My DH is an episodic CH sufferer since 2011 and he's going through a tough cycle. O2 is and has been critical to his treatment - He has a 0-15 lpm regulator - which is turned to 15 and a non-rebreather mask. He catches it as quickly as possible and stays on a bit longer after its subsides - but it is taking much longer to work and is much less effective than previous cycles. I purchased the Linde mask on this site today - but I really want to find the demand valve system and a higher lpm regulator. Spoke with Linde/LifeGas today and was very frustrated to learn they will not deal directly with a patient (or the very demanding wife of the patient) - and I was told I need a middleman to make a purchase. I wanted to show her exactly what a headache felt like as my husband was writhing in pain in the next room. Needless to say, I hung up and have been scouring the internet since. Any recommendations on reliable high flow regulators and the best demand valve packages and where to find them quickly?

BTW, he started the D3 regimen today, so I am hopeful that will kick in soon and take us to remission. He just can't go back to the drugs (immotrex, relpax, etc) as they were almost as debilitating as the CH, in a different sort of way. and O2 worked so well before...

Thank you for all of the incredible info and support - Thanks to you we have learned so much to help him (and our family) through this!

Hi CHRD
First of all, thank you for supporting your husband. It's what he needs the most.

A welders regulater ? I don't know much about it myself, but I know others use them. There is a tab on the left of your screen (highlighted yellow) called "oxygen info" Have a look there for some guidelines.

As for the D3 and all it's co-factors, I get mine from iherb.com in California. They do all the large doses that we need and are very reasonably priced. Even with shipping here to the UK they are much cheaper than I can buy here.

Hope this helps
Maz.

Is there a Harbor Freight tool store where you live? They should have a regulator you need. If they ask why you need it just tell them you are learning to weld.
Thanks for being a great supporter.

Thank you for your replies- I have the vitamins under control- its the demand valve and regulator that have me puzzled. I think I read everything I could on both via this site- but did not find the details I need to know I am choosing the correct equipment. For instance- do i need a regulator with a demand valve? If I do, will the industrial regulator fit/work with a medical application? Does it have the DISs? Fitting? In fact, do I need a special fitting for it? And when finding the demand valve, it seems there are different types-which is the type I need? It would have been great if Linde/LifeGas was helpful since they provide it in a package- but that is not the way They are listed. Is the demand valve the same device as used by firefighters for resuscitation? I am afraid I will do him harm,so I hoping for a shopping list, if possible. I found a regulator last night that fits the M or H tank that goes to 25lpm, with DISS, but is 25 enough? I promise to put the shopping list together for others, with the best places to find them- but I need some help getting there myself, so any additional direction is appreciated!
Btw- i have asked the O2 supplier, but they are learning as I do, so no guidance from them.
Thank you again in advance for amy help you can provide!!! Sorry for any tupos/ odd sentences- doing this from an iphone and I am not so good at that...

Hang on,I'll have John answer your questions.

                Potter

Hey CHRD,

You and your husband have taken the right steps starting the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 as a preventative and obtaining oxygen therapy as an abortive.

Based on feedback from hundreds of CH'ers here at CH.com taking the anti-inflammatory regimen and data collected from a separate online survey of 127 CH'ers also taking this regimen, I'm confident your husband will respond.  The odds are better than 85% in his favor. 

Remember to have your husband start the vitamin D3 loading schedule.  It will help insure the fastest favorable response time possible.

Regarding oxygen therapy...  The single biggest reason CH'ers have problems obtaining rapid aborts, ~ 7 minutes to a pain free state, is too many neurologists don't know how to instruct CH'ers on its proper use. 

Fortunately, I can help.  In 2005, after turning chronic, I developed a method of oxygen therapy that involves hyperventilating with 100% oxygen at flow rates between 25 and 60 liters/minute.  The average flow rate used during this method of hyperventilating with 100% oxygen was 40 liters/minute.

