Cluster Headache New Zealand
A New Zealand patients guide to managing cluster headache.
If you are a sufferer of cluster headache in New Zealand, you may find this page helpful in navigating this complex disease. My name is Craig Stewart. I am a New Zealand cluster headache sufferer whom has navigated the disease since 2013. The views expressed here are simply my own and in no way are to be construed or taken as medical advice.
This article was published on 2nd March, 2024.
You may view the main page here.
Welcome
If you have found this webpage then I am guessing you find yourself a sufferer of cluster headache, either at the early stage of diagnosis or a cluster warrior who has suffered with the disease for sometime. I am sorry! As a sufferer of cluster headache since 2013, I know how truly difficult the disease is to live with and how helpless you may feel if you have not found a preventative treatment option that keeps you in remission and the clusters at bay.
In this article I am going to share with you a little about my journey with cluster headache, how I have been able to achieve pain free remission from cluster by and large since 2015 and some advice that I believe you will find helpful as well as some useful links to support groups and resources that I recommend you utilise.
Listen to my Story...
My Personal Journey with Cluster Headache in New Zealand
It was November the 7th 2013 when I got my first cluster headache attack. The first time you experience an attack, you’d swear that “this is it”. I elbowed my wife awake whilst gripping the right side of my head believing I was having an aneurism. I’ve often said the best way to describe the pain is to eat an ice cream or drink a super cold drink too quickly, brain freeze – imagine sitting with that level of pain not for 30 seconds but for minutes or even hours on end, multiple times for day, for weeks and in my case, months on end.
I pleaded with her to drive me to hospital knowing the wait time for an ambulance would simply be too long to bear given the pain I was experiencing. I begged her to drive faster as I rode up the passenger seat in the car, my head cradled in my hands, rocking back and forth trying to ride through the searing pain behind my right eye and temple, my nose blocked, my eye tearing. We arrived at Middlemore hospital and rushed in, hoping to be seen straight away. Wait times in emergency rooms in this country have long been an issue. By the time I was seen by a Doctor hours later the attack had subsided, I was worn out and just wanting to go home, thinking this was a one-off and thanking my lucky stars I was still alive. I was given some pain killers and sent on my way.
When the attacks returned the next night, I booked an appointment to see my Doctor in the hope of finding an answer. “Your Mum has just recently died, this is stress,” came the response. What ensued over the following months until the first season of attacks finished in March was pure hell. I would nurse myself through the nights, mostly pacing in my garage so as not to disturb my wife. I’d grimace my teeth and rock my head in my hands.
The first attack would hit shortly after I fell asleep, and I would have multiple attacks throughout the night. 11pm, 1am, 3am – I found myself at 5am swigging whiskey straight from the bottle in the hopes of getting just a few good hours of sleep to be able to make it through another day not knowing that alcohol is one of the most well known triggers for cluster headache.
When the attacks returned early November of 2014 I was beside myself. I recall breaking down to my wife and telling her, I’m just not tough enough to be able to go through this again. I would cry daily. I had lost hope. I started to believe she was better off without me, I didn’t want to burden her with a life married to someone with a chronic medical condition, what joy would I be able to offer her? At this stage I was still none the wiser as to what was going on with me, I was in a state of despair.
Getting a diagnosis of Cluster Headache
It wasn’t until early 2015 when I paid to see a neurologist here in Auckland that I finally received a diagnosis of episodic cluster headache. Partway through my second cycle, I was introduced to a front line abortive – sumatriptan and a popular “bridging” medication, prednisone. I found sumatriptan only semi-effective given my first course was supplied as 50mg tablets, I’d wait an agonising 25 minutes or so before they would kick in. As you’ll be familiar with the immense pain, you’ll sympathise when I say that I started chewing those tablets during this cycle for them to take effect quicker, not knowing that this is dangerous and only leads to a higher chance of rebound headaches caused by sumatriptan overuse, slap-back attacks as we call them in the cluster headache community.
The neurologist did write some notes at this time including a recommendation to my GP for oxygen in the community as well as mentioning to me at the time that they had heard Vitamin D3 may be effective for cluster headache and also mentioned some sufferers find success using psilocybin, i.e. magic mushrooms. In regards to Vitamin D3, the neurologist had said to me “I can’t tell you how much to take but I have heard Vitamin D3 can be effective for cluster headache.”
