I just started O2 therapy last week for the first time, and the results have been good if I start the O2 soon enough.   I received a 15 lpm regulator with the el cheapo mask.  I have already ordered the optimask, and am looking for a higher lpm regulator.  When I was using Imitrex, I would often wait to take it to insure I did not waste it on a "light" CH.  The problem I found with that approach was that theres no way of knowing which ones will become a head banger.  Since a CH can ramp so very quickly, and become much more difficult to abort, I felt like I was rolling the dice each time.

The low cost of the O2 means I no longer have to be as selective in using the therapy.  Is there a downside to using too much O2?  I am currently using it 3 -4 times a day, for no more than 20 minutes at a time.  I am not aware of any health concerns with that frequency, but I am more concerned about developing a tolerance with repeated use, rendering the therapy less effective.  Hopefully I am worried about nothing.  Are you guys finding the O2 remains effective over the long haul?  Anyone requiring higher doses over time?  Is there any reason not to stay on the O2 for more than 20 mins at a time?  Any input is appreciated.

You'd only have to be concerned if you were breathing 100% pure O2 for more than about 20 hours straight.

And you cannot develop a tolerance to O2. Every now and again it just won't work for whatever reason, but that's almost always because we don't get on it soon enough and that particular hit develops into a mondo headbanger.

What Brew said. I've been using 02 as my primary abort for well over 20 years and it rarely fails me. Generally only when I don't get on it fast enough or stay on it long enough. So as soon as you feel the familiar tense neck, tingle in the back of the scalp, pressure in the ear, fire that tank off. You can't overdose on 02 and you won't build a tolerance. 2 of the many reasons it's sweeping the board like it is, it's that good.

I found when I drink an energy drink with my 02 therapy, I prefer sugar free red bull just for the taste, it seems to speed the abort times, and prevents the come backer attack I used to get within 20 minutes of shutting off the 02. My wife will pour one "on the rocks" as soon as she hears the clink of the tubing on my E-Tanks and she knows beasty is coming!

So glad you have 02, been a sanity saver for me.

Joe

Brew hit the nail spot on... There is no downside to repeated use of oxygen therapy. 

I have over 3000 hours flying Navy fighters and all of that flight time was spent breathing 100% oxygen from takeoff to landing ashore or trap aboard ship.  I passed my annual flight physicals every year for 24 years and I'm still going strong at 67.

If anything, using oxygen therapy at flow rates that support hyperventilation makes you work harder breathing than normal so can actually improve lung functions.  Lung function measurements of NASA safety divers who pre-oxygenate prior to working in the reduced gravity pools with the Astronauts confirm this.

As far as regulators go, the best available is the 0-60 liter/minute InGage™ made by Flotec.  At $190 with a DISS fitting for a demand valve, it's a bargain.

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Here's a photo of the InGage™ 0-60 liter/minute CGA-540 regulators on my M60 roadie...  The black knurled knob means no wrench required to attach the regulator to an oxygen cylinder.

Take care,

V/R, Batch

Thanks for the prompt responses.  What is involved with the hyperventilating technique.  Do you hyperventilate  until the pain subsides, or just for a specific length of time.  I realize I can't even try it until I get the proper mask and regulator.

The short answer to your question is yes... 

You need to voluntarily hyperventilate with 100% oxygen until you reach a pain free abort with this method of oxygen therapy.  You do this in order to reduce CO2 levels below normal.  This will push your system into respiratory alkalosis. 

You'll know when you've reached this temporary condition when you start experiencing the symptoms of paresthesia - a very slight tingling or prickling of the fingertips, lips or back of the neck.  You may also experience a slight dizziness. 

These symptoms are normal and they're the best indication you'll get the fastest abort possible.  Once you get familiar with these sensations you adjust your respiration rate and tidal volume of oxygen inhaled with each breath to maintain them.  The symptoms of paresthesia will clear rapidly as soon as you resume normal respiration rates.

