Success with O2 and D3 regiment

[Michfan]

New user, but have been a CH'er for 10 years.  Cycles usually come every other year.  For past cycles, have had success breaking the cycles with verapamil and a slow taper of prednisone.  No such luck with the latest cycle that started in October.  Every time I start to taper off (starting at 60mg a day) prednisone, the headaches return.

 

Had never tried oxygen, so I got some this week.  Results seemed mixed.  Would say the intensity of the headaches is less, but not sure I see much of a difference in the duration.  Typically, my headaches are between 20 and 90 minutes.  For people who are getting relief with oxygen, how long does it normally take before you start to feel relief?  Also, do you use a mask or nasal tube?  The person who delivered the oxygen only left the nasal tubes, so I'm wondering if that could be a reason my results are mixed. 

 

Also, started the D3 regiment.  Seemed to work great.  Went 4 days without a headache, something I hadn't done since before Christmas, but now they are back in full force.  Has anybody else has similar results?

 

Also, have tried  imitrex with no success.

[Dallas Denny]

G'mornin michfan and welcome to the community!

The nasal cannula is completely useless for clusters! At the very least you need a standard non rebreather mask and the best option is a optiO2mask available in the clusterheadaches.com store!

I routinely abort hits in 5 to 8 minutes with O2!

Dallas Denny

[Pebblesthecorgi]

Agree the O2 is a waste if you dont have the proper flow rate, proper mask set up (or Bathes red neck set up) and the correct breathing technique.  Don't give up until you can do it properly.  Also are you using imitrex oral or injection.  It is very unusual not to get a response from subq imitrex in most of these headache syndromes.  D3 can take a while and make sure your are using all of the components especially at the introduction

[CHfather]

Along with the excellent advice/questions from Denny and Pebbles, I wonder whether you have oxygen cylinders/tanks, or a concentrator (machine that makes O2 from room air).  You want tanks.  Your supplier should have a NON-REBREATHER mask for you -- insist that they provide that. (The better mask that Denny mentions is here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit)  If you have tanks, how big are they are what is the lpm on the regulator?  You need at least one big tank (an M tank) and at least one smaller one (an E tank) for portability.  If they have only given you one or two small tanks, that's not enough.

 

An energy shot such as 5-Hour Energy drunk down just before starting the O2 can help speed the abort.

 

It sounds like you're saying that you have been doing repeated steroid tapers.  That's a really bad idea, because of the long-term effects of the steroids.

 

How much verap are you taking?  Are you taking it only when a cycle begins, or continuously?  

[Michfan]

Thanks for all the tips.  I have an air tank and will work on getting the proper mask first thing tomorrow. The regulator is set at 10lpm.

 

As for the Imitrex, have tried the oral and nasal spray.  Have not tried the injections.  Have you noticed a significant difference between the nasal spray and the injection?  Realized the dangerous of the steroid tapers, but only doing them every couple of years, it was a trade off I could live with.

 

I take 480 mg of verapamil a day.  Started back on verapamil once the headaches started.  I have Afib and my cardiologist prefers I take diltiazem, but agreed to let me take verapamil to try and break this cycle.

[Dallas Denny]

G'evenin michfan!

I would urge you to consult with your cardiologist prior to using imitrex with existing heart issues!!

DD

[CHfather]

10lpm is a low flow rate.  It could work for you, but it's low.  Is that as high as the regulator goes, or does it maybe go to 15?  Again, your supplier should have at least a 15 lpm regulator for you. 15 should work, I think, but many people find that 25+ lpm is preferable.  We can discuss this more after your basic setup is in place. 

 

I realize that "small" and "large" are kind of imprecise terms. Is your tank roughly 3 feet tall (or more), or is it roughly two feet tall (or less)?

 

As Pebbles' suggested, it's very rare for injected sumatriptan not to work.  Nasal sprays work for some people, but if it didn't work for you, then you want the injection (split into smaller doses, as I have mentioned, and of course with your doctor's approval (though I presume your doctor approved the spray, and I don't know how different the injection is, particularly if you use the split dose)).

