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new to o2 - please help me!! =! (Read 5462 times)
toddsciant
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new to o2 - please help me!! =!
May 9th, 2011 at 7:54pm
 
hi everyone.  i have read and read and read, and finally went to my doctor and then to get my first o2 setup.  i knew they didnt know what they were doing and gave me the wrong mask.  so i'm going to go tomorrow and get the non-rebreather mask that I need.  The regulator that they gave me goes up to only 15, but I think that should be ok.  Or is it?  I would say that I do not have a severe case of CH.  Average, I'd estimate.   

SO, once I get the correct mask tomorrow, and an attack starts to rev up, what I do NOT know how to do is the actual breathing, how fast?  how slow?  how deep?  do i just exhale right into the mask?  what i DO know is that I am to keep using the o2 until well after the pain has subsided, so I'm clear on that.  So what I need is for someone to tell me exactly what the best way to actually USE the o2 is.  I have it all hooked up, attack coming on, what now?

I'm also trying prednisone for the first time as well.  Any thoughts on that may be helpful too. 

Is there anything wrong with taking prednisone and using the o2 at the same time?  I would hope not or my doc would not have given me both.   

Thanks all!   I'm so thankful this site exist.
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RichardN
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Re: new to o2 - please help me!! =!
Reply #1 - May 9th, 2011 at 11:14pm
 
Hi & Welcome to Clusterville

  First, no . . . no problem with the Prednizone and 02.  I've never used Pred, but from those that have, my understanding is that the Pred taper works to prevent the attacks while another preventive (such as Verapamil) gets into your system for when you end the Pred taper.  Did your doc prescribe another preventive?

  Ok . . . re the 02.  The non-rebreather mask (one with the bag) you'll get from the med supply will have openings on the side of the mask for exhaling . . . there will be a flat dime-size valve on one side . . . take it off and tape both sides.  At 15 lpm, the bag will fill in about 4 1/2 seconds.  Hold the mask tight to your face and inhale (till you get used to the rhythm, hold the bag so you can tell when it's empty) then exhale for 4-5 seconds (to allow the bag to refill).
Since you've taped the exhale ports on the side of the mask . . . just crack the bottom of the mask a little for the exhales, then hold tight again for the inhales.

  When all we had was the 1 litre non-rebreather mask you're going to get tomorrow . . . when wakened with a night hit, I suck the bag flat in about 1-1 1/2 seconds, then exhale for 4-5 seconds . . . when you feel the ramp ease, try and slow down your inhales so you're getting the 02 in the bag, PLUS the 15 lpm the regulator is delivering.

  There will be a green strap attached to the mask . . . you can use it for hanging on your tank/regulator . . . or for use while driving . . . but NEVER, NEVER for use at night.  What can happen?  Say you get a bad hit at night . . . you hit the 02 . . . the major pain stops and you're able to lay back down and finish him off.  If you have the mask strapped on, it's very easy to fall back asleep . . . and wake strangling for air when your tank runs out.  If you hold the mask to your face and drift off, you'll just wake up with an empty tank.

  This method will get you through until you can order/receive an Optimask ($27.50 . . . links on the site) with the big 3 litre bag which is a huge improvement over what you will get tomorrow . . . designed for clusterheads and has an inflated soft seal mask which guarantees 100% 02.

  Remember . . . use at the first sign of attack for best results . . . when you feel it's going, you can cut back to 12 lpm and breathe normally till you finish him off.  It does take a bit of practice.  Try rubbing an ice pack (I like the gel type) all around the affected side (eye, face, neck, side of head).  I have to keep moving the ice pack around . . . if I leave it in one place I get an additional shot of pain . . .. but maybe that's just me.

  Order your Optimask

    Be Safe,   PFDANs

       Richard
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Skyhawk5
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Re: new to o2 - please help me!! =!
Reply #2 - May 9th, 2011 at 11:28pm
 
I've been using O2 for 22 yrs for CH and have never heard of any effects on other meds.