The goal of this method of oxygen therapy is the fastest abort of your CH as possible.  If done properly you should average 7 minute abort times for CH between pain level 3 through 9.  The higher the pain level at start of therapy, the longer the abort time.

The procedures and breathing techniques used with this method of oxygen therapy are important.  Check your PM inbox for additional info. 

Take care,

V/R, Batch

I'm glad Batch piped in, he is the boards' resident oxygen guru. His posts are long and technical...read them anyways! ;)

Joe

P.S. - They look longer than they really are because he uses the old guy font!  ;D

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Since going pain free after starting the anti-inflammatory regimen last October I've turned geezing into a new art form...

Everything just keeps getting bigger and better...  and the little lady just can't keep her hands off me.  :)

Take care,

V/R, Batch

Guiseppi wrote on Jun 6^th, 2011 at 9:57am:

I'm glad Batch piped in, he is the boards' resident oxygen guru. His posts are long and technical...read them anyways!

Then read them again. Anything Batch writes is well worth reading a few times!

Thanks Batch - I know you've helped me.

I give him a bit of a hard time sometimes, but Batch is the absolute best!

I don't say thank you often enough - thank you, Pete!

Mike, Bill,

Thank you for the kind words...  We're making progress on new and more effective methods of treating cluster headache, but we still have a long way to go in getting these methods blessed and available to CH'ers worldwide. 

I took a little over 4 years to get Dr. Todd Rozen's study of oxygen therapy at flow rates that support hyperventilation started...  Two and a half years just to dig up the required funding...

Plans for the follow-on study of this method of oxygen therapy are proceeding on schedule.  I'm also working on an on-line survey of CH'ers who have tried the anti-inflammatory regimen and expect to have it up and running in a couple weeks.

If the results of this survey come out like I think they will, we might just be able to jump-start the clinical study process for this regimen.

We've a few other projects that should come to fruition over the next couple months that will help the outreach even more.

Take care, thanks again for all the support, and keep your fingers crossed.

V/R, Batch

Ive found I have to stand in front of a fan because I break into a sweat trying to hypervent. I still only have a 15 regulator on my tank and it is alot of work to get enough oxygen, but it still works.

Is it possible to break the demand valve with a welding regulator if it's completely open (meaning maximum pressure)? I assume not, but would like to confirm before I try it out.

When you hypervent, do you breath tru your mouth or nose or does it matter?

Akage, since the demand flow valve bypasses the regulator's settings and draws directly from the tank, I would think not. I keep my regulator set to 0 and draw breath in and sometimes push the demand valve if I get tired breathing.

Gardengal, it shouldn't really matter, I don't think. I would have trouble breathing in only through my nose, though. And yes, we are actually working the therapy and breathing that hard, that rapidly, that deeply for prolonged periods of time can be exhausting.

While we have an agreed upon technique, I think it serves more as a baseline which can be modified upon use and experience.  For example, I used to breathe and pace. Counterproductive. So, I stood still and applied the O2. Better. Now I find a sitting posture with clearing breaths, followed by rapid inhalations, followed by deeper, slower breaths works best and quickest for me.  The good part is, for so many of us, O2 just flat out works.  Blessings. lance

I see, I expected welding regulators to work differently, i.e. if they're closed you can't get any oxygen from DISS even with the demand valve.

Gardengal, I hyperventilate thru an O2PTI mask and breathe thru both mouth and nose. Many on this site use the mouthpiece and this requires a little more efffort to not take in outside air thru the nose.

If you're using a mask, just go for it full blast. For best results, hyperventilating until the pain leaves, without emptying the bag, if you do empty the bag during the deepest breaths you can take, you need a higher flow.

Batch gave me the technique I use and I can abort in less than 5 min using 25lpm and above. Just may have saved my life.

Best wishes,  Don

akage wrote on Jun 9^th, 2011 at 5:48pm:

Is it possible to break the demand valve with a welding regulator if it's completely open (meaning maximum pressure)? I assume not, but would like to confirm before I try it out.