 

More than a few people find that more than 480 verapamil is needed during a cycle.  Up to twice as much as that.  Obviously, another thing that would have to be approved by your doc.

[amon10]

Just a reminder if your going to take verapamil and be on D3, separate the supplements from verapamil by 8-12 hours. I have been on both and will make a difference. The supplements if taken to close to verapamil will lessen the verapamil's effectiveness.

[CHfather]

Thank you for that reminder, amon!!  I think I'm remembering correctly that it is the calcium supplement that has to be taken 8 or more hours away from the verapamil, because verapamil is a calcium channel blocker.

[registrateyourjourney]

And register Your Journey, your attacks, medicine use, oxigen etc to keep better track of what you have done, in what order etc. These data could help uw all in the future.

I use 15 lpm and I abort an attack in about 10-15 min. But sometimes it doesn't. 

[amon10]

Thank you for that reminder, amon!! I think I'm remembering correctly that it is the calcium supplement that has to be taken 8 or more hours away from the verapamil, because verapamil is a calcium channel blocker.

[amon10]

Yes you are correct CHf.

[Michfan]

Been taking the D3 regimen at the same time I take morning meds.  Will try and separate it by 8 hours as best I can.  Take the verapamil 2x day.

[Wilson]

During my last cycle I got hold of a small O2 bottle at work and when I found out how well it worked I wanted my own!  I called up and found out I needed a script!  Called my doctor who had already prescribed Sumatriptan and Amlodipine and told her  that I discovered that O2 worked. I got a big run-around from the O2 supplier, I won't go into it,  but Medical O2 is a big racket in Florida. They wanted to do a study to see if I could use a concentrator (no way) and I wound up with a tiny tank that cost a fortune to rent and fill. It lasted a day.

I talked to some friends and discovered that welding O2 was the same as medical O2, my doctor had a fit, said it was not. I found out many welders use their O2 when hung over, ect. You won't die from it.

I went to a welding shop and got a 4 ft tall tank , filled with O2,  for about 250.00 and an O2 regulator for 99.00. They made me a hose to fit the outlet of the regulator.

I crack the valve open, turn the knob so I get a nice flow of O2, soft enough so I can stop the flow with my thumb. I empty my lungs and inhale deeply, exhale and do it over and over again.  no mask at all. My sinuses are plugged at that point anyway so why bother with a mask?

I can go from a cluster that is full blown, me screaming and pounding on my head pleading with god,  to complete relief in about 5 minutes or less.  I try to catch it before it gets that bad if I can. 

if it comes back... more O2.  It costs about 50.00 for a refill and I am in control of it.  I can go through a big tank in a week or less.  Or it can sit in my closet for over 2 years like the last cluster free period ready for action when I need it.

 

Medical O2 cannot be had at that volume and would cost a fortune where I live. I have a smaller tank at work now and an even smaller one in the car.  I know some won't agree with this but it's a matter of survival for me. I have had no ill effects.

 

I posted this in hope it will help someone else, good luck!

[CHfather]

Thanks for taking the time to make this post, Wilson.  It will help others who see it.

We've been advising about welding O2 for quite a few years here.  There's a considerably less expensive regulator, which comes with the barbed fitting for a hose, here, in case you should need another one: http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator  There's probably a Harbor Freight store near you

Two other quick things.

1. Many find that an energy shot, such as 5-Hour Energy, drunk down at the first sign of an attack will speed the abort (though yours is already quite speedy, particularly when starting from a severe attack).

2.  You might want to try the D3 regimen, which has been very helpful for a very large percentage of the people who are doing it: https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

Interesting that you are getting such excellent results without a mask!  You put the hose in your mouth, I take it.

[xxx]

Hey Michfan, All,

 

Some great comments so far...

 

Regarding a very effective method of oxygen therapy that aborts CH in an average of 7 minutes.

