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Thanks guys (Read 1723 times)
Jonnie
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Thanks guys
Dec 6th, 2012 at 8:27pm
 
As i newbie to the site and the diagnoses, I have been "sickly" since I was 10-11. I am so grateful that so many of you are so well informed about this horrific pain. I have always been treated as if I was some drug hound and all I really want is information.

I noticed alot of you talk about energy drinks. What kind do you recommend? How much how often? I read the article on O2 and I have tried the 12ML for 20 minutes and it seems like all it does is prolong the headache and when it comes it is worse than usual? Am I doing something wrong?

Doc told me to stop drinking coffee I miss it. Is this necessary?

Look forward to hearing from you.
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Skyhawk5
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Re: Thanks guys
Reply #1 - Dec 6th, 2012 at 10:45pm
 
A proper mask with a bag on it is required for O2 to work. No nasal canula's or mask's without a bag. Also the mask must seal as as described on our O2 page. Also the O2 must be from tanks not a concentrator.

I use Monster energy drinks.

Don
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« Last Edit: Dec 6th, 2012 at 10:46pm by Skyhawk5 »  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Mike NZ
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Re: Thanks guys
Reply #2 - Dec 6th, 2012 at 10:56pm
 
Jonnie wrote on Dec 6th, 2012 at 8:27pm:
I read the article on O2 and I have tried the 12ML for 20 minutes and it seems like all it does is prolong the headache and when it comes it is worse than usual? Am I doing something wrong?

Doc told me to stop drinking coffee I miss it. Is this necessary?


For oxygen, the combination of a non-rebreather mask and a high flow rate are essential. The higher the flow rate the better for most people.

As for coffee or rather caffeine, it can make a difference with migraines, but rarely for CH.
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Jonnie
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Re: Thanks guys
Reply #3 - Dec 6th, 2012 at 11:42pm
 
Thanks again Mike. I do not understand what is high flow? I have a large oxygen tank and 2 portable tanks. The numbers start at .5 and go up to 15. I had a mask with a bag and the tech who delivered it told me to take the bag off. The next guy who delivered it told me use the canulas and he ordered me a new mask, I just got it today. I will re-look at the info and try it. Thanks so much.

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Mike NZ
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Re: Thanks guys
Reply #4 - Dec 7th, 2012 at 2:01am
 
Jonnie wrote on Dec 6th, 2012 at 11:42pm:
Thanks again Mike. I do not understand what is high flow? I have a large oxygen tank and 2 portable tanks. The numbers start at .5 and go up to 15. I had a mask with a bag and the tech who delivered it told me to take the bag off. The next guy who delivered it told me use the canulas and he ordered me a new mask, I just got it today. I will re-look at the info and try it. Thanks so much.


High flow rate is pretty much anything over about 10lpm (the numbers on your scale will be in lpm - litres per minute). You're best to set it to 15.

Ignore the two oxygen 'experts'. Canulas are useless and taking the bag off a mask makes it almost useless. Just use the mask you have with the bag and you'll get much quicker aborts. They will be used to advising people with breathing problems, not CH, so their knowledge will be based around that area. Although you rarely get someone who knows what they are doing.

If you want a really, really good mask, get it from the CH store - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register - this is the one lots of people here use to very good effect.
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Potter
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Re: Thanks guys
Reply #5 - Dec 7th, 2012 at 10:04am
 
Jonnie wrote on Dec 6th, 2012 at 11:42pm:
Thanks again Mike. I do not understand what is high flow? I have a large oxygen tank and 2 portable tanks. The numbers start at .5 and go up to 15. I had a mask with a bag and the tech who delivered it told me to take the bag off. The next guy who delivered it told me use the canulas and he ordered me a new mask, I just got it today. I will re-look at the info and try it. Thanks so much.



That's absurd.  The Oxygen would run out on the ground.  Tanks come with letters on them.  What are they please.

                Potter
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Jonnie
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Re: Thanks guys
Reply #6 - Dec 7th, 2012 at 12:24pm
 
I am blonde so I have a tendency to be a little ditzy. There are a ton of letters and numbers stamped on the tank. One starts with TC and the other starts with DOT are either of these the ones you are looking for?
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Re: Thanks guys
Reply #7 - Dec 7th, 2012 at 12:56pm
 
Quote:
I am blonde so I have a tendency to be a little ditzy.

You can knock that off anytime.
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Jonnie
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Re: Thanks guys
Reply #8 - Dec 7th, 2012 at 1:04pm
 
Okay  Cheesy
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Jonnie
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Re: Thanks guys
Reply #9 - Dec 7th, 2012 at 1:18pm
 
I looked at the oxygen info page and the tank I have is an M tank and the smaller tanks are E tanks.
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Re: Thanks guys
Reply #10 - Dec 7th, 2012 at 1:55pm
 
Jonnie wrote on Dec 7th, 2012 at 1:18pm:
I looked at the oxygen info page and the tank I have is an M tank and the smaller tanks are E tanks.