Suicide Headache... Ungh.
I got through that cycle and later that year, in November of 2015 when they returned again, at least I knew what I was dealing with but it didn’t make it any easier. Sumatriptan wasn’t cutting it and was giving me rebound headaches. You can only use prednisone for a short period of time and my cycles were lasting from November to March, even then it was only partially effective in reducing the number of attacks for me. At this time my mental health spiralled and I started thinking about suicide. Only another cluster headache sufferer will be able to understand, the pain is just so severe and the sense of helplessness so great, I had started making arrangements, having moved from suicidal ideation to planning to take my own life. I had gone as far as withdrawing money from my account to purchase a firearm.
It was at this time a couple of interesting things happened. Firstly, I found a doctor from my online searching from South Africa that was claiming to cure cluster headache, his initials are E. S. It seemed legitimate, testimonials and all. I had a meeting with my employer, explained to him that I was going to South Africa and that I would require a few months off work. I had planned to mortgage my house in order to be able to afford the flights, accommodation and surgery. It was also at this time I joined a number of support groups on Facebook for cluster headache sufferers. I quickly learnt from those other “cluster heads” that the treatment I was planning to undertake in South Africa was a scam, he is often referred to as the butcher. I was incredibly disappointed but also thankful I hadn’t spent a tonne of money on false hope or worse, permanent disability.
At the same time I also found a number of websites as well as comments on the Facebook cluster headache support groups where people were advocating for Vitamin D3, something called the Vitamin D3 Anti Inflammatory Regimen for Cluster and Migraine Headache. This was now the second time I had heard about Vitamin D3 for cluster headache, originally having had the recommendation verbally from the neurologist I had seen earlier in the year. My initial thoughts were – yeah right. Vitamins. To an extent I was fairly angry, having been let down with the false hope of E.S. as well as having a preconception about vitamins, most probably you do too – how could a vitamin do anything for cluster headache, the most excruciatingly painful medical condition known to mankind and how dare these people be suggesting such a treatment?
Something within me said Craig – just order the vitamins and give it a go, what have you got to lose? I dowloaded the information I found over at clusterheadaches.com, read it top to bottom, once, twice, three times until I understood it then went to my doctor with the print out to order the lab tests and to ask him to prescribe the Vitamin D3.
Going it alone...
The response from my Doctor, looking back, shouldn’t have been a surprise. I had seen the same response when we had talked to my mothers oncologist about an alternative melanoma treatment. They look at you like you are desperate, and the fact of the matter was that I was indeed desperate. He was not willing to order the lab tests that the regimen called for but was happy to prescribe a 14 day script for prednisone as well as prescribing the Vitamin D3 (cholecalciferol) with an instruction to take one per month for a total of 12 capsules at 50,000iu Vitamin D3 per capsule. He briefly read over the guide that I had printed detailing the Vitamin D3 Anti Inflammatory Regimen before handing it back to me and saying it was unlikely to work.
I ordered the other supplements from iHerb as per the guide I had found which included magnesium, fish oil, vitamin K and a mens multi with trace elements of boron, zinc and retinol. I started the prednisone and decided that I would roll the dice and try the Vitamin D3 Anti Inflammatory Regimen even though my Doctor had refused the prerequisite lab tests.
Not wanting to wait for the iHerb delivery, I hurried over to my local pharmacy to find as many of the items on the list as I could. I found magnesium, a mens multi-vitamin and fish oil locally but was unable to find the vitamin K. I started taking the Vitamin D3 on the same day I started taking the prednisone. I had an immediate reduction in the frequency of attacks as soon as I took that first prednisone tablet but I knew that they’d return with a vengeance in 14 days if the Vitamin D3 Anti Inflammatory Regimen didn’t work, it felt like I was on borrowed time.
I rolled the dice and decided to try the Vitamin D3 Anti Inflammatory Regimen
I was definitely nervous taking what I considered at the time to be such a hefty dose of Vitamin D3 and to continue taking 50,000iu every day for 12 days for a total of 600,000iu, particularly when my Doctor had said to take one per month and warned that it may be toxic at the levels that the regimen was suggesting (incorrect as it turns out, here is the LD50, the lethal dose at which 50% of subjects perish for Vitamin D3 is 37mg per kg – turns out you’d need to consume a lot of Vitamin D3 in one sitting, far more than was being instructed in the regimen guide to come anywhere near close). Needless to say I persevered, pushed the nerves aside and continued to take the Vitamin D3 and waited with baited breath. On day 8 of both the prednisone course and after starting the loading protocol of Vitamin D3, the clusters stopped.