One of the best ways to abort with O2 is, get on at the first sign of pain, at at least 15lpm, some need less, some need more. HYPERVENTALATE the O2 with a proper NRB mask you can exhale thru the mask, some lift it.

Pls read thru the "oxygen info" link below, it's long but has lot's of good info, with pictures.
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If you need it, in a pinch, a makesift NRB can be made from a trash bag and an empty toilet or paper towell role, to breathe thru. Try a search on the site for home made o2 masks.

Don

edited to correct...
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« Last Edit: May 9th, 2011 at 11:46pm 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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RichardN
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Re: new to o2 - please help me!! =!
Reply #3 - May 9th, 2011 at 11:30pm
 
  A little clarification.  I didn't mean you should always flatten the bag in 1 1/2 seconds on the inhales .  .  . that's an involuntary action for me when I would get hit with a bad one at night . . . until I could control my breathing . . . say a 3 second inhale and 4-5 second exhale with the above mask.

  Richard
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Skyhawk5
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Re: new to o2 - please help me!! =!
Reply #4 - May 9th, 2011 at 11:51pm
 
Good post Richard, I was posting at the same time, so didn't see yours until after I posted.

Thanks, Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Re: new to o2 - please help me!! =!
Reply #5 - May 10th, 2011 at 8:59am
 
I could not stay with the 15lpm regulator. I suck the bag flat at 25lpm when in full swing. I agree with what has been said above, but I would only add this: when the hit is ramping up, I have the regulator set to 25lpm and breathe as hard and fast as I can and the 3 liter bag fills up pretty well to match my breaths. As the hit begins to subside, I drop the flow to 20lpm, and adjust my breathing so the bag fills between breaths fully. Then, again to 15lpm and adjust my breathing to the bag's inflation, and if I'm still not sure, once again to 12lpm. I let the bag fully inflate no matter what rate I'm at and adjust my breathing accordingly. I use a different technique for my big tank and demand flow valve, but not so different. There, I am at liberty to adjust my breathing independently of any bag, but follow pretty much the same routine throughout the life of the hit. Let us know how you make out. Good luck and God bless. lance
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Re: new to o2 - please help me!! =!
Reply #6 - May 10th, 2011 at 11:25am
 
I had a difficult time hyperventilating at 15 lpm.   I had to either take short breaths or wait a few seconds for the bag refill when taking deeper breaths.   At 15lpm I was able to abort my HA's but it  took a bit longer... sometimes as long as ten minutes.

I now use a high flow regulator and am PF in five minutes.  This is the one I have on my bigger tank.

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Re: new to o2 - please help me!! =!
Reply #7 - May 10th, 2011 at 2:07pm
 
Hows thing's? You have good advice above...so if you follow it things with the 02 should be good. Hit the 02 fast as soon as you can and try to get all you can while hopping and stomping....also
Average, I'd estimate.  
There are no average CH's.
lightem up and good luck
the bb
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toddsciant
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Re: new to o2 - please help me!! =!
Reply #8 - May 10th, 2011 at 7:28pm
 
Thanks everyone!!  WOW!  What a miracle.  I would have never gotten this help without you people and this site.

To answer original reply YES I just picked up my prescribed prednisone & verapamil.  I'm also prescribed Maxalt.  I have used the Maxalt a few times prior to getting the o2.  I have NOT started the verap & pred. 

I have two key issues/questions now that Ive had my first night with the tank.

I get hit at 4AM, straight to tank, 5 min at 12lpm and pain is gone, keep on tank an additional 5-7 min.  12 min total on the o2.  back to bed at 4:15ish.  Awaken with a hit again at 6AM, same thing, tank, 12ish minutes, back to bed.  Then hit again, hit at 7:00AM.   Hit the tank, 12 min.  This time I stay awake since its dawn outside.   So what can I do to prevent the hits from coming right back.  Typically I would only have ONE night hit prior to starting to use o2. 

