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Help in getting OXYGEN prescribed (Read 43206 times)
ClusterChuck
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Help in getting OXYGEN prescribed
Jul 8th, 2008 at 12:38am
 
Ok, I see a lot of people are still having questions about oxygen.  I hope this helps. 

First, go to the link on the left, Oxygen info.  Read and understand that.

Then, for hints and suggestions, go to the Medications,  Treatments,  Therapies area, and go to the thread, Tips for CH Sufferers, and then down to response #10.  That has a lot of information that is NOT listed on the link to the left.

Next, is a way to help your doctor to agree to prescribe oxygen.  It has helped a few clusterheads to get their doctor to agree.  Print out the information and drop it by the doctor’s office several days before your visit.  DO NOT expect your doctor to sit down and read information that you bring with you, to your visit.  He/she just does NOT have the time, right then, to do so.  Give him/her a break, and let the doctor prepare BEFORE you show up.

Also, explain to the doctor that you don’t need the oxygen to just increase your blood/oxygen concentration.  What you need, and what you are looking for, is the vassal constricting qualities of oxygen.  It is believed that what causes our pain is the vassal dilation, that pushes against, or aggravates the hypothalamus, which then triggers the pain.  When sucking at oxygen, at, at LEAST, 10 to 15 LPM, the vassal structures then compress, or constrict, which relieves the pressure on the hypothalamus.  PAIN GONE!

I say “at LEAST” 10 to 15 LPM, because there is a certain school of thought, of which I adhere to, that believes that an even higher flow rate works faster and more efficiently.  My regulators go up to 25 LPM, or I can connect my demand valve to it.  I won’t go into detail about these niceties, here.  This thread is to help you get set up, and succeeding with oxygen therapy.

The important thing is to get your doctor to prescribe the oxygen.  Maybe your doctor will only prescribe you with oxygen at a flow rate of 5 or so LPM, with a nose canula.  That is fine!  The important thing is to get the prescription for the oxygen.  We can help you get the other items needed.  You do NOT need a prescription to buy a different regulator, and a non-rebreathing mask.  They are not that expensive, and if you are having trouble getting what you need, there are plenty of us, on this site, that keep spares of each, just for such instances.  We would be happy to send them out.

I hope this helps you to get the all important prescription for oxygen.  The argument about using the “vassal constriction” argument seems to have done wonders for a few clusterheads that I have suggested this to.  The doctors seem to be, first, impressed that you even KNOW about that capability of oxygen, and second, can also see the logic to the argument!

Remember, if you have more questions, come in here and ask.  That is one of the main reasons for this site!  Ask away!  We want you to get PF as quickly as possible.  There are many of us that swear by the oxygen regime.  Collectively, we have THOUSANDS of hours of successful use of oxygen therapy.  We want YOU to get the benefits, also!

Even if oxygen did not work for you in the past, try it again.  Chat, call or post exactly how you are using it, and one of us should be able to help you get better results.

Good LUCK!

Chuck

OXYGEN has made a HUGE, positive impact, on my life, and most especially, the QUALITY of my life!
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Re: Help in getting OXYGEN prescribed
Reply #1 - Jul 8th, 2008 at 3:29am
 
Good post Chuck

BE PATIENT:
I believe the reason some people don’t get the best results from O2 is that they don’t stay on it long enough.

My preferred method is to count the number of breaths I take to get rid of the hit & then stay on the O2 for the same amount of breaths, I can usually abort a hit with about 80 to 100 breaths but I breathe straight from the bag as I have a beard & can’t get a proper seal with the mask.
The most important thing is to be absolutely sure that you have killed the hit, no maybe’s or nearly, if you don’t ensure its gone before you do the follow up breathing there’s a good chance of getting a rebound hit & that will be even harder to get rid of than the original one.

Cheers
Barry
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Re: Help in getting OXYGEN prescribed
Reply #2 - Jul 8th, 2008 at 9:16am
 
Hi Chuck,

I am one of the goofs that has still not tried 02.   Does aborting with 02 cause rebound HA?  (if properly aborted)

Thank you for the info. 

PF wishes!

Jeannie
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« Last Edit: Jul 8th, 2008 at 9:19am by Jeannie »  

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Re: Help in getting OXYGEN prescribed
Reply #3 - Jul 8th, 2008 at 10:02am
 
Jeannie wrote on Jul 8th, 2008 at 9:16am:
Hi Chuck,

I am one of the goofs that has still not tried 02.   Does aborting with 02 cause rebound HA?  (if properly aborted)

Thank you for the info.  