I remember that day. I woke up in the morning and again elbowed my wife awake. I said “I’ve slept through the night!” I hugged her. I cried that morning, tears of relief. I felt like I had my life back. How could this possibly be? I was in a state of bemusement. I continued to finish the prednisone course and completed the loading dose of 600,000iu Vitamin D3 alongside the cofactors that I had sourced locally and on day 15, I still remained pain free. Even though I’d finished the prednisone course, the clusters didn’t return!
December, January, February, March – no cluster headache!
I couldn’t believe it. I was beside myself with joy. I had gone from being on the verge of picking up a firearm and taking my own life to being back to my normal chirpy self, all because of a damn vitamin! Unbelievable.
Fast forward a year to November 2016. November the 7th – for me my clusters are like clockwork. I had the first hit of the cycle, the following day I went straight back to my GP, ordered a script of prednisone and picked up the 50,000iu capsules again and applied the same strategy that I had the previous year, and experienced the exact same result. Day 8 or 9 and the clusters were gone again. Once again I couldn’t believe it, I mean – once, maybe – possibly a coincidence but twice? I was about ready to count my chickens; in fact I did – for me it was a revelation and the experience opened up a world to me that I didn’t know existed.
I made a decision at this point, having spent a lot of time reading and learning more about Vitamin D3 that vitamins aren’t just something you find down the aisle of a supermarket that equate to nothing more than expensive urine; particularly Vitamin D3, it’s a lot more complicated and important than I had previously recognised. I decided I would stay on the Vitamin D3 regimen all year round and maintain my Vitamin D3 level in the range of 80-100ng/ml (200-250nmol/L) through sticking with the maintenance dose of 10,000iu per day alongside the cofactors. November of 2017 came and went, no cluster.
The same in 2018, 2019, 2020, 2021! No cluster headache!
It was in 2022 that my cluster returned in November. By this time I had been reading pretty much consistently every week about Vitamin D3 and its role in the human body. I had made a personal connection with Pete Batcheller, the founder, creator and fellow cluster headache sufferer that came up with the Vitamin D3 Anti Inflammatory Regimen to the extent that I called Pete that year and said, “Pete, what the hell. My level is bang on perfect and the clusters have returned, my level is 99.3ng/ml!” The phone goes silent. Pete replies in his usual firm confident American voice, “Take 600,000iu Vitamin D3”. I said, “Pete, your hearing is going in your old age (Pete is 78 years of age as of 2024), my level is already bang on where it should be – why am I getting cluster!” The phone goes silent again, Pete says in an even more authoritative confident tone, “Take 1,000,000iu Vitamin D3”.
At this stage I’m like – this wise retired fighter pilot and absolute gem of a man has saved my bacon once before in introducing me to the Vitamin D3 Anti Inflammatory Regimen and I know Vitamin D3 is nowhere near as dangerous as my Doctor had intimated, I took his advice, started loading 100,000iu of Vitamin D3 per day and on day four the clusters are gone again – gone. I elevated my level a bit higher that year through loading Vitamin D3 but the cluster vanished as quick as it had arrived. I have yet to have another attack since this date which would mean I have been by and large in remission from cluster headache now for 8 fantastic years. I honestly don’t think I would be here if I had not found this regimen.
If you’ve got this far, then I want you to know that there is hope. Vitamin D3 is incredibly safe and highly effective for cluster headache. I have since had messages from people all over the world whom have watched the podcast I made to share my experience. One sufferer from Belgium had been dealing with cluster for 25 years, his neurologist had said to him that he might as well try the regimen as he had no other tools left in the toolbox – 2 weeks later, he is sleeping the night through. His email to me started with the subject “Enchanted Craig”. He tracked down my email and reached out to share his experience. How amazing is that?
This is echoed through the cluster headache support groups on Facebook. You’ll find many singing the praises of Vitamin D3 for cluster headache. It’s safe and it’s probably the most effective natural remedy for cluster headache that exists today. Feel free to watch the podcast on this page and make sure to check out the comments section. The social proof is overwhelming.
