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Confused about O2 (Read 1591 times)
nate1064
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Confused about O2
Sep 3rd, 2009 at 2:32pm
 
Well I am solidly in a CH episode.  Going on 6 weeks and for the first time the headaches switched from the right side of my head to the left.  I have a good Doctor but not sure what to do from here.  I am on verapimil ER twice a day(240 MG).  I was also on prednisone...6 the first 3 days, 5 the next 3 and so on.

But now they are back and I am getting 6 headaches a night.  I got an H tank of O2 and after reading and following the info hereit works.  My headache goes away after 6 to 10 minutes.  Problem is that it comes back in an hour or two. Now I am out of O2 after a week and the respiratory dude from the oxygen supplier says I dont need a special mask and I don't need to go over 10 lpm.  I was nice to him because I want more O2 but why is everyone so clueless about this stuff other than the folks here?  I guess because we live the dream!

Any suggestions?
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Batch
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Re: Confused about O2
Reply #1 - Sep 3rd, 2009 at 4:58pm
 
Nate,

You are not alone in having problems like this.  My 10 plus years as an episodic cluster headache sufferer frequently found me having 6 to 8 attacks a night on nearly an exact 2 hour schedule. 

I dosed on a pred taper as a transitional preventative and found relief while waiting for verapamil to build to therapeutic levels. However, as soon at the taper ended the beast emerged with a vengeance and on the same two-hour schedule.  When it became clear verapamil and I were not simpatico, my neurologist put me on dopeycote...  That proved equally unsatisfactory...  That left me with imitrex tablets as the nose spray and injections were not in the formulary for my provider.

The real relief came when I turned chronic in 2005 and started on oxygen therapy.  I did not like the side effects of up to 200 mg of imitrex a day and neither did my body...

It took a few attacks using oxygen therapy with a non-rebreathing mask, jacking up the flow rate for each successive attack until I found true relief.  That turned out to be any flow rate greater than 25 liters/minute and I soon found that the higher the flow rate, the shorter the abort times.

Being a Navy pilot with over 3000 hours of pilot time in Navy fighters and all of that flight time breathing 100% oxygen on flights lasting over 2 hours at rates well over 25 liters/minute, I was confident the flow rates I was using to abort my cluster headache attacks were perfectly safe...  I'm 65 and in excellent health save for the cluster headaches if that means anything...

The key to success for me was using a flow rate that supports hyperventilation.  After a few weeks of testing, I found the minimum flow rate that supports hyperventilation and pushes my system into respiratory alkalosis to be any flow rate ≥25 liters/minute.  I also found that flow rates higher than 25 liters/minute resulted in even shorter abort times.  As a testament to the body clock functions of our disorder, even with these very short abort times, my attacks frequently returned every two hours on schedule, but the total number of attacks a day and the intensity of these attacks began decreasing rapidly after the 3rd week of using this method of oxygen therapy.

Today after four years as a chronic cluster headache sufferer using this method of oxygen therapy with either a demand valve or high flow rate constant flow regulator and an O2PTIMASK™, my average abort times are between 3 and 4 minutes...

I am very comfortable with that and have a great quality of life...  even when the attacks come like clockwork every two hours during a high cycle.

If you are interested in more information on this method of oxygen therapy, shoot me a PM with your email address and I'll send you what I've got.

Take care,

V/R, Batch
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« Last Edit: Sep 4th, 2009 at 1:50am by Batch »  

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nate1064
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Re: Confused about O2
Reply #2 - Sep 3rd, 2009 at 5:44pm
 
Batch,

Thanks for the reply.  Everything you have noted for me has been right on.  One question though...this respiratory therapist that I talked to today said NOT to hyperventalate and that I did not need a rebreather mask.  That is contrary to everything I have read from you and all the other posts from those using O2 succesfully.  Why are they so misinformed?  Is the re-breather mask significantly better than this little mask that I got with the O2?

