I am at the beginning of a third bout of episodic Clusters. There was a seven year gap between the first two bouts. Then a two year gap between this and the last one. I am dazzled at the intensity of the pain with this bout. Previously, it started gently and increases over time. I am quite terrified at where it might end. Reading so many other sufferers stories, it made me realise how bad it can get. Fortunately, I found the oxygen helps to abort quite successfully. I never realised that it can stop working. How often does this happen? After my previous bout, my family was quite freaked out by all the dramatics, as I had serious side effects from all the medication I tried. I am trying to keep a low profile at home, but I will have to find an alternative to the oxygen, in case it stops helping.

Hi Rina,

Welcome to the family.  

I'd say if you have something that works, don't think about it too hard.  Just be grateful.  It may never stop working.  I hope that is so.

For me (and a lot of others) if the hit gets too far, the O2 won't touch it.  Then it's time for me to reach for my Imitrex.  Fortunately that doesn't happen very often.

Good luck hon and don't overthink it. Just make the most of the PF time and keep your weapons handy.

-Dennis-

an energy drink would be low profile help,  chug it

Quote:

my family was quite freaked out by all the dramatics, as I had serious side effects from all the medication I tried. I

I am sorry about that.   Really sorry.   If thias condition of ours is anything...it IS dramatic.   Were you on Tpopomax by any chance?

Hi. Yes I was on Topimax as well as Prednisone at the same time. Had adverse reactions to them both. Only discovered O2 later on. I also have Imigran injections on standby, but I find it takes to long (20 min) and it is such an unpleasant sensation that it is hardly worth it. It feels as if my hart is going to explode if I take the injection. I am sure that must be what a stroke feels like.

G'day Rina, and don't worry for a second that O2 might stop working. It's quite unlikely and a bridge we'll cross if we reach it.

Also sorry to hear about your adverse reactions to some medications that work very well for a lot of people but hope is at hand. For instance, have you heard about Red Bull energy drinks? Chug-a-lugged at the first hint of an attack can do wonders and, before you ask, I certainly don't have shares in the company.

(Mind you, given the free advertising they get here, I wonder if they shouldn't be sending a little something DJ's way!)

There's also very mild alternatives like kudzu and melatonin which are helping many and an intriguing thread on the Medications board entitled Kilowatt3 that's also worth a read.

Importantly, are you using your O2 to best effect? Check the 'oxygen info' button to your left or just simply keep asking questions. It's why we're here.

Cheers and beers,

Brian down under.