I'm not sure what you're doing so will offer a couple thoughts...

The short answer is YES...  you can damage a demand valve with unregulated oxygen cylinder pressure... Don't do it.

Most demand valves here in the US require a regulated inlet pressure of 50 psi (3.44 BAR) and a few up to 70 psi (4.82 BAR) at the DISS ('Diameter Index Safety System') fitting.

Hitting a demand valve with unregulated pressure from an oxygen cylinder at 2200 psi (150 BAR in the US or 200 BAR in Europe), is not a good idea. 

That can easily cause damage to the demand valve and anyone standing near it.

Get a proper medical regulator with a DISS fitting if you're here in the US.

Now...  Just in case I miss-read your post and you have a medical oxygen regulator with a DISS fitting and you're attaching it to a Welders O2 cylinder with a CGA-540 fitting...  In that case...  It will work just fine and will do no damage to an attached demand valve.  These regulators will regulate the supply pressure to the DISS fitting.

If you're hooking up a DISS fitting to a welder's oxygen regulator, set the regulated pressure to 50 psi and you should be ok.

Take care,

V/R, Batch

Thanks for the info, Batch.
I've ordered a 25LPM CGA-540 medical regulator recently since I need it for my Europe trip, but I don't know if it will work the same way as my CGA-870 regulator - the 870 has both a DISS and a barb outlet and the flow control just controls the barb outlet - the demand valve bypasses it. The 540 has just one DISS, so I'm wondering if in this case its flow control would block the valve and only allow up to 25LPM.
If that was the case I was thinking about buying a welding regulator as they're much cheaper than the medical equivalents. Now it seems like it might be better to shell out some cash on a medical one if I don't want to break the valve one day.

Gardengal, one word of caution - if you succeed in hyperventilating really effectively (some would say too effectively :) ) you might end up losing your consciousness for a few seconds. This can be dangerous especially if you tend to stand when breathing. Only today I scraped my hand on a box because I didn't expect to black out during my first inhale and I fell on it. Keep all the hard objects away and inhale while sitting if that happens to you.

Me either. Never heard of blacking out on pure O2. And I've been using it for 20 years.

This happens if you hyperventilate using the demand valve and it's not from O2 itself but rather from lack of CO2 after you exhale (hypocapnia leading to hyperventilation apnea). That's why it is safer to hyperventilate on your own (very deep exhales and very deep voluntary inhales), as it is harder to hyperventilate that way and your body adjusts to it. On the other hand it is slower (as in minutes compared to seconds with the valve) and less effective for treatment (as the whole point of hyperventilation is to achieve hypocapnia).
Normal deep breathing of O2 (the technique I used for 10 years before I heard about hyperventilation) will not result in apnea.

Akage,

I'm afraid you're running on information from an old wives tale...  We've done a lot of research including a pilot study of the demand valve method of oxygen therapy that also supports hyperventilation collecting data on over 366 aborts using this method...  We observed 99% efficacy and very short abort times during this pilot study, but not one instance of blackout or any other adverse events! 

CH'ers can and will get dizzy using this method of oxygen therapy.  They will also encounter the other symptoms of paresthesia including a very slight tingling or prickling of the fingertips, lips and back of the neck, but nobody I know of has yet to blackout or become unconscious while using this procedure to abort a cluster headache.

These symptoms are the best indication the user has hyperventilated long enough and deep enough to push his or her system into respiratory alkalosis...  the fastest way to abort a cluster headache reliably in a very short period of time...  like an average of 7 minutes for CH between 3 and 9 on the 10-Point headache pain scale.

I've over 3000 hours flying Navy fighters and all of that flight time was spent breathing 100% oxygen at times at flow rates up to and above 50 liters/minute...  I never lost consciousness and always brought the jet back for a safe landing ashore or a trap aboard ship. 

I've also used oxygen therapy at flow rates that support hyperventilation at flow rates up to 60 liters/minute with a Flotec InGage™ oxygen regulator and O2PTIMASK™ and with an Oxygen Demand Valve since 2005.

