BOY IS THIS STUFF GOOD!! 

Thanks to Batch and Marc and many others here that have given me awesome info on the do's and don'ts of oxygen.  Most of the info here is specific to us, the cluster folks, and it conflicts with the info you get from uninformed Doctors, Respiratory therapists, oxygen suppliers and especially insurance nazis.

I have been using oxygen for about 2 weeks now.  I am in an episode of clusters where I am getting 4 to 8 headaches per 24 hour period.  Almost all come at night.  It took me a day or 2 to learn how to breath and to get the O2 flow rate up to 15 lpm but I now feel like a pro.  And boy does it work!!  Why would O2 NOT be the first choice for CH?  Amazing.  It TRUELY is amazing.

I used to think that Imitrex injections were the only relief and they work very well for me...even the most intense CH will be gone in 7 to 10 minutes.  But the O2 has been just as effective in knocking the CHs out.  And I don't have to give myself a shot and feel like my hair is on fire.

So...I am now a BIG advocate of O2.  I would reccomend it as the first choice. 

Now, my only thought is that I have been having more CHs than I ever have had before.  Could there be any corelation to O2?

In closing I would say getting on the O2 ASAP after you notice the beast approaching is the key.  I have gotten to where most of my headaches are gone in 5 minutes.  Almost better than sex.  When I have no headache that is.

Thanks to all!!  I would not have tried O2 if I didn't have this resource.  You are all the best!!!!!!!

Note:  Right now I'm not asking but I have no idea how much this oxygen is costing me.  Whatever..........

We love success stories - now you understand why some of us push it so hard.

I personally feel that you need to go to 25 lpm now, im order to reduce the number of attacks.

Remember: You have to really hyper ventilate to get the maximum benefit - including the reduction in "reruns."  For me, it took about two weeks at 25+ lpm to see a HUGE reduction in the number of hits.

I don't understand how anyone can use only 15 lpm, with NO room air, to breath fast and deep. Get yourself out of breath by doing something strenuous and see what 15 lpm is like - you will be suffocating.

Glad to hear it's working well!


Edit to add: You know how you feel about oxygen now? THAT'S how I feel about O2 being used at 25 lpm or much higher!

nate1064 wrote on Sep 8^th, 2009 at 12:56pm:

Now, my only thought is that I have been having more CHs than I ever have had before.  Could there be any corelation to O2?

It sounds like you are not staying on the O2 long enough. Stay on the O2 for another 5-10 minutes.

Oliver

This is SO kewl!

Pete and I (mostly Pete) used to have to answer all of the questions and problems associated with oxygen.  Now, it seems, the proper word has gotten out, and I see others are answering the questions without Pete or I doing it!

YEAH!

Way to go, troops!  We can NEVER have too many oxygen experts!

Nate, we LOVE to hear about oxygen success stories!  Now that you are an expert, PASS THE INFO ON!!!

Happy Camper Chuck

Great news!  I have to agree with Marc, that you would be better at 25 lpm.  I can't speak to reducing the number of hits, but haven't really been using it at 25 that long, plus I've changed my dosage of Kudzu.  Don't know which to give the credit to, but either or both are working.

I used to use it at 15 and quit because I was sucking the bag dry and not getting relief unless I got to it within the first minute of the hit.  Now at 25 I hardly ever go over 5 mins.

Jerry

edit to add:  I still suck the bag flat when first starting if the hit has progressed beyond a K3 or K4.  I'm strongly thinking about buying a demand valve.

Without O2 I would probably be dead. Been using it for 20 yrs. Started @ 5lpm, NRB mask. Now I use 25+ lpm with an O2PTI mask. I abort 95+% of my attacks with just O2.

Many of us don't realize, there are some people on this site that have contributed much to CH research. God Bless them.. You read here some of that. Believe me there is more to come.

OXYGEN RULES!!!!!!!

Don

Callico wrote on Sep 9^th, 2009 at 12:01am:

................... I'm strongly thinking about buying a demand valve.

Like you, 25 lpm is too low for me for the first phase. But, with my total lack of funding.....

I have multiple tanks and regulators purchased back when I had a job, but didn't realize I needed a demand valve setup. I simply tied two 25 lpm regulators together with a "T" in the tubing going to my mask - and fire up both tanks.

One of my good regulators is acting up, but I can still use a 25 plus a 15 to get into the range I need.

Marc

Good idea Marc!  My supplier didn't have a 25 lpm for my M tanks, so I'm using 2 15's with a T, and usually turn it up to 15 each when starting, but I might just tie in my E tank with its 25 lpm regulator and see if I can still suck the bag flat! ;D

Jerry

welcome to a new life. Don´t, I repeat Don´t be tempted to take a hit without O2 to see if the hits are really that bad or too see if the O2 really is killing the big hits I did that and boy did i pay the price.

My friend in work (also has Ch) has just got his O2 script confirmed and hes all excited to give it a go. ill have to get him set up with the Optimask for the best results.

Mark (O2 user and proud of it)

It worked "fair" for me UNTIL I got the DEMAND valve and then -- no comparison... I"M AN O2 Junkie now... It's my FIRST CHOICE!!!

Marc,  do without food, clothing, shelter - but the demand valve is where it's at... I've been on it for a year now and in all the years I"ve had CH NOTHING has worked like this. From the time Nasty Old Chuck slapped his on me in Dallas I've been a total believer...

Nate we're all so glad that it's working for you.

Hugs BD :-*

Yeow!  I got a hit yesterday while I was out.  No O2.  No Imitrex.  And boy was it bad.  Easily a 7 and I had to drive home with my skull imploding!!  Then last night was bad.  I had 4 CH all of which came an hour or so after I fell asleep.


Does the OPTI mask make a big difference?  I don't have one now and have been using the toy mask the O2 company gave me.

YES the Opti mask works better!!!

Have you tried the melatonin at night. It helps a lot of us get thru the night hits. (9-15mg before bedtime). It gets you thru the REM sleep where the CH hits. You can get it at a drug store, supermarket or about anywhere - in the vitamin isle.

Hugs BD :-*

PS -- Keep a can of RED BULL (or another energy drink with caffeine and at least 1000mg of taurine in it) in your car so if you're out without O2 and imitrex - chug it at the first sign of a hit. It will "sometimes" abort the hit till you can get home. Try it - it might work.