PF wishes!

Jeannie

I've never had rebound headaches from 02, but, if I do not stay on the 02 long enough, the beast will ramp back up.

Beth
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Re: Help in getting OXYGEN prescribed
Reply #4 - Jul 8th, 2008 at 12:23pm
 
bump Wink
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ClusterChuck
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Re: Help in getting OXYGEN prescribed
Reply #5 - Jul 8th, 2008 at 10:42pm
 
Jeannie wrote on Jul 8th, 2008 at 9:16am:
Hi Chuck,

I am one of the goofs that has still not tried 02.   Does aborting with 02 cause rebound HA?  (if properly aborted)

Thank you for the info. 

PF wishes!

Jeannie

No, it does not.  But the key part of your question is: if properly aborted

Too many people stop sucking on the ole O2 once they feel it lessening, or after MOST of the pain and sensation is gone.  Stay on the O2 for several minutes after ALL pain and sensation is gone.


Now, WHEN will YOU get YOUR oxygen??  Huh???

Chuck
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Re: Help in getting OXYGEN prescribed
Reply #6 - Jul 9th, 2008 at 1:28pm
 
My favorite topic... Oxygen Therapy as a cluster headache abortive…  Thank you Chuck…  I was hoping to be able to brief some of the following info at Dallas, but timing and the agenda just didn’t work out so here goes...  I’ll be able to reach more of you this way. 

I've been doing more research and collecting additional data on abort times as they relate to oxygen flow rates, non-rebreather (NRB) masks, and carbon dioxide (CO2) buildup and how these factors impact the effectiveness of oxygen therapy to abort cluster headache attacks.  The buzzword is hyperventilation.

In keeping with the standard disclaimer, I’ve provided the following for information purposes only.  See your doctor or neurologist for medical advice and treatment of your cluster headaches.  They’ll catch up with us at some point.
     
An oxygen flow rate of 12-15 liters/minute with a non-rebreather mask is a MUST on your prescription for oxygen therapy, as is the phrase, "AS NEEDED FOR CLUSTER HEADACHES."

In practice, 15 liters/minute is the minimum effective oxygen flow rate used by most successful oxygen therapy users – the really successful oxygen therapy users have oxygen regulators capable of delivering 25 liters/minute or higher.  Any flow rate less than 15 liters/minute, for example at 7 to 9 liters/minute, can easily result in a build up of CO2 due to the increased physical activity associated with the cluster headache attack AND the restricted respiration rate caused by the non-rebreather mask.  All this results in a situation where you cannot achieve an abort with oxygen therapy when the respiration rate is constrained by using low oxygen flow rates administered with a non-rebreather mask.

Although an oxygen flow rate of 7 to 9 liters/minute will easily result in a hemoglobin oxygen saturation at or near 100% under normal conditions, a respiration rate constrained to this flow rate by using a non-rebreather mask will result in a CO2 build up well above normal and displace or not leave room for oxygen molecules to attach to the hemoglobin in each red blood cell.  In short, while you may be getting more oxygen than normal at a flow rate of 7 to 9 liters/minute, the restricted respiration rate allows CO2 in the arterial blood steam to climb above normal levels.

It gets worse…  It's not the lack of oxygen that controls the rate of respiration, it's the level of CO2.   During strenuous activity, CO2 builds up faster in the bloodstream than it can be expelled from the lungs at normal respiration rates.  As a result, chemical receptors in the body signal an increase in respiration to reduce CO2 levels, and you start gasping for breath panting like a big dog. 

On top of that, CO2 is a powerful vasodilator.  As a cluster headache attack is associated with a dilation of the arteries and vascular structures around your trigeminal nerve, a buildup of CO2 above normal levels causes increased vascular dilation and that makes cluster headache attacks more painful and last longer. 

CO2 is such a powerful a vasodilator that even a slight increase in CO2 above normal levels will totally negate and overpower the vasoconstriction (a cluster headache abortive mechanism) provided by breathing 100% oxygen.  As CO2 levels continue to build, you start having panic attacks and become even more animated generating more CO2.  It's a vicious cycle.

The only way to prevent CO2 buildup during oxygen therapy is breathe at a rate faster than normal and with a greater tidal volume than normal.  This is called hyperventilation and requires a minimum oxygen flow rate of 25 liters/minute. 

