Hey thanks mate for the reply, I'm kinda after the quick way to "geterdone" as it were, because of the loss of wages thing, although work is awesome and fully understand, the power company and others dont lol. thanks though

Hi Jason

I've put all the info I have about getting oxygen here in NZ in this topic.

The key thing is to get a letter from a doctor saying that you need oxygen for the treatment of cluster headaches. This could be from your GP or a neuro. Once you've got this, you can take it to BOC here in Auckland to get the cylinders, regulator, etc. I use the Penrose branch, but they have other outlets.

You can see a neuro without a referall from your GP. I know of several other people here in Auckland who have seen Dr Kiri Brickell (who I've seen) privately, getting an appointment very quickly.

Often with preventives like verapamil you'll find that many doctors try to use too low a dose to be effective for CH prevention.

Any questions, just ask.

Hi Mike, I am a community respiratory nurse at Capital and Coast Health who was given this forum address by a patient. Obviously as a respiratory nurse, cluster headaches are not my speciality. However I am one of the nurses that oversees the home oxygen service, I had to 'bone up' a bit on cluster headaches, and even for health professionals there is very little information. I know you do not probably feel like hearing defence of GP's but it is a very rare headache and at times I feel like 'foundation of knowledge' on cluster headaches for my peers which is a little bit scary as it is not my main area of practice. We have 200 patients on home oxygen in our DHB and 7 of them are patients with cluster headaches so not that common. You are correct the Ministry of Health does not recommend funding it at the moment, those recommendations were written in the early 2000's when there was not so much evidence regarding oxygen in medical journals for cluster headaches. That has obviously changed. We choose to fund it in our service from the 'admission avoidance ' criteria, it is cheaper to fund the tank at home than fund the patient in the Emergency Department. Plus if we fund it at work, then the patient can go to work which is obviously more cost effective than having a patient at home. Each DHB makes its own decison. In our DHB we required the patient to be seen by Neurologist to confirm cluster headaches and then the neurologist requests oxygen from the respiratory physican who then faxes a script to us and we set it up. All going well it is done in a one week day once we get the script. Patients certaintly have a journey to get the oxygen but once they reach the point of the community health nursing service, I like to think it is very prompt. We deliver pay for it and set it up and will give a second D cylinder for work. The smaller 'A' cylinders do not last long and would only be good for one half hour session and then be empty, which increases logisicals and costs for us which is why we stick to the big cylinders. There are many pros for the A cylinders but that is where we have chosen to draw our funding line in the sand. We are currently putting some information regarding home oxygen on a local GP information site and I will include the criteria for home oxygen for cluster headaches. The Ministry of health is currently reviewing the funding criteria as we speak so if you contact the Ministry of Health and ask to speak to someone who is rewriting the domicilary oxygen services specifications. When speaking to the person concerned my suggestion is to offer to send through  a couple of articles from medical journals, especially 'recommended guidelines' from the various neurologist group. There is a meeting of health professionals regarding these guidelines and we will be recommending that cluster headaches will be funded. If that is agreed to then it will get easier to get the home oxygen.

Hi Mike,

I really appreciate your knowledge of the treatments for cluster headaches; particularly from a kiwi perspective.

I'm a 27 year old male, diagnosed about 3 years ago and have thus far muddled through the pain with Sumatriptan tablets and energy drinks.

Thanks to some of your insights I asked my GP today for an oxygen treatment option and he's reccomended I try the Auckland City Hospital as I live nearby. Am keen to explore 02 as an abortive and will look into a personal oxygen tank if it works out for me.

As an aside, where do you source high potency Vitamin D3 in NZ? Countdown and health shops seem to have mostly 1000IU which makes for a lotta pill swallowing to try to get to the reccomended levels discussed in this forum.

I've just started another round of skull-crushers and am pretty motivated to try different things to stay on top of the beast.

Cheers mate,

Dylan

Mike NZ wrote on Jul 16^th, 2012 at 3:17am:


The same seems to apply in Australia - I haven't been able to find Vit D in any larger dosage than 1000IU.

Dylan Bird wrote on Jul 20^th, 2012 at 5:54am:


Until you've tried preventives you've no idea if the side effects outweigh the benefits. However I know that the side effects I get from verapamil are minor in comparison to the number of CHs I just don't get due to it's preventive action.

Mike NZ, Wrote.The highest D3 i've found in NZ is 1000iu.

This also applys here in Australia, so i get mine online from
the US, 5000iu.

Hoppy.

I know it is a different country, but since NZ is part of the Commonwealth the guidance in GB might be of help to you if you show it to your Dr.  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; In particular 1.3.27 and following.  Don't know if it is helpful or not.  It is a royal shame we have to go through so many hoops to get something so benign and inexpensive.

