Cluster "Rebounding?" After Oxygen

[charles87sf]

Hey all! 

I hope you are all well and relatively cluster free/remission... I have some good news, and some bad news. 

Good news: After years of asking and pushing for oxygen therapy, I was FINALLY given a prescription! Dr. put me on 8-10 l/m for 5-15 minutes. 

Bad news: This is two fold. First, my insurance through Cigna is now denying my prescription for Emgality. I've been on it for over a year and it has helped tremendously! Now that Cigna won't cover it any longer, I won't be able to take it. I can't afford $800/shot... Second, (i'm hoping some of can help me out with this one....) the oxygen therapy caused what I'm reading as a "rebound" effect. Can someone educate me further on this? I received my first tanks last night around 6pm. At 9:50pm, I started feeling the initial pain of a cluster coming so I figured it was time to give the oxygen a try. I followed the prescribed amount and started at 8 liters... the pain was gone within about 7 mins! Halleluiah! ... But there's a catch... I woke up in the dead of night around 3am with a hard hitting attack. I immediately went to the oxygen and breathed again the prescribed amount. Same, it went away in under 10 mins of breathing. Went back to sleep... Sure as shit, 645am comes along and I wake to ANOTHER cluster. What happened?!  Up until last night, i was having avg 2 a day: 1 shortly after lunch time frame and another just before bed(9-10pm). I've had attacks in rapid succession before in the past, but it's been a long time! The worst cycle I've had was back in 2018 time frame and I peaked at 6-7 attacks/day... I haven't had attacks in rapid succession like that since then.

I did a quick google search this morning and briefly read something on the "Google AI" that cluster rebounding can occur with oxygen therapy. I decided to post on here to gain additional information. Thoughts? Suggestions? Past experience??

*Side note* ... Is Oxygen always that cold coming out?! Yeesh!!  

[Bejeeber]

I've had a similar rebounding experience with O2 aborts of wake up attacks, and have noted others also reporting it enough that it appears commonplace to me.

The rebounds can occur as frequently as every hour or so, something I'm personally familiar with. Your 3 hours between rebounds is relatively luxurious, and actually worth savoring from the perspective of some. 

It could be a good idea to have contingency planning for going with higher O2 flow, and having awareness of advanced breathing techniques and the incorporation of caffeine, just in case your success so far with aborting attacks at 8 liters doesn't hold (I don't wanna go all negative and alarm anyone, but sometimes the 8-10 liters doesn't hold, and beefing things up is required).

Staying on the O2 longer after the attack is fully aborted might help extend the time between the wake up rebounds.

 

 

[charles87sf]

41 minutes ago, Bejeeber said:

I've had a similar rebounding experience with O2 aborts of wake up attacks, and have noted others also reporting it enough that it appears commonplace to me.

The rebounds can occur as frequently as every hour or so, something I'm personally familiar with. Your 3 hours between rebounds is relatively luxurious, and actually worth savoring from the perspective of some. 

It could be a good idea to have contingency planning for going with higher O2 flow, and having awareness of advanced breathing techniques and the incorporation of caffeine, just in case your success so far with aborting attacks at 8 liters doesn't hold (I don't wanna go all negative and alarm anyone, but sometimes the 8-10 liters doesn't hold, and beefing things up is required).

Staying on the O2 longer after the attack is fully aborted might help sustain the time between the wake up rebounds.

 

 

Thanks for the info! Mind if I pick your brain a bit further?

1. "Staying on the O2 longer after the attack is fully aborted...." What's reasonable based on your experience/knowledge? 

2. " incorporation of caffeine..." Are we talking like chugging a caffeinated beverage after waking up even though I have intentions of going back to sleep? If yes, what kind of drink are we talking about? I'm weary of drinking "energy" drinks such as monster or other similar products.  

Thanks for the input! 

[Craigo]

Greetings and sorry they are back - it sucks.

My one fall from remission whilst using the D3 regimen saw me find o2 and the cluster o2 kit for the first time - I was getting o2 slap backs but as Bejeeber said that’s not bad to have several hours in between nocturnal attacks, I was aborting in 6 minutes or so and getting a slap back an hour later. An amazing advocate in our community Pete McCormick suggested to try staying on the oxygen for the same amount of time it took to abort the attack but at a lower flow rate, when I did that I found an immediate improvement back to my normal 2-3 attacks per night, aborted and back to bed in around the 15-20 minute mark which was an amazing improvement on previous abortives. I only needed the o2 setup for a total of four days before higher levels of vitamin D3 put me back into remission, thank God. 

Can’t add much about caffeine suffice to say some warriors use a strong black coffee rather than energy drinks and report it works, if concerned / wary about energy drinks, I know I am. I’d just straight hit up the oxygen upon waking rather than caffeine and save a strong black coffee or otherwise for shadows during the day. 

All that being said and in lieu of challenges obtaining Emgality, is the vitamin D3 regimen an option for you as another tool to add in the kit? 

[Racer1_NC]

26 minutes ago, charles87sf said:

Thanks for the info! Mind if I pick your brain a bit further?

1. "Staying on the O2 longer after the attack is fully aborted...." What's reasonable based on your experience/knowledge? 

2. " incorporation of caffeine..." Are we talking like chugging a caffeinated beverage after waking up even though I have intentions of going back to sleep? If yes, what kind of drink are we talking about? I'm weary of drinking "energy" drinks such as monster or other similar products.  

Thanks for the input! 

Most that stay on O2 after the attack is aborted find that 10 minutes seems to be the sweet spot. My advice is to experiment to find what may work for you best. 

My personal feeling on rebounds like this (totally unscientific, I'm not a doctor) is that either the attack wasn't fully aborted (comes back quickly) or that it's a separate attack that would have happened anyway (comes back after an hour or so). Who really knows for certain? 

 

[Bejeeber]

Re: the caffeine - as long as you’re continuing to experience nice quick O2 aborts, no need to go there IMO, but when additional help is needed, here’s a decidedly strange and inexplicable thing:

Those of us who have braved caffeine with our O2 for wake up attacks have pretty much universally found that somehow we can still unexpectedly go right back to sleep afterwards!!!!??

5 hour energy type shots are popular, as they also contain plenty of taurine (which is thought by some to also be beneficial), and of course they contain just a fraction of the sweeteners in energy drinks. I would hope they would also contain only a fraction of the other junk.