I'm a CCH'er and averaged 2.5 aborts a day so that works out to over 4500 aborts with this method of oxygen therapy and I've yet to black out...

If you're going to Europe, your CGA-540 regulator will be useless...  I know...  I travel to the UK, Norway, Switzerland and Germany frequently on matters involving CH.  The UK has a different standard cylinder attach fitting than Norway, Germany and Switzerland.

You'll also need to do some research on the type bayonet quick disconnect fittings used in each country to attach a demand valve as your DISS fitting will not work either.

I had an DISS to DIN quick disconnect adapter fabricated for me by Flotec Inc. that works well in Germany shown in the photo below attached to a Linde Integrated Valve (LIV) with a DIN female bayonet fitting for use with an oxygen demand valve.

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Each Non-EU and all the EU countries have a different standard for oxygen cylinder attach fittings and demand valve hose fittings...  and DISS isn't one of them.

If you're only going to one country and can arrange to carry a LIV from Linde, call the folks at Flotec and you may have time for them to fabricate one of these adapters for you.

Regarding CGA-540 and CGA-870 regulators with selectable (click type) flow rates and or DISS...   All US standard oxygen regulators are regulated to a fixed pressure of 50 psi unless special ordered otherwise. 

DISS check valve fittings draw oxygen from downstream of this first stage fixed regulator that reduces cylinder pressure down to 50 psi and so does the flow rate selector.  These selectors essentially offer a range of selectable orifices to control the flow rates...  big openings for high flow rates and small openings for low flow rate.

Hope this helps.

Take care,

V/R, Batch

Batch...Thanks for all the information.  I am still relying on the 15 lpm regulator I received from the home health company until I receive my new one from Flotec.  At 15 lpm how many minutes of O2 can I expect from a type "M" tank?  The home health Co. told me to expect at least 4 - 4 1/2  hrs, but so far I have averaged just under 3 hrs on my first two tanks.  The company rep said they don't have many requests for the type "M" tanks, and they had never heard of O2 for CH.   While the O2 definitely works for me, with the 15 lpm regulator it is requiring 15 - 20 minutes per abort.  Is that abort time fairly normal for that lpm regulator?  I had a long night last Thurs.  I used the O2 almost every 2 hrs for a total of 5 aborts between 11PM and 8AM.  It worked every time, but little did I realize that I had used half an "M" tank in one night.  I ended up stressing all weekend about my limited O2 since the needle on the gauge was deep in the red (refill)  by Saturday morning. 

Additionally,  I woke up several days ago with a little chest tightness upper left side.  Definitely not painful, just noticeable.  I had tried the night before to hyperventilate the best I could with the small mask/bag that came with the tank, but not very successfully.  I had also used an Imitrex 6 mg injection a day or two earlier as well. I have used Imitrex many times in the past with no side effects to my knowledge.  Is there anything I might have done incorrectly using the O2 therapy that could result in the chest tightness?  I have already made an appt with my physician for tomorrow since the condition still persists.  All feedback is appreciated.   

Thanks for reminding me about DIN-477, I totally forgot about that - need to buy an adapter then (this will probably do: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE TA-540-DIN).
As for blacking out after hyperventilation - I'm not here to convince anybody about it, it's not that important. I just know what I've experienced first hand a few times and I've got bruises to prove it.
On a side note, I saw a crime series episode yesterday where a woman supposedly committed suicide using oxygen - while having a small 5L tank, a standard regulator and a rebreather mask not strapped but held in hand - had a good laugh for some time :D

Keep in mind that 25lpm regs can be had on ebay. One does not have to spend a great deal of cash for relief.

JBOGG,

It's very difficult to hyperventilate with an oxygen flow rate of 15 liters/minute even with an O2PTIMASK kit with the 3-liter reservoir bag.

