Hey everyone!
First I want to thank those that responded to my earlier post.  I appreciate it!
I was wondering if anyone could help me with ideas for what I should do now.  This cluster seems quite a bit worse than any I have had before.  Last 2 cycles oxygen took care of just about every hit.  I think I had to use imitrex 2 times last cycle.  This time O2 is doing nothing for the hit I get first thing in the morning.  I called neuro and he put me on prednisone (60-60-50-40-30-20-10) taper.  I started Sat morning and got hit hard Sat with one that Imitrex didn't even get rid of (which has NEVER happened to me).  Then Sun and Mon pain free.  Starting to feel good, like this might work and then hit again this morning and had to use Imitrex.  I am going thru the trex at one a day and running out so I need something else to work soon.  Was prednisone taper not at high enough dose?  I also started taking melatonin on Sunday.  Could this have something to do with it?  I am at a loss and can't see my neuro until next Tues.  I know I have to finish the taper now that I am in it, but any other suggestions? I guess my biggest fear is that this keeps going like this and I run out of imitrex and then I am left with nothing to do.  The thought of riding these out scares me to death!  Thanks again for reading.

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

Doctor did not put me on a prevent.   That is why I thought I would try the melatonin.  I called again today to see if I could move up my appointment and they said they would call back, but have not heard from them yet (of course).  My cycle is usually 4-5 weeks and it's been 3 1/2 weeks now so I wasn't sure if a prevent would be needed, but now I'm thinking that I can't count on anything this cycle, esp. since I've been using the imitrex so much.  When they call back I will ask about the preventative.  Thanks for the advice.

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:

I was wondering if anyone could help me with ideas for what I should do now.

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

joboofish wrote on Sep 15^th, 2009 at 3:21pm:

Doctor did not put me on a prevent.   That is why I thought I would try the melatonin.  I called again today to see if I could move up my appointment and they said they would call back, but have not heard from them yet (of course).  My cycle is usually 4-5 weeks and it's been 3 1/2 weeks now so I wasn't sure if a prevent would be needed, but now I'm thinking that I can't count on anything this cycle, esp. since I've been using the imitrex so much.  When they call back I will ask about the preventative.  Thanks for the advice.

The Prednisone/Varapimil combo has also worked for me in the past. Not a big fan of Pred. myself because of all the side affects I get like weight gain and an intense sense of edgyness. I can't use Trex at all because of a heart condition. The stuff nearly killed me the one and only time I tried it.
My last cycle I experimented with Kudzu, Taurine and Melatonin with very good results. There's plenty of info on this stuff in this site if you search. Always had my O2 available as well for the hits I still got.
Hey! I just noticed you are from my hometown of Hamburg! That's so cool! I spent my 1st 8 years on Linwood Avenue near the park on Lake St. and the next 7 years on Sherburn Dr near Charlotte Ave. Elementary. We moved away in 1978 at the end of my 9th grade. I just went back there for the first time in 30 years last year for the Fair in August. It sure was great to see the old stomping grounds again! Not much has changed except it's older & a bit more run down than I remembered. Still beautiful though! Of course, it was Summer  :) Don't miss those winters!
So sorry for your pain! Good luck!

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

....... Try O2 at 25 l/min, try the Imitrex tip.... Steve

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.

You definitely need to talk to the doc about a good prevent. Melatonin really does not count as a prevent, although for many it'll help avoid the night time hits.

Verapamil, lithium, topomax, all have pro's and cons as prevents to them, definitely need to bring them up to your doc. I use lithium 1200mg a day while on cycle. Blocks 70% of my attacks. And i agree with the idea of kicking up the flow rate on the 02 to 25 lpm, see if that helps.

joe

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

And i agree with the idea of kicking up the flow rate on the 02 to 25 lpm, see if that helps.

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-

Thanks for the info guys! 
I will have to call doctor back tomorrow as they never got around to calling me back today.  I will ask about a preventative and ask again for a higher flow rate regulator.  If I get shot down again on the regulator, does anyone know where to look for one on the internet?  I have been looking at Ebay but see mostly ones that go to 15 LPM.  Anywhere else I can look for the 25 LPM?  I would definitely be a very happy girl if the oxygen would work for me again.  It's inconvenient to run to the tank, but I realize how lucky I was to have that work for me now!  I also ordered one of the masks from this site to see if that helps.  Thanks so much for the input! Hope we all have  a restful night.

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

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:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I see the high flow regulators on Craigslist regularly, in fact my wife just ordered me a back up one. For normal use i use a demand regulator, similar to what a diver uses. They're more expensive but work miracles.