Jerry

Hi we are new to this support page and it was so awesome to find it.We are having great difficulty getting oxygen for my husbands cluster headaches. He has not had a severe episode since 2006 and we ended up in A&E IN Whangarei hospital where they put him straight on oxygen which gave him relief within about 5 - 10 minutes so its been 10 years and we are here again only this time we have had three A&E visits in just over a week and as always straight on the oxygen and he is able to sleep. It has been very frustrating getting drs to listen  and understand what we are dealing with a 30 minute trip to hospital in the early hours of the morning having to wake two primary school age children and drop them to grandparents not to mention time off work for both of us. Yet if oxygen was at his bedside it could have been quite easily dealt with. We were told it would be a 2-4 month wait to see the respiratory clinic at the Whangarei hospital but with a few phone calls we have managed to get one for Monday morning. We had another GP appt today with a GP who is filling in while my husbands normal GP is on holiday we had already seen her on Monday and i had emailed information and video clips on the benefits of oxygen which she kindly took the time to read and looked into even further so has been most helpful she wanted to check up on him today so we did that while we were waiting the nurse came out and informed us we would have a long time to wait to see respiratory clinic as Darren is a smoker ( is currently in process of giving up has not had one in 2 days) i told her we had an appt on Monday. Saw Dr she was pleased we had an appt so soon while i was in chemist getting prescription the hospital called to say they had cancelled his Monday appt after talking to the respiratory  nurse. I said do not cancel that appt make sure you hold it and raced back to see the dr and tell her what had happened and she was shocked and was going to ring hospital but also thinks it is the smoking issue.I realise they have guidelines to follow it seems so bloody pc he never smoked inside anyway and these attacks usually only strike early hours of the morning so not like he is lying in bed smoking. They say its a risk of explosion .  So if they refuse to see us i guess how only other hope is going through BOC if the GP is willing to write a prescription my husbands work already has an account so would not be a problem also will try a appt with neurologist privately but he is out of the clinic until Tuesday and so is his nurse.My biggest fear is him overdosing as i had not realised he had been doubling his medication in desperation.It is so bloody hard trying to get anyone to listen and he seems to be on that much medication its ridiculous!!

Hi Mike,
Thanks so much for your reply we really appreciate your advice.
The Dr from the respiratory clinic called back this afternoon and told me it would be a complete waste of time going to see her as she knows nothing of cluster headaches so she is going to talk to a colleague and neurologist on monday and see who can see us. As i tried to explain to her i had information i was going to send to her regarding our  appt so she could be better informed on the use of oxygen in cluster headaches but the hospital would not give me her email address to send it to! Thank you for sending info on the specialist that you see it could end up being very helpful.We are two days without an episode but still to early to hope this is over. The medication he is on is rizatriptian,verapamil,tegretol and predisone.  Really appreciate your help.

millerJane wrote on Mar 4^th, 2016 at 3:24am:


Rizatriptian is what he will have been told to use when he has a CH, however there are a few issues with this. First off it can take about 10-20 minutes to take effect as it has to be absorbed via your digestive system, which is a long time to wait when you're in the middle of a CH. The injectable sumatriptan is a lot, lot better as it'll take effect in about 5 minutes but there is a supply problem in NZ (and many other countries) with none available. I've also heard of issues with the rizatriptian supply which will no doubt be from people who can't get the injections turning to use rizatriptian. There is a limit as to how many and how often you can use it too (no more than 3 per day with a gap of at least 2 hours between).

Verapamil is a CH preventive, with people commonly needing between 240mg and 360mg a day although some need up to 1000mg a day. It takes 7-10 days for a dose change to take effect and dose changed should be done working with a doctor. You also need to have regular ECGs as it can impact the PR interval. Doubling up this drug is not something he should be doing without seeing his doctor, especially is it reduces blood pressure too.

Tegretol (also known as carbamazepine) is another drug that can be used as a CH preventive (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ), however it isn't one that is mentioned as being used on this forum too often. I'd review the patient info documentation for this drug - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Predisone is a short term preventive normally give as a taper dose that starts high (say 80mg/day) and it reduces to nothing over about 7-10 days. It is normally given to allow a longer term preventive, e.g. verapamil, time to build up to an effective dose. It should not be given medium or long term as it can cause significant issues including joint damage. Again this is not a medication to double up on.

It can be painful to get contact info for medical staff, so offer to print some of the info off (not all of it as that will be too much) and deliver it to them. Alternatively ask them to look on PubMed and to search for "cluster headache oxygen" and they will find medical journal articles showing how oxygen can abort cluster headaches.

You can look at the info yourself too:

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

I'm hoping that the two day gap is the end of his episode, but do find out all you can in case it isn't and it will be also useful for the next episode too.