In researching why oxygen regulators with flow rates high enough to support hyperventilation (25 to 40 liters/minute) and oxygen demand valves were more effective with shorter CH abort times than a constant flow regulator at 15 liters/minute, I found that lowering the partial pressure of arterial CO2 (PACO2) was a key component in obtaining fast and reliable CH aborts.  

A lower PACO2 elevates the arterial pH (makes the blood more alkaline) and this is a more powerful vasoconstrictor than inhaled oxygen even at 100% purity.  The elevated alveolar pH enables blood hemoglobin to upload roughly 12-15% more oxygen so this super-oxygenates the blood flow to the brain to help make the abort even faster and more reliable.
 
Around 2010, I developed a new method of oxygen therapy called Hyperventilation and Oxygen Therapy that has proven to be just as effective as a 40 liter/minute oxygen regulator or an oxygen demand valve in delivering rapid and reliable CH aborts.  

This method of oxygen therapy essentially calls for hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds followed by the inhalation of a lungful of 100% oxygen that's held for 30 seconds before exhaling into the room and repeating the hyperventilation with room air.  

You keep repeating this complete sequence until the CH pain is gone...  usually in 4 to 7 sequences (Minutes).

Hyperventilating with room air accomplishes the same thing as hyperventilating with an oxygen regulator set at 40 liters/minute or an oxygen demand valve except it uses no oxygen.  The only oxygen consumed with this method of oxygen therapy is the inhaled lungful ~ 4 liters, that's held for 30 seconds.
 
Accordingly, this method of oxygen therapy consumes roughly 4 liters of oxygen a minute and results in an average abort time of 7 minutes for a total of 28 liters of oxygen per abort.  That's roughly a tenth the amount of oxygen consumed with each abort with an oxygen demand valve or high flow regulator set at 40 liters/minute.

 

The key to the effectiveness of this method of oxygen therapy as a CH abortive is the breathing technique during exhalation.  It's best to stand.  This gives the diaphragm full range of motion and jaw dropped like saying the word "Haw."  This allows for unrestricted flow of breath from the mouth.  Start by exhaling forcibly and rapidly until it feels like your lungs are empty... They're not...  At that point you do an abdominal crunch like doing sit ups and hold the squeeze until the exhaled breath makes a wheezing sound for at least a second then inhale rapidly with shoulders back and repeat the exhalation.  10 such exhalation - inhalation cycles should take 30 seconds.  On the 10th exhalation, hold the squeeze until the exhaled breath makes a wheezing sound for 2 to 3 seconds...  This squeezes out an additional half to full liter of exhaled breath highest in CO2 content.  At that point you nhale a lungful of oxygen and hold it for 30 seconds.

 

If you're hyperventilating properly, you will have pushed your system into respiratory alkalosis.  This will be accompanied by paresthesia, a very slight tingling/prickling sensation of the lower legs, feet, hands and lips.  Paresthesia is the best indication you've hyperventilated effectively and cast off the most CO2.  At the completion of holding the oxygen for 30 seconds, keep repeating the entire sequence until the CH pain is completely gone.  This typically takes 4 to 7 complete cycles but could take longer at higher pain levels.  The process of intentionally hyperventilating into respiratory alkalosis is very safe as the symptoms of respiratory alkalosis clear in one to two minutes breathing room air at a normal respiration rate.  It is possible to feel a slight dizziness using this method of oxygen therapy so if you feel dizzy, lean against a wall.  If you feel too dizzy to stand, sit erect in a chair.
 
I also invented what I call the Red Neck Oxygen Reservoir Bag made out of a clean 40 gal trash bag or 16 gal kitchen garbage bag.  I use a plastic Coke or Tea bottle with its cap and the bottom cut off as the mouthpiece, the tubing from an old disposable non-rebreathing oxygen mask (your cannula tubing), some electrician's tap and some Duck tape.  After the Coke bottle mouthpiece has been inserted through one corner of the bag's bottom and the oxygen tubing through the other corner, I seal both with electrician's tape for an air tight seal then close the open end of the bag with a strip of Duck tape as illustrated in the following photos.
 

