Did the doc. put you on a prevent?  The steroids typically keep the beast at bay while the prevent ramps up in your system. If not,  call your doc and tell him you need a prevent. Don't wait. I'm a chronic and without my verapamil, I'd be dead.  Hang in there.

Rgds,  Malcom

Prednisone usually give you "cluster holiday".
I was pain free while I was on 64 mg. At 32 mg the attacks started again. So I was on 64 mg for 2 weeks but I stopped (tapered) because of side effects.
joboofish wrote on Sep 15^th, 2009 at 2:44pm:

Ideas? I'm NOT a doctor. Try O2 at 25 l/min, try the Imitrex tip. Hope you have 1 1/2 weeks left.
PF,
Steve

itotka wrote on Sep 15^th, 2009 at 3:33pm:


Yes absolutely what Steve said there.

Prednisone has only worked for me when I'm at the 60 mg a day level. As soon as the taper down starts, the beasts pops by to say howdydoo in a rather loud fashion.

Other ideas, based on recent topics over in the meds forum on this site (that you might want to look in on over there), would be:

1) Zyprexa (abortive)

2) an occipital nerve block.

I have no personal experience with either of those.

Guiseppi wrote on Sep 15^th, 2009 at 8:27pm:

I just looked up your "other" thread.  I can't emphasize what Joe says here enough.  8lpm won't get the job done for a big hit for me.  Hell, I never use less than 15lpm and that's for shooting shadows.  25lpm or higher will kick beast ass!!!

Don't wait for the Dr to come around.  Get your own regulator.  You won't regret it.

-Dennis-

I got a hi flow regulator from these guys: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I called to confirm what kind would go to a high LPM and fit my M tank, and just ended up ordering over the phone.

It wasn't cheap, but it was quick and I was desperate.

Personally, I wouldn't even bother with a lower than 25 LPM  O2 flow when I'm in peak cycle.

Make sure you read about using a 1/2 dose of your imitrex injection too. They'll last you twice as long that way - starting tonight if necessary:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This one is inexpensive and comes in both CGA-540 (m-tanks) and CGA-850 (e-tanks) for $78.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

-Dennis-

ferret wrote on Sep 17^th, 2009 at 2:42pm:

Can we all take a step back for a second? I never jump in on the Uber-high-flow threads because I'm sitting on my hands and biting my tongue.

I've used O2 therapy for almost 15 years now. My GP prescribed it at 8-10 lpm, but told me to go as high as I needed. That's what I've done for all this time. I usually start out at 12, sometimes 15 if I'm getting hit particularly hard, and then scale back if needed to 8 or 10.

Except for two times where it became intractable, I've always had success killing even the biggest hits in 10-15 minutes max. Most are between 5 and 8 minutes.

So before we lead all the newbies down the high-flow yellow brick road, could we consider for a moment that not everyone requires it? I hear bitching and moaning about how expensive medical oxygen is, and how high the cost of health care is in general - maybe some of us are able to conserve a little.

I know this is blasphemy to some, so go ahead - lemme have it. And ferret, this isn't directed at you personally - your post was the last on the thread, so I just grabbed the quote button.

If the lower flow rates work for you; great, more power to ya....The difference to me was astounding, from having first been prescribed an O2 concentrator that did NOT work at all, to a small E-tank with a 15 LPM regulator that my insurance covered, (which was marginally effective when I stayed on it for long enough, usually killing an entire E-tank), to finally getting a 60lpm regulator, M-tank, and demand valve that can abort an attck if I hit it early enough. Even if I wake up in the midst of a real killer, I can hit the O2 and lessen the pain in just a few mins and kill the attack in 10 or so....way better than any drugs or low flow treatment...but, that's just they way it works for me...as we all know, this beast can treat each of us very differently.

Brew,

Yeah, I tend to go overboard - but for a reason.

I too was given directions from my Neuro for 8-10 lpm, and I promptly gave up because it didn't do a thing except for very minor hits.

Eventually, I learned to stay with it longer and I saw some improvement when I maxed out by regulator at 15 lpm for long periods of time. I assumed that I had it down pat.

Then, I went into the worst high cycle of all time for me, I was at wits end and spiraling downward. It was like the old "pre medication days" but I was getting slammed twice as often.

Linda told me to shut the hell up and try high flow. (Well, she said it a lot nicer than I'm claiming, but you know how mean she can be  )

Brew, the difference was like throwing on a light switch. I suddenly had control of the damn things, I could kill every hit and never (really, never) got to a real K10 again. I don't even need to explain what that's worth......

I can't find the words to explain what that did for me then and continues to do do now.

My fear is that someone else will needlessly suffer as I did when it was so darn simple - for me at least.

I'll NEVER challenge the validity of folks reporting great success at more conventional flow rates. But, there are several of us with roughly the same experience.

My take is that buying a 25 lpm regulator to begin with gives a person the option. They cost the same, why not be prepared in case it's required.

Marc

Can I assume that you tried extremely high flow when you became intractable?

The actual flow rate isn't the whole point. It's being able to breath deeply and fairly quickly at 100% O2.  Bob P laughs at me too, but I would feel like I was suffocating at 15 lpm with NO room air leaking in - unless I was asleep maybe. The 3 liter bag goes flat on the first breath and never recovers.

Marc

Nah, I wasn't bust'n your chops, just curious to see if it would help in extreme cases like that.

I should probably go back to just PM'ing folks (like I used to do) with my experience with welding and high flow O2.

No harm meant.

For what it's worth, I looked at his previous thread where it says he was using 8lpm effectively during his last cycle.  That isn't working this time.  That's when I recommended HFO2. 

The regulator I suggested has settings for 8, 10, 15 and 25lpm.

Just saying 

-Dennis-