Welcome to the board Steve, we've got several people from your side of the world on the board. Doesn't sound like you have much ammunition to fight this thing. Some suggsetions:

First off get oxygen. Instead of having to sweat how you're going to cope with a 90 minute attack, imagine breathing oxygen for 10 minutes and being pain free. 32 years of CH and it's still my first line abortive. Read the oxygen info tab on the left and ask questions! It must be used correctly or it's worthless.

Talk to your doc about some preventative meds. A med you take daily to reduce attacks. I use Lithium at 1200 mg a day it blocks 60-70% of my hits. Verapamil is a common first line prevent, Topomax also has a big following.

If you're getting a lot of wake up hits, go to your local vitamin/health food store and get some melatonin. Start with 9 mg 30 minutes before you go to bed. Many can avoid the night time hits that way. May have to increase/decrease that dosing, takes a little trial and error.

Energy Drinks. Red Bull, Monster, any containing the combo of caffiene and taurine. Chug it down at the first sign of an attck. Many can abort or at least really reduce an attack that way.

Let's get you a little more ammo to kick the beast out with!


Joe

Choppo wrote on Sep 25^th, 2010 at 5:48am:


It's not Carlton Draught, is it? That stuff would do it to a spotted dog!

Otherwise I know just what you mean and g'day from the far north. You'll find plenty of mates here and all the good gen like Joe and Bob have already passed on.

So welcome to our little club and let's all fight the good fight together.

WOW! It is so good to find someone to communicate with and thanks so much for your interest in helping! It means alot.
Bit of background;
39y.o., smoker, drinker. Married and 2 kids. 6'3 and 95kg and 'reasonably good health'. Small business owner (Architect/Builder)
Diagnosed finally in 2008, but i have a long history of what i used to call - "massive headaches on one side of my head (RHS) that wake me up and also get during the day when they get bad. Happens each May/June for a couple months" - yeah its a mouthful and people just look at you stunned i.e. you weirdo! and pass it off. A real party stopper! Its even harder when you mention the word C.H. and try to explain.... infact ive given up and keep it to myself. Which is why stumbling over this site is a goldmine as far as im concerned. I can express my pain with people who know more than i do!!!

In the 2 days ive been on this site, ive read and learnt so much already and i though i was an expert lol.

Joe/Bob - printed article and reading as soon as i finish typing. I REALLY appreciate it information – I really do!
Actually 6-8yrs ago i tried O2... didn't work..... BUT i just found out i wasn't doing it even close to correctly (used the little nose tubes). Tried getting medical O2 yesterday arvo (Sat) but need Prescription from GP, so it is first thing on my agenda tomorrow morning (Mon) - im really hoping for a positive experience to get away from drugs.
In 2008 i finally went to Neurologist specialising in CH (had been to a million GP's, specialists etc etc), but alas was at the end of my cycle and i just dropped the next appointments. Now a week ago the Beast returns, tried calling for an appointment and best i can do is 13/10/10 with a ‘colleague’  So ive been feeling rather stranded with my poor old GP who has no idea what im going through and can’t get expert advice for a few more weeks.... until now! Thanks again guys.
Current Medication
This week ive been on Prednisone 75mg x 2days, 50mg x 2days, 25mg x 2days.... im on the 6th day. So finish today... Ive got IMIGRAN 1ml nasal spray ….. copious amounts of Ibuprofen + Codeine tabs and paracetamol. On day three, I just could handle any more pain and went to GP and demanded something more hardcore – Oxycodone 5ml
My impressions of each’ this time round’.
Prednisone – I just had my first ‘daytime’ attack… 4pm-ish… a couple hours ago now. Im worried the reduction in Prednisone will bring on day-time attacks???
Ibuprofen + Codeine tabs – I take heaps and heaps but I think it actually does nothing during an attack except give me hope that it will work. I think It is actually the CH going itself, not the Codeine
IMIGRAM spray – see above… I don’t think It is actually doing anything, but im using it in hope anyway….
Oxycodone 5ml – only using after 15min of CH at night as a ‘last resort’(1 tab) – I think it works, not 100% sure as the CH lasts approx 55min – not sure if it is in my system and ‘working’ in say 30mins.
So as you can see im pretty limited in options at the moment and until I found this site, I was actually getting desperate!
Well im going armed with my new research to the GP tomorrow! (thanks to you guys) – ill let you know how I get on.
P.S. you will laugh at this, I actually gave up caffeine (Coffee) in 2008 as I thought it might be a ‘trigger’. Right now, im off to buy multiple cans of RudBull or what-ever I can get my hands on AND i have a coffee cup lined up ready to go with 10 teaspoons of instant coffee in it! 