   
   Cool now we've progressed beyond big and little.  For sure get the opti-mask.

                Potter
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Batch
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Re: Thanks guys
Reply #11 - Dec 7th, 2012 at 2:41pm
 
Jonnie,

The nasal cannula is useless for aborting cluster headaches.  It can't deliver a sufficient volume of oxygen... but it will dry your nasal passages at a flow rate of 15 liters/minute...

You need a good non-rebreathing oxygen mask like the $27.50 O2PTIMASK™ kits DJ sells at the CH.com store in the yellow tab at the left of this screen...  It has a 3-liter reservoir bag and they last...  I have one that's 5 years old...  it's still working just fine.

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The 3-liter reservoir bag lets you inhale a complete lung full of oxygen in a single rapid inhalation cycle as fast as possible with minimum resistance and no delays waiting for the reservoir bag to inflate.

I don't use the mouthpiece or face mask.  Instead, I breathe straight from the green T-shaped manifold...  Less inhalation resistance and dead space containing exhaled CO2.

You need an oxygen regulator capable of delivering a flow rate of at least 25 liters/minute to support hyperventilation...  40 liters/minute is even better. 

Buy one now before the end of the year...  Obamacare kicks in 1 Jan 2013.  The increased cost of medical insurance due to Obamacare and the new medical device tax, also a part of Obamacare, is going to drive up the cost of oxygen regulators...

Hyperventilating with 100% oxygen is very safe and it results in much faster aborts than oxygen therapy at a flow rate of 15 liters/minute...  like up to 3 to 4 times faster with better than 97% efficacy across all pain levels up to and including a Kip-9... 

Once a cluster headache has hit Kip-10 all bets are off...  At that point you're in for some heavy sledding and you'll just be along for the terrible ride unless you've got a bailout/escape abortive like an imitrex (sumatriptan succinate) injection or nasal spray...

The reason hyperventilation during oxygen therapy is so much more effective is you blow off CO2 faster than your body generates it through normal metabolism...  You can't do this at normal respiration rates ~ a flow rate of 15 liters/minute.

If you're hyperventilating properly and long enough, 8 to 10 rapid deep breaths is usually sufficient, you'll start to experience the symptoms of paresthesia - a very slight tingling of the finger tips, lips, and back of the neck.  You'll also experience a slight dizziness...  This is normal and the best indication you've pushed your system into respiratory alkalosis for the fastest abort possible.

In other words, you've cast off enough CO2 to shift your arterial pH to the alkaline side of the 7.4 neutral point.  This in turn stimulates a rapid vasoconstriction in and around the trigeminal ganglia faster than inhalation of 100% oxygen at normal respiration rates.

Paresthesia is very safe and the symptoms dissipate in a couple minutes breathing at normal respiration rates... 

There's also little risk of passing out...  even though you wish you could pass out when the beast is trying to push your eye out of its socket... 

In seven years using this method of oxygen therapy at flow rates up to 60 liters/minute...  I've never passed out...

In as much as you're presently stuck with a 15 liter/minute regulator, you'll need a procedure called oxygen therapy with hyperventilation as opposed to oxygen therapy at flow rates that support hyperventilation which requires oxygen flow rates of 25 to 40 liters/minute.

The basic procedure calls for taking 8 to 10 rapid and deep breaths of room air until you start feeling the symptoms of paresthesa, then take two to three full breaths of oxygen.  Hold the last lung full of oxygen for at least 15 to 20 seconds... then repeat the entire sequence.

The breathing technique used when inhaling oxygen is important...  Start by exhaling rapidly and forcefully from your mouth with jaw dropped like saying the word "Haw."

When it feels like your lungs are empty...  they're not... at that point do an abdominal crunch like doing situps..  Hold the abdominal and chest squeeze until your exhaled breath makes a wheezing sound for a couple seconds...  This will squeeze out another half to full liter of breath...  This is called the end tidal flow and it's highest in CO2 concentration because it's been in the lungs the longest...

As soon as you've wheezed for a couple seconds, inhale rapidly and fully until your lungs are completely full then without any delay, use the exhale technique above.

This procedure is best done standing to give your diaphragm full range of motion...  If your get too dizzy, lean against a wall.

In case you're wondering about my qualifications...  I developed both procedures and breathing techniques in 2005...  I spent the next two years researching the respiratory physiology behind these two methods of oxygen therapy...  Along the way I met with some of the brightest minds in the field of neurology who specialized in treating cluster headache sufferers. 

