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mattus
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Hi there!
« on: Apr 15th, 2008, 8:54pm »
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Hey All,
 
I'm Matt, from Perth (Australia). My good wife (Jade) found this forum just after midnight, as I was writhing in pain. I miiiiiight just be spending some time here from now on, to see what, why, and how.
 
Thanks!
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Jonny
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Re: Hi there!
« Reply #1 on: Apr 15th, 2008, 9:00pm »
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on Apr 15th, 2008, 8:54pm, mattus wrote:
I miiiiiight just be spending some time here from now on

 
If you have CH there is no other place to be, not many doctors have the wealth of info about CH that is on this site!
 
Welcome aboard.  Kiss
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.

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Re: Hi there!
« Reply #2 on: Apr 15th, 2008, 9:00pm »
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HI Mattus- welcome to the site-  sorry to hear you are having a hard time-  there are lots of people on this site that have great advice and loads of experience dealing with CH.  You'll want to read everything you can on this site - it is very helpful in understanding CH.
 
Feel free to tell us about yourself- how long you have had ch, whether you have been diagnosed, the medication you are taking and/or have taken in the past.
 
Everyone on this site is here to help -
 
kelly
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CostaRicaKris
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Re: Hi there!
« Reply #3 on: Apr 15th, 2008, 10:07pm »
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Hi Matt (and Jade!)  
Welcome.  You're the second person from Perth to recently join!
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Re: Hi there!
« Reply #4 on: Apr 15th, 2008, 10:29pm »
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G'day Matt and welcome to the nut-hut. As others have said, as a cluster-head, there's no other place to be and there's a few other Aussies here, too.  Admittedly they're an unusual mob but I'm the one that can be trusted.
 
Seems to have been a bit of an up-surge in CH down under just since the last election and it looks like this time we can't even blame the kiwis.
 
Give us a hint about how you handle this dread condition, what you've tried etc, and we'll see if we can't help you out a bit with other things your doctors may never have heard of.
 
Importantlly, though, don't let your state-mate Barry talk you into sending him beer. He keeps trying it on with all our new-found Aussie Cluster-mates so just don't let him con you.
 
I'll send you the correct address later.
 
Cheers and beers,
 
Brian up north.
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Guiseppi
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Re: Hi there!
« Reply #5 on: Apr 16th, 2008, 10:18am »
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Welcome to the nut house! What Aussie Brian is trying to say.......at least I think since I never understand what he's saying except for the send beer part Grin is:
 
Let us know what you've tried in the past that has and hasn't worked. When you were diagnosed, how good or terrible your doc is. While we don't diagnose or treat on this board, we can certainly send you off with a wealth of info to take back to your doctor to make sure you don't hurt as much.
 
Glad you found us, hope we can help you!
 
Guiseppi
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mattus
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Re: Hi there!
« Reply #6 on: Apr 16th, 2008, 9:31pm »
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Guiseppe, I understand Brian perfectly - and believe me, the beer's staying in my fridge, perfectly cold and waiting for no real reason to be opened! Grin
 
 
How I handle it? I'm tough. Tonka Tough..... Do you believe me?
 
Neurofen. I can feel these suckers all day long, and they're laying there, in wait, until I relax, then F#*KIN BAM! (A Chopperism there for you Americans), I get all painful. I find myself waking up writhing, and thinking someone's hit me with a sledge. So yeah, it's kind of a pre-emptive strike with a decent pain killer. Have been having them for about 18 months - 2 years (makes me a n00b, right?), intermittently. Really, I can pretty well pinpoint when they're going to start - Have had a pretty stressful week, and I knew I was in for some punishment.
 
The 'nut hut'? I like it. I'm a bit nutty myself.
 
I'm 32 (the wife's 21, of course! For the 8th time but), and I'm in retail, but looking for a way out (of the job....). Have been married almost 5 years, and have 2 beautiful fur kids (Rusty and Hobbes) to mess the house up.  
 
Have just found motorbikes over the last 18 months too, but they give me a lot more pleasure than the headaches.  
 
Honestly.
 
Thanks for the welcome!
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Guiseppi
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Re: Hi there!
« Reply #7 on: Apr 17th, 2008, 10:06am »
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We need to get you set up with oxygen!!! Read that link on the left, "oxygen info." Sounds a little wild at first but for a large percentage of us, we can get fast relief using just oxygen. I can abort an attack and be completely pain free in less then 10 minutes. Should definitely be your first line defense against these things.
 
Then read up on the med boards about preventatives. That's a medication you take to reduce the number and severity of your attacks. I use lithium, other popular prevents are verapamil and topomax. Some have to combine the lithium and the verapamil to get relief.
 
While I tip my hat to anyone who can just "gut" these damned things out, there's really a lot of good treatments out there.
 
Glad to hear you haven't fallen for the fellow Aussies beer grabbibg ways.. Wink
 
Guiseppi
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mattus
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Re: Hi there!
« Reply #8 on: Apr 17th, 2008, 10:09am »
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Tooheys Extra Dry and Hahn Super Dry.
 
 
You should just ask Aussies which beer, not IF they drink beer.
 
 
 
 
 
Mate.  Wink
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Re: Hi there!
« Reply #9 on: Apr 17th, 2008, 10:48am »
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Forgive me, Mattus, but I forgot to mention that now you've joined our little club you must be extremely careful with your email account and not open anything that contains words like " Guissepi, free set of steak knives, used car, Empire State building".
 