P.S.S. Brian, im onto the XXXX these days - believe me that's different for a Sydney-sider 

Just another quick note - the Imigram nasal spray i actually used this afternoon when i could feel it looming - still didn't shorten the episode (i dont think).. still approx 1hr...

My usual C.H's are 80% = 1hr, 20% = 1.5hr

If Imigram WAS going to work via nasal spray, how long should it take to relieve pain if taken upon onset??

If the Imigran isn't working yet, ask for the injection form. The spray is less effective for CH and a bit slow compared to  injection.

STOP the pain meds! They only compound the problems! Need a headache doc to help you. For most folks, the Imigran injection, given EARLY in the attack, will abort the attack in 10-minutes or so. A good preventive med is the second line of defense--to reduce the intensity & frequency of attacks.

Yay for your energy drink success!!!  (I'm assuming "mother" is an energy drink - I haven't seen that brand in the US).

Joe will be ecstatic - I bet he owns stock in energy drinks. 

I'll echo what Bob said about imitrex - if you're going to use it, injectible is definitely the most effective. here's a critical tip for how to extend imitrex injection doses: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

And since I don't believe anyone has mentioned it yet in this thread, there's a natural preventative that some CH folks are finding to be more effective than any drug. I remember we even had one guy on here who went and picked some rght on his own property.

It is psilocybin, and this is not a joke - Harvard medical et al are recognizing it's potential and launching trials, there has been plenty of major news coverage, but most importantly, we've seen folks with really severe cases that weren't responding to any med find some impressive relief with it. That said, I don't know that it is the solution for everyone, but here's a video talk on the subject by one of our fellow CH'ers: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Very glad to see that you're already turning the corner in dealing with this beast Choppo! 

Choppo wrote on Sep 26^th, 2010 at 2:31pm:

It was more likely the XXXX what done it but great to hear that you reckon you're on a winner. It's now just a matter of practice and O2 so let us know how you're getting on.

Note also that the only good things ever to come out of Victoria are Vic Bitter and the Hume highway.

G'Day Chop
Welcome to the nut hut.
Looks like your learning real quick & glad the energy drinks are doing the trick.
As others have said go hither for the oxygen, for many it works a real treat with no side effects & is comparitvly cheap.

Cheers
Barry up north

Quick update for every one. Yesterday i was just completely demolished, exhausted and a dribbling mess. Let alone the depression  Got about 1 hr sleep between 5.30am - 6.30am... but, tried to turned the day into a positive which is very important for me.

Got the O2 prescription from my very helpful GP!!  It was late yesterday, so i couldn't get the actual bottle until today which i am really looking forward to. He was actaully very weary and advised it could be very dangerous, but at this point i know more about this stuff (thanks to you guys  ) and sort of said 'give it to me' lol

I have an Ambo friend, who dropped over several masks/non rebreather items. One is like the green one shown in the O2 thread (with the green 'football' under) so i will play with all that when the O2 gets here.

As an aside, BOC Oxycare only supply kits for hire with the nasal cannula. This is what i had 4 or so years ago and didn't work (i now know i wasn't doing it right!). If this works, i will be forever grateful for the O2 thread  .

Spent hours on the phone/internet trying to find a specialist to see. I have a referral for Alessandro Zagami who seems to be a gun, with headaches at least.... he will be better than the general neurologist i have an appointment with in 3 weeks anyway.

Now for the best news

, i had 8hrs sleep! Maybe the Beast just felt so sorry for me  . I dared to go to bed at 7pm and slept till 3am!! Yaaaaay!! Feeling heaps better.