Hey Mike and all. Mike your a true legend I hope people message regularly to let you know how valuable your sharing of this info is. You took the time to PM me back in December 2015 and recommended Dr Kiri Brickell - whilst my cluster episode had finished she diagnosed me with CH and now 2 years 1 month later (same period between 2013 and 15) it is back and I know what I'm in for at least and my GP in papakura read the letter she wrote me and started me on Predisone, Vitamin D (but really not great as I don't understand the doses and the other vitamins that Batch recommends it seems are hard to get by themselves or in the recommended doses so I haven't started taking the others yet - any local help here would be awesome. I've got a prescription of 50000 iu I think is the term and my wife also got me 1000iu from the health store - big difference so not sure what to take to hit the dose I require for effectiveness - I understand the prescription is a loading dose which says 1 per week then 1 per month after 4 weeks, didn't quite understand).
The sumatriptan the doctor gave was pill form and hasn't been that great but it has worked it's just hard to know when to take the pill as it takes a while uto work, for example at 6 tonight I felt the beginnings of a headache and took one, 3 hours later I feel a few shadows but no attack occurred but now have to see what happens tonight, which then leads to me thinking I should take another before going to sleep to avoid being woken up or, being a bit of a hardcore kinda guy was tempted if I got thrust awake tonight to chew it before I swallow but realize in reading the forum that this could result in overdose - the explanation that the injections contain way fewer mg than the 50mg in the tablet but your digestive system only allows a certain amount of the 50mg to metabolize thus  chewing it up could see a much higher dose administered - makes sense now.
The next step will be back to the GP to ask for:
- Referral to Keri again through public system, I don't have medical and paid heaaaps to see her last time and from there ask her about a drug you mentioned verapimal and also to get her to recommend oxygen for treatment in the community.
- Ask GP to write letter of recommendation for medical oxygen and go open account with BOC asap.
The GP and A&E Dr read the letter and were pretty liberal but perhaps not incredibly thorough to write up the scripts, both knew about clusters and encouraged to dose if need be to the max of 6 pills within 24 hours if need be to stay pain free this cluster episode.
On a couple other notes I openly admit that CH has made me consider all sorts of crazy things, suicide and signing out is a thought that comes to visit often if I'm honest, I just know my clusters usually last 5 weeks or so thus I can see the light at the end of the tunnel. I'm blessed with a beautiful wife, a fantastic step son, 2 beautiful border collies I know I've much to live for. The other emotion as a sufferer is self-worth, my dogs deserve the park, the beach. My wife deserves my love, my time, and affection, my step son also deserves my friendship and guidance in life - it's hard to give those things when I'm in a cycle, it makes you feel like they'd be better off without you. It's a hard path to walk. The emotional toll is high, I don't cry much if ever - the pain doesn't make me cry, it produces anger and despair - it's those things above I find myself being hit the hardest and at times lately I've cried barrels. Crying feels good particularly when you never or seldom do.
Does anyone still reading the forum know of the Dean Watson treatment for headaches? I'm going to look at exploring this and having the first session of discovery to see if it will help; I'm not sure it will but much like the Dr Shevel solution, it's hard to see the forest from the trees when you read their reasons and logic, they often resonate and make sense.
I'd love to know if any of you have experience with either in recent times, I realize that it's been posted about a few years ago.
Again thanks Mike for your contributions, you have stared me on what I think is the right path to get on top of this disease (I refuse to call it the beast, gives it a certain  power I don't want it to have, it immortalizes it)
Pain free blessings to all, sincerely.

Gidday Mike & any other Kiwis that might be reading.
Thanks for giving me a call the other week, it was highly awesome of you and the info you and others have shared to date has been awesome.

As in my post above, I've had two epsiodes before (2013 and 15) - both in December and lasted around 4-5 weeks.
This time there was a wee delay, the 13th of January this year. I popped myself off to my GP armed with an understanding that I was dealing with cluster headaches (nightly headaches, once every 2 years, same time of year, incredible pain located behind right eye and right temple, waking pretty much same time each night around 1-1:30am)
My Doctor wrote a script for Predisone (12 day tapered dose) and sumitriptan tablets.

I have kept a diary this time and this has helped me track when the first headache started this time, what medication I've taken and when I've had headaches.

After doing more reading here and speaking with Mike, I decided to start the D3 regimen and all the co-factors.
I did more reading on D3 and found a useful post that explained loading doses so I read until I understood, I have started on a loading dose (GP prescribed me the 50,000iu D3 tablets to get my started, I opted on the 2 week loading dose) and I started this on the 17th of January. I am now a day or so away from moving to a 10,000iu per day dose along with all the other co-factors.

I havent had a headache since Tuesday the 23rd. I was incredibly scared of taking my last prednisone tablet on Thursday the 25th but I have had 4-5 days without any headache and no prednisone, do others have such success in starting the D3 regimen - it's pretty remarkable but hard to pinpoint that this was the influencer - it most likely is or will have been a combination of the prednisone and the D3 regimen.