Any idea how much it costs to refill a H size O2 tank?
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Marc
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Re: Confused about O2
Reply #3 - Sep 3rd, 2009 at 6:22pm
 
Nate,

You provided your own answer: "respiratory therapist."

They are accustomed to dealing with L O N G term O2 exposure for people who are not getting enough O2.

The key is in what Pete said - you need to hyper ventilate for just a few minutes. For me, it's 3-6 minutes, but 25 lpm is a bit short to keep up with my deep breathing rate.

Marc

Edited to add: YES, you need 100% O2 with no leakage of room air in order to get the real benefit from this. Get the right mask!

Eventually, the medical community will catch up. For now, you have to decide on your own if you want to stop the agony.
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« Last Edit: Sep 3rd, 2009 at 6:25pm by Marc »  
 
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nate1064
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Re: Confused about O2
Reply #4 - Sep 3rd, 2009 at 7:05pm
 
Thanks Marc.  I am getting an O2PTIMask tomorrow.

Another problem I have is once the last CH is gone I think they will be gone for good.  The first hour is euphoric and then the anxiety starts creeping in.  But the usually go away for a long time.

By the way....is there still a theory that you grow out of these retched CHs?
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barry_sword
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Re: Confused about O2
Reply #5 - Sep 3rd, 2009 at 7:19pm
 
Batch is our o2 God! I just got a higher flow rate regulator and the new o2ptmask, but have not had to try it yet as I am out of cycle right now.
My problem with the lesser flow rate and a non-rebreather mask was the hits that came after falling asleep, they were already ramping up before I woke up and took too long to knock back down. If I was awake, no problem, two to five minutes, poof, gone with o2!
Sleeping, another story. The higher flow rate will work so much faster with the new, bigger bag and better fitting mask. Hyperventilate the o2! It works!!!! Smiley

  Barry, if I can help you let me know. PF wishes.

I also take 480mg Verapamil daily as my prevent. Works for me so far, hope you also find your "cocktail" as we call it.
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nate1064
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Re: Confused about O2
Reply #6 - Sep 3rd, 2009 at 8:07pm
 
Thanks Barry.  Batch definitely sounds like "the Man". But virtually everyone here has positive things to add and I have yet to get bad info.  Except from the doctors and medical people not involved here.

I will report back with my new OptiMask...unless I become pain free.

Amazing how your fantasies change!
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Re: Confused about O2
Reply #7 - Sep 3rd, 2009 at 11:36pm
 
Yes Batch is the O2 Top Gun. He changed my life for the good.

You will love the O2PTI mask. It is the only thing I know of that is made just for Cluster Headaches. And it works much better than any mask from our suppliers.

Get the best O2 you can afford. It has given me some of my life back, some confidence that I have the best tools available.

Don
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Batch
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Re: Confused about O2
Reply #8 - Sep 4th, 2009 at 12:28pm
 
Nate,

Marc is spot on...  Respiratory therapists are geared towards treating folks with COPD...  so it's not their fault.  Few if any have ever had any training in treating cluster headaches, and even fewer have been exposed to aerospace or aviation physiology…  but they do know damaged lungs required special attention. 

As an example, there are more than a few folks out there with asthma and cluster headaches...

Nothing...  I mean nothing is worse or more frustrating for these folks who have found that oxygen therapy works well in aborting their cluster headaches, than to have an attack of both at the same time.

Imagine not having the breath to blow out a candle in front of your face due to an asthma attack and having the beast gouging your eye out at the same time…   Knowing the oxygen therapy would stop the pain and not being able to use it because of the asthma attack is very frustrating.

The folks with both conditions who manage to get their pulmonologist and neurologist in the same room at the same time and lock the door until they come out with a protocol to treat attacks of both at the same time are very fortunate.

It turns out the basic protocol is very simple...  Treat the asthma attack first...  It can kill you...  Then treat the cluster headache…  you may want to die but the condition will not kill you. 