Joe

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

-Dennis-

The Flotec regulators work great...getting the high flow rate is the most important aspect of O2 therapy. 25lpm is a minimum; doctors don't seem to recognize that and neither do the insurance companies. I've had to pay for the higher flow rate equipment myself, but it has been worth every penny. I have also been fighting my insurance company to try to get them to reimburse me a bit for some of the high flow equipment, but even if they don't come thru, I'm still way better off than before...O2 is much safer than any of the preventatives or abortive measures that drugs can provide.
Get the high flow O2 equipment, you won't be sorry!!

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

The Flotec regulators work great...getting the high flow rate is the most important aspect of O2 therapy. 25lpm is a minimum; doctors don't seem to recognize that and neither do the insurance companies. I've had to pay for the higher flow rate equipment myself, but it has been worth every penny. I have also been fighting my insurance company to try to get them to reimburse me a bit for some of the high flow equipment, but even if they don't come thru, I'm still way better off than before...O2 is much safer than any of the preventatives or abortive measures that drugs can provide. Get the high flow O2 equipment, you won't be sorry!!

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.

Brew wrote on Sep 17^th, 2009 at 2:59pm:

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.

ditto

edited to add:
I always wonder if it really matters if you kill it in 5 or maybe 10 minutes.


Quote:

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?

Well said

Oliver

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.

As much as I try to disagree with brew as often as possible, I do think newbies should try 10-15 lpm to start and see if it works.  I have had some success with it too.

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

To me it's like telling someone to start out at 18mg of melatonin before bed.

It's just not the scientific way. Ever go for a sleep study? Ask one of those techs if they try to blow the back of your skull off with the CPAP and then titrate you in a downward direction.

I don't doubt that high-flow O2 can be beneficial for a great many folk. But I, for one, have never felt the need to pursue it. Newbies shouldn't be made to feel like lepers if they don't either - at least at first.

Then you can make 'em feel however you want!

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

C'mon, Marc. How am I supposed to try a flow rate higher than 15 lpm if that's all my regulators go to? What I'm saying is that I've never felt the need. The last time I went intractable was before there was ever talk on here about flow rates above 15. To speculate about whether or not it might have helped when nothing else did is purely academic.

And I'm certainly not laughing at you. I can see pretty plainly how it has changed your life, and I celebrate your victory.

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.

No offense taken - at all. And don't go back to just PM'ing people. I know there are lots of folks who will benefit from high-flow O2 therapy. Just don't make it seem like it's the only option. It's a good one, but not the only one.

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-

Thanks for all the responses!  I didn't realize there was such a debate about the oxygen.  I have ordered a mask from this site and it came yesterday.  I ordered a regulator from Ebay the other night for pretty cheap.  I could only find one (at a reasonable price) that goes up to 15 lpm.  I bought it before everyone here posted the responses for other places to purchase them.  I figure I will try this one, see if it helps, and if not I will invest in a higher flow rate to see if that helps.  Pretty much I'll try anything, especially with the oxygen because O2 is my preferred option to stopping this thing when compared to other medications (I tend to have weird side effects to drugs).  I feel like every time I have to use the Imitrex I'm cutting a few years off the life of my heart (I'm a little paranoid too).  Anyway, when the regulator gets here I'll let you know how it works.  Maybe I won't need to use it--- PF the last two days.  Maybe end of cycle?  We'll see. Thanks again for all the info.  This place is the best.   

Maybe I won't need to use it--- PF the last two days.  Maybe end of cycle?  We'll see.    [/quote]

Congrats! Here's to more PF times! [smiley=happy.gif]

joboofish wrote on Sep 17^th, 2009 at 10:42pm:

Thanks for all the responses!  I didn't realize there was such a debate about the oxygen.

There's a debate about most things on this site.  The only thing not debated is our desire to help folks find some relief.  Fortunately that debate is civil for the most part and it really is necessary.

One of the really frustrating things about CH is that nothing works the same way for everyone.   There is no magic dose.  Sometimes we get caught up evangelizing what works for us and forget that there are other approaches.  It's then that another board member will chime in with a reminder - just like Brew did  ;)


Quote:

I have ordered a mask from this site and it came yesterday.  I ordered a regulator from Ebay the other night for pretty cheap.  I could only find one (at a reasonable price) that goes up to 15 lpm.  I bought it before everyone here posted the responses for other places to purchase them.  I figure I will try this one, see if it helps, and if not I will invest in a higher flow rate to see if that helps.

That sounds like a great approach.  There is a big difference between 8lpm and 15lpm (ok, it's 7lpm ::)).  I think you are going to do just fine.  It's all a matter of what works for you.  That can, and often does, change from one cycle to the next.

Quote:

Pretty much I'll try anything, especially with the oxygen because O2 is my preferred option to stopping this thing when compared to other medications (I tend to have weird side effects to drugs).  I feel like every time I have to use the Imitrex I'm cutting a few years off the life of my heart (I'm a little paranoid too).