The best indication you're actually hyperventilating is you start experiencing the symptoms of paresthesia - a very slight tingling or prickling of the fingertips, lips, or back of the neck.  You may also experience a slight dizziness.  These are also the normal symptoms for a condition called respiratory alkalosis.  The symptoms and these conditions are harmless if you've intentionally hyperventilated.  They're also essential if you want a fast abort ~ 7 minutes on average.

As to the chest discomfort and tightness...  anything is possible, but I suspect you've made your lungs work a lot harder than usual so most of the discomfort is likely coming from the intercostal muscles that expand and contract the rib cage during higher tidal volume breathing.

The tightness and discomfort should clear in a day or two...   If the tightness or discomfort continue after that, see your doctor.

You may want to try a redneck reservoir bag made out of a 40 gal trash bag or 55 gal drum liner until your Flotec regulator arrives.

They work great and there is no restriction, resistance or work of breathing during the inhalation cycle.  You can also fill your lungs completely and very rapidly in a single gulp.  I've used make-shift reseroir bags like this on several occasions and was able to feel the symptoms of paresthesia starting in 3 to 4 breaths using the forced vital capacity breathing technique...

Get some Duck Tape a clean trash bag.  Fold the open end of the bag over an inch a couple times then use the Duck Tape to seal the fold for a gas tight seal.  Cut a half inch corner off one of the opposite end corners and slip over the lower part of the O2PTIMASK™ kit "T" manifold.

Fold the "T" manifold over the bag and wrap a rubber band around the lower part for a gas tight seal then fill the redneck reservoir bag ahead of time for future use.

When the beast strikes, turn on the oxygen supply valve and take off the rubber band...  You'll be able to hyperventilate easily.

Akage...  As far as blacking out while hyperventilating with 100% oxygen goes...  I still say it's impossible...  Having said that, you can pass out if you hold your breath...

Note:  I've never held my breath while trying to hyperventilate away the beast during a head banger...  The thought never entered my mind...

The urge to breathe gets stronger as the level of CO2 increases above normal...  not as oxygen levels decrease.  Accordingly, If you've hyperoxygenated yourself with 100% oxygen and also pushed yourself into hypocapnea (lower than normal CO2 level) and respiratory alkalosis by hyperventilating for 2 to 3 minutes, then hold your breath...  you can pass out before you feel the need to breath.

For free divers who hyperventilate before a free dive...  this is called shallow water blackout.

Take care,

V/R, Batch

Quote:

a redneck reservoir bag

;D ;D ;D ;D ;D ;D ;D

Dude, you are killing me!

Batch....I definitely was working harder to inhale and exhale thru the Optimask.  To exhale easier I started tilting the mask to break the seal around my face so I wouldn't have to work so hard exhaling.  I'm seeing my doc tomorrow, hopefully she will confirm the chest discomfort is nothing to worry about. 

I have been on O2 for almost two weeks, and I am going round and round with the home health co. that supplies the O2.  It seems that they only have three "M" tanks, and since I went thru a tank in about 4 days, they have asked that I consider using a liquid oxygen vessel (whatever that is).  :-/ He said it would be the equivalent of a months supply of O2, and that it is used in hyperbaric chambers.  Since I haven't seen a reference to this type of O2 container on this site, I am a little skeptical.  Anyhow, have only had a single CH the last two nights in a row.   Maybe it peaked last week.  Life is easier when the beast hibernates. :)

JBOGG,

Do not let the home oxygen therapy folks stick you with a liquid oxygen (LOX) thing!  You need the compressed oxygen gas cylinders unless you plan on using the redneck reservoir from now until hell freezes over. 

The max flow rate from boiling liquid oxygen to gaseous oxygen through a LOX converter without an electric resistance heater is 15 liters/minute.  Try to get any more flow rate and the evaporator will freeze up and your flow rate will drop to less than 5 liters/minute.  We know... and have tried it several times with all the leading LOX systems.  Not worth it.

The second reason to avoid the LOX system is they cannot support the use of a demand valve.

The third reason is cost to you.  While the home oxygen therapy folks will make a slightly higher profit margin on the more expensive LOX system, you and your medical insurance company will end up paying more per month.