I have also seen a headache clinic specialist in Auckland whom follows the Dean Watson approach, and I've done this alongside the D3 regimen so it becomes quite difficult to ascertain what has had the most impact, I'm not regretting either decision though. Again it's hard to know if the densitization of the areas on my neck has influenced my improved situation but I'll take it anyway. It isnt a long term treatment and the skills that she has shared with me in terms of proper posture is good information anyway that I will work into my daily life in the office / car (I drive around a lot, sit at a computer a lot and my posture as it turns out is really poor).

As I move and continue forward with the D3 maintenance program, I'll continue to use this and have my levels tested over the next couple of weeks to ensure I am not sky-rocketing any of the particular co-factors and that my D3 is in the sweet spot.

I also went back to my GP and discussed a couple more things, one of which was to have a letter written to obtain oxygen through BOC. I've opened my account, it was very painless and easy, the team are quite helpful and the bottle and non-rebreather mask will be ready to collect on Thursday (albeit I might just order the mask from here anyway as it is so highly recommended). I look forward to adding this to my arsenal, at this rate I may not need it but if I do, I'll be some what looking forward to taking control back and aborting the damn cluster attack and going straight back to bed!

I also asked the GP to follow up on my previous neuro appointment back in 15 and I said to him that hey, whilst I feel like I am moving in the right direction - I pay taxes, have done since sparrows fart when I started working at 15 so I want a referral to see another neurologist through the public system and I want the MRI that the previous neuro recommended.

The MRI is important, I understand this, and I tell you that since my headaches this time around are a far cry from the pain I experienced back in 13 and 15, it leaves my weary / scared that perhaps it isn't clusters afterall but rather something more sinister, I just have to not freak out I guess and await my appointment. A dear friend of mine has just had the same diagnosis and hasnt been given great news so this topic is front of mind for me at the moment.

I've learnt about the use of magic mushrooms medicinally and I'm interested, sounds like a fascinating hobby and since I now understand a medicinal dose is no where near going to make me visit spirits, see flying elephants and listen to the sounds of beautiful colours, I'm interested to give it a go albeit I'd want to procure them through a safe channel and harvest in a very controlled and diligent manner. I have only started my interest in following this path and I've much more reading and understanding to do before I will entertain breaking the law in my country to add this to my arsenal against cluster headaches.

I am left with a few questions though around the things I've experienced, if you wouldnt mind humoring me please.

Oxygen
1. For those with episodic clusters like I believe I have, once you get an o2 bottle but you're getting so much success with your preventative treatment (D3 or MM etc) - do you just keep the bottle under perpetuity until you need it? I might not have another attack ever (here's hoping) or the next attack would typically be in December of 2019. Am I all good to just keep the bottle I am picking up Thursday until then / forever under safe keeping at my house until I need it / use it all up before taking the cylinder back to swap? The person at BOC said that they recommend maintenance check every 5 years!

2. With the Vitamin D3 Regimen, and the fact that I have had severely reduced / no headaches since I started the 2 week loading dose (even though I am 4 days without prednisone) - what do others feel during their normal cluster when using the regimen? i.e. I still feel a bit of tension in my neck and a bit of noticeable tension in my usual cluster spots.

I also feel quite lethargic / tired - not too keen to do much albeit we have had severely hot weather here, my wife has been in much the same mood so I may be reading into it too much.

I have been noticing the tension I mention more when I awake in the morning, almost as though I've had the attack overnight but it wasn't enough to wake me up albeit left with the remnants in the form of tension in my cluster spots when I awake. Is this something others can relate to? Perhaps this will subside / stop once my episode ends (in the next week or two by history).

3. There is heaps of reading on D3 and I've trawled through many, many posts. Not many posts however talk about some of the long term considerations around popping these vitamin pills daily, I have formed the view that as they are available essentially from a chemist and not a prescription med, for the most part a natural preventative - that I'd be doing myself more benefit than harm in introducing these into my daily life year round and into the future, not just when I expect to have a cluster episode. Is it safe to do so at the maintenance levels, or are there any long term considerations I should be aware of?

4. In reading many blogs, posts, experiences, research etc I do recall a frequent topic being raised about gut health and brain health being related - that most disease starts in the gut. This for me makes sense, I've notoriously been a bad eater, dont do breakfast (now I do! and a good one, toast and bananas etc alongside my D3 regimen), had horrible sales-man lunches (whatever was convenient or no lunch at all) then had the massive dinner at night. This is changing and I'm adopting some good habits in this area but I'm very interested to know of any informative posts that show a correlation between the two and any positive ways to cure the digestive system and return it to as normal as possible.

Thanks for all your advice to date, and pain free wishes to my Kiwi brothers and sisters, and to all on the forum and in the world.