You sound exactly like me.  I feel like every shot I take I lose.  There are others that rely quite heavily on Imitrex and it works for them.  Like I said, nothing works the same way for everyone.

Quote:

Anyway, when the regulator gets here I'll let you know how it works.  Maybe I won't need to use it--- PF the last two days.  Maybe end of cycle?  We'll see. Thanks again for all the info.  This place is the best.

I hope it is the end of your cycle.  You'll be well prepared for the next one.  Let us know how it goes...

-Dennis-

I've been an episodic CH'r for over 21 (chronic 1st 2.5yrs) years and been using O2 for over 20 of them. I started @ 5-7lpm and this aborted 20-30% of my hits. 8lpm aborted 35%.

In the begining I would get up 10 attacks in 24hrs. Imitrex has never aborted a single hit for me, none of the triptans has. When my supplier gave me a 12lpm reg I aborted 40-50% of my hits.

At 15lpm this went to 60%. From this site I learned about hyperventalation and 25lpm, and went to 75-85% aborted attacks.

I am not a large person but I have large and healthy lungs. At 25lpm with a O2PTI mask with the 3 liter bag I can still empty the bag when giving it everything I have to stop a fast climbing attack. It took 30 minutes to abort a k-9 wakeup hit.

I now go even higher and abort 95+% of my hits and don't empty the bag. To me it's the difference between a Ford and a Porsche.

But yes lower flow O2 did help and I will never knock that. If we have a higher flow reg there is no requirement we have to use the high settings. In fact I don't always.  But when the need is there I have it.

The increase in aborts and the precious minutes I don't suffer have given me much more confidence with fighting the beast, without a needle.

No one should suffer from CH any more than they have to and info about high flow O2 IS helping many.

Sorry Brew, but when you say you can abort in 10-15 minutes @ 15lpm it makes me cringe. For me 10-15min can mean the difference in not aborting. The faster the better.

Good valid points from everyone.....

Don

Me, I use the demand valve (I'm chronic and have been since 97). I've used O2 since waay back when at 8-10liters and it gave me something to do. at 15 liters it helped a little more, but since going to the demand valve I've almost completely cut out meds for aborts (occasionally I get caught out without my O2).

I can usually abort in 3-5 minutes and that's a big difference from 20-30 minutes as in the past.

But it all goes back to WHAT WORKS FOR YOU!! For those who get releif on low flow rates - great, but for those of us who've discovered that high flow rates work for us - we do tend to shout it from the rooftops cause we want everyone to be pain free as soon as possible.

Anyhow, that's how I feel.

Hugs BD :-*

Quote:

Sorry Brew, but when you say you can abort in 10-15 minutes @ 15lpm it makes me cringe. For me 10-15min can mean the difference in not aborting. The faster the better.

I said most are between 5 and 8 minutes. I rarely get to the upper end of the Kip scale these days. What's the problem? Sorry it makes you cringe, but from my perspective it's almost a non-issue.

Brew wrote on Sep 24^th, 2009 at 12:11pm:

............ .......I rarely get to the upper end of the Kip scale these days. What's the problem? Sorry it makes you cringe, but from my perspective it's almost a non-issue.

And that's also a truly wonderful thing.

Marc

From your lips to God's ears, Bubba. ;)

Brew, I meant nothing more than pointing out that in MY case if I haven't aborted before 10-15min then most likely I'm not with O2.

Attacks ramp up very quickly for me and though not typical of CH @ 5min I break into a huge sweat and then vomit for up to a half hour whether I've eaten or not. Once there the chance of aborting gets smaller & smaller. Each minute seems like an hour. Panic sets in and here we go.

Some say vomiting marks the end of a full blown hit but not for me. I average 1.5 hours of K8-10 after. So time is a critical factor for ME.

Keep up the good work....

Don

Skyhawk5 wrote on Sep 24^th, 2009 at 5:17pm:

............ Attacks ramp up very quickly for me and though not typical of CH @ 5min I break into a huge sweat and then vomit for up to a half hour whether I've eaten or not. Once there the chance of aborting gets smaller & smaller. Each minute seems like an hour. Panic sets in and here we go. Some say vomiting marks the end of a full blown hit but not for me. I average 1.5 hours of K8-10 after. So time is a critical factor for ME. Keep up the good work.... Don

Pretty similar here, Don - but without the barf.

I have a very short window of time to kill it, otherwise I'm screwed. Zero to sheer agony in well under 10 minutes.

FOR ME (and notably NOT everyone else) high flow O2 makes all of that nothing more than a bad dream from the past. 

After 13+ years of being chronic, CH's are a mere nuisance as long as I have my tank nearby. All of the dark and scary places in my mind don't get explored anymore.

I don't even need to explain to another Clusterhead what that's worth to me.

Marc