Well, unfortunately I'm back (absolutely no offense to you awesome folks),  I have recently enjoyed more than 2 years of mostly pain free time, sorry to brag but I do owe 100% of that to you guys and your advice.  I can not thank each of you enough.  Your last suggestions years ago to start Verapamil and up my o2 rates changed my life..I am not exaggerating in the least!  I do consider myself very lucky.

During the past few years, I have had several breakthrough episodes ranging from a single attack to a week or so of a more or less normal cycle, most have been quite manageable with meds and o2. 

For the approx the last week I have been having breakthroughs again but their different this time.  Remember how it felt when you first got clusters, before you even knew what o2 or Imitrex was?  That's how these are INTENSE!  It's not just that though, lots of differences, I'm getting them off schedule, they have been resistant to o2 and Imitrex.  It's taken me hours and multiple tanks to kill some of them.

It's scary as hell because my o2 had been working so well, I could kick a cluster in 5min w/ 15lpm, I'd have to stay on it a while but after 5min the pain would be gone and I'd just wait till my Imitrex kicked in, completely pain free in less than 30 min.  I've had 3 headaches in the past week that took me +/- 4 hours to completely beat with o2 and Imitrex. 

I'm currently on 480mg Verap/day, that's it.  I just purchased a regulator capable of 25 lpm, I used it during some of those monsters and the higher flow did work but as soon as I would try to back it down I'd flare back up and I was blowing through E tanks like crazy and I'm worried about sucking that much o2.  I didn't have any injectible trex (I know...I know), so I had to use 50mg oral but, I've done that before and usually it's fine because I can keep the pain at bay w/ the o2 till the pill kicks in it just takes longer.   

I'm calling the neuro tomorrow but seriously, you guys have helped me FAR more then any neuro has been able to so far.

Thanks for reading, I really needed to vent to someone who understands.  Any advice/suggestions would be most welcomed and appreciated.

Jason 

Hi Jason,

I don't really have any advice to offer you.  I wonder tho' if you have come across any of the posts by Batch that a few people are using who are having intense cycles.  He has a system that effects your PH balance - involves lemonade and magnesium - you'd need to check it out - I've not tried it so not up on the details.

Other than that.... I'm just sorry to hear that you're hurting.  I totally agree with your comments re this place changing your life - Me Too!!!

Good luck with the neuro - and definately check out Batch's posts - it just might do the trick.

Wishin' you the best,

Kate

Hi Jason - yeah I find that E tanks go WAY too fast at higher flow rates - heck at peak cycle when I'm getting slammed real hard and often in a way that your current experience reminds me of, I burn thru M tanks pretty quick. So I think you need M tanks at least.

I'll second what Kate says about Batch's arterial PH strategy that helps the O2 work better, plus a lot of folks feel that chugging down a caffiene/taurine combo energy drink at onset helps the O2 work better/longer.

I hate to say it, but at peak cycle I actually need a good 40 LPM, with a big reservoir bag and hyperventilation.

I think I also remember the resident O2 guru Batch saying to make sure to stay on the O2 backed down to 12 LPM or so for 5 minutes longer than you normally would to kinda "seal the deal"

I've been researching larger tanks and have also see how some here are able to refill E tanks from their larger ones and I am very interested.

I just did some searching on Batch's posts, interesting stuff, I will try to find the supplement he takes, are calcium citrate tablets that also contain vitamin D3, magnesium and zinc relatively easy to find?  Bodybuilding.com, Vitamin Shoppe etc? Or do most buy them separately?

I'm familiar with the energy drink method and have had mixed results but the last 2 headaches have been in the middle of the night which is actually unusual for me and I had some trepidation about slamming an energy drink on 2 hours sleep with 3 to go till I had to get up for work.

I've read about hyperventilating but I may be a little confused.  Is that just like it sounds, literally breathe hard and fast into the mask at first?

I do back my flow down for a fem min.  My standard MO is about 5 min on high flow, I back it down gradually for about 10 min after the pain is gone....I always get a second hit about 15-20 min later, I repeat o2 routine and most of the time I'm good.

