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New 02 Prescription.. (Read 3349 times)
Emily G
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New 02 Prescription..
Sep 6th, 2015 at 11:04pm
 
Have a question about my 02 script.. it's probably really silly..

I've been fighting with my terrible neuro to even get a script (kept telling me 02 is a clunky, a pain and inconvenient) and finally got one (I have an appointment with a new doc in oct. but this one will have to do until then) and when i left on friday i realized he wrote me a script for 4 lpm. Does that matter? I'm going to the medical supply place on Tuesday and don't want that to slow the process down as I'm suffering pretty badly and I know I need at least 15 lpm. Not sure If i need to deal with the neuro again and get a new script or if what the says  doesn't really matter as long as i have a script for 02 and the right equipment. I ordered the masks already from here and know i did a regulator that can handle 15 lpm or higher. Any help with the script is appreciated. thank you!
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Racer1_NC
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Re: New 02 Prescription..
Reply #1 - Sep 6th, 2015 at 11:52pm
 
As long as you get the tanks (assuming insurance is helping you with costs), just smile and take what ever regulator they offer up. Then hit Amazon for a 25 lpm reg.....  Wink
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Marc
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Re: New 02 Prescription..
Reply #2 - Sep 10th, 2015 at 9:57pm
 
Emily G wrote on Sep 6th, 2015 at 11:04pm:
Have a question about my 02 script.. it's probably really silly..

I've been fighting with my terrible neuro to even get a script (kept telling me 02 is a clunky, a pain and inconvenient) and finally got one (I have an appointment with a new doc in oct. but this one will have to do until then) and when i left on friday i realized he wrote me a script for 4 lpm. Does that matter? I'm going to the medical supply place on Tuesday and don't want that to slow the process down as I'm suffering pretty badly and I know I need at least 15 lpm. Not sure If i need to deal with the neuro again and get a new script or if what the says  doesn't really matter as long as i have a script for 02 and the right equipment. I ordered the masks already from here and know i did a regulator that can handle 15 lpm or higher. Any help with the script is appreciated. thank you!


Follow the advice given by Racer1_NC already!

But, it would appear that you need to either find a new one, or educate yours. Receiving incompetent care is not an option for Clusterheads.

Marc
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Emily G
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Re: New 02 Prescription..
Reply #3 - Sep 12th, 2015 at 10:05pm
 
Thank you for your help and suggestions-- 02 is finally delivered and set up! Appt. with new neuro is also set up!
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Mike NZ
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Re: New 02 Prescription..
Reply #4 - Sep 13th, 2015 at 2:51am
 
Great!

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Well worth reading to make sure you're doing everything right.

Now I hope that your O2 gear is soon gathering dust as your cycle comes to an end as no CHs at all is better than CHs aborted with O2.
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slacker032
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Re: New 02 Prescription..
Reply #5 - Sep 30th, 2015 at 10:33am
 
Racer1_NC wrote on Sep 6th, 2015 at 11:52pm:
As long as you get the tanks (assuming insurance is helping you with costs), just smile and take what ever regulator they offer up. Then hit Amazon for a 25 lpm reg.....  Wink


Or this for M-tanks:

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Emily G
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Re: New 02 Prescription..
Reply #6 - Oct 16th, 2015 at 9:33pm
 
Okay here is my update on o2.. please tell me if I'm doing something wrong..but I can't seem to find any relief. I've been reading up on this site and trying different things over the past month (with the exception of the past week when I've been on a headache vacation thanks to prednisone which is now unfortunately over).

Usually after 20 minutes I'm in much more pain than when I started with the o2 (assuming because the headache has progressed at this point not because the O2 is making it worse) maybe I'm just one of the unlucky ones that doesn't respond... I've never had the experience of relief I've read about on here where the headache is completely gone.

Started with a new neuro and we are trying some new meds, but did finally get by o2 scripts worked out and have two tanks at home now. One next to my bed and one next to the couch so they are within easy reach when I feel a a headache come on. Most times I can be breathing O2 within 2 minutes. I've been using the non-rebreather masks that I ordered from this site. I've tried with both the mask, and also tried taking the mask off and using just the mouth piece. I have the 02 set at 15 LPM. I'll use it for 20 minutes, take a break for 10, and try again. I've recently just tried for 20 minutes and stopped-- since I've not been getting relief the trying again part seems like a waste-- but maybe not?

