hi all. newbie here, but had CH for about 3 years. keen to talk with anyone in NZ, specifically auckland who also has CH

out of interest, use verapamil (approx 800mg)to hold at bay and Clustran injections if it hits.

gday brian

thanks for the warm welcome. if you mean mike d, i have just pm'd him. seems weird that there arent many people on here from NZ in light of how many people (statistically) have it

roger that

will wait for him to get back at me

whats your story mate? chronic / episodic? Verapamil and sumi injections?

Hi Alex and welcome (thanks Brian for the pointer for me to check in for a fellow kiwi)

I'm more than happy to help out any kiwi, plus those over the other side of the Tasman and further afield.

I've been on here a few years and there have been a few of us post here over time, but I'd be surprised if there have been more than 30 or so. Since the incidence is about 1 in every 1000 people there should be about 1,500 people with CH in Auckland and about 4,500 of us across NZ.

So the question is why so few of us here? It's almost like that tourism advert for Oz from a few years ago which ended with "where the bloody hell are you?".

I expect a lot will be quietly suffering alone, not knowing what good advice there is out here. Plus there are other support groups like ones on Facebook, etc.

I've replied to your PM.

Hoping this is the start of making things improve for you.

Brian, meant to ask: 

" The next ten years I took it all in hand myself, then around ten years ago I gave away all medications and therapies.

Best decision I ever made and have been pretty much pain-free for a long time now."


so how has this worked? did your CH stop when you stopped everything?

interesting.

am sadly not brave enough to "ride the tiger" without any form of chemical help.

am glad they finally died out for you - what a relief that must have been

Hey Clusterheads friends....
Got diagnosed last week, after a few years with long breaks. But the last 3 weeks have been the worst so far, that’s why I finally went to a doc.
Started me of on Prednisone, and will get triptane injections to take home tomorrow. I was told oxygen would not be available in nz for home, that I would have to go to hospital to get oxy. Anyone heard something different ?
Trying to get Mrt in the near future and to find a specialist...happy for recommendations, Dunedin area preferred 
To much fun, can’t wait for the night to begin....

Hi there and welcome

Getting started on prednisone should help get your CH under control quick, but it is only good for short term use, typically around 10 days, whilst a longer term preventive is started. Using it long term isn't good, especially for your joints.

Have you been started on a longer term preventive, like verapamil, lithium or topamax? The prednisone is normally used for short term relief as these take a while to build up to an effective dose.

The sumatriptan injections can work great, just ask for a dozen or more at a time and be thankful we only pay $5 for the prescription, they can cost 10+ times more each in some countries.

You were told incorrectly about oxygen as I've had it, both arranged privately through BoC, I just needed a letter from a Dr saying it was needed for CH. Plus I've had it through my local DHB. My adventures in getting it can be read at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Do also read up about how many of us are using vitamin D3 very effectively with many going CH pain free for multiple years. All the info is at the link below, plus Batch who put it together is a regular here and he is always happy to help people.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Not sure what you meant by "Mrt". Did you mean an MRI? This is normally part of the tests doctors do to confirm that something is CH as there are multiple other conditions which can mimic CH, so to get the diagnosis correct it is a case of confirming symptoms (easy bit) and ruling out all other possible causes (the really hard bit). This is why we strongly suggest people work with a headache specialist as most doctors, even most neurologists don't have the skills or experience to work effectively with CH.

Read up, there is a huge amount of useful info here and ask all the questions you can think of.

You're about to take control of your CH and that transforms things totally.

Wlcome Alex and Hannes

Alex - there is a link on the left of your screen, headed "where we live".  Check it out to find other CHers in your area.

Hannes - the triptan injections are great for CH but they tend to go off like a nail gun.   On the left of your screen is a link headed  "imitrex tip".  Check it out for a much gentler way of using the injections, which also makes them last longer as you can take half a dose, which is still ample to kill off a CH.