Also been thinking about splurging on a demand valve.

Can't blame ya for considering the demand valve. My way of thinking is that is justified for any O2 using CH'er who can afford it.

Hyperventilating - yep it means huffing rapidly - and it is probably best to lift the mask off for exhales.

bejeeber wrote on Oct 3^rd, 2010 at 11:51pm:

Can't blame ya for considering the demand valve. My way of thinking is that is justified for any O2 using CH'er who can afford it. Hyperventilating - yep it means huffing rapidly - and it is probably best to lift the mask off for exhales.

Dittos. I went to a demand flow valve for my M tank and it's worked wonders on saving O2, about 30% less usage. And it's tricky to hyperventilate but you're looking for an O2 saturation level that will diminish if you let room air get in. Breathing hard and rapidly for the first 5 minutes, and then going to longer and deeper breaths (again only pure O20 for 10 minutes should keep the O2 saturation level up there. It's hard work. My diaphragm gets a little tired and that's when I'm glad for the "forced flow button" on my demand valve to keep my lungs inflated. Oh, and don't forget to exhale as completely as possible. That also helps keep the O2 saturation high.

About the late night energy drinks. Yup, it can keep you up. But then again, so will the hits. It's a tradeoff only you can make. Hang in there. Blessings. lance

Quote:

and then going to longer and deeper breaths (again only pure O20 for 10 minutes

Ooops. That should read "(again only pure O2)" I haven't discovered a new isotope-O20. I knew someone would ask about this.  :-[ lance

Well, just got back from the emergency room...1st time in 10 years...ouch $200 for a measly shot of Imitrex..stings almost as much as the hit.

I really tried to avoid it but I'm at work which is over an hour away from my house, I'm currently out of Imitrex, which since o2, has never been a MAJOR issue.  I had 2 and 3/4 E tanks in my car, I tried hyperventilating at 25 lpm till pain was gone it was taking more like 6 -8 min then I reduced flow to 15 and stayed on 10min, it took the pain away but I kept flaring back up.  This went on for almost 3 hours I had close to 1/2 a tank left and got very scared I would run out so I made the decision to go to the ER.  In hind sight, I should have called my neuro and had him call in a script to the pharm down the street, would have saved myself $185 but I find it difficult to make rational decisions during a kip 10 hit. lol

So I got a ride to the ER sucked on o2 the whole ride, when I got there they gave me a fresh bottle while I was waiting and I hooked up to their central lines when I got in the room.

The entire time I was at the ER prior to getting trex about 1.5 hours, I was sucking o2 at 15 lpm and I never got my HA lower then say a kip 3.  I responded well to the trex as usual.  Honestly, I'm scared shitless, the o2 has worked so brilliantly and now it isn't, and for several hits in a row.  I take that back, last night using Batch's instructions I completely aborted in 15min, 5 min @ 25lpm  10 min @ 15-10 lpm but it didn't work today.

I have also read Batch's bit on Arterial PH, I went out and found a supp w/ calcium citrate, D3, and Mag, I got some Zinc too I'm washing it down with fresh lemonade.  I've only done this 1 day so far and I'm not sure on dosing, the bottle says 2 caps 3 times a day which is what I've been doing.  Is that right?

The intensity, duration, and resilience of this last cycle of hits has got me freaked out.  Maybe time for a prednisone cycle?  God I hate prednisone...  Damn life is sucking right now.   >:( 

High cycles suck. :'( I'll 3rd and 4th the Batch arterial PH theory. Just finished a tough 8 month cycle where during a particularly shitty high cycle 02 stopped working, scared the hell outta me, 30 hours into Batch's regimen I was back to a manageable cycle and the 02 was working again. I get my supplements at Rite Aid, they're very cheap. Batch does it up to 4X a day, I never got over 3 and it worked wonders.

Talk to your doc about adding lithium to the mix. Don't let the hollywood stereotype scare you, I use 1200 mg a day on cycle and you would never know it from watching me. The combo of Lithium and Verapamil has helped many when one or the other failed. Hang in there, like I said...high cycles suck. :'(

joe