Saw a post by chwife, about her husband's use of an oxygen concentrator at 5ish lpm to stave off night attacks - anybody else tried this? O2/Trex injections/Sumavel are working ok for abort, but I'm on this 2 HA/night thing, and sleep is not going well -

Never tried it but my o2 provider just made me switch to a concentrator because I was using too many tanks. 3 in five days at 15 lpm. The concentrator only goes to 10 lpm so now I'm screwed. My script is clearly for 15 lpm thanks to my doc being willing to listen, and now I have mornans running the o2 business. Even the tech who brought it out knew it wouldn't be enough. I will end up buying welding o2 when my last tank runs out on Monday. In the meatime I had a non-stop kip 3 from 3:00 am 'til 6:00 this morning, a wierd time for me so will try the concentrator at a 4 lpm tonight if that happens again. I've never heard of it doing anything for a ch at less than 12 to 15 lpm, but always looking for new things.

Um, they're failing to provide the prescription that was written by your doctor. Tell them to pony up immediately or find another provider.

Besides, a concentrator only provides about 90% pure oxygen, and that's after it's been running for 5 minutes or so. You need 100% from the get-go.

Jay,

Bless my long gray whiskers...  YGBSM!!!!

I agree with Bill.  Call the turkeys at your home oxygen provider and ask them for the name, credentials, and phone number of the physician who changed your doctors written orders for home oxygen therapy...

If they give you a name and number...  Report him to your physician and ask if he was called...  If your doctor wasn't called report the turkey to the state medical board... 

Changing another physician's written orders without consultation and agreement is a breach of medical ethics.

If they can't give you a physician's name and number, ask which of the Federal Pen's they would like to attend for a few years for practicing medicine without a license. 

You've got to get tough with these anal-retentive nanny-state bureaucrats and put them in their place!

If they continue to push back on getting you compressed oxygen in the proper sized cylinders, then advise them to expect a call from the Feds, the Better Business Bureau, your insurance company, and the local TV station... 

The TV station and your insurance company might find it interesting that a home oxygen provider is attempting to screw you by making more money sticking you with an expensive oxygen concentrator that fails to meet your medical needs rather than delivering the lower cost compressed oxygen prescribed by your physician...

While you're at it, tell them to deliver the larger M-size home oxygen cylinders. These are far more cost effective than the E-size oxygen cylinder.

Even at 15 liters/minute you're going to average 150 to 200 liters per abort.  E-size cylinders only hold 700 liters so are for local travel and work. 

If you're averaging 3 or more attacks a day/24 hours, you must have the larger M-size oxygen cylinders that hold 3995 liters of oxygen.

If they don't carry the M-size home oxygen cylinders, look for another home oxygen provider.

I keep three of the M-size oxygen cylinders on hand at all times... 

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I also average 30 aborts with a single M-size oxygen cylinder...  See the hit count marked on the sticky attached to the cylinder above...  At full cost before insurance of $30 each, that works out to $1.00 per abort.  My co-pay is 20% so my out of pocket cost per abort is 20 cents.

Medicare and Medicaid authorize a monthly max for total home oxygen expenses of $200.

Regarding using a nose cannula at a flow rate of 5 lpm as a prophylaxis for hits while sleeping...  I tried it when I was episodic and still got slammed...

There's no question supplemental oxygen will increase oxygen saturation while sleeping.  Unfortunately, that's only half the problem.  The respiration rate is still depressed during sleep and while a nose cannula and 5 lpm of oxygen will increase oxygen saturation, it does little to lower CO2 levels that will ultimately climb during sleep.  Lowering CO2 levels requires more lung ventilation.

Moreover, from the data we've collected so far, an elevated CO2 level above normal and depressed arterial pH below normal or at the low end of the normal range, appear to be contributing factors in the cluster headache attack mechanism as both conditions trigger vasodilation and can easily overpower the beneficial vasoconstriction made possible with hyperoxia.

I've found that taking 3 to 4 calcium citrate tablets with vitamin D, magnesium and zinc washed down with homemade lemonade prior to the evening meal elevates my arterial pH (as measured with saliva pH).  A glass of lemonade with the evening meal also works well for me in helping to prevent cluster headaches while sleeping at night.

Take care and please keep us posted.

V/R, Batch

I certainly agree about the M-tank, I have one, but my provider is very responsive, and I switch out at 500 psi. I am anxious to hear if Jay has any success with nasal cannulas to sleep with (using the concentrator). I've never heard of annyone using a concentrator to abort - I am sorry that you are having trouble with your provider.

I wrote a nasty e-mail to my provider but didn't send it for fear they would cut me off. I haven't even turned the concentrator on as I read about the 85% purity here and don't think 10 lpm will do it. I just emptied the first of two M-60 tanks I got before they delivered the concentrator today. I get about (4) 20 minute doses at 15 lpm per M-60 tank. Still have one full M-60 tank left so will milk it for about (6) 10 minute doses until Monday when I plan to go in person and raise hell at Hopkins Home Care. If that fails I'm going straight to welding gas. I finally got a non-rebreather mask today at 3:00. That was my docs fault or mine for not paying close enough attention to the scrip. Man you have to tell them how to do everything and then fight like hell to get them to do it. All without sound like an ass hole or a freak. I run a company and actually have some people skills but these pricks have reduced me to a pathetic o2 beggar. They got the best of me today because I was hurting too much to be a prick. But Monday I start all over and hopefully will have the non re-breather I ordered from the CH.com store which looks a lot better. Thanks for the encouraging words. It really helps. Jay

Kick some 02 ass Monday Jay!!

