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BostonHeadacheDoc

Mouth piece as opposed to a non rebreather mask

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For some of us it is essential where the O2 "hits". My CH has always been on the left and for me it was crucial to get O2 flowing in my left nostril. The faster I got there (got the nostril open etc.) the faster I got relief. On my case, mouthpiece did nothing. Never tried sticking it in to my nose though. On some KIP10's I even threw the mask away and hit that O2 to my nostril straight from the tube. (Not to be an advice to anyone)

From what I have understood from finnish posts (here in Finland) from hundreds of people with CH it seems that majority needs oxygen on the side their CH is on.

Could he not get a mask for free from ER ? Asking there would probably not hurt.

EDIT: As shocked pointed out, O2 on the pain side is not common everywhere. This one needs a lot more discussion, I think.

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Mouthpiece much preferred by my daughter, too.  Sure seems like a crazy policy from the insurance company, but I guess that's what they're best at (crazy policies).  O2ptimask is what he wants anyway, if he wants a mask, and he'll have to get that on his own.

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Hi Doc,

At the conference I took a whack, & the big bottle in the hall wasn't ready yet so I pulled out my rig I always carry. Had a small group in the back of the room that morning checking it out. Been using the setup since mid 90's. Its super cheap, throw away after the mask elastic is shot, & fits in a small travel bag. (Purchased a small bean shape bag from LLBean for over the shoulder & it holds a small M and the mask and doesn't weight much). If I'm a distance from car/parking lot or a Bigger bottle it has save my "Arsk".

If you search out, or another vendor Mfr#108-E:  Mooremedical.com for instance then type in item 82271 (7' oxy tubing, check valve, "two side valves") they sell for $1.19 each, so I buy dozen at a time. Last a good year or so...  Now for a small problem the valve white rubber check patch has a tendency to come off in travel. I grabbed a few 1/8 inch flat washers at hardware store and just popped them over the tab & I've never lost one valve gate since. Plus you can just walk a small mask into the store hardware isle and get the perfect fit if need be. Again your only paying a dollar for the mask so its not a be deal.

Personally want to Thank You Doc, It was Great listening to all at the Conference.

Blessings,

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A standard non-rebreather mask can be altered to work.  Cut the straps off, tape over the holes and replace the bag that was on it with a larger bag(ziplock or trash bag).

For me the mouth piece doesn't work as well but everyone is different,  I tend to breath through my nose and that doesn't work with a mouth piece also the cold air hurts my teeth and feels good on my sinuses.

CH

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In order to discuss in detail the equipment that we use it is important to use the correct terminology.

What we use is known as a “giving set”

We use it for Oxygen Therapy; and so becomes an “oxygen giving set”.

To cope with our requirement to breathe only oxygen a “reservoir bag” with a non return valve fitted.

So it is a “non-rebreather oxygen giving set with reservoir bag”.

Only the facemask part of the set is in fact a “mask”

When using a mouthpiece, the term “mask” becomes redundant.

 

For prescription and insurance purposes, “mask” or “facemask” does not apply the term is “giving set”.

Shocked

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There is only one mask worthy of persuit here and that is the optimask. They cost but are certianly worth it. You can use the mask, you can use tube and mouthpiece.......the versatility is just what the doc ordered.    Go to clusterheadaches.com and order one. Money is worth it, you get it back from not buying trex. :)

Edit........insurance would be more willing to pay when the optimask is perscribed, with a need for medical nessecity letter.  02 suppliers are required to provide perscribed breathing devices..been there done that. ;)

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When delivering my oxygen, the O2 supply company initially asked if I needed a mask.  I asked for a non rebrather.  They gave me 3. :)  No input from insurance, doc or prescription required. 

Boston Doc,

I echo the above comment.  LOVED your presentation at the conference!!  Full of accurate and informative information! :)  I look forward to seeing you again someday.

Jeff

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Ever since I ordered the Optimask (at the advice of CHfather), Jan prefers the mouthpiece, when he uses the mask it hurts his face too much but that's personal off course.

We still have a spare mask we got from the oxygen supplier, if your friend wants to try a mask also, I would gladly send it to him for free. Just send me his or hers address in a pm and I'll send it over.

If your friend decides to buy a mask, I would also recommend the Optimask, it comes with a mouthpiece also and it reduces the duration of the hits by half the time, at least, that's Jan's experience! The costs of the mask is definitely worth it!

Lots of strenght

Elly

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For some of us it is essential where the O2 "hits". My CH has always been on the left and for me it was crucial to get O2 flowing in my left nostril. The faster I got there (got the nostril open etc.) the faster I got relief. On my case, mouthpiece did nothing. Never tried sticking it in to my nose though. On some KIP10's I even threw the mask away and hit that O2 to my nostril straight from the tube.

