Hi everyone,

I'm new to the site and just by looking around and reading of your experiences has made me instantly feel better :)  Im a 34yr old female and have been suffering with the beast since i was about 17.  I am rather lucky tho as I only have it 'bad' periodically.  Around every 2 years for up to 4 months.  This site is awesome, I was starting to think I was going mad, as when i explained the pain to people they thought I was exaggerating....lol.... I was diagnosed with Cluster Headaches 2 years ago by my old doctor who no longer practices, and by the time she diagnosed them they had gone so no treatment was started.  So when they returned this time, it was a catfight with my new doc and going through all the million n one tests AGAIN! to get some help. This cycle has lasted 3 months so far and i'm hoping the worst is over as the last 2 days the pain has only reached a 6 at worst so I'm no longer trying to smash my head to a pulp on the bedroom wall and looking like a junkie with a droopy eye.  I will be taking a lot of the information i've read about on here to my doctor as all she is prescribing me is pain killers (that dont really kill any pain!)  By the sounds of it Imitrix is good so i am hoping it is available in Australia. 

They are so isolating, I hate feeling like a prisoner to the beast, I have no life during this time and live in dread for the next one, praying it wont be as bad as the last....So thanks to everyone who posts on here and gives advice.  It made me feel heaps better knowing there are others out there as only people who suffer with these things can understand the pure hell of it :)

Cheers  :D

G'day Ovait and welcome.

You've found the best possible source of info about all things to do with CH where people really do understand CH. There are a few other people for Oz here too, plus kiwis and others from all over the world.

Read up here and you'll soon know more about CH that most doctors. Instead of just working with your GP I suggest you work with a neurologist, if possible a headache specialist, to ensure you get the best possible treatment for your CH. Just using pain killers is not effective treatment at all.

Some of the Aussie people will be along in time to explain how everything works over your side of the Tasman Sea, although you can certainly get oxygen as I have done when over in WA.

Not the time to be passive! Seeking any doc with knowledge of Cluster, a headache specialist--if possible, is the best step you can take for you long term benefit. No advantage in simply plowing the same stoney field!

The PDF file, below, will give you the most recent outline of meds used for Cluster, along with evaluation of effectiveness of each. Any doc you see should be working from this list and so will give you some idea of how knowledgeable the doc is. If you must stay with your present doc, then give him a copy. (Many of us have had to educate our docs so that they can treat us effectively. An interesting paradox!)

---

Go the Kiwi! It's times like this I could almost, repeat almost, forgive some of the crimes committed by the baby-eating AllBlacks against the gentlemen of the Australian team.

G'day Ovait, and welcome. As Mike says, there's heaps of info here and people to answer almost all of questions. Start by reading everything to do with Oxygen and don't worry that doctors are chary about prescribing it - there's plenty of ways around it.

Regarding Imitrex, here in God's own it's called Imigran but don't get fobbed off with the pills. A terrific medication but useless to us as it's so slow to kick in.   You need the injectables or at least the nasal inhalers but don't be surprised if you need to pawn your first-born to afford them. Sad but true.

Have you yet come across references to Red Bull drinks? Many people are getting a bit of relief by guzzling one down at the first sign of a hit and no, I don't have shares in the company. Most important is to remember that beer is a trigger so I'll do the right thing, take it off your hands, and ensure it's returned to Mother earth.

You're amongst friends now, darlin'.  We understand.

Welcome home.

Glad brian piped in....but on a cautionary note, DO NOT SEND THE MAN BEER  as it's like putting milk out for a kitten, you'll never get rid of him! ;)

Another strong vote for oxygen here, check out this link on how it's used. I went from 90-120 minute attacks to quick 6-8 minute aborts just by huffing oxygen. Cheap, no side effects, fast, not much to dislike:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Welcome home, so glad you found us.

Joe

Hi Ovait & welcome, your amongst good people here.

Heed Joe's warning that Brian is a lovable waskal.

Where in Oz are you, it helps to know where people are as we have lists of practitioners who are knowledgeable in treating CH & you need the best you can get.

Cheers
Barry

hi again everyone, thank u so much for replying and welcoming me :)

I will be taking all the info you guys have sent me to my doctor.  I'm so surprised myself to see that these things are more involved and complicated than I originally thought.  Every other time I've just put up with the pain and soldiered on and I see now that it doesnt have to be that way if you get the right doc to take you seriously and do their job properly.

I live in Cairns, Qld and have finally been referred to a neurologist, but I'm waiting for my appointment to be made and sent out in the mail.  I dont know how long that will take as it's going through the public health system at the hospital... But it's better than having no positive direction at all so im super excited  :D 

And Sorry Brian, unfortunately I dont drink alcohol...lol...

I'll be in Cairns this weekend and know a good pub that makes, I'm told, a perfectly good cup of coffee.

My shout and we'll whinge about neuros while I tell you the truth about Guiseppi's porkies.

Honest Brian,

0406 068 295

Sounds like you have perfect timing ovait with Brian being in town. You'll have chance to learn more from Brian than you'll do in 10 neuro visits combined.

