Hi there from New Zealand.

So my name is Sara, and I'm married to Kevin (Kiwi Kev). I registered as him as he's the sufferer, but I can type faster than he can :-P We live on a farm in South Auckland, New Zealand. A bit of a background:

Kevin's been diagnosed with CH via his GP after approx 10 years of suffering not knowing what it was.

He has used the tough it out method (so NOT a method), calcium channel blockers that lost their effectiveness and Imigran tablets for the headaches. GP once prescribed two courses of prednisone when one cycle persisted and that kicked it. Three years ago another GP prescribed Verapamil (240mg/ day) and Sumatriptan injections which worked well for the last two cycles. This latest cycle doesn't seem to be so good - still getting one CH a day and having to use the Sumatriptan after five weeks of this current cycle. They did start to subside (not get any for a few days), but after going away for a weekend they ramped up again. Sumatriptan is incredibly effective if caught early enough, takes 5-10 mins to kick in if CH left too long to establish).

The only alternative treatments he's tried are putting magnesium spray on his forehead, taking mineral/vitamin supplements, but these don't seem to have any noticeable affect. Have not tried D3, but have seen it mentioned on here.

Being a farmer, Kevin's used to hurting himself (fingers crushed, cuts, scrapes and heavy objects dropped on toes etc!), but he's a tough bloke. The ONLY thing that stops him in his tracks are his CHs (or 'secret shame' as he refers to them). Now he's in his mid-40s he can't 'push through' like he used to and he's had the last week off work just resting and will most probably have next week off as well. He becomes anxious about when the next attack might happen, and that anxiety/ stress can feed another CH. It affects our family as he's not available to help around the house or with our child, and that in turn affects me (Sara, his wife), as I have clinical depression and the lack of rest ends up affecting my mental health as well. Don't worry, I'm not saying poor me - Kev's CH's are NASTY!!! It breaks my heart to see him writhing around on our bed in agony and groaning in pain knowing I can't help. Cycles were around every 18 months and lasted around 8 weeks, but this latest cycle came after just 6 months and after 5 weeks is not slowing up (yet!).

We feel we have a pretty good understanding (thanks internet!) of CH, but are keen to read up and find out more from this site. Specifically we're really keen to explore getting oxygen to have available at home as the Sumatriptan is hard on the kidneys. We found this site by googling and found Kiwi Dave's post about getting oxygen in NZ (thanks Dave!!, we're in Takanini, so in your neck of the woods), so I'm going to sort out a GP/ Nurologist visit for asap next week to get the ball rolling. We'd also be keen to read up more on D3 and see if that's something that would help - why not?!

Anyway, that's us. I'll pop on over to the supporter posts, but wanted to get this up and on the site as Kevin's not met anyone that suffers here. Feel free to respond like you're talking to Kevin - he can read just fine, it's the typing the scuppers him!

Thanks a mill and apols for the novel - Kevin's a man of much fewer words than I ha ha!

PS Anyone know why they're called cluster headaches and not cluster migraines? Trying to explain to people that CHs are exponentially more painful than a common garden headache can be hard!

Sara & Kevin,

Welcome to CH.com. Lots of advice and support from a worldwide group here.

Here's the first bit of advice.....get a Neurologist who specialises in Primary Headaches to confirm the diagnosis. While it sounds like you've got a good GP there, there are other headache types that mimic the symptoms of Cluster Headaches and there are a lot of tests that need to be carried out to ensure you have the correct diagnosis (and therefore treatment).

There are various preventatives and abortive that we could recommend you try, but we are hesitant to do so until a formal diagnosis is given.

Having said all that, there's no reason not to start reading the various threads here, which are very informative.

Peter.

Hi All

Thanks so much for the warm welcome and the e-beer Brian - the safest kind to have at the mo'!

I (Sara) have been on the phone this morning and have GP visit sorted for tomorrow where we'll ask for a letter for the oxygen and a referral to a neurologist. I've already called and made an appointment with the neurologist pending the referral - 24 July was the first available appt (eek!), but it's with Kiri Brickell Dave, so we look forward to having a good talk with her and get a more formal diagnosis.

We'll head off to explore the D3 too, I've done quite a bit of reading over the weekend, but still lots to absorb!

Another beast visit at 8.15 this morning, thankfully Kev has the sumatriptan injections, so that one's gone and hopefully we're one closer to the end of the cycle.