I also met with Navy flight surgeons, aviation physiologists, and life support engineers at NASA to confirm the safety of these procedures as well as repeated exposure to 100% oxygen.

In 2007, I was joined by two others, Royce Fishman and Michael Berger, in an effort to modify the procedures I'd developed in 2005 to work with an oxygen demand valve.  Royce was working for Linde AG Healthcare and provided the demand valves.

When we'd perfected the demand valve procedure, we conducted a pilot study with seven cluster headache sufferers participating.  They included 6 chronic CH'ers and 1 episodic CH'er, 6 men and 1 woman.

All participants consulted with their PCP or neurologist before participating.  Each participant used either a demand valve or 0-60 liter/minute regulator and an O2PTIMASK™ for 8 weeks logging pain levels and abort times for every cluster headache.  Both methods worked equally well.

All totaled, the seven pilot study participants logged 366 successful aborts out of 367 attempts with these two methods of oxygen therapy at flow rates that supported hyperventilation.  The average abort time across all pain levels up to and including Kip-9 was 7 minutes.

The results of that pilot study are illustrated in the following graph:

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This was the first study of oxygen therapy to use oxygen flow rates greater than 15 liters/minute.  It was also the first study to clearly illustrate the relationship between abort times and pain levels.  In short, the higher the cluster headache pain level at start of therapy, the longer the abort time.

The three of us developed a patent application based on this pilot study titled Method of demand valve oxygen therapy for rapid abort of cluster headache and submitted it to the USPTO in June of 2008.  The patent was published in December 2009 and first issued in January 2011. It's been issued internationally in Europe and other non-EU countries as late as April of 2012.  All without reclama.

You'll find the same graph above in the patent at the following link:

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Take care,

V/R, Batch

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« Last Edit: Dec 7th, 2012 at 2:49pm by Batch »  

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jon019
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Re: Thanks guys
Reply #12 - Dec 7th, 2012 at 8:29pm
 
Jonnie wrote on Dec 6th, 2012 at 8:27pm:
I noticed alot of you talk about energy drinks. What kind do you recommend? How much how often?

Doc told me to stop drinking coffee I miss it. Is this necessary?


Hi Jonnie...welcome aboard...it's a great boat...grab an oar and row...aint no passengers here...we're ALL crew.

Re energy drinks:

The brand matters not....you should be looking for 1000 mg taurine and 100+ mg caffeine per dose...taken IMMEDIATELY when hit arrives. Cold and chugged is important....methinks

Re caffeine:

My belief...from MY experience...a constant intake allows the body to "adapt" and mediate the effects. Think of those you may know who drink potfulls all day... yet can still sleep just fine.

What a clusterhead needs is a "slam"...a near immediate effect that the body can't easily or quickly "smooth out". So yes, your doc is correct...no caffeine...but I would add ....UNTIL you need it......

Best,

Jon
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Re: Thanks guys
Reply #13 - Dec 8th, 2012 at 9:16am
 
Welcome to the board Jonnie, I'm glad you found us. I get so annoyed when i read posts where the oxygen delivery guys are holding themselves out to be experts because they lug and deliver tanks all day! (no slam to any delivery guys on the board!!! Cheesy) I once got into an argument with the warehouse foreman who claimed there was no literature supporting my DOCTORS  prescription for high flow oxygen!

Batch's posts are long and technical, READ THEM ANYWAYS! The man knows of what he speaks. Keep reading here, you'll know more then most neuros.

Joe
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Re: Thanks guys
Reply #14 - Dec 11th, 2012 at 11:15am
 
Not trying to go off subject here...just want to say a public Thank You to Batch for his post above explaining O2. Batch, you have probably posted the info before but this is the first time I have read. It taught me alot Thank you very much for the great post.
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Batch
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Re: Thanks guys
Reply #15 - Dec 12th, 2012 at 12:12pm
 
Bob,

Thank you for the kind words...  I have posted most of the information about oxygen therapy with hyperventilation several times...  but this is the first time I've posted the chart with the results of our pilot study...  It's an eye opener that clearly illustrates the benefit of hyperventilating to cast off CO2 faster than normal and inhaling 100% oxygen.

The whole thing including the pilot study was a team effort with lots of help and support from Brew (Bill), Svenn, Chuck, Royce and Michael Berger...  The pilot study participants are all well known and strong supporters of oxygen therapy here at CH.com.

Now if we can just get more CH'ers to try the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and cofactors, we might have a chance of introducing a game changer to the standards of care treatments for our disorder.

When you look at the results, oxygen therapy at flow rates that support hyperventilation and the anti-inflammatory regimen with vitamin D3 are the two safest, least expensive, and most effective treatments for cluster headaches...

Take care and thanks again for the kind words.

V/R, Batch

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« Last Edit: Dec 12th, 2012 at 12:14pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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