Hello Team,

My 5th year arrived with what I'm going to call my MEGA CYCLE. I had been an every 3rd year kind of guy, but in 08 I found this site and shortly after that I found cluster-busters. I had been living the dream. Well my 02 tank ran out about 2 weeks ago, so when I called to have it refilled cause we're back to  2 a nighters and a daytime hit at 4.30, the kind lady who works for the company who has been sucking my insurance dry for $187 a month told me that my new insurance was no longer covered in their network and they would be taking their equipment back and help me find a new supplier. Thanks...

So the new supplier said  I need a rx for the 02.. So that meant making an appointment with the doctor who I haven't seen in 5 years cause he told me that the cluster-busters method was just "plain silly". Well lets just say he was thrilled to see me. Blood work... Pee sample... I stopped him at the MRI by telling him that just 5 years ago we went though all this shit and I was not going to do it again for us both to tell him that I had CH!!!!

Now  after all that, the med supply company just called me and told me there was no such thing as a regulator that goes up to 15Lmp. She told me that they don't even make that cause it would bursts my lungs. I almost laughed my ass off when I heard her say that. I told her they do make them, and its got me a bit concerned about the know how of this new supplier.

I will not get caught up in this crap. The Doctor seem dumbfounded at the fact that I didn't want the pred taper, or the trex, or the Topamax. I should not have to feel ashamed for not taking those Meds. Just give me my 02 and I will beat this shit right back where it came from!!!

I now have a better understanding and compassion for those who are less fortunate then I.

Coach Bill. 8-)

Nice to know I'm not the only one with a medical supplier who doesn't know regulators can go up to 15 lpm.  ::)

Sorry to hear of your hassle getting a high flow regulator. My doc would only go 8 lpm so I went to amazon and brought a new one that goes to 25lpm, no questions asked. Good luck getting set back up with O2.

Lars

Hey All,

There are plenty of oxygen regulators capable of 25 liters/minute for $25 to $40 over the Internet 

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You can also order a 0-60 liter/minute regulator from Flotec for ~$170.  Contact Flotec about the InGage™ 0-60 liter/minute regulator at the following link:

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Tell them Pete Batcheller sent you and that you're a cluster headache sufferer... They'll know what you need.  Shoot me a PM, email or Skype if you have questions.

The idiots you're talking with only know about supplementary oxygen for COPD sufferers... They are clueless when it comes to using oxygen therapy as an abortive for cluster headache.

If you want to educate them with FACTS print out the following link and fax, email and hand carry to them...

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If you run into a brick wall... and the bastard bureaucrats get you down...  screw them and go get some welder's O2 along with a welder's O2 regulator... 

You can get a great welder's O2 regulator good for flow rates high enough to blow your shirttail out at Harbor Freight Tools for $35. 

You'll need to go to a welding supply outlet for the welder's O2...  DO NOT TELL THEM HOW YOU INTEND TO USE IT!!!

Order the Cluster Headache Oxygen Mask from here at the CH.com store link at the left in yellow...  They're great!

No insurance for welder's O2 but the CoPay (~ $30 for an M-size O2 cylinder), is about the same when all is said and done after you buy the cylinder...

If you've still got questions, shoot me a PM with your email address...

If you want to avoid oxygen therapy with an 80% probability you'll never need it again...  read through the following link...  The anti-inflammatory regimen is very effective in preventing CH...

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Take care and please keep me posted.

V/R, Batch

I remember being told that they don't make regulators that go to 25lpm and if it did then it would make your blood boil when being supplied with oxygen via the health system. Luckily I had my own personal 25lpm one I'd purchased to show that they do exist and the fact that I was alive indicated that it doesn't boil your blood.

I was having a conversation with a nurse and the use of O2 for CHs came up. I told her my portable regulator went up to 25lpm and she said no such thing existed. I pointed to my rig in the corner and invited her to take a look. She refused, insisting I was wrong. Sigh. Coach, get your own and O2 anyway you can. Let us know how this goes for you. blessings. lance

GREAT post as always Batch. Bill....my favorite story was the WAREHOUSE  FOREMAN at the oxygen supply house I was using....back when I was paying out of pocket......this clown tells me there is no basis for breathing pure oxygen to stop cluster headaches. The freaking warehouse foreman......I didn't even try to explain! ;D

Joe

Guiseppi wrote on Dec 11^th, 2013 at 10:08am:

GREAT post as always Batch. Bill....my favorite story was the WAREHOUSE  FOREMAN at the oxygen supply house I was using....back when I was paying out of pocket......this clown tells me there is no basis for breathing pure oxygen to stop cluster headaches. The freaking warehouse foreman......I didn't even try to explain!Joe

Joe, everyone's got an opinion, and everyone I've ever met, have all had CHs which they beat by.....acupuncture, cutting down on morning coffee, taking a nap in the afternoon, slowly drowning themselves in a tub, taking jello baths...you get the idea.  :P blessings. lance

Batch,

Is it safe to use welding 02? I believe the 02 is the same. What about the purity of the tank? What I've heard is that its all in the tank... The medical field PURGES the tank?? also I must admit that im now on a 20mg pred taper. Sorry to all my clusterbuster friends... I don't have a choice.

Coach Bill

Hey Coach,

Welder's oxygen is very safe and you're spot on...  the only real difference is the fill procedures...  which are essentially the same...

That said, I've yet to get a welder's M-size O2 cylinder I didn't like.

The only rule of thumb is if the oxygen has a strange odor you don't like... Take it back and get another cylinder.

In the mean time, what was your last 25(OH)D lab test and how much vitamin D3 are you taking...  I know of several CH'ers who need to take 15,000 IU/day vitamin D3 to stay pain free and a handful who need 20,000 IU/day. 

From what I've been able to piece together, it appears most of these CH'ers share a common factor... an immune response to colds, flu, allergies...  Most of them also reported lower 25(OH)D lab results than usual while taking 10,000 IU/day vitamin D3...

I know 15,000 IU/day sounds like a lot of vitamin D3... it really isn't.  Our skin can make that much vitamin D3 in 15 to 20 minutes if exposed to the UV-B in mid-day sunlight clad in a bathing suit without sunblock...

My wife has been taking the complete anti-inflammatory regimen with 15,000 IU/day vitamin D3 for three years...  She loves it...  She's also kicked the heck out of 76... and has more energy than I do...  Go figure.

Take care and please keep us posted.

V/R, Batch