Not sure if this was co-incidence, but i purchased and took;
- Magnesium tabs
- Calcium tabs
- Melatonin - i notice this is a Magnesium compound too

And for all those who suggested it, i DIDN'T TAKE;
- Alcohol 
- codine/ibuprofin etc etc
- Endone

I think the Magnesium/ Melatonin might be good in the future for my 'restless leg' i get periodically too. So i might keep these as permanent suppliments.

One thing that became a stark reality yesterday. There is NO immediate help in Sydney for C.H. sufferers. None, nil, ziltch..... thankgod i found this website and you all are nice enough to help me through!!!!
Thankyou, thankyou!!!!!

final edit - to all that have posted - i am reading every one of your posts, multiple times actually and each new post gives me hope. If i dont directly respond to your post, please dont think i have disregarded your comments/advice. They have been extremely helpful and again, i read every post multiple times. Im long winded enough  so i thought i would try to keep my posts to combined responses reather tahn individual replies 

Bud wrote on Sep 27^th, 2010 at 4:44pm:

G'day Bud,
welcome to the site - ive only been a member for a week or so, but WHAT A WEEK!

2 things i knew nothing about before getting here was;

1: The Caffeine/ Taurine - RedBull energy drinks etc. Ive tried it 4 times now and worked a charm!!!!
2: O2 - i tried this with the nasal canular thingy years and years ago... no good.... BUT i was doing it wrong!! 

For you and the others who have been helping me out, great news. I got the O2 set up, got a CH around 7pm, slammed an energy drink, got stuck into the O2 for the first time properly (BUD - Pleeeeaaasseee read the yellow tab over to the left 'oxygen info' - its the best thing you will ever do!) and guess what - i zapped that mother outta the park within 20min  Gone, completely dead and no residual headache either... probably because i wasn't prodding, poking, rubbing etc etc for so long.

Man im happy - even though im facing more CH tonight, i have a weapon (or two) i can say actually work!

Im not scared anymore

 

All this in 1 week (or thereabouts)... all from this site and it's Members. Ive been to hell and back over the years without direction nor medical assitance, as we all have, but i now have a direction and weapon to fight the Beast with.

To be honest, i didn't believe the energy drink thing, nor really the O2, but don't stuff around another day longer - go get em both ASAP and just give it a go - it works for me (i hope it keeps working) and im the biggest skeptic around

As you know i like to have a chat, so ill let you know my first time O2 experience.

Initially tried the basic non-rebreather mask as per the O2 thread. 2 problems for me;
1. the 'bag' doesn't fill quick enough (i only have a 15ltr/min reg)
2. i must have a large lung capacity, as even when the bag fills, i can inhale the entire amount with easy and constantly looking for more. I found by taking slower breaths i could fill my lungs, but i want to get that stuff into me quick! I need a demand valve set up 
3. the one way valve for exhalation isn't real good - i could tell i was contributing 'dirty air' back into the bag. I ended up taking a breath, then taking off mask (whislt it refills the bag), exhaling away from the mask, trying to put the mask back on and seal correctly for the next breath - not ideal, but i got the hang of it and as a starter effort, i got it to work pretty damn good.

I have since rigged up a different unit (like the one with the green bag in the O2 thread) and made it completely and 100% efficient. I pride myself as A+++ handyman  so ive got this sucker worked out. Nothing but 100% O2 coming my way next time, and i can keep the mask on my face. The mask has a great seal on it too.....

OK, a quick highlight. Damn you guys for not telling me this. I got snot all over the place  It was dribbling out everywhere and once the pain subsided, i realised i had a great pool of it inside the mask  Hazards of O2 therapy i suppose 

Anyway, off to reseach for a higher flow reg and demand valve mouth piece set up....

P.S. im going to get a smaller O2 set up for the car AND carry a couple cans of Mother energy drink in the glove box so when i return to work im all set (another tip i got from this site). Not looking forward to the warm energy drink from the glove box when the time comes though 

Barry_T_Coles wrote on Sep 27^th, 2010 at 2:08am:

G'day Baz,
good to hear from another Aussie! Funny you abbreviated my nic to Chop... all my mates call me that lol!

Im onto that O2 mate, going hard at it! Good to hear from you.

tks
Steve (i mean Chop  )

P.S. im dying for a stubbie