Hi Everyone,

My wife's been prodding and prodding and prodding me to get on here... I don't do being crook so I'm not very good with admitting there's a beast living in my head. 2.45am and it's biting pretty hard tonight - I've had CH with a bit of a trigeminal neuralgia crossover for 2 years and 3 months, and tried...ooh, verapamil with prednisone (helped til the pred dropped below 25mg, stopped the daily K9/K10 headaches), but I've got right bundle branch block & possible hole in the heart so my GP & neuro won't go above 240mg. Also tried tricyclic antidepressants (made me grumpy and depressed), beta blockers (made me angry and depressed), topamax (makes me dopey, doesn't help), ergotamine (made me puke), imigran garden variety (rarely helps, get rebound headaches), coffee (my espresso machines are my most loved possessions) and naramig (helps less than imigran, makes me puke).

I seem to be getting into a worse cycle (I'm chronic, 3-4 a day atm) and am so thankful for the Red Bull trick. Tried it today and one did nothing, the second one nailed 2 minutes after lifted the shadows and left me just with droopy/numby/swelling/pain (left me too - ). Thankyou! I'm getting oxygen on tuesday and trying to fight my pride and look forward to it... it should be easy to do with this kind of pain, but I'm finding out just how proud I really am. Looking at the stats, one E tank really isn't going to be enough! Still hoping I'll go into remission, and I'm not sure if I'm in denial or just being positive in my outlook.

I feel like Gollum most days - my wife and espresso machines get me through  . I promise to try and be good and not hog the sofa while I'm here.

John.

Growly's wife here - *proud* can't believe he finally did it! Quick, someone shut the door before he bolts!

Brian, I thought he qualified as chronic due to having several a day every day for over 2 years? Isn't it just > one year? Or is there another meaning here?

THANKYOU again to this forum for the red bull info, great to have another little weapon in our arsenal. John described the effect (after already having had 6 shots of espresso) as an internal cranial shrinkwrapping. Sounds just lurvely.

This site has already really encouraged us to be more proactive and hopeful in keeping trying new things - we feel blessed that every attack is not kip10 (thanks mainly to verapamil and coffee), but still this pain is NOT acceptable and we should be fighting every way we possibly can!

p.s. Brian, Growly is originally British so if you really want to get a rise, go for ManUnited or the England rugby (union) team. He may give the occasional playful nip, but you'll find he rolls over and shows his belly to anyone who gives him attention...

hehehe...I'm such an anglophile and aussiephile- I can just hear the accents as I read your posts, guys!  But then again, I grew up watching PBS in Houston, which back then was nothing but UK television. Oh, and Growly, I know perfectly well that "sodding" does not mean "clod-of-earthing"!!

But anyways, welcome aboard the Bat-Shite-Crazy Boat.  I responded to your other post about clusterbusters already, so go read that...but I have to give you some bad news now.
I'm a coffee professional (master barista for 15+ years) and in case you didn't know, espresso has 1/3 the caffeine of regular coffee. 

It has to do with the brewing process; basically, the rapid, pressurized brewing of espresso gets all of the volatile oils but not much of the caffeine out of the grounds. 

SO- if you want to get ALL the caffeine out of the beans, here's what you do: take all your grounds (course or fine, doesn't matter) and SOAK them in water for about 24 hours.  If you can, use a giant tea bag (for ease of straining.)  Put them in a container of water (about three times the amount of grounds), put the lid on, and just let it sit there on the counter.  Then strain out the grounds and store the liquid (called Toddy here in the states) in the fridge.  You'll be amazed at the difference.  a lot of cafes here stateside use that for iced or frozen espresso drinks instead of hot freshly-pulled espresso. 
good luck!   

Poms as a Cluster trait?

undertheradar - we did know espresso has less caffeine but for some reason other forms of coffee can be a trigger - or even espresso from stale beans or that's not perfectly extracted!

I thought maybe because espresso is so chemically complex there were other factors at play in how it helped. But, since reading that post about supersensitivity to smells (which growly/john has) I now wonder whether it's the smells of the other types of coffee that are acting as triggers? Thoughts, anyone?

John's sense of smell/taste is so good he was asked to judge our state barista competition.

Since he got CH we spend as much money on fresh gourmet coffee beans as on food in our house! 

AussieBrian, keep the gloves on, he's been pretty feisty lately due to a lot of all nighters.

Wayne, if i'd realised about the pommy relos i was getting in this deal i might have called off the wedding... John's dad got offended cos I said that no one i knew went on skiing holidays, and he does, so he felt insulted that i was suggesting he's rich (well, he is)!!!?? Now any self-respecting american would take that as a compliment, am I right?

We aussies are the only sane people on this planet, I guess the others may attain our level of evolution eventually, with training...

Welcome to the board and I'll second and third the oxygen suggestion. If you're part of the majority it's almost miraculous how fast it'll abort an attack!

Joe

You can make a short term one by using a large zippy bag; pierce a hole in one corner of the bag just large enough to push the oxygen hose through & tape with electrical tape to hold in place, use the cardboard tube from a toilet roll, again poke a hole through the oposite corner of the zippy bag & tape to hold in place.

You will have to breath through the cardboard tube by mouth & exhale by nose, it's a bit rough & ready but better than suffering.

Cheers
Barry