, 2020 at 8:06pm

Title: What's your tried and true oxygen method?
Post by slacker032 on Dec 18th, 2020 at 8:06pm
So the clusters in this particular cycle seem particularly resistant to oxygen.  I've tried Batch's method of hyperventilating with 30 seconds of room air and also the regular huff and puff method but it's taking much longer than usual or not working at all. 

Unfortunately, I only have a regulator that goes up to 15 lpm but I'm contemplating purchasing a demand valve if it's worth it. 

Any tips?

Title: Re: What's your tried and true oxygen method?
Post by Racer1_NC on Dec 20th, 2020 at 9:45am
Amazon 25 lpm regulator with DISS fitting for a demand valve if you still want one after trying the 25 lpm flow.

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What type of mask are you using?

Title: Re: What's your tried and true oxygen method?
Post by slacker032 on Dec 20th, 2020 at 11:27am

Racer1_NC wrote on Dec 20th, 2020 at 9:45am:
Amazon 25 lpm regulator with DISS fitting for a demand valve if you still want one after trying the 25 lpm flow.

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What type of mask are you using?


Thanks!

I'm using the O2ptimask I bought from this site.

Do you know if the Carnet demand valves are still the gold standard and can they still be ordered from LifeGas?  Also, is there any advantage the Flotec regulators have over that Amazon one you linked?

Title: Re: What's your tried and true oxygen method?
Post by Batch on Dec 21st, 2020 at 3:18pm
The Carnét Oxygen Demand Valve to order is at the following link. They're super easy to use but very pricey:

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You can contact BPR Medical for assistance:
BPR Medical Limited
22 Hamilton Way
Oakham Business Park
Mansfield
Nottinghamshire
NG18 5BU
UK
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The InGage 0-60 lpm oxygen regulator with a single DISS fitting for the oxygen demand valve cannot be beat.  No other oxygen regulator has an oxygen flow rate this high.  40 lpm works great.  60 lpm will blow your shirt tail out.

Of course you can save a lot of money and make your own Redneck Oxygen Reservoir bag system out of a clean kitchen trash bag, a plastic juice/soda bottle, some electrician's tape and Duck Tape.   The DIY and procedures are at the following link. 

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A Redneck Oxygen Reservoir bag system works just as effectively as a $700 Carnét Demand valve hooked up to a $270 InGage 0-60 lpm regulator.

Take care and please keep us posted.

V/R, Batch


Take care,
V/R, Batch

Title: Re: What's your tried and true oxygen method?
Post by slacker032 on Dec 21st, 2020 at 3:23pm
Hey Batch,

If I'm going to use a demand valve, would I still need a regulator that goes that high? 

The cheap one that Racer1_NC linked should suffice since it has a DISS fitting right?

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Title: Re: What's your tried and true oxygen method?
Post by Racer1_NC on Dec 21st, 2020 at 5:33pm
If you are dead set on a demand valve, the cheap reg should suffice.

Here are a couple of links to get you started:
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As Batch says, you can get 40 lpm and a 60 lpm regs. I have a 40 from W.H. Farley and a demand valve as well. Here is a post I made discussing each on a different forum.

Quote:
I have a demand valve, several 25 lpm regs and a 40 lpm reg. My advice is always this...if you have a proper mask like the ones we all recommend here and you can't "outrun" a 25 lpm reg with your effective breathing technique, a demand valve won't help your abort times. Now....what do I mean by "outrun". If you are constantly having to wait for the bag to fill you are outrunning the flow. If there is very little or no wait then you have enough flow for your technique and more flow won't be of use to you.

Now....for the sake of discussion you are outrunning your 25 lpm reg and would benefit from a higher flow rate there are several ways to get it. One is the garbage bag rig which some use but personally I don't care for. Another is the fabled demand valve or just a plain old reg with a flow rate higher than 25. As I stated above I have both. Each has benefits and drawbacks. My demand valve sits beside my bed at the ready for those night time wake up calls. It's easy to reach over, turn the tank on and start huffing. No thought to flow rates, fumbling with dials just grab it and go. To me this is where a demand valve shines. It's good in a car for the same reasons. It does conserve O2 because it gives you no more than you ask for. Drawbacks.....cost. They can be pricey. If money isn't too much of an issue, you believe the flow rate will be of benefit and you like what I've laid out here, go for it.

But before you do, consider this..... A 40 lpm reg can be had for much less than a new demand valve. It will give most people all the O2 they can handle so abort times will be very close if not the same. Yes it does require more thought to dial in and you'll probably be adjusting it up and down more than a 25 but having that extra flow when you need it is great. If dollars are tight, consider this route.