Regarding oxygen, it's a god-send for many and our good friend Mad Barry of the Outback took time off from hugging trees and frightening the locals to assemble most of the info you need from an Oz perspective, even though he was aided and abetted by his parole officer, Mr Happy.
 
http://mushys.com/kiwi  
 
As you're breezing through all the other info here keep an eye out for refences to things like melatonin, kudzu, and Red Bull energy drinks - all of which provide some relief to many.  Beer vouchers sent the Boomerang Hotel, Mackay (Attn: AB)  have been known to work not just as a preventive or abortive measure but as an actual cure and I'm currently busy typing the testimonials to prove it.
 
Knowlege is our major weapon, mate, and you're in the right place to get it - just watch out for people like Guissepi.
 
 
 
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Re: Hi there!
« Reply #10 on: Apr 17th, 2008, 12:43pm »
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Hey Mattus and Jade,
 
Welcome aboard.  When you get around to using oxygen therapy to abort your attacks, shoot me a PM and I'll send you the latest.  There's also a supplemental guide to using O2 on OUCH site at the following url:  
 
http://www.ouch-us.org/medications/oxygen/o2links.htm.
 
I'd love to visit Perth again.  I made two very memorable port calls there when I was flying Phantoms off USS Midway.  The Wednesday afternoon beer races on the Swann river were a hoot!
 
Take care,
 
V/R, Batch
 
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mattus
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Re: Hi there!
« Reply #11 on: Apr 17th, 2008, 8:59pm »
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Ohhh, the F-4, how beautiful was it...! The Midway? I never got on that one. Nice boats but!
 
 
 
 
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Argonaut
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Re: Hi there!
« Reply #12 on: Apr 18th, 2008, 7:07am »
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Hi Matt,
 
Welcome to the boards Smiley I'm the other recently-joined Perthian here Wink
 
I haven't been formally diagnosed with cluster headaches, but IMO, all my symptoms point to CHs. I'm seeing a neurologist on the 24th and hopefully it will be the beginning of less pain.  
 
Interesting how you describe it as being hit by a sledge - when the pain is bad,  I often say that I would like to have a sledgehammer for my head.
 
My headaches usually occur on a three-four week cycle, then I might have a respite for a few weeks before it starts up again. Before hearing about CHs, I have tried Nurofen, Nurofen Plus, Panadol, Panadeine, Mersyndol and Panadeine Forte [one GP prescribed that for me] - all to no avail. At the moment I am taking something called Sandomigran - which is meant as a preventative - but it's mildly effective at best.
 
I'm starting to explore the option of oxygen myself, and Barry has a nice setup which you might be interested in looking at.  
 
PS: Beer - TEDs and Hahns? VB? Good lord, you guys have no taste!
 
I just had some James Squire Porter earlier, that was fantastic Smiley
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mattus
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Re: Hi there!
« Reply #13 on: Apr 18th, 2008, 10:02am »
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The Squires Porter is fantastic....
 
 
That gives me a thought (see main board).
 
 
O2 will be explored my Jade and I (she doesn't get them), I checked that url, and BOC will get a call from me soon.
 
I got diagnosed with clusters by a doc in the ER at Joondalup hospital (my local), some time between 2 and 4am. Up to that point, they were just bloody painful!
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Sandy_C
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Re: Hi there!
« Reply #14 on: Apr 18th, 2008, 2:30pm »
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Hi Mattus and Jade (Jade, I love your name)
 
Welcome to, as Brian called it, the nut nut.    Between our Aussies and our Brits, not to mention our Swedes, Norwegians, just about anywhere in the world, I have begun to learn quite exotic  Roll Eyes terminology here.  I love it.
 
Seriously, welcome to this family.  Among the names that have been evolved for this place, one is the called the boat.  We are all in it, and every family member is expected to pick up an oar and start rowing.  So grab your oar.  You are in for the ride of your life.
 
There is more combined knowledge from the people on these boards than you will find anywhere, including all of our collective doctors.  
 
Read everything you can, hit all the buttons on the left of your screen - there is a wealth of information there.
 
And, Jade, join up yourself.  We have a wonderful board here devoted to supporters.  Our supporters are the most priceless jewel in our battles against CH.
 
Both of you, ask any question, no matter how dumb you think it might be.  We've all been there.  When I first joined, I was told the only dumb question was the one I didn't ask.  
 
So, ask away. Vent, cry, yell, share.  We have strong shoulders, and we'll do all we can to help you.
 
Sandy
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Re: Hi there!
« Reply #15 on: Apr 18th, 2008, 11:14pm »
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on Apr 18th, 2008, 10:02am, mattus wrote:
I got diagnosed with clusters by a doc in the ER at Joondalup hospital (my local), some time between 2 and 4am. Up to that point, they were just bloody painful!

 
Good lord, you live in my vicinity Wink  
 
I actually wish I did the same as you during the height of my headache cycle - I had one a very  bad headache once at the Indian Ocean Brewery in Mindarie, where I basically made a public spectacle of myself and a friend had to drive me home. My worried family wanted me to go to the hospital but I was stubborn and refused  Grin
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Re: Hi there!
« Reply #16 on: Apr 19th, 2008, 5:32pm »
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Welcome aboard.  You have been given some good advice already, so I won't repeat it.  
 
I would, however, caution you to watch out for the beer while in cycle.  Many clusterheads find alcohol to be a trigger.  
 
Jerry
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