If your home oxygen provider only has three M-size oxygen cylinders on hand at any given time tell them to order more from their fill facility... you need five (5) a month and you don't have COPD!  You have Cluster Headaches and need much higher flow rates.  

If they get hissey... ask if they have a physician on their staff license to practice medicine in your state...  If they are changing our Rx and do not have a licensed physician on hand to change your Rx...  ask them how well they think they could  operate their business from behind bars...

If that's too obtuse for them... tell them you need two K-size oxygen cylinders a month...  They can order these in advance from their fill facility.

Getting down to one delivery a month will make them happy as the delivery expense is what is killing their profit margin.

And yes Bill, the redneck reservoir bag really works great!  Can you think of a better name?

Take care,

V/R, Batch

Quote:

And yes Bill, the redneck reservoir bag really works great!  Can you think of a better name?

Oh, I know it works great because I've used one. There is no better name I can think of! I love it!

It's just funny as hell.

Great info as usual.  Thanks for the lesson on Liquid O2.  Definitely not an option.The delivery guy made it sound like it would take an act of Congress for them to acquire additional "M" tanks.  I will ask them about the "K" tanks.  It sounds like that might keep them happy. 

I just returned from my docs office.  She confirmed Dr. Batch's diagnosis. ;)  Thinks I strained a rib muscle,  she said it is very common in Asthmatic patients who have to work hard to breath.  Glad to be able to take that worry off my plate.  Thanks again for all of the thoughtful responses.  Oh yeah, two nights in a row without a single CH.  ;D  Starting to think there might be something to this high Vitamin D with Omega 3 fish oil regimen that I started almost a week ago.

JBOGG wrote on Jun 14^th, 2011 at 5:25pm:

Starting to think there might be something to this high Vitamin D with Omega 3 fish oil regimen that I started almost a week ago.

It's certainly looking like it isn't a placebo!

Hey JBOGG,

Great news about the rib muscles and the Omega 3/vitamin D3/cal-citrate regimen...  Here's hoping you had another PF night with many more to follow.

And please...  I'm not a doctor...  but I did stay at a Holiday Inn a few years ago.  At best, I'm a Grand Poobah of oxygen therapy and other healthy alternatives to control our disorder.

Take care,

V/R, Batch

Batch...I was only kidding about the doc reference.  But no kidding, I have received so much more helpful info from yourself and others on this site than I have ever received from any of the physicians I have seen.  Thanks again for all the help.

Batch wrote on Jun 15^th, 2011 at 9:45am:

At best, I'm a Grand Poobah of oxygen therapy and other healthy alternatives to control our disorder.

Maybe "Da Big Kahuna." ;)

Kahuna-Batch-Meister.........I like it! ;D

Joe

Bill, Joe,

You're too kind...  You two know me too well...  My tongue was through my cheek on my comment about the "Grand Poobah of oxygen therapy..." 

There are others who helped make this method of oxygen therapy come to fruition as a valid abortive with high efficacy and short abort times...  Michael, Chuck, Royce, Svenn...  even you two played a significant role.

We all want to help the newbies who come here looking for answers to  questions about the terrible pain they suffer... 

Above all...  we hope we come across to the newbies as straight shooters speaking nothing but truths...  and no bum gouge!

As always my friends...  take care.

V/R, Batch

I think I'm probably at the end of the cycle. The attacks have become very mild (pain level 2 to 4). I'm wondering whether to use O2 for such mild attacks. I often have vascular headaches, maybe due to CH, and I'd like to know whether O2 helps aborting these headaches too.
Neno

Batch wrote on Jun 17^th, 2011 at 1:38am:

We all want to help the newbies who come here looking for answers to  questions about the terrible pain they suffer...  Above all...  we hope we come across to the newbies as straight shooters speaking nothing but truths...  and no bum gouge!

Amen, brother!


Quote:

I often have vascular headaches, maybe due to CH, and I'd like to know whether O2 helps aborting these headaches too.

