Oxygen effectiveness let down by reattacks

[drewbie]

Hi,

I've only just joined this forum and so forgive me for spamming with various different posts! Like all CH sufferers, I guess there's always so many things that feel worthy of analysis/discussion, if only just to find some little confidence boost.

I really want to ask for help on the subject of oxygen reattacks. Frankly, this phenomenon has kind of destroyed my faith in O2 during this cycle. It's almost made me frightened of using O2.

I'm 40 years old. I had my first proper CH cycle back in 2009. Didn't get visited again by the beast until 2016 (although I figure in hindsight that there were occasions where he was popping his head up from time to time in the interim). Since 2016 I've had roughly a cycle once per year, but on 3 occasions I received bilateral occipital nerve blocks very early on in the cycle and it seemed to end the cycle before it escalated proper (but who knows for sure?).

On previous occasions where I've had attacks, O2 has seemingly worked well. But, to be honest, I'd used it so few times that I hadn't built up a strong sense of its true efficacy for me. Unfortunately, the cycle I'm in now (that escalated before I could get a nerve block), has been a real challenge because I'm experiencing unsatisfactory results with the O2. I have 15 l/min flow, and the CH dedicated optimask. On the plus side, I can nail the pain very quickly, sometimes in just 5 minutes, although will hang on for longer to ensure it's really aborted. I've general tried Batch's room air hyperventilation technique as the best way to get the fastest abort.

All seems good, right? Well, no. Because what I'm experiencing seems to be what people refer to as reattacks. Essentially, within 30mins (sometimes only a few minutes), the beast returns for another pop. This phenomenon was bloody devastating at first, because I felt all hell was breaking loose. Historically I'd only get one hit a day, but this was turning into a damn onslaught. I was thinking I was getting multiple distinct hits but it seems pretty clear now it was the same attack coming back simply because it hadn't really gone. This was so distressing for me as I've always pinned my hopes in O2 as the lifesaver for CH and the thought of it failing me has left me somewhat traumatised. In the end, I decided to surrender and let an attack play out. Horrible, of course, but it seemed to confirm my theory that I was experiencing reattacks - by letting it play out untreated, the frequency was massively dialed down. 

So, I'm left wondering what the hell I should do. I'm trying to get a demand valve setup sorted. I'm in UK and it does seem I can get that prescribed in my local area. I'm a big guy with big lung capacity and always feel 15 l/min is inadequate for my natural demand. I like the idea of taking a much higher flow rate and thanks to the NHS over here, I never have to worry about how much O2 I chug through - they'll always keep resupplying.

However, even with a demand valve I fear this might not be enough. I've tried to reassure myself by having read Batch refer to this as a known phenomenon that commonly happens for 3-4 weeks, especially when adopting a hyperventilation technique. The data then shows it sorts itself out after that and (re)attack frequency drops right down (something to do with vascular tone?). However, as my cycles have typically been short, 3-4 weeks is basically my entire cycle, and that makes it seem like O2 can't help me during a cycle. It sort of feels like I'm better off facing the beast in order to have fewer attacks than go through the even more distressing experience of consecutive hits. I think also the reattacks are potentially more painful. I've not been sure whether I should just keep returning to the O2 for every reattack - as I say, I reached the point of thinking there would be no end and so assumed I may as well just let the beast have me.

BTW, I have tried throwing in a Red Bull as well. In the past I definitely aborted sometimes with Red Bull alone, but am thinking this effect has been less reliable this cycle.

On another note. Another distressing factor has been that Imitrex injections appear to have stopped having an effect for me. I don't like using them at all, but it's always been like a massive comfort blanket that they offer a reliable escape hatch. My understanding has been that Imitrex pretty much works for everyone, so don't know what the hell that's all about...

Sorry, this has just turned into a proper brain download. Hopefully someone will be able to advise me on how I might avoid the O2 reattacks. I just need some reassurance for my own future sanity that oxygen isn't going to let me down indefinitely. The beast really does a number on me psychologically, and I'm scared stiff right now of a CH future without the comfort blanket of O2. I sort of feel like I could take whatever the beast throws my way as long as I can rely on O2. Surely the fact I can get pain free very fast means there's got to be some hope for me with this? It's not like I'm a complete non responder, after all. 

Any advice/help would be massively appreciated.

p.s. I've never busted and wouldn't even know where to start living in the UK. Also, I have a general fear of anything that might contribute to an overall long-term worsening of my CH - my theory being that maybe it's better to let it play out naturally rather than overmedicate and give it a reason to change it's mode of attack. Has enough data been collected over the years to give people confidence that busting doesn't morph the disease?

 

[jon019]

...dang drewbie...this sounds like a mess...sorry to hear...just a few thoughts...

....O2 worked for me "most" of the time... and while there were times when i felt like i was experiencing an O2 rebound, it was thankfully rare. my hindsight belief it was having to do with an allergic reaction or system inflammation of some kind... which precipitated the hit and remained active irrespective of the O2 working on the hit at hand....

...if this is an allergy mediated...a course of benadryl (diphenhydamine) might be in order ...somewhere between 25-100 mg/dy for 7-10 days...worth a try, just be aware of drowsiness effect. if an inflammation, a course of prednisone or methylprednisolone may be in order

...normally i hit O2 at FIRST sign of a hit (plus an energy drink)...and advise same for all....but for reasons I totally do not understand there were cycles where it became quickly evident that either O2 no longer worked, or the hits just kept coming back, UNLESS i waited til the hit got to a level 2 (one notch beyond a shadow for me). scary stuff, but it was frigging amazing as the the O2 would then work just fine....

...i know this is difficult to contemplate but, as bad as CH is, there is no guarantee clusterheads don't have another form of HA. when i hear that O2 AND imi are not working....tells me might be something other than CH going on....worth a consult with your ha specialist...

...i completely understand the "letting a hit play out"....been there too. one of the reasons i've alway felt the beast is an entity with evil intent is that sometimes just seems "it" must be placated. am sure there's a physiological explanation, but................

best

jonathan

Edited January 17, 2021 by jon019

[drewbie]

Thanks @jon019

I'm sure through trial and error I'll find a way to make this work better for me. There's got to be some positives to be derived from knowing that the oxygen does work to abort in the first instance. And it seems that reattacks are a known phenomenon that others have conquered with the right technique. So I don't intend on just giving up on it. Fortunately, my cycle seems (fingers and toes crossed) to be descending fast from its peak (the nerve block almost certainly had a positive effect, even if it wasn't as definitive as in the past) - it does mean that the trial and error may have to wait until next time.

Would still appreciate anyone else contributing any suggestions about mitigating the oxygen reattacks/rebounds. I'm sure I saw @xxx has collected some data on this phenomenon at some point (the "vascular toning" effect I referred to), but just can't find much reference to it now.