I also hold a patent as a co-inventor of the demand valve method of oxygen therapy we developed in 2007.  That involved modifying the initial method of hyperventilating with a 0-60 liter/minute oxygen regulator to work with the oxygen demand valve.

In 2008 we conducted a pilot study of these two methods with 7 CH'ers each logging their abort times and pain levels on every abort for 8 weeks.  In all, we collected data on 366 aborts with these two methods of oxygen therapy.

In addition, one study participant collected data on his aborts with a 0-15 liter/minute oxygen regulator and non-rebreathing oxygen mask for one week to provide a relative comparison between methods of oxygen therapy with and without hyperventilation.

The results were impressive.  The abort rate effectiveness was 99%, the average abort time for CH between pain levels 3 and 9 was seven minutes, and all but two aborts took less than 20 minutes of oxygen therapy using either of these two methods.  The results of this pilot study are illustrated in the following chart.

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In 2012 I developed a third method of oxygen therapy to abort CH that involves hyperventilating with room air for 30 seconds then inhaling a lung full of 100% oxygen and holding it for 30 seconds before repeating the complete sequence 4 to 5 times for a complete abort to a pain free state.

All three methods are equally effective.  This last method, hyperventilating with room air for 30 seconds then inhaling a lung full of oxygen and holding it for 30 seconds has several advantages. It works exceptionally well with 0 to 15 liter/minute oxygen regulators. Abort times average 4 to 6 minutes and it consumes much less oxygen.  This also significantly reduces the cost per abort.

A typical abort with an oxygen demand valve, 0-60 liter/minute regulator or even a 15 liter/minute regulator consumes an average of 150 to 200 liters of oxygen. 

This latest method consumes an average of 25 to 35 liters of oxygen per abort.  That means a fully charged E-size oxygen cylinder that usually contains enough oxygen for 3 aborts at 15 liters/minute can last for 15 to 20 aborts.

You prepare for this last method of oxygen therapy by standing with the jaw dropped like saying the word "Haw."  Standing gives the diaphragm full range of motion to better ventilate the lungs. You also set your regulator so if fills the ClusterO2 green reservoir bag in one minute.  You'll need to remove the face mask so you can breath directly from the 22 mm port on the green "T" manifold opposite the exhaust port shown in the photo below.

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You'll also need to cup the exhaust port on the green "T" manifold in the palm of your hand and press the breathing port to your cheek or chin to form a gas tight seal.  This will allow the reservoir bag to fill completely between breaths of oxygen. 

If the reservoir bag fills completely and oxygen starts pushing out before you're ready to inhale, lower the regulator flow rate.  Conversely, if the reservoir bag hasn't filled completely when you're ready to inhale the oxygen, raise the flow rate.

Start this procedure by exhaling rapidly and when it feels like the lungs are empty, they're not... do an abdominal crunch like doing situps and hold this squeeze until the exhaled breath makes a wheezing sound for a couple seconds. Without delay, inhale a lung full of room air rapidly and fully then repeat the forced exhalation.  This technique is called breathing at forced vital capacity lung tidal volumes.  It forces out an additional half to full liter of exhaled breath highest in CO2 concentration.

Keep repeating this sequence for 30 seconds.  If you doing this properly, it should work out to 10 complete respiration cycles in 30 seconds.

On the 10th exhalation, hold the chest and abdominal squeeze for a good five seconds then inhale a complete lungful of 100% oxygen from the ClusterO2 mask and hold it for 30 seconds. 

It's important to try to relax at this point.  You'll also experience some of the symptoms of paresthesia, a slight tingling or prickling of the lips and finger tips along with a slight sense of dizziness.  You'll also likely feel a slight rush while holding the lungful of oxygen.

These symptoms indicate you've pushed yourself into respiratory alkalosis...  and that's the goal.  If you feel too dizzy, lean against a wall or sit erect in a chair.

Keep repeating this entire sequence until the pain is completely gone.  With practice this should take 4 to 5 complete sequences...