I have, in my somewhat distant past, used O2 to abort hangover headaches quite successfully. I have also used it to abort severe tension-type headaches, but always did that in conjunction with 400-800mg of ibuprofen. So I'd be hard pressed to prove that it was the O2 that did the trick.

The abort times did seem significantly reduced when using the two in combination.

Neno,

By all means... use oxygen therapy on every CH no matter how minor it may feel at the time...  If the flow rate is high enough to support hyperventilation you'll get the fastest abort possible.

Take care,

V/R, Batch

Thanks, but it seems logical to me that very mild attacks mean that the vessels are slightly dilated. Maybe by taking O2 I shrink them too much (??) which I don't find healthy. That's why I had asked does O2 help in "normal" headaches when the vessels maybe aren't dilated.

Neno

"shrink them too much" reminds me of when I was trying ergotomine for my headaches: I would take so much so often, it would cause my limbs to get cold and my legs to cramp.  So I think if you were shrinking them "too much," you'd have a lot of side effects.  The only side effects of too much pure oxygen only happen after like 20 hours of breathing it nonstop.

Neno, you are a bit of a worrywart, aren't ya? The deal is, O2 in the amounts we breathe, cannot hurt us. Some have felt maybe they were adapting to its effects but for the most part, you should use it to abort anything that comes your way. CHs seem to be less intractable the more quickly and the more efficiently they are aborted. I don't have any medical research on this, but pain is pain and you do not acquire extra virtue points for enduring what can be aborted. Blessings. lance

how hard is it to get oxygen prescribed and to your house? I'm insured and I have read that my insurance covers that but i'm curious on the wait time. I'm also wondering if my Dr. will prescribe me such.

Sadly it's a crap shoot. The more enlightened doctors recognize what a safe, effective treatment it is. The ones educated in the dark ages still insist narcotics are the way to go. Good luck.

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This link has all the info your doc will need. Once he prescribes it, the tanks can be delivered the same day, wishing you luck and spped.

Joe

Joe, u are awesome. I'm glad you guys are here. i've visited this site before but never knew of the message boards. It's good to have fellow people who understand and share your pain. Not the pain part, but knowing you are not alone (I wouldn't wish this on my worst enemy). Thanks for the information on the oxygen though. My Dr is an old fart  :P  but i shall see if i can persuade him that this is the cheapest option for me.

Cheapest and best for many of us......

If he won't go for it, check the OUCH user recommended doctor list here:START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE for a doc close to you that will be more likely to prescribe O2 for CH.

I went to the doc this morning. He tried to prescribe me Zomig again until I told him how expensive it was. His next step was the imitrex injections, which he says are cheaper. I went with the imitrex because he said that oxygen is usually his last choice since most insurances won't cover it. He also went on to talk about how it takes up to 2wks for the oxygen to be delivered to me. So i took the imitrex prescription with my head hanging down. Then i put the prescription in at the pharmacy and called back later to get the pricing. I was quoted $108 for 4 of those injection kit things. How is this cheaper? I quickly called back and told him to cancel that prescription and put in an order for the oxygen. I called my insurance company and found that they cover up to 90% of the cost of the oxygen tanks. Hopefully they call me back tomorrow so we can get started.

Good for you! School that stupid doctor.

Even if your insurance wouldn't cover it, if you have a prescription in hand, you can negotiate a cash price with the durable medical goods provider.

This is an EXCELLENT  example of a patient being her own best advocate! I couldn't be happier for you. APRIA does same day delivery here in So-Cal if I get a call in early enough. I'm so hoping you get as swift a response!

Joe

Apria is the company that my insurance goes with as well.  They have a location just about 8 min from my house. Since I'm waiting on the damn doc to get my prescription filled with my insurance. We shall see. Tomorrow at the earliest.

Will so change your view of the beasty!!!

Joe

Just left Apria. Cost me $14 today and $2.77 every month after. I wish i could use that dancing smiley from the blackberry phones. I feel like i won the lotto lol

[smiley=shore.gif]  Doin the happy dance for ya!

