Hi all.  I just got my oxygen equipment set up but I have to admit I'm a little afraid of using it just yet.  Before I got CH I also had COPD.  My concern with using the oxygen is based on the article on COPD I read at Wikipedia (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE).  In the section on supplemental oxygen it says, “High concentrations of supplemental oxygen can lead to the accumulation of carbon dioxide and respiratory acidosis for some people with severe COPD; lower oxygen flow rates are generally safer for these individuals.”  I realize this is a reference to people using low flow oxygen for many hours each day, yet I can't help but be concerned.  The article on  respiratory acidosis goes on to say “A significant alteration in ventilation that affects elimination of CO2 can cause a respiratory acid-base disorder.”  There is a lot more science in these articles than my brain can absorb, so I could use some help trying to figure this out.  Anybody here with experience or knowledge of COPD that can offer me any reassurance?  Thanks
BJ

Did you tell your prescribing doc about the COPD before he/she wrote the script for it? If so, did he/she have any problem writing a hi-flow script for you?

I don't have a script for it, I cobbled the parts together on my own.  I also am not receiving any treatments/meds for the COPD, I just accepted the diagnosis and went on with my life.  I don't feel sick, I breath okay, I just don't do things that would tire me out.  You know, hard things, like getting out of bed. ;D
BJ

Wish I could help you. I'd think your situation would require the scrutiny of a supervising physician.

Good luck!

Brew wrote on Aug 11^th, 2009 at 3:14pm:

Wish I could help you. I'd think your situation would require the scrutiny of a supervising physician. Good luck!

YES!

And there's the rub.  Hard as it is to get a physician to write a script for oxygen for an average Joe, try finding one who will consider additional complications.  I know they have about ten minutes to see one  of us before its on to the next patient, but I never ever have a simple “normal” problem that resolves with 2 aspirin and a good nights sleep.  That is one of the many reasons I find myself going the self-help route.  I may not be able to figure it out but at least I'm going to try.  That's more than I can get a doctor to do.  Its not his problem, he still goes home tonight headache free.  I go home and wait for the Beast.  But while I wait I prepare.  I ready my lair.  I arm myself as best I can, hoping to move from stone age tools to  bronze age tools, to iron age tools, to atomic tools until I have all the tools I need to beat the bastard.  I WILL SURVIVE!  (or die trying) >:(

Okay, but if it were me, I'd be under the care of a neurologist and/or pulmonologist. One who is willing to listen and possibly work with you on some of the finer points via telephone or e-mail. I think you'll find few if any folks around here who can properly advise you on proper use of O2 that will be either beneficial and/or not harmful.

That would take a doctor.

Again, good luck. And I mean that.

Thanks Brew, I appreciate you at least taking an interest in my plight.  And to all of you Neurologists and/or Pulmonologists lurking out there, here is your chance to jump in!  

BJ,

O2 therapy used in the way that we do for CH's is safe FOR PEOPLE WITHOUT other respiratory/pulmonary problems, of that I am quite sure.

The problem is that you are presenting a medical condition that is specifically mentioned when researching the safety of high flow O2 use.  That will make most of us feel that you need to get some input from your doctor.

I have no problem trying things on the fringes of what doctors will accept. Welding O2 and “busting” to name two.  

In your place, I would present your plan to a qualified doctor and ask point blank: “This is what I plan to do for these reasons. What is likely to happen? I’m going to do it with or without your blessing, so please describe my risks and tell how to spot them if/when they occur.”

If that doctor won’t comment, find another who cares more and will offer you information based on YOUR particular condition.

Proceeding alone out and desperation without adequate information is clearly not a good plan. Once you learn more, it will be up to you to make a choice.

I'm not just talking in theory. After 13+ years of being chronic, much of it without adequate medication - I understand the desperation that agony will cause.

High flow O2 is about as close to miracle as I have seen.

BUT, even knowing that - I would want more info for myself before proceeding with preexisting COPD.

Marc

Hi Bj, I have emphysema, too. When I'm in cycle, I find that I can only stay at a 15lpm flow rate for a few minutes before I start having chest pain. I generally hit it hard with 15 lpm for a minute or two, then gradually turn it down for a maximum of 15 minutes on O2 in total. If it doesn't work in 15 minutes, odds are it won't work at all.