This procedure and breathing technique are very safe.  Although you'll feel a little dizzy, there's no risk of passing out as you're super oxygenating your blood stream and lowering it's CO2 content at the same time.

Practice makes perfect.  Be sure to practice this procedure before the next CH so you can recognize the symptoms

Take care and please keep us posted.

V/R, Batch

What the curmudgeon said above.

              Potter

Wow!!  You guys/gals are amazing -- Thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Batch - I previously read your post on hyperventilating, (with the various levels of O2), but my husband was apprehensive at first, so I was waiting to suggest it again. Unfortunately, he was stuck in a meeting this morning - w/o oxygen - and had a very bad CH episode. He called me a little while ago and, w/o any prompting from me, said he wanted to try hyperventilating as soon as he returns home.

Regarding my Demand Valve/regulator search, I also got through to a different person at Linde today. I was so much better armed when I called, the person who initially answered thought I was a doctor. I did not dispel the myth, so they would connect me to someone who was more  knowledgable. and guess what - the person I was transferred to said she could deal with the patient directly in her department, so I came clean... She is emailing the information to me now on what/how to make the demand valve purchase.

And lastly, I spoke with an old friend, who is former firefighter - he is working on it too.

Once I have the demand valve and related equipment in hand, I promise to draft a step-by-step guide for all of the supporters out there so they know where to turn and what to do. I have learned a lot over the years - but even more in the last 48 hours. Before yesterday I thought "DISS" meant treating someone with contempt. I know there are more like me in need of a layperson's checklist.

Regarding the Anti Inflammatory Regimen - we are both doing it. I am not "loading" in the same manner he is - but I thought it would be helpful for both of us to vitamin-up together.

I have one more important question as I am sure everyone has experienced this -- What do you do when you are away from your oxygen? Its one thing to keep a tank in the office - even in the car (if its not too hot), or to arrange for it on a trip. But what happens if you just don't have it with you? Or, is it, when you are in a cycle, you always have oxygen nearby?

Thank you, thank you,  thank you, thank you for all of your help and support - I can't wait to pay it forward!

CHRD, my husband was very resistant to hyperventilating as well. He did try it slightly, though, and found that it did help.

My husband didn't really have a solution for getting an attack when he didn't have O2. One time he did find that it helped to take a VERY brisk walk.

CHRD wrote on Sep 3^rd, 2014 at 4:33pm:

I have one more important question as I am sure everyone has experienced this -- What do you do when you are away from your oxygen? Its one thing to keep a tank in the office - even in the car (if its not too hot), or to arrange for it on a trip. But what happens if you just don't have it with you? Or, is it, when you are in a cycle, you always have oxygen nearby?

It is all about planning. When in cycle I have my main O2 supplies at home, but carry around in a backpack a smaller cylinder which goes to work or will sit in the car when elsewhere, so I'm normally no more than a few minutes walk away from it. If I'm somewhere where I can't take oxygen, like when flying, then I'll have my sumatriptan injections with me (always in my laptop bag). I've also arranged to have it available when flying overseas or if I'm away somewhere from home for a while.

Part of the planning is also about when you get a CH away from home where you'll go to use it as I'd rather battle a CH with a bit of privacy, so I keep a mental note of empty offices, meeting rooms, staircases and similar places that I can retreat to for a few minutes.

I also tend to cache energy drinks around locations where I frequently visit like around the house, cars, office, etc.

One can also assemble a cheaper alternative to the demand valve.....

Order a mask from this website and a 40 LPM regulator from START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE <<==== this place with a regular hose barb fitting. This will work on your post type medical tanks. Make no mistake, a demand valve will flow more than even this set up, but for many people this works like a charm at a less painful price.

Second option is for a welding tank type fitting. As BobG has pointed out, Harbor Freight has a regulator that many have found very useful. This ===> START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE together with a mask from this website will give any human more O2 than they can possibly take. If you can out run this regulator, please contact me. Together we will grow rich.