Joe

Do let your doctor know, in the most diplomatic terms possible (in other words, be smarmy about it), that he is wrong.

Hi all!!

Newbie here. Kay Jay, I am so happy for you!!

I was in your boat last week. I shared with my Dr. what I had read online about O2 therapy; that even JAMA published the wonderful results of a trial done in 2009 and would he PLEASE, PLEASE give me a script for O2, since nothing else was working....and didn't want to get hooked on the Vicodin again.

I have been using O2 now for 3 days.....and YIPPPPEEEEE!!!
Life is good. Although the 'hangover' feeling after 4 - 5 headaches a nite is not.

Can anyone tell me why I seem to be getting MORE nocturnal headaches now that I am using O2? Am I not doing something right, maybe?

So glad you guys are here!!
Thanks!!    ;D

Can't say O2 has anything to do with when you get hit.....at least it's not been my experience.

High flow Oxygen is a truly wonderful abortive therapy. It isn't a cure, it will not stop the next one from coming and it will not reduce the number of attacks.

However; it WILL halt the agony and give you a chance to find out what other abortive/preventative works for you.

On the other hand: IF you can learn to breathe pure O2 at very, very high flow rates (like 40-60 LPM) for just a short few minutes, your world just may change. 

Mine did.

Robbie, look into Melatonin, an OTC sleep aid available at health food and vitamin stores. I stole the following from Brew:

There was a thread awhile back that went into the differences between types of melatonin.
It was generally agreed that the "good stuff" is
n-Acetyl-5-Methoxytryptamine.
Some people take a combo of both the immediate release (to get to sleep right away) and the time-release (to stay asleep).

So be sure and read the bottles as some of the stuff labeled as Melatonin does not work for us. Once you get the RIGHT Melatonin, start with 9 mg about 30 minutes before bedtime. Some go up to 15 mg or higher but build it slowly. Might take a couple of days to see results but many can avoid the night time terors this way. Hope it helps.

joe

Hi Marc,

Thanks for the reply.

I had read about the Melatonin and went and bought some today. I looked for that particular kind you mentioned, but all the Melatonin I saw, only said....Melatonin. LOL

So, what is the trick to finding the right kind?

~~Robbie

Robbie wrote on Jun 27^th, 2011 at 11:38pm:

I looked for that particular kind you mentioned, but all the Melatonin I saw, only said....Melatonin. LOL So, what is the trick to finding the right kind? ~~Robbie

You'll have to read the fine print on the back of the bottle, usually under the list of ingredients. It's all marketed as "Melatonin." The brand I use is called Nature's Bounty, and I get it at Walgreens.

Hi Brew,

Thanks for your reply.
Seriously, I have looked everywhere on that bottle of 'Spring Valley' (Brand) Melatonin and it does not say anything other than 'Melatonin'. It does, however break down the *other ingredients.....but that is it.

Whatever it is made of, it did not work last night. The only thing it did was make it so that I did not wake up as fast when I started to get a hit, therefore, it was a little harder for the O2 to work.

~~Robbie

For some it can take up to 5-7 days of taking it every day before it becomes effective.

Quote:

The only thing it did was make it so that I did not wake up as fast when I started to get a hit, therefore, it was a little harder for the O2 to work.

Same thing happened to me and it made me afraid to continue taking it.   I seem to have good luck with Benadryl.  It gets me a few hours of sleep when I'm getting beat up at night.

I am actually not taking it to help me sleep.
I have no trouble falling asleep...I am dead tired all the  time form being up half the night taking O2.

I was under the impression from what I read here in another thread that taking Melatonin may help you to not get hits at night.

~~Robbie

For those whom it helps, the proper dosage will allow you to stay asleep through that critical transition into REM sleep, which is when the vast majority of CH'ers who get hit at night get hit. This usually occurs around 90 minutes after falling asleep.

So yes, it will help you fall asleep, but more importantly it helps you STAY asleep during go time.