My other question is about pred/verap.  My case I feel is somewhat mild.  my cycles come once a year, and usually last less than a month, with 2 to 4 hits a day.  If i can manage and abort the hits with o2, should I just leave the pred/verap alone?   I know you're thinking, oh wow this guy has it easy.  Maybe so, but when I get hit, I get HIT.  That's why I sought out the o2.  I'm just not sure I need a preventatvive or additional med.   The Maxalt does good on my lingering pain, so I use that as needed too.
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Re: new to o2 - please help me!! =!
Reply #9 - May 10th, 2011 at 10:32pm
 
  First of all  . . . congratulations on the 02 success . . . will be even better when you get the Optimask . . . and yes it's a miracle for most of us. 

  Re the night hits  . . . which are a real pain (pun intended).  You may want to try Melatonin (OTC) . . . comes in 3 mg tablets . . . 9-12 mg, 45 min before bedtime, helps many eliminate or reduce the frequency/intensity of the night hits.  If you try this and get a breakthrough hit at night you can expect some grogginess . . . "what woke me up? . . . .  oh yeh,  HIM again" and crank up the 02.

  I have experience with Verap, but not Prednizone or Maxalt . . . not sure whether there may or may not be any negatives using the Melatonin with those meds . . . am sure someone who knows will be along with that answer.

  I'll also leave it to the "pros" to give their opinions on your question about whether to start the Pred/Verap considering your "normally" short cycles.

  A tip regarding your new regulator.  It came with a metal & rubber 0-ring.  Re-use this o-ring.  The hard gray 0-rings that come with each filled tank are fine, unless you get an older tank that may have some scratches on the valve where it mates to the 0-ring and you'll have to really have to crank it down to get a good seal.  The metal/rubber 0-ring will seal easier with less pressure.

  Be Safe.   PFDANs

     Richard
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Re: new to o2 - please help me!! =!
Reply #10 - May 11th, 2011 at 8:06am
 
As for the early morning/night hits, try the melatonin. But it seems you are experiencing separate and new hits rather than a rebound attack. Go after each hit the same way. It will bring you comfort and may alter the attack pattern. We have noticed that whenever something begins to work the beast squirms its way around our abortives trying to find a new avenue. Pursue it with all vigor knowing you have the beast on the run.

As to the verpamil/prednisone question, many episodics use this combo while in cycle, and then when it appears the cycle is over, reduce and eliminate (or attempt to do so) the preventatives.  Not a doctor, but in my opinion both are worth taking now. The prednisone to give the verapamil time to become effective and the verpamil to eliminate the current cycle. When the cycle's done you can fuss about how and when to titrate off the verpamil.

Sounds like you're fighting the good fight! Keep it up. God bless. lance
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Re: new to o2 - please help me!! =!
Reply #11 - May 11th, 2011 at 8:48am
 
If it were me, and my cycles lasted less than a month, I wouldn't mess with a preventive medication.

For the multiple morning hits, you might try a long lasting abortive like Amerge or Frova instead of Maxalt.  For the first morning hit, take the Amerge/Frove and hit the O2.  Maybe the other attacks won't materialize.
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Re: new to o2 - please help me!! =!
Reply #12 - May 11th, 2011 at 11:01am
 
Hey Todd,

Good on you for starting oxygen therapy.  You've already received some great advice on how to use it and answers to your questions.

Once you get accustomed to all the new hardware and learn how to use oxygen therapy effectively to control your CH, you'll find like many of us that it is the only method of intervention and abortive you'll need most of the time.

Check your PM's...  I've sent you some additional info on oxygen therapy.

What you're experiencing with an increase in the frequency of your CH after starting oxygen therapy is normal.  The frequency of your CH will start to drop with continued use after a few weeks.

In the mean time, the simple thing to do at this point to help reduce the frequency of your CH is to stay on oxygen therapy after the abort to a pain free condition to bring your total time on oxygen up to 15 minutes.