I am all about planning too. I ordered a few backpack sized travel canisters.  The O2 supplier said he won't get much out of them - but if he combines it with air HV, he should at least be able to abort one quickly.  Thank you Mike!!

Feisty - I will let you know how HV works for him. Apparently today, he got into a cab and had the driver blast the A/C on his face - didn't sound like it worked - so he was quite happy I ordered the small tanks and dug his backpack out.

Hopefully the Vitamins kick-in (Day 2) and the mask I ordered from this site yesterday arrives soon too - he's already ditched the flimsy non-rebreather the O2 supplier gave him and has opted for the hose in mouth method.

I actually ordered the WT Farley regulator yesterday - should arrive tomorrow - that was before I knew about the welder's gauge. I don't have a harbor freight nearby - but it the 0-40 doesn't work, I will find one!

Thanks again and again for everyone's support!

CHRD wrote on Sep 3^rd, 2014 at 7:38pm:

I am all about planning too. I ordered a few backpack sized travel canisters.  The O2 supplier said he won't get much out of them - but if he combines it with air HV, he should at least be able to abort one quickly.  Thank you Mike!!

I tend to get 4 or 5 aborts from a back back sized cylinder with a 25lpm regulator and hyperventilating. Good technique saves oxygen with a quick abort which means less pain and less disruption. Whilst I know I could get more from a larger cylinder, I want one I can carry around without looking too obvious or too heavy.

I also ensure that the back pack has other CH related supplies like energy drinks and tissues for when your nose runs like a river.

DH had a really awful night and I don't know what to do. He was woken multiple times with horrible pain. Oxygen used to work, but it does not seem to be aborting them - it might take them down a decibel or two, but it is not making it stop - and it seems as if there is a line of them ready to go. Perhaps because he is episodic, and his last bout was over a year ago, we are remembering things differently. But I think this time is different - and adding exhaustion to the pain of a CH can't be good.

here's his protocol - please help!!
1. He is in loading phase of vitamins - tonight will be his third round. He is taking them with dinner since that is our largest/most regular meal. He added melatonin last night too hoping for a restful sleep.
2. He is using the non-rebreather mask we received from the O2 supplier - or going straight from the tube. The mask from CH.com arrives Friday, according to tracking info - so we need to make the best of his current method for one more day - unless I can find something else today.
3. He is taking in 15lpm as that is the max on the current regulator. The WT Farley 0-40 regulator should arrive this week - I begged them to rush it - hopefully they did. I will call them this morning to find out when, and/or purchase the one from harbor freight that was recommended so he has it today.
4. He always drinks caffeine in the morning and periodically during the day - but not at night and has never added caffeine for CH. Should that be part of the regimen? when and how?
6. He tried hyperventilating yesterday - but with the current mask, it was not as effective as it might be otherwise. If you don't have a proper T - and the bag doesn't fill well - is there another way to achieve the result? and if we can't rig something, where/how can I get my hands on a better mask today?

Please let me know if you have any other suggestions.

Is it possible, since he had a really bad one - w/o O2 yesterday, this backlash of aftershocks was inevitable as it never really left his system? If so, how do we break this cycle within a cycle?

He is completely drug free - should we revisit that? are there any drugs (injections or otherwise) that don't leave you feeling drugged? Other than caffeine - he is a non-drug person - we don't even drink - so the drugs he was prescribed in the past really hit him hard.

What are shadows? I see that referenced by many folks?

When loading the vitamins - is it possible the headaches get worse before they better? Sort of like an exorcism in his body and the "beast" is fighting to stay? I know that sounds foolish, but there has been a change in this cycle overall (pre-vitamins) - and the number of episodes (especially at night) has increased in the two days that he has taken the vitamins. He won't stop taking them - but it would help to know if this happens. Should he take them at a different time of day, perhaps? Should he load faster/slower? (and no, we did not have his levels pre-loading - but he has never taken a vitamin, and doesn't eat fish/dairy/cereal, so I am sure they were low). We will check them post loading though.

any suggestions are greatly appreciated - and as always - thank you for your support and guidance!

