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 :D too - ;D). 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.

G'day Grumpy, and already I'm in love with your wife, but you get to keep the espresso machines by way of settlement.

Good to hear your GP and neuro are onside and once you get the O2 things might improve enough that you can at least be polite when we again flog you in State of Origin. There's a million tricks in getting the best out of oxygen but you're off to a terrific start.

As to becoming 'chronic', the word has a slightly different meaning here but we know what you meant and details later after we regain the Sheffield Shield.

I haven't been to Sidderney for years and years. Who owns the pub there these days?

Cheers and beers,

Brian up north.

PS   Nice missus.

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...

Thanks, Hefty, as I didn't pick him as a Pom but I've put medical gloves on now so I can type safely. As to being chronic, that's exactly what it means here but some people use it to mean 'severe' which upsets our resident pedants.

Only happy daze ahead, mate.

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!   :)

Gday Hefty, growly and brian

Accent, what are they talking about, their the ones with the accent.

Hefty, my sincere condolences, I married a Pom as well, and all of her relos visited for Xmas,No wonder I get headaches.

Hoping you are all well and happy new year.

Wayne

Poms as a Cluster trait?

AussieBrian wrote on Dec 27^th, 2008 at 6:58am:

Poms as a Cluster trait?

I’m safe I married a Ukrainian. ;)
Hi Hefty & Growly
Welcome to the nut hut.
Glad to see your getting oxygen, for me when in high cycle it's a god send.
Anything you need to know about oxygen in Oz give me a PM & I'll be only to glad to help.

Barry out West

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...

Hi, been busy for a bit and I'm just catching up on posts again.

Welcome to your new home away from home.  I'm so happy you two found us.  I've taken the liberty to bolt the door  ;)

The one thing I don't see mentioned is Oxygen.  It works really well for up to 70% of us.  You'll need a high flow regulator.  At least 15-25lpm.  The higher the better.  You'll also need a non-rebreather mask.  It has a bag attached.  Loads of details on the meds board.

When used quickly and properly I can abort an attack in 10 minutes or less.  Of course it doesn't work for all my attacks but those I clean up with Imitrex (Imigran) injections.

Good luck and let us know how it goes...

-Dennis-

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

Growly wrote on Dec 26^th, 2008 at 11:02am:

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! ... John.

So the oxygen arrived today but the non-rebreather mask didn't - does anyone have any tips on modifying a rebreather mask? We're desperate, so John's tried sucking from the tube but couldn't manage that very well. We're trying to tape up the holes and take it off to exhale, but not sure if we need to just wait for the proper mask.

:/

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

Wow thanks barry, you are a legend!!! We'll try it now.

xxxxxxx