AussieBrian wrote on Apr 19^th, 2012 at 3:42am:

I'll be in Cairns this weekend and know a good pub that makes, I'm told, a perfectly good cup of coffee. My shout and we'll whinge about neuros while I tell you the truth about Guiseppi's porkies. Honest Brian, 0406 068 295

What the hell did he just day????? [smiley=confused.gif]

Joe

;D

AussieBrian wrote on Apr 19^th, 2012 at 3:42am:

I'll be in Cairns this weekend and know a good pub that makes, I'm told, a perfectly good cup of coffee. My shout and we'll whinge about neuros while I tell you the truth about Guiseppi's porkies. Honest Brian, 0406 068 295

Hi Brian, thanks that would be good. Coffee sounds great. I cant wait to meet you, a fellow clusterhead   :)  I've been reading all the info that people have been sending me, and tell ya the truth i'm blown away by it all. Its a lot more complicated than i originally thought.

And Guiseppi's porkies sounds interesting..lol...   ;D

I'll give ya a call today sometime :)

Hello and Welcome Home

  So very glad you found us . . . and especially glad you're going to be able to hook-up with Brian (I've always wanted to get a CLOSE look at the outback  rig he drives . . . curious about how large his cooler is. 

  He will also be able to tell you the fastest way to obtain 02 . . . really is a miracle abortive for most of us.  I've been chronic for eleven years and for ten of those (since coming here), oxygen has been my only abortive.

  DO give the energy drinks a try . . . they really do help many, and also (for me) seem to shorten the abort time when used with the 02.  I would also use icepacks rubbed about the affected side.  The combination of all three seemed to work well for me.

  Sounds like your cycle is near it's end, . . . but you might want to read up on the D3 regimen and try and start same when your next cycle is due.  Go to the "Meds, Therapies,Treatments" board and read the "123 Days PF and I think I know why . ." thread.  I have not had an attack since mid-November and others are finding relief as well . . . haven't purchased any 02 tanks since 10/13/11.

   Be Safe,    PFDANs

     Richard

Guiseppi wrote on Apr 19^th, 2012 at 9:16am:

AussieBrian wrote on Apr 19th, 2012 at 3:42am: I'll be in Cairns this weekend and know a good pub that makes, I'm told, a perfectly good cup of coffee. My shout and we'll whinge about neuros while I tell you the truth about Guiseppi's porkies. Honest Brian, 0406 068 295 What the hell did he just day????? [smiley=confused.gif] Joe ;D

I think he's calling you names, Joe...on the other hand, I wish I could talk like that!  ;)

Blessings. lance

Guiseppi wrote on Apr 19^th, 2012 at 9:16am:

AussieBrian wrote on Apr 19th, 2012 at 3:42am: I'll be in Cairns this weekend and know a good pub that makes, I'm told, a perfectly good cup of coffee. My shout and we'll whinge about neuros while I tell you the truth about Guiseppi's porkies. Honest Brian, 0406 068 295 What the hell did he just day????? [smiley=confused.gif] Joe ;D

Here within lays a translation:
My shout = I will pay for the drinks. :)

we'll whinge about neuros = we'll say all the nasty things about the block headed Medico's who know nothing about our condition & charge us a squillion $$$. >:(

the truth about Guiseppi's porkies = never let the truth get in the way of a bloody good story. ;)

therein lays a tale, end of lesson back to the sand pit.

Cheers
Barry

Ahh, Joe's post now makes sense as Brian's made perfect sense to me in the first place.

Met uup with the lovely Ovait and fair dinkum it's hard to believe she's a CHead. I mean, she just looks so normal! Got a lovely axe collection, even if her favourite was away being cleaned

Anyway she's now better prepared and thanks everyone at ch.com. Even Guiseppi.

A HUGE HUGE HUGE thank you to AussieBrian, who i was lucky enough to meet and have a drink with yesterday :) I drank coke while he put away the pots like a true Aussie :) And also to Barry_T_Coles, who I spoke to on the phone :) 

I cant thank the both of you enough for your kind words of wisdom, support and advice.  I feel now, that if I cant beat the beast, I'm definitely now ready to rumble with him, I'm not gonna allow him to destroy my sanity anymore...lol..

Barry told me many great things about the people on CH.com who he refers to as his family, and there is obviously a deep respect for everybody world wide who has to battle with this beast.  And it's through websites like this that people are able to connect so a big thank you to the administrators of this site :)

So thanks once again everyone for your help, advice and the loads and loads of reading material that I am still getting through, I kinda feel like i got my life back, (if that makes any sense) and I recommend to everyone, that if the opportunity arises to meet up with a fellow CHead, do so. 

:D :D :D

  Did you ever think that in just five days you would find an international family that truly understands this beast of ours?  I was a basket-case when I got here 2/02 . . . and finally finding others that KNEW the pain of the beast and more than willing to provide the ammo to help me live with same.

  Thanks again DJ and all that have helped maintain this family.

  OK Joe . .  you're retired from the force and shouldn't have to worry about Internal Affairs . . . so what's the real story about the "porkies"?

  ovait . . . do keep in touch with your progress and we'll all celebrate when this cycle ends for you.

    Be Safe,   PFDANs

      Richard