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

  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

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

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

  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

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.

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.   

What she said.

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?

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?