The best trick I've seen in this area is to pump the nebulizer containing the bronchodilator with 100% oxygen...  the flow rate is not all that great, but it does jack up the SpO2 (Oxygen saturation or Dissolved Arterial Oxygen) enough to keep the cluster headache from going ballistic...  Then when the "pipes" clear enough to take a full breath of air and expel it without resistance, crank up the oxygen regulator to a minimum of 15 liters/minute or as high as 25 liters/minute and beat back the cluster headache.

If you want to convert your respiratory specialist to your way of thinking, your first approach is to use reason along with some basic respiratory physiology to make sure he or she understands it is not just elevating the oxygen levels (hyperoxia) to stimulate cerebral vasoconstriction that makes the abort with oxygen therapy happen, it is also requires reducing the CO2 levels (hypocapnia) by using flow rates that support hyperventilation to the point you reach and sustain respiratory alkalosis until the abort.  This is essential in effective oxygen therapy as reduced CO2 levels also act as a very powerful cerebral vasoconstrictor.   

Tell the respiratory therapist you need enough lung ventilation to reduce SpCO2 (Carbon Dioxide (CO2) saturation or Dissolved CO2) levels below normal to achieve respiratory alkalosis and abort the cluster headache attack.  It is also very safe.  So safe, the US Navy makes pilots breathe 100% oxygen from takeoff to touch down and they’ve been doing it for well over 60 years.  I can recall many times when we were scheduled for night operations and it was hairy scary dark, we would preflight and man-up our jets 5 minutes early so we could strap on the 100% oxygen to improve our night vision.

As you sit there reading this, it takes a minute volume of 20 to 22 liters of air ventilating the lungs just to maintain your SpCO2 levels in the normal range (Minute Volume = volume of air (or O2) inhaled in one minute).  Climbing three flights of stairs or walking at a fast pace will command a respiration rate or minute volume of lung ventilation equal to 50 to 53 Minute Liters...  Hmmm that means you need a flow rate of 50 to 53 liters/minute…

Once you understand this basic principle of respiratory physiology, you'll realize using a non-rebreathing mask with a constant flow regulator set to ≤15 liters/minute is a recipe for disaster if you have any physical activity during your cluster headache attack…  Flow rates this low with a non-rebreathing mask are not going to provide sufficient lung ventilation to regulate CO2 levels and CO2 levels will build... 

When that happens…  the abort with oxygen therapy is not possible…  you loose…   and the beast wins because elevated CO2 levels act as a very powerful cerebral vasodilator!

In short, if you're dancing the cha-cha or the tarantella two-step with a high Kip-level attack, you're generating more CO2 than normal due to the physical activity and that will require a greater minute volume of lung ventilation to maintain normal CO2 levels...   And… you'll need even more lung ventilation than that if you want to reduce blood CO2 levels below normal to achieve respiratory alkalosis to abort the attack...

If necessary, take your O2PTIMASK and high flow regulator or demand valve and a cylinder of oxygen to your next meeting with the respiratory therapist and demonstrate you won't fall on your ass using this method of oxygen therapy. 

I may have fallen on my face a time or two trying to convert a big batch of margaritas or too many rum & cokes into urine  Shocked…  but I've never passed out from using this method of oxygen therapy and I've used it since 2005 Cool on every hit and every shadow, and I sucked down copious amounts of 100 oxygen on every flight for over 3000 hours total flight time...  and still brought the jet back for a safe landing on the ship…

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I also stand while using this method of oxygen therapy as this gives the diaphragm a full range of motion to better ventilate the lungs.  Sitting hunched over with your elbows on your knees is the worst possible position to be in during oxygen therapy.  It causes too much residual breath to be trapped in the lungs and when this happens, that residual breath builds up with higher levels of CO2 and that in turn elevates the partial pressure of CO2 in the arterial blood.  When that happens the elevated SpCO2 level negates the vasoconstrictive effect of hyperoxia putting you between a rock and a hard place as that makes the oxygen therapy ineffective or the abort last far too long…  and that is a real bummer.