Preventing CO2 buildup may not be possible at high Kip-levels even with an oxygen flow rate of 15 liters/minute and a properly functioning non-rebreather mask.  A higher respiration rate (and oxygen flow rate) will be needed when cluster headache attacks rise above Kip-6 to Kip-7 on the pain scale.

The normal adult respiration rate at rest is 15 to 18 respiration cycles/minute with an average of a half liter tidal volume.  Tidal volume is the volume of air inhaled and exhaled with each breath.  If you do the math, a flow rate of 7 to 9 liters/minute and a tidal volume of .5 liters, works out to a respiration rate of 14 to 18 cycles/minute.  At an oxygen flow rate of 15 liters/minute and a tidal volume of 1 liter, the respiration rate is 15 cycles/minute.  Again, even that respiration rate will be insufficient to cast off excess CO2 during a high Kip-level attack while you’re dancing around the room doing the tarantella (or Cha-Cha) and banging your head off the wall.

At this point, I can hear some of you saying…  Who is this guy and what heck is he trying to tell us and why?   

The answers are simple.

I’m an old Navy fighter pilot with over 3000 hours flying Navy jets.  All of that flight time was spent breathing 100% oxygen continuously from takeoff to touch down on missions lasting over 2 hours and on some extended mission lasting up to 7 hours.  I can also guarantee you that I would routinely suck down that 100% oxygen at flow rates well above 30 liters/minute at high respiration rates. 

I’m still here… so the safety of breathing that much 100% oxygen for periods of 2 hours or more is not an issue.  In fact, the US Navy has been requiring Navy and Marine Corps pilots flying tactical fixed-wing aircraft to breathe 100% oxygen from takeoff to touch down for over 60 years.
     
I’ve also been using oxygen therapy since I went chronic over 4 years ago and for the last two, at flow rates well above 15 liters/minute.  I’ve not used any other cluster headache medication except oxygen in the last 2 years and now routinely abort my attacks in two to three minutes.

The message of this post is equally simple.  Hyperventilation with 100% oxygen is the key to successfully aborting cluster headache attacks.  Oxygen is good and CO2 is bad. 

If you don’t believe me, watch the video of Chuck from the cluster headache documentary.  Pay close attention to the reservoir bag as it collapses completely with each breath he takes from his non-rebreather oxygen mask.  He was getting plenty of oxygen but he was unable to cast off excess CO2 with a high enough respiration rate due to the constrained oxygen flow rate.  That made the oxygen therapy ineffective and the very painful attack last far too long.

Take care.  I'm only trying to help.  'Hope to see some of you in Dallas so I can show you how well properly administered oxygen therapy works.

V/R, Batch

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Re: Help in getting OXYGEN prescribed
Reply #7 - Jul 9th, 2008 at 2:04pm
 
PETE   Smiley   dont you have more?
we need much more!!!!

Chuck tks. for the post......   Smiley

we all (most) use O2......

we need the know how......

Michael
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Re: Help in getting OXYGEN prescribed
Reply #8 - Jul 9th, 2008 at 2:17pm
 
Pete - My question to you: Why is it that I am able to abort almost every single attack I get at between 10 and 12 LPM, usually in less than 10 minutes? I understand the whole hyperventilation thing preventing the buildup of CO2, but I am curious as to why I don't have to jump through the hoops you've described, yet it works fine for me.

Bill
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Re: Help in getting OXYGEN prescribed
Reply #9 - Jul 9th, 2008 at 4:40pm
 
Bill,

Good question.  Although we're all wired differently when it comes to cluster headaches, the basic laws of physics and fundamental physiology still prevail in the end.  A flow rate of 10 to 12 liters/minute will work well (but not great) for an old hand like you that doesn't let an attack get you all excited.  My guess is you're calm and cool as a cucumber during a hit so don't generate much excess CO2.  And, you start your oxygen therapy at the first sign of an approaching attack to keep from getting a screamer.  You're also a non-smoker so your lungs are more efficient in oxygen and CO2 transport in and out of the blood stream.

I would also venture that a higher oxygen flow rate accompanied by a higher respiration rate would bring your abort times down to less than 5 minutes. 

The reasons for this follow:  Reducing CO2 levels below normal through voluntary hyperventilation produces a temporary physiological condition called respiratory alkalosis.  That means you're casting off more CO2 through hyperventilation than your body is producing and this results in two temporary conditions.  An elevated pH (less acid from CO2) and the condition called hypocapnia (A lower partial pressure of CO2 than normal). 

