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ChrisSelf

I'm sorry it took so long to get here

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For the last 7 years, prednisone has helped keep my episodes down to two or three days of mild cluster headaches so I never sought out other treatments.

After reading all the articles on this site, I want to say thank you.

I've gotten cluster headaches every fall and spring since I was 19...I'm 31 now. This spring, prednisone did not work.

Last night, I had the worst headache of my life. I was a complete wreck and accidentally hyperventilated my way out of the headache. I just read 25 pages on how to administer O2, and I think I understand now what to do. My neurologist never explained breathing technique or flow rates.

I just wanted to say hello, thanks for all the information, and I look forward to being here.

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Welcome Chris, chfather is the expert on oxygen here. I hope some of that 25 pages you read was from his white paper. The big deal is a non rebreather mask and about 15 lpm.  You will find many threads and stories here that are similar to yours where the perscribed pharma stops working. The other thing you will learn is that this damn disease morphs and changes over time.....I have had it for over 15 years now, it started out like yours ....episodal or twice a year. when verapamil stopped working I became chronic, the attacks came every day. This site and the great moderators here saved my butt.

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 I just read 25 pages on how to administer O2, and I think I understand now what to do. My neurologist never explained breathing technique or flow rates.

 

He didn't explain it to you because he probably doesn't know himself.

 

The proper flow rate is as much as it takes for you to  hyperventilate.

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I've been so mad about the oxygen that I'm considering finding a new neurologist. I just finished my fourth headache today.

From age 23 to age 31, prednisone had always been enough to bust a cycle. I've been so lucky to live headache free. Now, prednisone not working has led to a new diagnosis (trigeminal neuralgia) and I'm even more frustrated. My neurologist has taken this cycle to experiment with carbamazepine. I'm getting no help from him in busting the cycle.

I've tried airgas for oxygen and they do not want to sell to me. Harbor freight does not carry a large welding tank. No medical supply companies in my area carry a large "h" tank, nor will they order. Does anyone have any tips on where to track down oxygen?

I do have my official cluster buster oxygen mask en route.

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I've procured and used welding oxygen since 2009....I've used 3 different welding supply shops and never had an issue....just don't tell them you intend to breathe it.....since you have the optiO2mask on the way, you'll just need to get an O2 regulator from harbor freight and either lease or buy a cylinder from welding supply.

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Chris', just to follow up on what Denny said, you want to go to the Airgas welding retail store, or whatever they're calling it, not to an Airgas medical oxygen store.   There's no reason why they wouldn't want to sell you a tank for welding.  Also, don't ask for medical sizes (E, M, H, etc.) -- welding tanks don't have those designations, only medical tanks.  Typically at Airgas they go by cubic feet.  You might want to get two 60 cu ft tanks. That adds up to roughly the size of an M tank.  You can go bigger or smaller, remembering that you have to bring them in when they need "refilling" (they don't refill them, they exchange them for full ones) and they can get pretty heavy and unwieldy at larger sizes.

 

As Denny says, get the Harbor Freight regulator.  Do not buy a regulator at the welding supply store.

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There's no lpm flow rate gauge on the Harbor Freight regulator (or on any welding regulator).  You just fiddle with it until you get the flow you want.  That takes a very small bit of getting used to, but it quickly becomes second nature.  You probably realize this already, but you're looking for the flow rate that allows you to use an effective breathing strategy without having to wait for the bag on the mask to fill.

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Well, that is certainly something worth crowing about!!! Wonderful news Chris. :) If it weren't so early, I would do my infamous Happy Dance for you as we can't make marques of smiley's. :D:lol::D:lol:

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Just want to give you a heads up on larger welding oxygen bottles. Please strap them to something that will not let them fall over. I worked in the petrochemical business for 33 years and let me tell you if the tank falls over and brakes the valve off the tank turns into a uncontrolled missile. The smaller the tank the less likely it will happen but trust me it is deadly when it happens.

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Ed,

 

If you go to the closed boards (Theory and Implementation or Share Your Busting Stories) you will find a lot of info regarding your question. And likely will get more responses. :)

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Wish I could post a pic of my rig, but I've got a nice little welding cart with the tank strapped. Id recommend it to everyone as well. I was worried about it tipping and it makes it easier to move around the house.

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