If you feel uncomfortable standing during oxygen therapy, sit upright like your music or choir director used to tell you to do, or sit in a recliner leaning back to take any pressure off the abdomen and diaphragm.

Soooo… the motto is very simple, “When using oxygen therapy to abort a cluster headache, Oxygen is your friend and CO2 is your enemy.” 

That makes hyperventilating on 100% oxygen until you achieve and sustain respiratory alkalosis essential if you want to achieve a fast abort. 

I can hear the wheels turning now…  How do I know if I’ve achieved respiratory alkalosis?

The answer is really very simple…  Your body will tell you….  Respiratory alkalosis is accompanied by symptoms called paresthesia…  That would be a tingling or prickling sensation (slight pins and needles feeling) of the fingertips, face, lips, and back of the neck accompanied by a slight dizziness.

Is paresthesia dangerous?  No…  As you are creating this condition intentionally by hyperventilating, and effects of respiratory alkalosis are relatively short lived, the symptoms of paresthesia will clear in less than a minute as soon as you slow the respiration rate to allow CO2 levels to build back towards normal.

Regarding refill costs...  My E-size cylinders refill for $20 and my M-size cylinders refill for $30.  My guess is $35 to $45 to refill an H-size oxygen cylinder...

I average 20 to 25 aborts per M-size cylinder so that makes my cost per abort $1.20 to $1.50...   and that's a heck of a lot less than the imitrex cost per abort and there are no side effects save for a feeling confidence that you'll gain in knowing you control the beast...  and not the other way around.

Take care,

V/R, Batch
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« Last Edit: Sep 4th, 2009 at 12:34pm by Batch »  

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Wabi Sabi
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Re: Confused about O2
Reply #9 - Sep 5th, 2009 at 11:20am
 
I see I can buy O2 tanks online, welding and medical, but empty  Cheesy

Would it be easier for me to refill a tank or to go out and try the welders shop method maybe? My Neurologist told me insurance companies have an issue with the whole O2 thing. Not sure yet if he's pulling my leg but I do see my insurance has issues with my Imitrex injections, only allowing me 4 - 4mg auto injectors per month. I will be stock piling through the yr for next yr though.

I am just ready to try the whole O2 method, it seems like that is the cheapest and best remedy around here. I just need to know how to get a hold of some. Shocked

I think I may be abloe to get my Neuro to prescribe it to me if thats the only way to get it done.

Help me out with some knowledge.
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Re: Confused about O2
Reply #10 - Sep 5th, 2009 at 12:12pm
 
Wabi Sabi wrote on Sep 5th, 2009 at 11:20am:
I see I can buy O2 tanks online, welding and medical, but empty  Cheesy

Would it be easier for me to refill a tank or to go out and try the welders shop method maybe? My Neurologist told me insurance companies have an issue with the whole O2 thing. Not sure yet if he's pulling my leg but I do see my insurance has issues with my Imitrex injections, only allowing me 4 - 4mg auto injectors per month. I will be stock piling through the yr for next yr though.

I am just ready to try the whole O2 method, it seems like that is the cheapest and best remedy around here. I just need to know how to get a hold of some. Shocked

I think I may be abloe to get my Neuro to prescribe it to me if thats the only way to get it done.

Help me out with some knowledge.



It's not just the ins. co's that have issues with prescribing O2 it is also Doctors.  It boils down to a liability issue both for Dr's and ins. co's.

Not the 1st time I've heard of a Doc saying this, my doc said it as well. 

Edit (Whoops wasn't done yet)

My ins is the same way with my Imitrex shots...drives me batty.  My Dr and I found a bit of a way around it...Have him also prescribe the Imitrex nasal, if you take it soon enough it will help may take a few minutes longer to do so like about 10-20 in some cases but it's better than nothing if you have no O2 on hand.  Make sure you take it at the 1st signs of a hit if you wait too long you may be in for a rough ride.
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« Last Edit: Sep 5th, 2009 at 12:15pm by JustNotRight »  

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Re: Confused about O2
Reply #11 - Sep 6th, 2009 at 2:39am
 
Thank you! I will get on him about the O2.