We are all different but seems that majority needs oxygen on the side their CH is on.

Could he not get a mask for free from ER ? Asking there would probably not hurt.

Please indicate the source for your information.

shocked

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Please indicate the source for your information.

shocked

This is what I have learned from the posts of finnish CH sufferers over the years, I can not point any study or solid information. I am this way myself, oxygen on the non-pain side only did not affect my attacks.

The finnish site is at http://www.kolumbus.fi/geodun/cluster5.htm

The section is called "reader's letters" and has a few thousand posts all the way from year 1998.

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Tony,

Before I read through a few thousand readers letters going back to 1998 looking for your information. Please can ask that I am getting this straight.

You say that you are unable to achieve efficacy from the standard model of Oxygen Therapy that is, breathing O2 into ones lungs.

That you can only abort your CH by somehow “sniffing”O2 into the nose/sinus cavity of the affected side.

You also seem to be suggesting this phenomena is so prevalent/common amongst Finnish CH’ers that you infer the majority of CH’ers here and beyond also “need” to follow this technique.

shocked 

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I am sorry if I somehow offended someone with my post, that certainly was not my intention.

You could not go through the posts, they are in finnish.

I do not know what the mechanisms here are. Is it the nose/sinus cavity or the lungs. This is not a fact, it is how I have interpreted it:

Many people who use oxygen as an abortative the stuffiness (hope that's the correct word) of the nose is usually at play during attacks. If the pain side nostril is stuffed so badly that O2 can't get through it, the oxygen will not start to be effective until that nostril is open. Is that a cavity, lung, bloodstream, whatever thing I do not know - this just pops up again and again in people's posts.

I also have the "gut feel" that this is more clear the more severe your CH is.

I am not saying anyone "needs" to follow this if O2 works like magic. When it does not work anymore, you have gone through all the masks and are as high flow-wise as possible I am saying there is a need to research the mechanisms of action.

For me it was a breaktrough when somebody wrote about this, then I knew exactly what I needed to do. Abortive success rose from 65% to 99%.

I mean well, not trying to play Jesus here.

MODIFIED: I also don't know could the location (Finland) play a part. During fall/winter/beginning of spring we have really dry weather here, I mean really. Air humidifier in the bed room is a standard thing for finnish clusterhead.

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I have researched the mechanisms of action.

You see, IÂ’m the person responsible for bringing mouthpiece set-ups for use in oxygen therapy to treat CH, (Clustermasx) along with cushion facemasks, t-piece valves, larger reservoir bags, extended hoses and demand valve.

Introducing a new giving set and new technique which was different from longstanding protocols was difficult enough, convincing CH’ers to change from what they “believed works for them” to what works for everyone, was much, much more.

Oxygen in the nasal pathway has no therapeutic value.

shocked 

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I usually use the mouthpiece but for some reason, for this particular cycle, I've had better success aborting with the mask.  Not sure but might have to do with the fact that it's on my right side when it's almost always on my left.

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This whole thread kinda opened up some things about my personal case. For me, it was all about nasal pathway. But that was only when I became chronic with 4-8 attacks every day. As episodic, any O2 any way worked as long as flows very big enough.

It was pretty much the similar deal as with the pain itself. Evolving. As my first years with clusters the pain area was at least fist size area behind my left eye and the pain was survivable. 15 years later the area had shrinked to a size of a point of a needle and the pain had increased to insane.

My oxygen use evolved. I gave up on it twice. When I found bigger flows the highest of them 20-25lpm kept working all the way my chronic years until I busted and terminated the whole motherlover.

I still have all the masks. Several bottles with different flow setting plus the demand valve bottle and demand mask.

Demand never helped me one bit I have always though it was about the flow but now reading this and thinking it was probably about the nasal passage.

The cushion was made so small you could only fit your mouth in it. So thank you, now I have something to share and suggest to try with finns who have demand valve & mask and it is not helping.

This matter is too little discussed, is it because it is this way with only some of the patients or do people just give up on O2 thinking it is not helping them I don't know.

To have this thread is a great thing :)

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Tony,

Your first post on this thread described placing pressurized tubes where they are not meant to go.

You then go on to suggest that “the majority” of us do this/need to do this.

These comments are dangerous and misleading.

shocked

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I will edit that post to make you sleep more calmly. A lot more discussion needed about O2, especially when it is not doing it's job.

I firmly believe O2 as the best abortitative in CH. For those with who it does not "work" I think the way to use it needs to be corrected and most could have it "working" again.

So, more talk !

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