I've read up on the hyperventilation technique and given that a try with no luck.

What am I missing? Anything?

Any suggestions, strategies, advice are welcome. Thank you!
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maz
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Re: New 02 Prescription..
Reply #7 - Oct 17th, 2015 at 5:35pm
 
Hi Emily
You seem to be doing everything right with the 02, unless you can get more than 15lts per minute out of it. Some people need more. Here in England it's not possible - only 15lts available, but you don't say where you live.

CH is caused by a blood vessel in the brain which dilates and presses against the nerve it runs next to. High flow oxygen constricts the vessel, thus taking the pressure off, so I don't know why it's not working for you, unless.............

Is it possible you have been misdiagnosed. There are several conditions which present the same symptoms and pain as CH, but are caused by different reasons, and therefore require different treatment. I have no idea if 02 works for those conditions too - some one will come along and tell us if I'm wrong, but maybe the reason 02 is not working, is because you don't have CH.   99.9% of us have been misdiagnosed to start with and it's been a long journey to actually get a correct diagnosis. Five years in my case, and even then I had to find out for myself and suggest it to my neuro. He swore that women don't get clusters and insisted on treating me for all the other conditions - which I didn't have.  I finally got a different neuro who agreed with me, treated me correctly, and finally found me some relief.

Ask your new neuro about the possibility of trigeminal neuralgia, paroxysmal hemicrania, and sunct syndrome. They are all very similar to CH, and as I say, I don't know if 02 works for them.

Send a PM to Batch and ask him to explain about the D3 regime, which has been a miracle for many of us. As for drugs - ask to try sumatriptan injections (may be called imigran or imitrex depending on where in the world you live).This will abort a CH (if that's what it is) in about 5 - 7 minutes.

Keep us updated,
Maz
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Batch
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Re: New 02 Prescription..
Reply #8 - Oct 17th, 2015 at 7:41pm
 
Hey Emily,

There are a couple things to try in order to improve the effectiveness of oxygen therapy as an abortive and after many years of using both, I'm quite sure you'll find them very effective.

The first is a procedure and technique I call oxygen therapy with hyperventilation at forced vital capacity tidal volumes. 

In simple terms you'll hyperventilate with air for 30 seconds then inhale a lungful of 100% oxygen and hold it for 30 seconds then repeat the entire sequence as many times as needed to abort the CH.  Typically 3 to 6 complete sequences (3 to 6 minutes) if started as soon as you detect an approaching CH. 

This procedure differs from another procedure that requires hyperventilating with 100% oxygen, which requires oxygen flow rates of 25 to 40 liters/minute.

Hyperventilation is essentially ventilating the lungs more than is needed to maintain normal oxygen and carbon dioxide (CO2) blood levels.

Tidal Volume applies to the volume of air inhaled and exhaled under normal breathing conditions... The air comes in and goes out like the tide...  Forced vital capacity tidal volume is maximum amount of air a person can expel from the lungs after a maximum inhalation using force.

During hyperventilation we cast off more CO2 than normal, essentially cast it off faster than the body generates CO2 through normal metabolism.  At the same time we increase the uptake of oxygen resulting in higher blood concentrations of oxygen than during normal respiration.

So here's the actual procedure and breathing technique.

1. Start by standing with your jaw dropped like saying the word "Haw."  Standing gives your diaphragm full range of motion to better ventilate the lungs and dropping your jaw inhaling and exhaling through your mouth ensures the least respiration resistance.  Lean against a wall as you'll likely get dizzy using this procedure and breathing technique.

2.  Exhale forcibly and rapidly until if feels like there's your lungs are empty...  they're not... at this point, do an abdominal crunch like doing a sit-up and hold the crunch (and chest squeeze) until your exhaled breath makes a wheezing sound for a couple seconds... This will squeeze out another half to a full liter of exhaled breath highest in CO2 concentration... It also sounds terrible, but it's essential... so get used to it...

3.  As soon as you've done the forced exhalation with a crunch and wheezed for a couple seconds, immediately throw your shoulders back and inhale a lungful of room air until you can't inhale any more, then without delay start the forced exhalation. 

4. If you're doing all this forced hyperventilation correctly, you should be able to complete 10 of these forced exhalation-inhalation cycles in 30 seconds.