Where is the liability with the O2s? Flammable? Not sure what they are so worried about.
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Re: Confused about O2
Reply #12 - Sep 6th, 2009 at 9:09am
 
Yes Flammability is the issue, if you can show them that you know what Not to do around oxygen it would go along way in convincing them you are a good candidate for it.


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If you are desperate and need oxygen, spending a few hundred on this may be your answer, I'd get two of the tanks though.
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Marc
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Re: Confused about O2
Reply #13 - Sep 6th, 2009 at 12:17pm
 
I've never seen it presented a liability issue. More a matter of existing medical protocol.

Most doctors just don't know about it - they think in terms of COPD treatment for people with low oxygen saturation.

Insurance companies often have the same view: "Let's check your O2 saturation level to see if need O2." We aren't low on O2 - we need a temporary burst of excess O2.

My insurance covers it - after a $500 deductible.

I just Google'd "welding supplies" and found that a local auto parts store carries welding gasses.

I walking in and asked what it would take to get a big oxygen tank and what it would cost.Two options were available: Buy my own tank, or lease one from them.

With the lease, I pay $45 per year and simply swap my empty for a full one. I use a “T” size tank (holds as much O2 as 14 E tanks) that costs me $18.50 to swap for a full one. The “T” is 5’ tall, 165 pound tank, so you may want a “K” or even smaller tank.

No one ever asked me why I wanted it, but I made the comment that I was going to learn to use a torch. They did ask if I need Acetylene and I just said nope.

This was after doing a LOT of research to learn that welding O2 comes from the same source as medical O2.  It is truly the identical product coming from the same process line. I use a special hose kit to fill smaller tanks for portability. The hose kit as micro-fine filter screens.

I went to the manufacturing plant and watched them fill medical and welding tanks from the same fitting. The big difference is:
-      Medical O2 tanks are sucked empty, down to a high vacuum level before filling.
-      Welding tanks get a “sniff test” before refilling. If it doesn’t stink, they fill it.

The primary contamination would be acetylene getting in from a two tank welding rig with bad check valves from the last user. Acetylene really stinks, so even a small amount smells repulsive.

I’ve been doing this for a long time and never had a problem yet. You can of course buy your own tank and have it filled.

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When I told my Neuro about it, he said "More than 50% of my CH patients do too. And that's all I'm going to say"

While there are several of us have been doing this for a long time, I'm not actually suggesting that you do this - because you're not supposed to do it.

Marc
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« Last Edit: Sep 6th, 2009 at 12:51pm by Marc »  
 
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Re: Confused about O2
Reply #14 - Sep 6th, 2009 at 12:36pm
 
Also keep in mind that people often buy welding O2 for:

- Hydroponic vegetable gardening
- Aquaculture (fish farming in your pond)
- Glass and ceramic projects

As a side note, I bought my hose kit from a private pilot who sells them to other pilots - who use welding O2 at altitude.

IF you decide to fill your own tanks - DON'T until you read how to do it safely. O2 doesn't burn on its own, but it will make other things burn. Simple little things can burn at high at the pressures found in a tank. Even moisturizing lotion (or natural skin oils) can ignite when exposed to 2000+ PSI.

It is safer than filling the gas tank in your car, if you follow the basic common sense rules. The primary rules are:

- NO OIL on tanks and fittings
- Tight connections on fittings made for use with O2
- No ignition sources
- Allow adequate time for the invisible, odorless O2 to "air out." Your clothing can become saturated without you knowing it.

Lots and lots of info on the web - read it and you will see what it's safe to handle.

Marc
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« Last Edit: Sep 6th, 2009 at 12:48pm by Marc »  
 
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