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.

G'day Alex,  welcome,  and happily we have a man in NZ who's been known to offer the odd bit assistance to other ClusterHeads.

I'm only the other side of the ditch if that's any help as well.

Full steam ahead and damn the torpedoes!

Brian.

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

It's changing all the time, mate, and Mike really is the man to talk to.  He's also a good bloke but don't tell him I said so.

Go the Wallabies!

B.

roger that

will wait for him to get back at me

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

Mine's a simple story.  Ten years of un-diagnosed hell followed by ten years being treated as a guinea pig by un-knowing physicians.  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.

Happily there are far, far better preventive and abortive regimens available today than ever there were forty years ago,  and I constantly reccommend every sufferer consider all possible options so to allow them to make an informed decision about the own health and future.

Like all ClusterHeads I know from the inside what a nightmare this can be but there must always be better days ahead  -  the one belief that truly kept me going this long.

There's always better days ahead.

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.

thanks to you both and Mike, nice to speak with you last night. We will catch up again soon.

at some point i will document my findings so far and upload to here and with any luck this will help someone else out''have ordered D3 bits and pieces and will try when it arrives and update progress

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?

alex s wrote on Jun 7^th, 2018 at 1:27am:

...did your CH stop when you stopped everything?

Not by a long shot,  Alex,  but I'd found that a lot of the medications either weren't helping at all or were leaving me even less capable of dealing with what was going to happen anyway. 

Then a top-class neuro landed me with a massive overdose of Ergotomines and I said,  "That's Enough!"

My initial plan in stopping everything was to clean out my system completely and then try individual medications one-by-one to see which were worth continuing with and which were part of the problem.  I may have been toward the end of a cycle at the time,  and it was a bloody doozy I can promise,  but I found that individual attacks were becoming more clockwork, clean and manageable.

I continued to ride the tiger drug-free through subsequent cycles and happily they became shorter, fewer and further apart and it's been easily six years now since I've had to wrestle the monster we know so well.

Now I'm not reccommending this as a cure,  or a pathway for anyone else who must live this nightmare,  but it was a plan of attack that worked for me and I've never looked back. 

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 ;D

Alex,

You've two of the best supporters there in Brian and Mike. Both men I look up to with great regard. When they speak, I listen.

I'm with Brian in thinking a lot of our problem is exacerbated by the drugs we are given. I, and quite a handful of others, firmly believe Verap is what took me chronic. I had been episodic with no treatments from childhood until my early thirties when I found a Neuro who was knowledgeable in CH. He tried me on Verap, and my cycle never ended. We just kept upping the dose and upping the dose until the side-effects became too dangerous, and the cycle never stopped.

I'm not saying don't use Verap if it is working for you, but I would not increase the dosage if it quits working. You are already far over the highest amount at which it has ever been tested, and once you reach your toxic level, you will never get rid of the side effects. I'm not a doctor, and don't play one on TV, but I've had the side effects now for about 30 years, and it just is not worth the risk in my estimation.

So glad you found us, and certainly wish you didn't need to be here! We're here for you, and will do what we can. One positive note: get oxygen and look into the Vit D3 regimen. Both have no side effects, except good health overall, and have been very effective for quite a large number of us.

All the best!
jlc

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....

G'day Hannes,  go the Wallabies,  and I'm over the ditch so can't say specifically about the rules and regs in your patch of country but thought I'd jump in just to say hello.

Welcome aboard and it's only onward and upward from here.

PS:   Go the Wallabies!

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

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.

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

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.

Thanks Mike an Brian,

So great of you to take some time and give me all this info, will do a lot more reading in the next days for sure.
Yes MRI is correct, in Germany it’s MRT, got that mixed up.

Thanks again for the support!
Cheers

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.