I NEVER hyperventilate, and in fact, lift my mask and exhale forcefully through pursed lips. (If you don't know what pursed lip breathing is, look it up ... it helps when you're short of breath).

I'm quite fortunate, that by using Clusterbusters treatments, I rarely need O2.   :)

pf wishes, nani

Marc, nani, thanks for your input.  I'm not suicidal, (but that's a long story too).  I have done lots of research, but there comes a point when it starts to go over my head.  I got as far as finding I could create something called carbonic acid in my blood that could be dangerous/fatal.  Soooooo, I'm on hold for the moment.  
I'm a vet and I have an appointment with a VA Neurologist but its not until next month.  On the bright side: my cycle seems to be petering out as well (jumping up and down, grinning ear to ear!!!).  So it looks like I might have beat the devil again.  I'm only getting mild hits/shadows for a couple of days now.  My last cycle was almost 20 years ago.  If it goes that long again I'll be a long time gone when he comes looking for me, and he can kiss my cremated ash.
Thanks, all of you, for your time and advice.  Alone, I was powerless.  United we beat the beast over and over, one clusterhead at a time.   :)
BJ

Quote:

I'll be a long time gone when he comes looking for me, and he can kiss my cremated ash.

Bwa-ha-ha-ha-ha-ha-ha!!!!
;D ;D ;D ;D ;D ;D

Priceless!

Hey Bj,

Great question and very good of you to ask before doing anything.  I'm merely a 2rd year MD student but I think I can give you some insight.  If you want the abridged version -- yes, you'll need to talk to a physician, and no, they probably won't be thrilled with the idea.

High-flow oxygen is generally considered a no-no in COPD patients, especially at an 8-10 L/min flow rate.  Individuals with COPD have essentially adapted to their condition by having a lower physiological requirement for oxygen -- that is, their brain tolerates a lower level of blood oxygen.  This tolerance takes time to develop, and also time to change.  

When you 'flood' your system with oxygen (as you would on high-flow oxygen therapy), your brain senses an oxygen level that is more than adequate, and your breathing rapidly decreases -- a condition known as apnea.  When you exhale, your body gets rid of the CO2 that it produces normally (sort of the body's equivalent to exhaust).  If your breathing slows or stops, your CO2 levels increase, driving your blood pH lower and into an acidotic state (known as respiratory acidosis).  Your blood can handle this to an extent, but when the buffering capacity runs out, mechanical ventilation is the typical fix.  Mechanical vent is more difficult in COPD patients...you get the picture.  It's just not worth the risk.

Hope I didn't lose your attention  :D

cts022 wrote on Aug 12^th, 2009 at 7:21pm:

Hey Bj, Great question and very good of you to ask before doing anything.  I'm merely a 2rd year MD student but I think I can give you some insight.  If you want the abridged version -- yes, you'll need to talk to a physician, and no, they probably won't be thrilled with the idea. High-flow oxygen is generally considered a no-no in COPD patients, especially at an 8-10 L/min flow rate.  Individuals with COPD have essentially adapted to their condition by having a lower physiological requirement for oxygen -- that is, their brain tolerates a lower level of blood oxygen.  This tolerance takes time to develop, and also time to change.   When you 'flood' your system with oxygen (as you would on high-flow oxygen therapy), your brain senses an oxygen level that is more than adequate, and your breathing rapidly decreases -- a condition known as apnea.  When you exhale, your body gets rid of the CO2 that it produces normally (sort of the body's equivalent to exhaust).  If your breathing slows or stops, your CO2 levels increase, driving your blood pH lower and into an acidotic state (known as respiratory acidosis).  Your blood can handle this to an extent, but when the buffering capacity runs out, mechanical ventilation is the typical fix.  Mechanical vent is more difficult in COPD patients...you get the picture.  It's just not worth the risk. Hope I didn't lose your attention  :D

Great post & explanation
You may only be a mere second year med student but you’ve got a flair for telling how it is in plain speak, don’t loose that as you progress toward graduation & good luck.

Cheers
Barry

Wow, cts022, you just provided the perfect example of what I am always telling my wife:  Ask, and yea shall receive.  You are beautiful!  I am sooooo grateful!  Hope you continue to hang around and share your mere “2nd year MD student” knowledge.  Now, how do I cure apnea?
BJ   :-*

Thanks, Barry, for the kind words.  Certainly is a little extra motivation around finals!