It turns out my Red Neck Reservoir bag works exceptionally well with with low flow rate regulators and even oxygen concentrators.  You make sure the cap is secure on the Coke bottle then plug the oxygen tubing into the barb fitting on the oxygen regulator and turn it on.  When the Red Neck Reservoir is filled completely, turn off the oxygen supply  The Red Neck Reservoir is now ready for use to abort a CH using the method described above.  All you need to do is unscrew the Coke bottle cap to inhale the lungful of oxygen then replace the cap.
 
Other than the cost at less than $1, there's one more benefit of this contraption... There is no inhalation resistance.

 

Regarding changes in frequency of your CH after starting the anti-inflammatory regimen.  This happens to roughly 20% of CHers.  What typically happens is the CHer experiences a favorable (pain free) response for a day or two then the CH beast starts jumping ugly again.  Fortunately, after a week to 10 days, particularly if the CHer started the 2-Week vitamin D3 loading schedule, the CH frequency drops rapidly towards zero.   I suspect this particular phenomenon is related to an imbalance in the enzymes needed at the cellular level, to hydroxylate (metabolize) vitamin D3 to 25(OH)D and 25(OH)D to 1,25(OH)2D3, the genetically active vitamin D3 metabolite we think is responsible for preventing CH. 

 

Most neurons in and around the trigeminal ganglia have the genetic resources to generate these enzymes and like most biochemical processes, it takes time to ramp up production as long as the needed resources are present.  By needed resources, I'm referring to the vitamin D3 cofactors, in particular, magnesium, zinc, boron and vitamin A (retinol) as these supplements are essential in the enzymatic processes needed in vitamin D3 hydroxylation, and in the process of genetic expression.  If they are not present at the cellular level, little or no 1,25(OH)2D3 is produced... with little or no CH preventative effect.
 
Hope this helps...
 
Take care and please keep us posted.
 
V/R, Batch

[Wilson]

Thanks for taking the time to make this post, Wilson.  It will help others who see it.

We've been advising about welding O2 for quite a few years here.  There's a considerably less expensive regulator, which comes with the barbed fitting for a hose, here, in case you should need another one: http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator  There's probably a Harbor Freight store near you

Two other quick things.

1. Many find that an energy shot, such as 5-Hour Energy, drunk down at the first sign of an attack will speed the abort (though yours is already quite speedy, particularly when starting from a severe attack).

2.  You might want to try the D3 regimen, which has been very helpful for a very large percentage of the people who are doing it: https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

Interesting that you are getting such excellent results without a mask!  You put the hose in your mouth, I take it.

Yes , just set the regulator for a comfortable flow so I can fill my lungs completely without too much stress with hose to my lips like a cigar and hold it in a few seconds, thumb on the end of the hose to conserve O2 , exhale and repeat. the relief comes very suddenly and quite completely most of the time and I close the valve and walk away with total relief.  At least fo 20 minutes but sometimes for hours. I do not think it stops the CH, it just derails it for a time but it's worth it. 

[Michfan]

First, thanks to all who replied.  As Newbie pointed out, oxygen in Florida is a hassle.  Had to have a specific script from Doctor before insurance would cover the mask.  While waiting on it, stuck the nasal tube in my mouth, took deep breaths and plugged my nose.  It helped tremendously - not as good as the mask which I finally got - but I was able to get relief within 10 minutes.

 

Separated the d3 regiment and verapamil by at least 6 hours and it seems to have helped as well.   Have been tapering of prednisone with only occasional minor headaches.  Last thing I have done is started taking 15mg of melatonin nightly before I go to sleep, since overnight was when the majority of my headaches occurred. 

[CHfather]

Nice, Michfan.  I'm glad some of those things are helping you.