In other words, if you can abort your CH in 7 minutes at a flow rate of 15 to 25 liters/minute (flow rates ≥25 liters/minute work even faster and more consistently), lower the flow rate to 9 - 12 liters/minute, sit back, relax, and continue breathing 100% oxygen for another 8 minutes.

Take care,

V/R, Batch
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« Last Edit: May 11th, 2011 at 11:16am by Batch »  

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Re: new to o2 - please help me!! =!
Reply #13 - May 11th, 2011 at 2:15pm
 
Learning a lot, that's for sure.  It's so good to know that l don't have to fear the next cycle as much as I normally would. 


I took 6mg of Melatonin as suggested to see if I could avoid the multiple wake-ups last night.  Oddly, I didn't even get a hit, I slept soundly from 1 to 7 AM, which actually never would even happen when I'm CH free.  So that's great, however I had really strong hit come on right when I woke up.  Hit the o2, good. 

Thanks again everyone for the advice.  I still cannot figure out how to utilize this seemingly generic sub par non-rebreather mask.  What's the trick?  Or do I really just need to get this better mask that everyone is recommending.   
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Re: new to o2 - please help me!! =!
Reply #14 - May 11th, 2011 at 2:18pm
 
Get the mask!  It makes 02 even better!
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Re: new to o2 - please help me!! =!
Reply #15 - May 11th, 2011 at 3:14pm
 
What she said.
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Re: new to o2 - please help me!! =!
Reply #16 - May 11th, 2011 at 8:51pm
 
What everybody says . . . if they have one.
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Re: new to o2 - please help me!! =!
Reply #17 - May 12th, 2011 at 12:25am
 
Get the best O2 setup you can afford. The O2ptimask was designed by CH sufferers just for CH. Members from here, Batch for one, worked with Lifegas to help CH'rs get the best O2 mask, period.

If you don't like it let me know and I'll buy it from you... Sound like a salesman?? Just the truth.

Don

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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Re: new to o2 - please help me!! =!
Reply #18 - May 12th, 2011 at 7:12am
 
RichardN wrote on May 11th, 2011 at 8:51pm:
What everybody says . . . if they have one.

I have three. So I don't have to tote just one around with me.
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Re: new to o2 - please help me!! =!
Reply #19 - May 12th, 2011 at 1:05pm
 
Ok everyone please refresh me here.  Although the o2 is easing the pain everytime in 10-15 minutes, it seems to have resulted in a LOT more attacks, all thru the night, and all thru the day.  I'm staying on it extra long each time as well.  I'm freaking out now, because I can't sleep at all, and I know thats not a good sign.  And the attacks are much more intense since starting the o2 therapy.

Can someone post a link to the site where I can order that optimask?
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Re: new to o2 - please help me!! =!
Reply #20 - May 12th, 2011 at 7:20pm
 
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Sounds like you're in peak cycle. Attacks come more often, are higher pain level, and harder to kill.

Good Luck, Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Re: new to o2 - please help me!! =!
Reply #21 - May 14th, 2011 at 5:30pm
 
I have same issue as Todd. Seems like I have more attacks. Like Ive said before, mine seem to have to happen or they just keep coming back. I can't abort one. Anyone else get that feeling?
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Re: new to o2 - please help me!! =!
Reply #22 - May 14th, 2011 at 7:36pm
 
Read up the info on the oxygen page - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Make sure you've got the combination of a non-rebreather mask and a high flow rate. Whilst some people can abort at relatively low flow rates some people need much higher flow rates. I can abort almost twice as quick at 25lpm compared to 15lpm. I've also seen people on here who can only abort at high flow rates.

It also makes a massive difference as to how quickly you start using the oxygen. So when having CHs I try to ensure that I'm not more than a few minutes at the most from my oxygen.

Some people combine the oxygen with a Red Bull or similar energy drink (one with taurine and caffeine) which often helps where just oxygen alone doesn't.

Since oxygen helps to flush carbon dioxide from your system, trying to stay relatively still (not easy I know), less carbon dioxide will be created, speeding up killing the CH.
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