Bj wrote on Aug 14^th, 2009 at 2:04pm:

Now, how do I cure apnea? BJ   :-*

Ahh, if only it were that easy ;D  As I made some reference to, apnea of all kinds (those resulting from your situation, sleep apnea, etc) are generally dealt with using mechanical ventilation.  It's exactly as it sounds: a machine basically breathes for you.  In order to use one, you basically have to either have a small machine that is pre-calibrated to your exact needs ($$$) or receive treatment under the supervision of a respiratory therapist.  The former device is intended more for people whose reflexes aren't quite there while they're sleeping (sleep apnea), so it probably wouldn't be particularly helpful in your case.  The latter, well, your doctor probably doesn't want to INDUCE an episode of apnea, so they probably just won't give you the tools.

Then again, there's no harm in asking; just make sure they are the ones figuring out feasibility instead of you working on trial and error. And if they say no, I assure you there's a good reason why  ;)

great post cts.

can you tell   . what are the symptoms of respiratory acidosis?

  It would be good to know....something to watch out for.

thanks.....Do you have CH also?             lorac

cts,
Oops.  I was being facetious with the apnea.  Not there yet (unless 6 minutes at 6 lpm is enough to push me over the edge).  But, all kidding aside, it is very kind of you to provide such valuable information.  I am curious though, about the oxygen/COPD relationship.  The reason I have access to oxygen is that my wife uses it.  She has lung cancer (from cigarette smoking) and is on low dose oxygen (2.5-3 lpm).  I assume that is okay because it is low dose.  She uses it while sleeping.  When she is having a tough day I encourage her to use it more often, i.e. during the day.  Is that not a good idea?  

I don't have cancer (yet) but at age 62, after a lifetime of abuse, my lungs were looking forward to putting their feet up (okay, IMAGINARY feet) while I sucked oxygen and martinis on some headache free sunny beach.  You mean they won't get any help in their twilight years?

Finally, I congratulate (and envy) you on your career choice.  I'm sure you are in for a boat load of work, study, and sleep deprivation.  You will probably have lots of days that you say to yourself “its too much, its too hard”.  For what its worth, I'm here to tell you, do it.  If I could go back and have a second chance at life that is what I would do, no matter how hard it was.  The best times of my life were those that took the most effort, those that made me work the hardest, those mountains I thought I could never get over.  To steal a phrase:  Yes You Can.

Like I said before, you are beautiful.
BJ

I really appreciate the advice on this discussion. My daughter is a severe asthmatic with CH. We have noticed when her asthma is bad, than she is more likely to get hits, not sure why but it's an obvious pattern. But then it becomes a catch 22. Use o2 to stop the CH but then her lungs can't handle it and start having asthma attacks while she's on o2. To make a very long story short she was inpatient at Jefferson Hospital in Philadelphia. Both the nuerologist and the pulmonologist worked together to put a bubbler on and attach her nebulizer. She doesn't try the 25lpm and can usually tolerate 15. She is a 24 yr old athlete which gives her a bit more tolerance. Her issue is the frequency. A bad cycle, using o2 every 2 hrs is when the whole lungs/head issue starts. Get to a dr. if possible and preferably one that understands both health issues. I can handle CH or asthma but not both at the same time! These doctors literally were a life saver for her. Good luck!

Charlotte

Late answer here, but late better than never...  I've had 5 "cardiac incidents"...  6 stints.  So, Triptans are out.  I also have "mild" COPD.  I'm going on 65 this year, been having dates with the Devil for 45 years...  Went chronic in '96, was put on Oxycontin, got up to 200mg a day, with up to 10 Lortab 10mg for break-through pain.  In '02 {ironic, huh?} I didn't know if I was having headaches or not.  Absolutely the worst 3 months of my life coming off that crap.  I use 02 at 7lpm for no more than 15 minutes, and it works for me, so far, without repercussions.  As a RN, I understand the difference in what's medically called "co2 drive and O2 drive"...  but I was at the point of eating a .45ACP round, so I didn't care.  Everyone is different, and my results may not be yours.  That's just my experience... {if you're still out there... LOL}    ;)