An elevated arterial pH above the normal 7.4 and hypocapnia go hand in hand to create a major case of cerebral vasoconstriction and when that occurs near the affected trigeminal nerve bundle, it helps abort the cluster headache attack just like hyperoxia. 

Sooo....  When you abort a cluster headache attack with an oxygen flow rate that supports hyperventilation, you've got three abortive factors working in your favor that all cause cerebral vasoconstriction.  (1) The obvious hyperoxia, more arterial oxyhemoglobin than normal, and (2) Hypocapnia + an elevated pH (lower arterial CO2 levels). Hyperoxia and hypocapnia work independently from each other and in combination.  Finally… (3) the combination of hyperoxia and hypocapnia/elevated pH.  This combination brings on the added effect of super-oxygenating arterial hemoglobin.  The oxygen carrying capacity of the blood hemoglobin is very sensitive to changes in blood pH.  This is called the Bohr effect.  As hypocapnia lowers the pH of the blood passing through the lungs and that in turn increases hemoglobin's affinity for oxygen, the net result is the hemoglobin in each blood cell carries up to 11% more oxygen than normal. 

It turns out that of the three physiological conditions arising from using oxygen therapy at flow rates capable of supporting hyperventilation, hypocapnia is the more powerful vasoconstrictor by a factor of two, followed by hyperoxia.   Moreover, the abortive effect of these two conditions are additive, meaning you'll get three times the abortive effect (vasoconstriction) plus the added benefit of a super-oxygenated hemoglobin than if you used 100% oxygen at a normal respiration rate.  Several studies have shown that hyperoxia plus hypocapnia also resulted in higher oxygenation of brain tissues even with cerebral vasoconstriction so there’s no real worry about cerebral hypoxia (not enough oxygen in the brain).

Again, good question.  See you in Dallas?

Take care,

V/R, Batch
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Re: Help in getting OXYGEN prescribed
Reply #10 - Jul 9th, 2008 at 4:46pm
 
Well, that certainly makes sense. I have learned over the years to stay as calm, cool and collected as I can while trying to abort. To do otherwise works contrary to my immediate goal of getting rid of the pain.

But I'm not a non-smoker. So that part doesn't fit.

Won't be in Dallas. Have fun. And thanks for the explanation.

Bill
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Re: Help in getting OXYGEN prescribed
Reply #11 - Jul 9th, 2008 at 7:06pm
 
Excellent thread Chuck, and great info!!!   Pete, as always, you make it easy to understand.

Thanks to all.
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Re: Help in getting OXYGEN prescribed
Reply #12 - Jul 10th, 2008 at 1:58am
 
Bump.

A couple years ago, when I got hit with an unexpected monster cycle on vacation, and the hits were kip 9's and 10's, and the shadows were 7's and 8's, coming at about an hour apart and the trex wasn't working, and the O2 wasn't really doing the trick, someone here suggested hyperventilating on the O2.

I sucked that O2 at 15 LPM, as high as the regulator would go, as fast and as deeply as I could, emptying the bag with every breath. It worked. Thank goodness for that suggestion, or I would have ended up in the hospital. Hyperventilating the O2 got me through the weekend, until I could talk to my neuro Monday morning, and get a pred taper called in.

O2 works, and works well for most people, but you need to hit it as soon as you feel it start to come on. It kills the hits faster, the sooner you can start breathing it.

Good thread, Chuck.
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Re: Help in getting OXYGEN prescribed
Reply #13 - Jul 10th, 2008 at 12:39pm
 
I read the CH treatment guidelines in here. It still states 7-10 LPM. There are still things to do!

Thank you guys for your great work. Smiley

Sanna
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Re: Help in getting OXYGEN prescribed
Reply #14 - Jul 12th, 2008 at 4:43am
 
Sana,

We're working on that too, but can't go into details due to confidentiality and non-disclosure agreements.

V/R, Batch
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Re: Help in getting OXYGEN prescribed
Reply #15 - Jul 12th, 2008 at 1:36pm
 
This is a great thread you guys.  Thanks.

How can we lock this thread at the top of the meds board so it doesn't fade away?

Sandy
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Re: Help in getting OXYGEN prescribed
Reply #16 - Jul 12th, 2008 at 8:03pm
 
In all honesty, is there any reason why anyone with Ch should not get O2 as a first attempt to abort.  Yes, if it doesn't work, you would abandon it, but why would any Cher not try O2 first (or at least ask for it to be the first thing you try).