Thanks David...I have mellowed in my 50's but this Beast has unleashed the beast within me so I will have no mercy on the o2 provider. Sent the nasty e-mail last night. Thank the Lord I have a good job and the flexibility that so many don't have so I can fight the battle.

So...any advice on the o2 useage would be appreciated. I manage thru the day pretty well after about 10:00 am when the kip 2 or 3 goes away and I am pain free until 2:00 pm. I stay active during that time and use Red Bull 2 or three times until 7 or 8:00 PM when it starts to build. Chug a Red Bull then hit the o2 at 15 lpm for 20 minutes at 8:00 but shadows remain. I take sleeping meds and go to bed at 11:00 pm with shadows. I wake up at 3:00AM with shadows and tingling/buzzing and in my head and hands but back to sleep. Then wake up at 5:30 or 6:00 with shadows and kip 2 or 3. Red Bull and coffee at 6:00 keeps the shadows right on my shoulder but only kip 2 or 3 and then start over again at 10:00. The only time I'm getting above a kip 3 is the evening hit and the 02 settles it down but not all the way. What else should I do?  Anyone.... Jay

Jay,

This is for shadows and twinges only and has been working for me. Take a teaspoon of finely ground powdered ginger mix vigorously with about 3 ounces of warm water and drink it all up, any remaining in glass add a little water and finish it. Wait about ten minutes and then do it again. Since my bust started really working two weeks ago this has helped a lot with my shadows and even a low end .5 k hit. I also keep a box of ginger snaps in my car in case I have an annoying shadow while driving, There is a thread on cluster-busters called"ginger" for more info.

David

Thanks David, appraoching the 8:00 PM witching hour now. Will read the thread and start looking for ginger powder. By the way to my shock I revceived a very apologetic phone call at 10:00 am today (Saturday) from Hopkins Home Health Care. They actually read my e-mail this morning and send me two M-60 tanks today. I'm good to go with o2 now and plenty of Red Bull. The o2 knocks them out in 5 to 7 minites but they are back in an hour all day today so I'vebeen shorteing the o2 and making it more often. Used it at 10:45, 5:35 and 6: 50 today and feel like I need another now. I think the o2 is knocking my internal clock off but will see how it goes tonight.

Gotta walk now...can't sit for more than 10 minutes at a time. Jay

;D
Way to go Jay!!!!!
Good job of being a self-advocate!!!

Jay,

From my personal experience a few years ago when I quit using O2 because I thought it wasn't working well enough to bother I'm thinking 15lpm isn't enough for you.  Talk with your Dr about getting upped to 25lpm or higher.  I started using O2 again last summer after the convention when I was given a 25lpm gauge, and it has made all the difference in the world.  I can now knock out a hit within 5-8 mins, and unless I quit to soon I knock it all the way out.  My supplier couldn't get me a 25lpm reg for an M tank, so they set me up with two M tanks with 15lpm regs with a Y in the hose.  I actually get 30 lpm (they told me to set one at 15 and the other at 10 to match the script.  RIGHT!).  If all else fails see if you can get a second regulator from them as a "spare" or for your "bedroom" and hook them together.  It's definitely worth trying.  You will actually use less O2 at 25lpm for 5-8 mins than at 15 for 20, so it is more cost effective as well.

Jerry

Jay,

Great news from the 02 company. As n FYI when I am in full cycle I can get hit every hour to 2 hours whether I use 02 or not, it is the nature of the beast. My biggest problem is getting off too soon and getting hit again fairly quickly. What I do now to make sure the hit is gone AND conserve some 02 is once the hit starts dissipating to 1 k or feels gone I go down to 8 to 10 lpm and stay on it for a few more minutes. This seems to keep the me from getting hit 15 minutes later and when I am low on 02 conserve some. Great job on getting the m tanks, make sure they keep some handy for you, I have gone through 2 of them very quickly in the past.

David

Thanks to all three of you. David, I bought ginger powder on the way home from Mass today and just tried it. I was at about a Kip 4 during Mass (had to stand and walk in the back) and then down to a 2 after walking in the cold grocery looking for ginger and then in 95 degrees on the way home. It's been rediculously hot in Baltimore for two weeks. 101 on Friday. Took the ginger instead of a red bull and it seems to have knocked it out. Thanks for waning me abouthow good it tastses, but wtf...anything that works. Will try it agasin next time I just need a little something. Three tools now eiyh Red Bull. o2 and ginger, and still planning on dosing next Sunday if my shrooms show up Tuesday, as promised. Now I just have to work on my o2 supplier so it's not a battle all week. Good tips on the higher and lower lpm. You guys are great and thanks so much...Jay

Good thread!  I'm gettng my first M tank tomorrow and they claim that they only can provide regulators up to 8 liters per minute.   If I end up having to buy my own regulator for a higher flow rate?, Is there a particular brand to buy?  Are there differences in quality?