Hey CHRD,

While you're waiting for the ClusterO2 kit to arrive and if either you or your husband are handy with DIY projects, you can build a Redneck Oxygen Reservoir Bag Breathing System for a couple bucks.  They work great...

All you need is a clean 40 gal trash bag, the oxygen tubing from your old disposable oxygen mask, an empty plastic Coke or Juice bottle (with cap), some Duck tape and some electricians tape.  The following graphics should help in this DIY effort.

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Fill the Redneck Reservoir Bag ahead of time.  If you've constructed it properly, it should hold oxygen for a few days.

When the next CH hits, turn on the oxygen supply and remove the bottle cap as you go through the first 30 seconds of hyperventilating with room air. 

Use the same breathing technique and procedures discussed earlier and remember to exhale away from the Coke bottle mouth piece and press the mouth piece to the cheek when not inhaling to form a gas tight seal.  Your husband will be surprised at the lack of inhalation resistance sucking oxygen from the redneck reservoir bag.

Roughly 10% of CH'ers who start this regimen experience an up-tic in the frequency of their CH.  The good news is this condition lasts less than a week or two for most CH'ers. 

I don't know why this happens, but suspect it involves the immune system which can consume 25(OH)D at high rates leaving too little to prevent CH.

As your husband is already on the loading schedule, he's getting plenty of vitamin D3...  Try adding another 400 mg/day of magnesium.  Have your husband take it in the A.M. if he's taking the rest of the regimen with the evening meal.

Your husband may have a low arterial pH (too much acid) so starting the GOMBS diet is also a good idea. A low arterial pH triggers vasodilation and that makes just about all CH medications less effective. 

A GOMBS diet will help elevate a low arterial pH, increase serum alkalinity and this should make both oxygen therapy and the anti-inflammatory regimen more effective.

GOMBS stand for Greens, Onions, Mushrooms, Beans-Berries and Seeds & Nuts.  A handful of each a day is a great start...  You can find some great GOMBS meals at the following links:

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Take care and please keep me posted...

V/R, Batch

Batch - Thank you!

I will let you know how he does.

CHRD wrote on Sep 4^th, 2014 at 7:58am:

When loading the vitamins - is it possible the headaches get worse before they better? Sort of like an exorcism in his body and the "beast" is fighting to stay? I know that sounds foolish, but there has been a change in this cycle overall (pre-vitamins) - and the number of episodes (especially at night) has increased in the two days that he has taken the vitamins. He won't stop taking them - but it would help to know if this happens.

That seemed to happen with my husband. On the other hand, it may be that people only start the Regimen when they are desperate and know that the clusters are getting worse - you know what I mean? I first started seriously researching the Beast at 3 AM when I felt utterly desperate about the pain that my husband was going through. It was his worst cycle ever.

I would follow Batch's advice above.

feisty wrote on Sep 5^th, 2014 at 7:17pm:

CHRD wrote on Sep 4th, 2014 at 7:58am: When loading the vitamins - is it possible the headaches get worse before they better? Sort of like an exorcism in his body and the "beast" is fighting to stay? I know that sounds foolish, but there has been a change in this cycle overall (pre-vitamins) - and the number of episodes (especially at night) has increased in the two days that he has taken the vitamins. He won't stop taking them - but it would help to know if this happens. That seemed to happen with my husband. On the other hand, it may be that people only start the Regimen when they are desperate and know that the clusters are getting worse - you know what I mean? I first started seriously researching the Beast at 3 AM when I felt utterly desperate about the pain that my husband was going through. It was his worst cycle ever. I would follow Batch's advice above.

I have read a number of your posts Feisty and thought, at times, you had read my mind - I really appreciate your advice.

Just a quick update and continued appreciation for all of the help and support we received:
DH is on Day 16 of the Anti Inflammatory Vitamin regimen and as a result, he is 97% PF. He has had a few early hints of headaches, but has been able to abort them quickly with the O2/hyperventilating regimen (see batch's post above) - and he is never without O2.

