O2 Losing its Effectiveness

[siouz76]

I started this cycle in July and went through the list of usual meds.  Nothing seemed to work so I gave busting a shot.  Tried Vitamin M and seeds every 5 days for several weeks with some relief but no end to my cycle.  I've never had a cycle last more than 8 weeks so I decided to go back to the Neuro and try something new.  I thought I found relief with Indomethacin when I went 9 days without a cluster attack but the weather changed and they came back with a vengeance.  Then I tried Nortriptiline and enjoyed a great week with no clusters.  Unfortunately that seemed to be a fluke too because I've had 13 clusters in the past 7 days.  Getting back to 1 every 2 hours at night again.  Grrr.

The really crappy thing is that I have always had terrific luck aborting an attack with O2 if I can catch it within the first 5 or 10 minutes.  Now suddenly O2 doesn't seem to be aborting my clusters.  In fact, it almost seems like as soon as I start the O2 the pain starts to spike.  I've had to resort to Sumatriptan injections too many times in the past 2 weeks.  I always tried to avoid Imitrex because as soon as I would take 1 shot I couldn't get my cluster to end without another shot or O2.  They could go on for hours.  Now I want to try busting again but I can't seem to detox for 5 days if my O2 doesn't work.  Has anyone ever had this experience?  Any changes that helped the O2 start working again?  Could it be the sumatriptan?

I'm hoping if I can get a bust in and go a few weeks without a shot maybe the O2 will start working again.  Of course this is all conjecture, I have no idea why it would work or not based on the meds I'm taking.  But I'd appreciate any thoughts or experiences on that from the group.

I've suffered through the past 3 nights and I know I'm in for a hell night tonight.  I have a tennis meet this afternoon and I know that will trigger an attack.  Plus the weather here has gone from 40s to 70s in the past 2 days and that is never a good thing for my head.  I just have to stay strong for 2 more days!  I honestly don't know how I survived these things before O2.  It makes me realize how much I depend on it to keep me sane!

[Bejeeber]

Hi Siouz76 - sorry I forget how much of the high flow non-rebreather approach you've adopted...

Funny thing with me is that regular old low flow rebreather O2 worked for me in the first years of my CH. But of course that didn't last. I gave up on it, then eventually a couple decades later I found out about the high flow 100% O2 thingy.

Even then, when I get to high CH cycle I have to CRANK the 'ol regulator up to 45 LPM(!) or so, then go at it with hyperventilation and a 32 gallon reservoir bag!

If there's a next time I'll be getting a demand valve O2 system (an absolute no brainer IMO when it becomes difficult  with a basic regulator to get the O2 to work). A side benefit with the demand valve is that you will conserve your O2 in a major way as it only release$ the O2 on inhale.

I recall Batch, the originator of the D3 CH regimen, saying that the D3 regimen optimizes arterial PH, enabling O2 to work more effectively.

Plus many CH'ers find that an energy drink or shot at onset helps with the O2 abort.

So to sum up, my ideas for improvement in your O2 results are:

1) Demand Valve system with hyperventilation

2) D3 regimen

3) energy drink/shot at onset

[spiny]

Siouz76,

Maybe, if you hits are like clockwork, you could set your alarm to wake 5-10 minutes before you expect a hit? For my nocturnal hits, I have to hit the floor running to get relief. By the time I wake up, it is ramping up like the Stig driving a Ferrari!!!! I grab caffeine, gulp 1/2 and start the O2 up on high flow. It bites to loose your best abortive. 8-)

Jeebs covered all the rest superbly already. 

spiny