Big hug from me and a firm handshake from Kev!

Cheers

PS Brian, Kevin's really keen to have a talk - can't believe you're just over in WD!, so we'll be in touch

Oh man I'm SUCH an egg, I can't believe I've called you Dave and Brian, Mike - douh!  Kinda where my brain's been at...confirm we've got script from the Dr for the O2 and I managed to find a couple of disposable non-rebreathing masks from a place in Mt Wellington. Now just to try it out - which I'm keen to see if it works - Kevin not so much of course!!

For those later Kiwis who are reading this thread at a later date, Dr David Thompson and specifically Dr Gretchen Laubscher at Torbay Medical on the Nth Shore, Auckland are who we've been dealing with and they've been excellent and open to helping us. Gretchen in particular said she's happy to prescribe whatever we've discovered works - in her words "as long as it can't do harm, then why not try it". We also plan to keep in touch with her about the success we have with the O2 and Vit D3 so she can help any other patients with CHs.

We also got 50,000 iU Vit D tabs prescribed from the Dr to be taken every two weeks. I know you said the daily dose is better Mike, but we thought we'd give it a lash seeing as it was on prescription.

Thanks for the tip on asking for a cancellation, will call back and put Kev on the list. And thanks a million again for talking to us Mike - we're feeling more clued up all the time. Unfortunately Kev got one at 12.30am and 8.30 am this morning, so he's picked up another attack in the 24 hrs cycle, but at least we have O2 now!!

Cheers
Kev and Sara

Hi Ryan and welcome

Time to get your GP educated a bit as the South Island should work just like the North Island for how you should be able to get your CH looked after.

Whilst the brand names for the injections of Imitrex or Imigran aren't funded, we can get the generic form of the injections, i.e. sumatriptan, on a standard doctors prescription.

Asking a good pharmacist is the most reliable way to tell if something is funded. And even for stuff which isn't funded, they can normally obtain it from their wholesalers, although expect the price to be a lot higher than getting say a dozen (or more) on a NZ$5 prescription (US$3 for those in the US).

It is possible to get medical oxygen in NZ too. I've had it direct from BoC and via my local DHB (CMDHB), although it took a bit of effort to get the DHB to do so. I wrote extensively about this at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

For more info on using oxygen - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

People have also used welding oxygen when they can't get hold of medical oxygen, telling the gas supplier that they are taking up welding or similar.

Having both the oxygen and the injections means that you can kill off CHs pretty quick. And both can be effective in about 5 min or less, which is so much better than using the sumatriptan pill or riding it out. Plus you can take the injections where it isn't as practical / possible to carry around an O2 cylinder, like flying, etc.

There is a store on this forum where you can get a great non-rebreather mask which is perfect for CH (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ). It is a lot better than the standard disposable ones you normally see.

Another trick is to drink an energy drink with caffeine / taurine as quickly as you can at the start of a CH (Red Bull or similar) and it'll help cut down the CH duration / intensity. This should help whilst you've only got the sumatriptan tablets.

With verapamil, whilst most people respond well to between 360mg and 480mg a day, sometimes people need more and have gone to 1000mg a day, but working with their doctor and including regular ECGs as verapamil can modify the PR interval, hence the regular monitoring. How high you can go can be dependent on your personal medical history.

There are also two forms of verapamil, which are the instant release and the sustained release. Some people find that one form works better for them than others. No easy way to work out which will work best for you other than trying both. But remember it takes about 10 days for a dose change with verapamil to become effective, so don't change too soon.

An alternative to verapamil is using vitamin D3 which has been effective for over 80% of people who have tried it. I've been CH pain free for over 5.5 years using it, so I can strongly recommend you read up about it - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

We all know just what its like to have CHs as unless you've had them you can never really understand just what it is like to have them. So given your limited arsenal of weapons against CH, having to ride out most of them, it is no wonder you're feeling like you're having a bit of PTSD. I'd also get that looked at too as it can be addressed too.

Hope you'll be winning soon and ask any questions you like. You've people here from all over the world (even Aussie) with lots of CH experience and knowledge.

Day from over the ditch, Ryan. I can't forgive you the All-Blacks but CH is a common enemy so history wins out.

Sing out if I can help in any way and it's my first shout regardless.