You’ll find links below where you can learn about the Vitamin D Anti Inflammatory Regimen for Cluster and Migraine Headache. The information is free and neither Pete Batcheller nor myself are selling anything nor make a penny from your purchase of supplements – buy whatever brand you like, you’ll find no affiliate links on this website.
Clinics offering Adjustments of the Neck
If you are searching for cluster headache help or treatment options in New Zealand for cluster headache you are likely to see targeted ads and websites from headache and migraine clinics offering a solution by way of upper cervical spinal adjustments, often they rank highly in Googles search engine when searching terms like “cluster headache NZ”. They claim if they can replicate the pain of cluster then there is a high chance they’ll be able to offer a positive outcome using this technique. Be cautious of these treatments! They may be sincere people however I have personally seen little to no evidence by way of feedback from the cluster headache patient community over the years that these treatments work.
In the early years of my journey with cluster I tried one of these clinics with no success and it is my view having spent a lot of time in patient communities and cluster headache advocacy work that they are unlikely to help and can be very expensive. A prominent New Zealand based neurologist had the following to say about these methods of treatment in this article (of which I contributed alongside Dr. Kiri Brickell and others).
But Hill is unconvinced. In her opinion it’s a “waste of time” and not something she’d ever recommend to a patient. “I’ve never ever been aware of physio being a helpful thing for cluster headache. There are some clinics in New Zealand who are targeting patients with headache and migraine, but their techniques as far as I’m aware have no evidence that they are more effective than other physio techniques,” she said. “There isn’t anything magic about what they do and it certainly wouldn’t be anything that I as a neurologist would refer a cluster headache patient to.
Where to from here for the New Zealand Cluster Headache Sufferer?
If you are wanting more information about the Vitamin D3 Anti Inflammatory Regimen including the free guides as well as to watch an interview podcast I filmed with Pete Batcheller that explains the regimen using simple language and illustrations, then you are welcome to visit the main page linked below. All the information is supplied free of charge and I pray that you find the same relief and success that I have experienced following this regimen.
There are some remarkable people you’ll meet in the cluster headache community. Cluster headache sufferers are amongst the most kind, generous and caring people I have met in my life. I have made lifelong friends through these communities. I strongly encourage you to join the following cluster headache support groups on Facebook.
Australia New Zealand Cluster Headache Support
Cluster Headache Community (TAC)
Cluster headaches (trigeminal autonomic cephalalgia)
You will find many in these patient groups discussing alternative treatment options including Vitamin D3 as well as using psilocybin mushrooms and other psychedelics for the effective treatment of cluster headache. Whilst I have had amazing success with Vitamin D3, I have never needed to use this alternative option however I can tell you from following these groups since 2015, many cluster warriors have found success using this treatment option. Cluster Busters is an amazing patient outreach organisation and offer guidance should you wish to pursue this option.
https://clusterbusters.org/resource/the-dosing-method/
If social media support groups are not for you there is another web based forum that is a little less active however is full of helpful resources and threads that discuss pretty much every aspect of cluster headache. I thoroughly recommend joining the forum at Cluster Headaches.
Oxygen Therapy for Cluster Headache in New Zealand
Oxygen therapy as a front line abortive is incredibly effective for cluster headache, it is by far a preferred choice to using sumatriptan. There is no limit to the amount of times you can use oxygen to abort a cluster headache over a 24 hour period, it is relatively affordable and it works much quicker than sumatriptan tablets and comes with a far greater safety profile.
If you see a neurologist ensure that you get them to write a letter recommending oxygen at home / in the community to be used as a front line abortive therapy for cluster headache. You may take this letter to your GP whom can write a letter to BOC instructing them to authorise the supply of oxygen cylinders for the management of cluster headache. From there you can send the letter to BOC whom have a medical team that is familiar with cluster headache, they will setup your account allowing you to either have oxygen delivered or collect the medical sized cylinders (D2) from one of their collection points.