If I were sitting on the couch watching TV and needed O2, I wouldn't step over one to get to the other....but for the reasons listed above each makes sense in their own way.


I hope this helps....

Title: Re: What's your tried and true oxygen method?
Post by slacker032 on Dec 21st, 2020 at 5:57pm
Thanks Racer.  Yeah, conserving O2 would be one of my main reasons for trying a demand valve.  Like I said, this cycle has been particularly resistant to O2 and I'm only getting one or two aborts per E-tank. 

$700 for the Carnét demand valve is pretty steep though.  I was also looking at this one someone else posted in this forum awhile back for $286.

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Title: Re: What's your tried and true oxygen method?
Post by Batch on Dec 21st, 2020 at 9:45pm
I concur with Racer.  Any regulator with a DISS fitting will work with the Carnét oxygen demand valve.

I've likely over $2500 worth of oxygen equipment that's been sitting unused under a bag since I developed and started taking the anti-inflammatory regimen in October of 2010.

Survey results of CHers reporting they started the anti-inflammatory regimen during 2019 - 2020 indicate the efficacy has increased since CHers started switching to the Bio-Tech D3-50 water soluble vitamin D3 and Methyl Folate +.  88.9% responded with a significant reduction in CH from a mean of 3 CH/day down to 3 CH/week in the first 30 days.  That's up from the year over year average of 82.9%. Moreover 66.7% CHers reported a lasting cessation of CH in the first 30 days. That's up from 52%.

As a side note, I've not seen any reports from CHers taking this regimen that they've contracted COVID-19.

The following link at vitamindwiki.com will give you the big picture why having a healthy vitamin D3 status up around 80 ng/mL helps our immune systems fight off infection and not become dysregulated by the SARS-CoV-2 virus floating around everywhere with people coming down with COVID-19.

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COVID-19 treated by Vitamin D - studies, reports, videos
As of Dec 20 had:  36 trials,  4 trial results, 6 meta-analyses and reviews, 35 observations, 18 recommendations, 35 associations, 81 speculations, 29 videos

If you'll read through the studies in the above link or just absorb the info graphics, it won't take rocket science or a degree in molecular biology with years of clinical research to see there is no shortage of real medical evidence from Gold Standard RCTs and meta-analyses proving the importance of maintaining a vitamin D3 status > 40 ng/mL and better yet, up around 80 ng/mL, the target serum concentration for the anti-inflammatory regimen.

Take care and please keep us posted.

V/R, Batch

Title: Re: What's your tried and true oxygen method?
Post by slacker032 on Dec 21st, 2020 at 10:37pm
Thanks Batch.  I'm on your D3 regimen as well. 

Just caught a rogue cycle after catching a cold recently.

Title: Re: What's your tried and true oxygen method?
Post by Batch on Dec 22nd, 2020 at 12:39pm
Hey Slacker,

Rogue CH hits can occur with any of us on the anti-inflammatory regimen if we have an allergic reaction or major inflammation from any cause like colds or infections. 

It appears we've an effective way of dealing with most rogue CH hits.  The suggested steps are load vitamin D3 at 50,000 IU for 4 to 5 days then fall back to a slightly higher maintenance dose.  At the same time you start loading vitamin D3, start a course of Quercetin at and initial dose of 2 grams/day split one gram in the AM and one gram in the PM for two days then titrate the dose up to 3 grams/day (1 gram with breakfast, lunch and dinner).  After a lasting CH pain free response of at least a week, taper the Quercetin dose back down to 1 gram/day.   

As a side note, we need the Quercetin along with 50 mg zinc and 3 grams/day vitamin C on top of the anti-inflammatory regimen to help prevent COVID-19 so there's good reason to continue taking it

The updated treatment protocol will reflect the fact that I've replaced the Benadryl (Diphenhydramine HCL) with the Quercetin as the go-to antihistamine.  Quercetin has none of the drowsy side effects of Benadryl and we can take it as long as needed so there's no week to 10 day dosing limitation.

Take care and please keep us posted.

V/R, Batch

Title: Re: What's your tried and true oxygen method?
Post by slacker032 on Dec 22nd, 2020 at 1:41pm
Thanks Batch.

I actually took a 7-day course of 50,000 IU when I first got sick and then tapered down to 25,000 IU per day which I'm currently taking now. 

I've also been taking Benadryl (every 4 hours) for the past 7 days and Quercetin but only 500mg with dinner.  I'll up that 2 grams and then 3 grams as you suggested. 

I also added 75mg of Resveratrol which you recommended in another thread.

So if I increase the Quercetin, should I stop taking the Benadryl completely?

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