If nothing else, every person who joins or visits this site should read the oxygen info section.
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Re: Help in getting OXYGEN prescribed
Reply #17 - Jul 12th, 2008 at 8:45pm
 
FramCire wrote on Jul 12th, 2008 at 8:03pm:
In all honesty, is there any reason why anyone with Ch should not get O2 as a first attempt to abort.  Yes, if it doesn't work, you would abandon it, but why would any Cher not try O2 first (or at least ask for it to be the first thing you try).

If nothing else, every person who joins or visits this site should read the oxygen info section.

Cuz we live in a pill-poppin' society, that's why.
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Re: Help in getting OXYGEN prescribed
Reply #18 - Jul 14th, 2008 at 2:58pm
 
Hello!
I have an O2 tank at home (thank god!) that is supplied to me by the goverment, so no problem there... But I want to buy myself a new mask, because the one I have is not great (the one they supplied with the tank), and I'm wondering how to go about getting one? I clicked on the link for O2 info, but it brings me to the Linde group, and they seem to be supplying only the USA...
Also, is it possible to buy a new regulator that goes with the tank? The one I used to have would let me set it to the desired flow (I would use about 13 to 15 lpm), but they have changed suppliers, and this new one only goes up to 10 lpm...
Thanks!
Jessica
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Re: Help in getting OXYGEN prescribed
Reply #19 - Jul 19th, 2008 at 4:47am
 
jess-MTL wrote on Jul 14th, 2008 at 2:58pm:
Hello!
I have an O2 tank at home (thank god!) that is supplied to me by the goverment, so no problem there... But I want to buy myself a new mask, because the one I have is not great (the one they supplied with the tank), and I'm wondering how to go about getting one? I clicked on the link for O2 info, but it brings me to the Linde group, and they seem to be supplying only the USA...
Also, is it possible to buy a new regulator that goes with the tank? The one I used to have would let me set it to the desired flow (I would use about 13 to 15 lpm), but they have changed suppliers, and this new one only goes up to 10 lpm...
Thanks!
Jessica


A good place to look for both regulators and masks is eBay.  You can get them fairly cheap there.

Chuck

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Re: Help in getting OXYGEN prescribed
Reply #20 - Jul 20th, 2008 at 2:23pm
 
When I am getting hit I RUN to the 02. First starting 02 I am dialed in at 18 to 20 lpm. Usually I am pretty worked up and lung capacity keeps up with this flow rate.  As the first 10 minutes goes by things calm down lung consumption falls and I find that I am turning it down to around 12 lpm for the next ten minutes, or I waste abunch.
Hope that makes sense.
I wonder if I should leave it up and try to keep up with the flow rate?
Undecided Undecided Undecided Undecided
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Re: Help in getting OXYGEN prescribed
Reply #21 - Jul 21st, 2008 at 8:43am
 
Thebbz,

Yes...  Try to keep up with the highest flow rate possible !!! The higher the flow rate and respiration rate the better.  Your average abort time should be less than 6 minutes if you're using oxygen therapy properly.

V/R, Batch
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Re: Help in getting OXYGEN prescribed
Reply #22 - Jul 23rd, 2008 at 1:39am
 
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Re: Help in getting OXYGEN prescribed
Reply #23 - Jul 23rd, 2008 at 3:21am
 
since i can't stand to have anything touch my face during and an attack during my last cycle i stuck the tube directly in my mouth, cranked up the 02 to 25 lpm, and hyperventilated. thanks to thebbz i found a mouth piece that i can use.i haven't found an abortive  that works as good as that. i burn up a half of a bottle that way but man does it work. if i can catch it within the first 15 to 45 seconds it usually doesn't get above a 5 or a 6 and the attack lasts less than 5 minutes. if i hadn't met all you fine people up at davcon i wouldn't have my 25 lpm regulator nor would i have had the privilege of having pete explain  all this priceless information to me. and yes pete i do understand Wink i think during my next cycle i will shave my head and try that icecube abortive you were talking about. Grin
                                                                 
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Re: Help in getting OXYGEN prescribed
Reply #24 - Aug 6th, 2008 at 9:10pm
 
Brilliant thread.

I talked to my GP about getting O2 and he was less than positive.

I'm seeing my neuro in a few weeks' time and I'll make sure he writes to my GP to tell him that I must get 02 if the need arises.

If need be I will print out some of the medical papers that recommend 02 as a treatment.

Thanks.

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Help defeat cluster headaches - use Linux
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