A few things to note here, for oxygen to be effective you need a quality non-rebreathable mask. Fortunately DJ over at clusterheadaches.com has them in stock and sends them out super quick. If you ordered one today it will arrive in about 7-10 days via FedEx. The link to the Cluster o2 Kit is below.
https://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
You’ll need a regulator that connects to the medical oxygen cylinder and your mask that provides a sufficient flow rate of pure o2 at a minimum of 10-15ltrs per minute, any less (such as what you will get from an oxygen concentrator) is simply not enough to be effective. Regulators can be expensive if purchased in New Zealand so I recommend purchasing a regulator from an overseas site like eBay. I have provided a link below to search eBay for the appropriate regulator. If you are needing one right away, then I welcome you to reach out to me using my contact information below and I will send you one to see you right until your one arrives.
https://ebay.to/3TDP4tr
If funds are not an issue you can purchase an o2 regulator from a local supplier such as Capes Medical, I have included the link below.
https://bit.ly/4edLLBt
Using the right breathing technique is super important when using the Cluster o2 Kit to successfully abort a cluster headache and to prevent slap-back attacks. A slap-back attack is when you abort a cluster headache only to find you have another attack shortly afterwards, usually because you have not stayed on the oxygen for long enough. The video below is one of the best that shows the correct breathing technique.
Purchasing the Vitamin D3 Regimen Supplements
Many reach out to me to ask about where to source the supplements and what to purchase. The brands that are detailed in the guides that Pete Batcheller has produced may be unavailable in New Zealand. I have always used iHerb to purchase the supplements, they arrive in fairly good time. The below links include all of the supplements I use and would allow you to get started with the regimen. I reiterate that none of these links include an affiliate code – I have no interest in making money off cluster headache sufferers, it would feel totally inappropriate to do so, they are provided for your reference only.
I reiterate again if you are considering following the Vitamin D3 Anti Inflammatory Regimen for Cluster and Migraine Headache it is crucial that you discuss this regimen with your Doctor or Neurologist before starting, whomever is most familiar with your condition and overall health profile. There are certain conditions such as hyperparathyroidism or medications that may preclude Vitamin D3 supplementation or therapy. Ensure that you have read the guides top to bottom, once, twice – as many times as required to fully understand the different aspects and elements of the Vitamin D3 Anti Inflammatory Regimen for Cluster and Migraine Headache.
Vitamin D3
50,000iu Capsules: https://nz.iherb.com/pr/bio-tech-pharmacal-d3-50-cholecalciferol-100-capsules/55186
5,000iu Capsules: https://nz.iherb.com/pr/bio-tech-pharmacal-d3-5-cholecalciferol-250-capsules/43985
Note that the above D3 supplements are currently out of stock, refer an alternative option.
10,000iu Capsules: https://nz.iherb.com/pr/source-naturals-vitamin-d-3-250-mcg-10-000-iu-120-softgels/78041
Fish Oil
1,040mg Omega 3 Fish Oil: https://nz.iherb.com/pr/sports-research-omega-3-fish-oil-triple-strength-90-softgels/90284
Magnesium
400mg Magnesium (3 capsules per serving): https://nz.iherb.com/pr/country-life-chelated-magnesium-glycinate-400-mg-90-tablets-133-mg-per-tablet/75750
400mg Magnesium (1 capsule per serving): https://nz.iherb.com/pr/swanson-triple-magnesium-complex-400-mg-100-capsules/111022
Multivitamin
Mens: https://nz.iherb.com/pr/nature-made-multi-for-him-90-tablets/40396
Womens: https://nz.iherb.com/pr/nature-made-multi-for-her-90-tablets/40397
Vitamin K
MK4 1000mcg & MK7 100mcg: https://nz.iherb.com/pr/life-extension-super-k-90-softgels/90368
Methylated B-50 Complex
https://nz.iherb.com/pr/solaray-methyl-b-complex-50-60-vegcaps/73715
Get in Contact
You are welcome to get in contact with me if you feel I can help you or you’d like to offer feedback. It is my sincere pleasure to assist my fellow cluster headache warriors navigate this complex disease.
Fill out the form below to send me a message or email me at craigedstewart@gmail.com
Disclaimer
Nothing that I have discussed in this article is intended to be taken as medical advice. I am not a Doctor and I am not qualified to offer medical advice. In all instances it is recommended that you discuss any treatment option you may be considering with a qualified health professional, ideally the doctor that is most familiar with your condition and health profile. There are some conditions and medicines that preclude Vitamin D3 therapy, do not attempt to start this regimen without first seeking the advice of your trusted healthcare professional. I accept no responsibility for any of the information supplied on this webpage. The information is provided as an account of my personal experience as a cluster headache sufferer only.
