Well after 6 years, I've been diagnosed with chronic CH by my neurologist. Good news is I finally got a prescription for oxygen.

Just thought I'd share some good news for once!  ::)

Jen,

Good on you... What flow rate were you prescribed and what size oxygen cylinders are you getting?  The best bang for the buck comes with the larger M-size that hold 3995 liters.  These have enough oxygen to provide 25 to 30 aborts if you start early before the CH pain ramps up too far.  The smaller E-size oxygen cylinders hold 708 liters and are only good for 3 to 4 aborts.

Have you ordered one of the $27.50 O2PTIMASK™ kits with 3-Liter reservoir bag from here at the CH.com store?  These are a must as the disposable NRB masks the home oxygen delivery folks carry are a POS and only have a 1-liter reservoir bag.  Most of them come out of the box missing exhaust flapper valves... In short, the disposable NRB masks were not designed for CH'ers to abort a CH....  The O2PTIMASK™ was.

Take care,

V/R, Batch

I was prescribed 8-10 lpm to start. When I went in to pick up my tank I tried it out with the nurse there and we started it out at 10...I noticed a slight improvement after 10-15 minutes but maybe I need a higher flow rate. Or maybe I just didn't catch it soon enough. It'll just take me a while to get into the swing of things.

I'm definitely looking into getting myself an O2PTIMASK kit as I am hoping that will help as well. As for the cylinders, they gave me an E tank.

You may find that 8-10lpm is a bit low. I've found that the higher the flow rate the faster I can abort with a 25lpm abort being almost twice as quick as a 15lpm abort.

Happy to see you got O2. Hope they gave you a NON-REBREATHER mask with a BAG on it.? That's what we need. If you need help on that, let us know.

Getting on the O2 at the sign of pain is important. Seconds count. If you haven't, take a look at the "oxygen info" tab on the left.

Don

By all means, order an Optimask ASAP . . . that 3 litre bag is a huge improvement over the standard non-rebreather mask, and the soft seal mask guarantees
100% 02.  For me 12-15lpm works fine with the Optimask.

  Be Safe,   PFDANs

      Richard

Am I the only one who gets really no relief from oxygen? They will subside,but rebound right back. it's like the headache HAS to run its course. It should work, because I get the best relief from vigorious exercise. I am exhausted from jumping jacks at 2 am and often again at 4am every night tho. I have the mask also....

People who have reported that oxygen makes the CH subside but it comes back with a vengence often find that staying on the oxygen for a bit longer helps. Others drink a Red Bull or similar to help chase it away.

Gardengal,

I suspect your oxygen flow rate is too low.  The oxygen flow rate needs to be high enough to support hyperventilation if you want fast and reliable aborts with oxygen therapy.  The minimum flow rate for this is 25 liters/minute for most of us and those who have the most success and highest efficacy use even higher oxygen flow rates.   Check your PM.

Take care,

V/R, Batch

Gardengal, I used to have the same problem with the HA coming back after I shut off the 02. For a while I was taking an oral cafergot when I started the oxygen, it would stop the come backer. At the suggestion of several on this site, on my last cycle, I used a Sugar free Red Bull instead of the cafergot. I'd drink it down between huffs of oxygen. Seemed to accelerate the abort AND eliminate the come backer. Might be worth a shot.

Joe

JenElizabeth, while you are waiting for your Optimask, you can ensure you have no room air coming through by sealing up the holes on the side of the mask you have. If it's a typical mask, there are two sets of holes on either side of the mask, and probably one will have a circular plastic flapper that seals when you breathe in, and flaps out on exhalation. You can either fashion a second flap for the other side by cutting a circle from a piece of flexible cardboard or light plastic, or just cover over it completely with cellophane and tape. That way, you only get pure O2 when you breathe in. This could help your abort rate and the rebounds. Let us know how it works for you. Blessings. lance

Thanks for all your help! I have it on 15. It works,but an hour later I'm back. Maybe I'm not staying on it long enough after it subsides. I'm always so sleepy and afraid I'll fall asleep and waste all my oxygen. I did take cafergot after 3 times last night and it didn't come back. I will try the Redbull. I haven't been getting any sleep so was trying to avoid the caffeine.I worry about all the cafergot I've been taking, but it helps the best. I got a Rx for Imitrex nasal spray. $250!! I didn't fill it.

Great to hear of your sucess. Now once you've got a decent mask and a bit of practice you'll be killing them off in well under 10 minutes.

Now you know why we rave about oxygen so much.

Amen on the O2 therapy!  After years of trying for previous cycles, I have been able to get a tank for this cluster, and so far so good: no hits today, but been averaging three/day for the last few days.  Been going on the tank at the first sign of any sort of twinge of discomfort and it's been working well.  The cheap mask is hella uncomfortable, but at least the O2ptimask is on its way.

That's great news AJ, on or off cycle there's E-Tanks cluttering up my garage. After 33 years of the beast they've become my constant security blanket! :)

Joe