5. On the 10th exhalation, have your clusterO2 kit ready with a reservoir bag full of oxygen using just the mouthpiece...  Hold the 10th force exhalation with abdominal crunch and chest squeeze until the wheezing stops (3 to 4 seconds)... then inhale the 100% oxygen from the clusterO2 kit mouthpiece until your lungs are completely full... then hold that 100% oxygen for 30 seconds.

If you're doing this procedure and breathing technique correctly, you'll experience paresthesia - a slight tingling or prickling sensation around your mouth, face, fingertips, lower legs and feet.  You'll also experience a slight dizziness which is why you'll want to lean against a wall...

At the end of the 30 seconds holding a lungful of 100% oxygen, restart the entire sequence and keep repeating it until the CH pain is completely gone.

A few side notes...  This procedure and breathing technique are very safe.  The risk of passing out is extremely low and nearly impossible...  I can't tell you how many times I wished I could pass out to get away from the CH pain while using this procedure... or hyperventilating with 100% oxygen with an oxygen demand valve...  but I never did... and I've been using these procedures for 10 years...

I've also run this oxygen therapy procedure through one of the top Pulmonologist in respiratory medicine at Swedish Hospital in Seattle...  He brought his wife over (she's a chronic CH'er) so I could teach both of them how to use this procedure and breathing techniques properl.  He thinks this method of oxygen therapy is very safe as well.

When you start hyperventilating at forced vital capacity tidal volumes, you'll likely experience an uncontrollable urge to cough...  This is very normal and the urge to cough clears in few seconds. The coughing is caused by atelectasis - a condition in which one or more areas of your lungs where the alveole have collapsed due to the forced exhalation... 

Fortunately, this type of atelectasis is a temporary condition and coughing clears it in a matter of seconds. After that, the lung's alveole secrete a natural surfactant that prevents the alveoli from collapsing. Lung surfactant also makes it easier for oxygen to penetrate the lung surface lining and move into the blood.

While you're holding the 100% oxygen in your lungs, try to relax as much as possible...  We CH'ers have an uncanny ability to detect the slightest decrease in CH pain, so you'll know within the first two complete cycles that this method of oxygen therapy is working to abort your CH.

The respiratory physiology behind this very effective method of aborting CH deals with several factors...  The first is reducing the CO2 arterial partial pressure (PACO2) well below normal.  As CO2 forms an acid in water, reducing arterial CO2 reduces the acid content of the blood making it more alkaline with a higher pH.  Accordingly, intentionally hyperventilating results in a condition called respiratory alkalosis. 

While all this is going on, the elevated arterial pH causes blood hemoglobin to offload CO2 faster as it passes through the lungs.  It also causes hemoglobin to upload even more oxygen at a faster rate.  This overall process is called the Bohr Effect.  When you inhale the lungful of 100% oxygen you're super-oxygenating the blood flowing to the brain where oxygen has a greater CH abortive effect

Here's where all this gets even more interesting...  Chemical sensors in the large heart arteries and brain sense the low PACO2 and elevated pH.  This in turn, triggers the body's homeostatic process that controls blood pH to slow the respiration rate... (This doesn't happen as you're intentionally hyperventilating).  It also triggers the heart to beat more slowly and the arteries, arterioles, and capillaries throughout the body, including in and around the trigeminal ganglia to constrict.  Arterial pH homeostasis does all this to slow the flow of blood to the lungs in order to let the PACO2 rise back to normal levels.  The low PACO2, elevated arterial pH and elevated PAO2 are also responsible for the paresthesia... 

The super-oxygenated blood flow and vasoconstriction associated with respiratory alkalosis combine to provide the fastest CH abort possible.

The best thing to do at this point is practice the above oxygen therapy procedures and breathing techniques before the next CH hits...  That way you'll get used to the paresthesia and coughing and they won't spook you when you need this method of oxygen therapy the most... aborting an actual CH...

The second thing you need to try is the anti-inflammatory regimen with 10,000 IU/day vitamin D3, Omges-3 fish oil, and the vitamin D3 cofactors...  You can read about this regimen on page one of the following link:

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A little history...  I developed the anti-inflammatory regimen in October of 2005 to improve my oxygen therapy abort times...  There was one big problem with it...  It worked so well that by the second day, I stopped experiencing CH completely... so I had to park my home oxygen therapy kit in the closet under a plastic bag...

Don't be afraid to ask questions...

Take care and please keep us posted,

V/R, Batch

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« Last Edit: Oct 17th, 2015 at 7:49pm by Batch »  

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