We have an H and an M60 at our home, plus several M7s so he can easily carry one or more via backpack when he is away from the house. (his worst day ever was 2 weeks ago when he got stuck w/o access to O2 and he had several episodes, one after another - that will never happen again).

The Cluster O2 mask we purchased through CH.com, is the best. DH said it made all the difference. We have 2 of them - one for travel and one for the house:

plus, we have the following regulator from Amazon:
gp/product/B0069819VQ/ref=ox_sc_sfl_title_1?ie=UTF8&psc=1&smid=A3BWLZRDNHULQP

We are both taking the vitamins, every night with dinner - He also takes melatonin at bedtime. And we have all of our fingers and toes crossed too (for the utmost precaution...)

I can't thank you all enough - I don't know what we would have done without you! We wish everyone 100% PF lives - and we will continue to post progress and our support and help for others. THANK YOU!!

Just saw this thread. I'm a fellow NYC resident. I can direct you to an o2 supplier who I have found to be very reasonable. I have two of the largest tanks, office and home, and do drop off and pick up myself. Let me know if the o2 is being costly.

birdman wrote on Sep 20^th, 2014 at 5:19pm:

Just saw this thread. I'm a fellow NYC resident. I can direct you to an o2 supplier who I have found to be very reasonable. I have two of the largest tanks, office and home, and do drop off and pick up myself. Let me know if the o2 is being costly.

Thanks Birdman - actually, the O2 seems fairly reasonable - we use Lincare and we either pickup ourselves or they deliver to our area once a week. When he was in the thick of it, I drove to them a few times a week as we did not keep enough O2 on hand. But, luckily, by the time we really stocked up with the largest tanks and the portables, the vitamins kicked in and (knocking on wood while I write this), I am incredibly pleased to report, he has been CH free this week.

This definitely was his worst cycle in terms of severity of pain - but the shortest in terms of overall duration of the cluster cycle. I know it was the vitamins that saved him as it is the only thing he did differently. He does have better masks this time and a more powerful regulator - but those simply abort the headache - they don't stop the cluster cycle. The anti inflammatory regimen was the key - and we will take it for the rest of our lives. I put the vitamins on auto refill with Amazon (they even carry the Kirkland mature multi), so I don't have to worry about running out.

I hope I can continue to report in periodically with glowing updates - and I would love to help others too. We are true believers - I gave the link to our doctors too, so they know where to go to get the best information.

again - Thank you!

Birdman - pls check your PM - perhaps we can help you

Roger that, so happy he has found relief. I'm hoping some finds its way to my neck of the city

Batch, question.  You say to adjust your regulator up or down depending on how long it takes to fill bag etc. What I have been doing most recently is just turning my regulator completely off while doing the open air inhale exhale and turn on just before I am about ready to inhale the O2. It fills in about 2 seconds so I can inhale the full bag turn it off and repeat.  This way it seems I am using very little O2.  Am I doing something wrong? Admittedly since I have been doing this my kips are only 4-5 and during the day time when I have more control of my faculties and not at night when awakened by the demon.
Ernie

Hey Ernie,

What you're doing sounds logical and as long as it works... there's no need to change anything.

However, if the reservoir bag fills in 2 seconds, and you're using a welder's O2 regulator, it appears the output pressure is set too high. 

I set the output pressure on a welder's O2 regulator for an output pressure that fills the reservoir bag completely in 30 seconds.

When using a medical oxygen regulator I set the flow rate at 6 liters/minute...  That fills the 3 liter reservoir bag in 30 seconds.

In a pinch when I was on travel and my oxygen regulator was home...[smiley=JAW_DROP.gif]  I used the oxygen cylinder supply valve to fill a 13 gallon kitchen trash bag (my redneck oxygen reservoir bag)... Even cracking the supply valve open just a little, filled the trash bag in 4 to 5 seconds...

Hope this helps.

Take care,

V/R, Batch